Jon's CML Diary

A Look Back at 2011

2011-12-27T16:30:00.000-05:00

CML has started to take a backseat in my life and I hope it stays there. I have had continued to be monitored for my blood work and my numbers remain steady and even. I am having PCR tests done at both Dana-Farber and in Portland, OR. What I find interesting, or perhaps frustrating, is that my numbers at Dana-Farber come back undetectable, but the same test in Oregon is coming up with slight traces of leukemic cells. They are very small amounts and still represent a major molecular response. It almost seems pointless to have the testing done in Boston when the results are more sensitive, and therefore, more accurate in Oregon.

In other CML news, we had our annual Light the Night Walk again this year. My daughter, Mia, took a more active role in fundraising this year and ended up being the largest fundraiser on our team. The walk took place at a new location, which was a little strange, but still a nice turnout. We raised about $4000 as a team. Mia recently received her award for being a Bright Light (raising over $1000) and she could not have been more proud. I think we found a new team captain for next year.

I also recently received an interesting letter from the father of a friend of mine from college. A fraternity brother of mine had passed away before his junior year after having a bone marrow transplant for leukemia. This was back in the early 90's before Gleevec was on the scene. Based on the letter from his father, it sounded as though my friend had CML, but was not lucky enough to have this life saving medication. His father was soliciting for a leukemia research foundation and did not know me personally. I sent him a letter back explaining my situation and the similarities between his son and myself. His son Jon, and I, both had an interest in juggling. While we were in the house together, we would often practice together. Little did I know I would struggle with the same diagnosis that eventually took his life. It made me realize how lucky I really am.

Looking ahead to 2012, I have another appointment soon at Dana-Farber and we are heading back out to Portland in May. That is a great time to visit. Mia asked if she could come out with us this year because she wants to hug Dr. Druker. I feel the same way.

Light the Night 2011

2011-09-15T12:45:00.000-04:00

It is that time of year again when we start fundraising for a very important event, the annual Light the Night Walk for the Leukemia and Lymphoma Society. Team Gershon has been participating in this wonderful charity event for 6 years now and we have raised a lot of money thanks to generous donations from people like you.

As most of you are aware, I was diagnosed with a blood cancer (CML) in 2006 and have been lucky to benefit from a ground breaking medication, Gleevec, whose development was funded by the Leukemia and Lymphoma Society. For this reason, my family, friends, and I have been participating in this event and try to raise as much money as we can for this wonderful cause.

This year's walk takes place on October 1, 2011 at a new location, The Garden City Center in Cranston, RI. The walk begins at 7:00 pm and is a fun, family-oriented event. Please join us in this walk and fundraising effort. Another change this year is that my oldest daughter, Mia, is trying to do her own fundraising as well.

The link will take you to her page and you can donate to our team under her name.

Mia's Light the Night Page

I thank you in advance for your support which will make a difference in the lives of thousands of patients battling blood cancers.

Light The Night Walk is The Leukemia & Lymphoma Society's evening walk and fundraising event. It is the nation's night to pay tribute and bring hope to thousands of people battling blood cancers and to commemorate loved ones lost.

By joining our team and raising funds for this important cause, you'll be making a real impact on the fight against cancer. On Walk night, you'll join us with other teams and individuals from all over our community in the culmination of our efforts to find cures. Walk night is a family-oriented evening in which participants carry illuminated balloons, raise awareness of blood cancers and come together as a caring community.

Every walker who raises $100 or more* will be a Champion For Cures and will be recognized on Walk night with:
- A Light The Night t-shirt.
- An illuminated Light The Night balloon in red (supporters), white (survivors) or gold (in memory of a loved one)
- A wristband which entitles the wearer to an array of food and refreshments.

We all know someone who has been affected by cancer. Please join the team and "walk the talk."

http://www.lightthenight.org/register/reg/#action=join_team;teamName=Team%20Gershon;teamID=217063;eventName=Providence%202011;eventLocation=Garden%20City%20Center;eventDate=10/01/2011;walkWithMe=true

Portland in the Spring

2011-05-19T10:42:00.000-04:00

So my wife and I recently returned from our annual trip out to Portland to meet with Dr. Brian Druker and Carolyn Blasdel. We usually try to make this an extended trip since it is such a long plane ride. Since we have another trip planned over the summer, we made it a quick two-day mini vacation for us. Portland in the spring is usually quite beautiful. That was not the case for this trip and we hit cold and rainy weather.

My visit with Dr. Druker and Carolyn went quite well. I am progressing exactly as they had hoped. Due to my low numbers and time since diagnosis (5 years) the chances of any recurrence of the CML is quite low and grows lower with each passing day. They kept me on my dosage of 600 mg of Gleevec for now. Even on this lower dosage, my numbers have been good.

We had a discussion about a European study where some patients were taken off Gleevec altogether. Although this was a smaller study, about half the patients were able to remain off medication without a return of symptoms. The other half had a return of symptoms and went back on Gleevec. Fortunately, almost all of them went back to a positive response when the medication was restarted. Essentially, what this might indicate is that for some people, Gleevec might be curative, while for others, it might be a maintenance medication. This is a radical shift in how people are thinking about this type of treatment. Due to the lack of research at this point, no changes were proposed, but it is interesting to watch the next phase of research in this field.

I did receive my PCR from the Oregon lab after we got back. My number was 0.004. This was consistent with my previous findings at this lab and remains a major molecular response. I always find it interesting that my blood work at Dana-Farber comes back undetectable, but the Oregon lab seems to find a couple of cells. This has to do with the sensitivity of the PCR test and the particular lab where it is performed.

Anyway, towards the end of our brief trip, my wife and I did the Chocolate Walking Tour of Portland. We had a fun time, although it was raining and freezing. We tasted a lot of chocolate and I never realized the varieties of chocolates out there. The most interesting was a chocolate flavored balsamic vinegar. Who would have thought that this would taste good.

Great article abot Gleevec and Dr. Druker in Smithsonian

2011-04-24T19:27:00.000-04:00

Great article in Smithsonian Magazine talking about the history and development of Gleevec as well as the crucial role that Dr. Brian Druker had in treating CML. We are approaching the 10 year anniversary of FDA approval of Gleevec. It was a great read and highlights what an incredible individual Dr. Druker is. I am looking forward to seeing him in a few weeks.

Click on this link to see the article.

Still undetectable

2011-04-14T12:48:00.000-04:00

Good news that my latest results from Dana-Farber came back as undetectable. I have had 5 straight reading of my PCR at Dana-Farber as undetectable. What is less clear is whether this would be the case at the other blood lab I use in Oregon. I go back and forth between the labs. Regardless, the numbers are all good.

I did want to share a video from the National CML Society that my CML buddy, Wanda, told me about. It is a talk by Dr. Michael Mauro from the Oregon Health and Science University about the latest in CML research. He is apparently speaking this weekend in New York City as well.

An Evening with the CML Experts from The National CML Society on Vimeo.

The New Dana-Farber

2011-03-30T10:01:00.000-04:00

So I am sitting in the waiting room at the new Yawkey Building at Dana-Farber for my 6 month visit. It is already an incredibly different experience and more reminiscent of my experiences at Oregon Health and Sciences University. First, the parking lot was much larger and there were plenty of spots. I am sure that arriving at 7:30 AM helped with this. I then went to the laboratory on the second floor. That is all that was there. It was quick, clean, and efficient. I also noticed that privacy was much more of a factor. They called patients by their first name and last initial rather than their full names which had always bothered me in the past.

After my blood work was done, I went up to the 8th floor where there was a leukemia and lymphoma clinic. It was not crowded, wide open with plenty of seating. There was even a "nourishment" stand where I was able to get a nice tea. There is even a nice monitor with announcements for the hospital. One notice just said that if you have time, you can borrow an ipad to keep busy. A man even came around offering me a newspaper which I gladly accepted.

I was quickly taken into have my vital signs done as well. This was efficient and a much nicer set up.Then things started to get messy. The power went out in the whole building and the staff had to scramble to figure out what to do. Since all the records, lab results, and scheduling are computer-based, they were pretty much helpless. I ended up being taken to see my doctor about 45 minutes late and he had no information about me other than my name. I had to give him a brief synopsis. He was able to find my lab results which were normal. I am waiting for my PCR results which take about 2 weeks. No significant changes.

As I was about to leave, the power went back on. Despite the technical difficulties, it was still a much more pleasant experience than what I was used to at Dana-Farber. I happened to stop on the 3rd floor where I found the healing garden and the dining pavilion. Not bad.

Five Years

2011-03-03T12:35:00.000-05:00

It is hard to believe that I have reached the milestone of 5 years past initial diagnosis, but I have. I guess time flies when you are having fun. It really is a poignant moment to reflect however. It was not that long ago that people with my diagnosis were told they may only have 5 years to live. I am so thankful that I was lucky enough to be a recipient of ground-breaking medical treatment.

I remember that day 5 years ago vividly. I actually ripped the day off in the calendar in the hospital as some sort of memento. All I wanted to do was eat the Chinese food I had picked up after work. Instead, I got "the call". and reported to the ER immediately. It was all surreal what happened over the next couple of weeks.

I really have been so lucky to continue to respond well to Gleevec and essentially live almost symptom free. I am so thankful to my family and friends that have supported me and continue to do so.

I head back to Dana-Farber at the end of the month. I also go to OHSU in Portland in May. Let's hope the good results continue.

Volunteer of the Year

2010-12-18T10:08:00.000-05:00

This past week, I was honored by the Leukemia and Lymphoma Society of Rhode Island. They had their annual volunteer thank you ceremony. Myself and another individual were given the volunteer of the year award. It was a bit of a surreal experience. A fairly large crowd was present at the RI state house. The speakers were up a set of stairs overlooking the audience. The presenters gave long and in depth descriptions about the recipients of the rewards and all of the things they had contributed to the society.

My award was the second from the last. I had brought my family including my two daughters, wife, mother, and and mother-in-law. My girls kept wondering when I would be going up to accept the award. When it was finally my turn, it was a bit of an out-of-body experience to hear Bill Koconis (the executive director of the LLS) read a description about me and why they were giving me this award.

I have been an active fundraiser for the LLS for 5 years now and he noted that our team had raised over $75,000 for the society during that time. In addition, I had participated in their advocacy trip to Washington, DC several years ago and thus was seen as an ambassador for the society. He also mentioned this blog which I found interesting. As I write these posts, I never quite know who reads them.

When I went up to accept the award, I didn't quite realize how big the audience really was until I looked out. I don't mind public speaking, but this felt a little different. I had not prepared anything to say. I had a flashback to the Oscars for a moment. I started talking about how much I valued the society and why I chose to work hard to raise money for this organization.

As I looked out at my family, I saw them all crying. I became emotional myself. It was a touching moment. I also realized that it was one of the only times I had discussed my diagnosis in front of a live audience. My girls did not quite understand why I was crying, nor did I.

I left the event with mixed emotions. Every time I do something for the LLS, it is a reminder of my diagnosis that I am fortunately able to forget easily. Despite this, the organization is such a worthy one, that my own discomfort is worth it to keep them functioning to help find cures for blood cancers and support patients and families affected by these diseases.

In other news, I did receive another PCR test result from Molecular MD in Oregon. The results were again quite good. Although the scores from this lab are not undetectable, they are extremely low. It is quite likely that the same reading at Dana-Farber would have been undetectable due to the sensitivity of the test. Needless to say, I am plugging along.

Light the Night 2010 Final Results

2010-10-18T18:10:00.000-04:00

The final tally is in and the team did quite well again. We raised nearly $7500 for the Leukemia and Lymphoma Society's Light the Night Campaign. This was our fifth year raising money for this wonderful charity and we are pleased with the results. The walk took place on a beautiful fall night and we had a great time. I am grateful for all of you who donated money and appreciate the support.

In other news, later that week, I had another PCR test done at Dana-Farber. Fortunately, it came back as undetectable again. I have now been on the lower dose of Gleevec for about 3 months. I have noticed that my eyes are swelling less, and therefore, I am tearing less than before.

I did learn some sad news during the fundraising. Back in 2006, I had written a post called Not Alone. I had written about a friend of mine from internship who had been diagnosed with colon cancer. Deb and I had talked about writing a book together about the psychosocial aspects of cancer.

I had been out of touch with Deb and her husband, Todd, for about a year. I had sent them a donation request and that is when I learned that Deb had passed away last winter. I was pretty devastated. Deb and I had a really good connection as colleagues, but an even stronger one as cancer patients. I was so sorry to hear of her passing and the impact that it will have on her family and friends. As sad as I am, it also reminded me about how lucky I was to be doing as well as I am.

Light the Night 2010 and updates

2010-08-30T16:14:00.001-04:00

The annual Light the Night Walk in Providence is quickly approaching. This is the 5th year of our participation and it has been a wonderful experience. The Leukemia and Lymphoma Society is a great organization. It has helped me and many other with blood cancers in incredible ways.

This year's event will be held on Saturday night, September 25, 2010 at Lippitt Memorial Park in Providence, RI. The opening ceremony starts at 6:30 and the walk begins at 7. It is about a 3 mile course. For those who have not seen it before, it is very powerful. There are about one thousand people walking down Blackstone Boulevard with lit balloons all in an effort to raise money for this great organization.

There are a number of ways to participate. You are welcome to donate to me or any of my team mates. You may go to my site (Light the Night Page). Any donation is appreciated.

If you are interested in walking, you may sign up as a walker on the same site. On the top banner, it reads "Walk with Us". Please feel free to email me with any questions as well.

In terms of other news, my PCR test came back with excellent results again. My number keeps going down. The level was 0.0008. Excellent news even on a lower dose of medication.

The Summer of 2010

2010-07-08T12:42:00.000-04:00

It has been a long time since I have written on this blog and many people have been requesting an update. It is not that nothing has been happening, but just that my spring was encompassed by a disastrous flood that ruined my office. Fortunately or unfortunately, I happened to be in Disney World when this happened. I returned to an awful mess and some crisis management to keep the business running. The picture is what happened to our computer equipment when 3 feet of water invade your office.

Soon after this disaster, I headed out west to meet with Dr. Druker for my annual visit. Earlier that same week, he was on the Dr. Oz show. Here is the clip below.

Dr. Druker said that he was receiving calls from all over the world because the show seemed to indicate that Gleevec was a miracle pill for many types of cancer.

Anyway, my visit went smoothly and calmly. I had blood drawn and we talked about longer term plans. Dr Druker wanted me to have a Gleevec Level test conducted because he suspected that I might be on too high a dose of the medication and could likely come down from the 800 mg. In order to do this, I needed another kit that was shipped to me and was sent off to the CML Alliance. Unfortunately, due to a dispute with the FDA, the information from the CML Alliance had to be removed from the web.

After our visit to Portland, we jumped on a plane and headed to the Bay Area to meet up with our friends Angela and Russ. We visited Napa Valley and San Francisco and had a wonderful time.

When I returned home, I had the blood work done. I received a call from Carolyn at OHSU letting me know that my PCR level was still extremely low and only barely detectable based on the ultra sensitive tests that they use at Molecular MD. My Gleevec level also came back as quite high indicating that I needed to come down off the 800 mg to 600 mg.

Interestingly, this posed some logistical issues. First, I would need a new prescription which is usually not a big deal under normal circumstances. Due to the high cost of this medication, there is an extensive pre-certification process that has to occur. Also, the pill comes in 400 mg tablets or 100 mg tablets. That would mean I would break the 400 into 2 or get a bunch of 100 mg tablets. The problem with breaking the 400 mg into 2 is that it is released quicker in your body and may produce some side effects.

I took the plunge last night and took my first 600 mg dose of Gleevec. I will have another PCR test in August to monitor my progress and make sure my numbers don't change.

Dr. Druker also talked about some potentially encouraging research out of Europe. Some people with CML and taking Gleevec have been able to come off the medication and have no return of symptoms. Others have tried the same thing and symptoms did return, but disappeared again once Gleevec was restarted. This might suggest that Gleevec could be curative in nature, but there is not yet enough research to determine this.

The other good news is that my office was fixed and we moved back in. This allows me to breathe a small sign of relief.

Customer Service

2010-03-25T15:06:00.003-04:00

So I decided to let Dana-Farber know about my missing PCR test from December. I sent a letter to the head of the Quality Improvement and Patient Safety committee at the hospital. I received an immediate response and apology with indications that further investigations would be under way. The following day, I received a call from another person on the committee apologizing again. Yesterday, I received a letter reporting the findings of their investigation. My blood was drawn in December, sent to the laboratory at Brigham and Women's Hospital, but disappeared from there. Based on my complaint, they are implementing a performance enhancement regarding blood specimen tracking. What is amazing is that the hospital seems to have an extremely updated system. At my last blood draw, the phlebotomist used a wireless machine to scan my ID bracelet and another wireless device to print out the appropriate labels. Despite technology, there is always room for human error.

On another note, I spoke to my doctor today and he reported that my PCR test was still undetectable.

My Letter to Dana-Farber

2010-03-25T15:06:00.002-04:00

This is the letter I sent to Dana-Farber following my missing PCR test from December.

Dear Dr. Weingart,

I am not sure if I should be sending this letter to you, so please feel free to pass it on to the appropriate person. I have been a patient at Dana-Farber four 4 years now. I have had an excellent experience being treated for CML. As part of my protocol, I have routine PCR blood tests every 3 months.

I came in yesterday for a checkup with my oncologist and to have a new PCR test completed. I was stunned to find out that my last test, which took place in December, was never completed. I had come in on a Saturday in December to have my blood drawn. Since it is hard for me to come during the week, I often go to the infusion room that is open on the weekend. After the blood was drawn, I did call my oncologist to check on the results. He reported undetectable findings which I was quite pleased about.

When I spoke with my oncologist yesterday at our meeting, I asked for a printout of the labs from December. He could not find any other tests for that date except for a CBC. Under the PCR test, it said “Pending”. Upon further investigation from the oncologist and his nurse practitioner, the laboratory did not know what happened, but my blood and test results were not processed appropriately.

It is unclear to me who might be at fault for this error. It certainly could have been the nurse who took my blood or potentially the laboratory. Of course, my doctor should also have noticed that the information he provided me was inaccurate as well. Upon speaking to another CML patient who receives treatment at Dana-Farber, she reported that the same thing had happened to her.

I wanted to make someone aware of this issue in case this is a systemic or computer problem. Fortunately for me, my blood work has been excellent so I was not overly worried about my results. I would imagine, however, that if I were newly diagnosed, I would be extremely upset.

I appreciate your time.

Sincerely,

Jon Gershon

These are not a few of my favorite things

2010-03-10T21:01:00.000-05:00

I had my 6 month visit to Dana-Farber today. I really dislike (perhaps hate) going up there. I like my doctor, but it is possibly one of the most depressing and crowded places I have been. It is a good thing I am not claustrophobic. Aside from the 2 hour ride to get there, I also learned that my last PCR test was actually not done. I had blood drawn in December and I called two weeks later to find out the results. The doctor told me it was undetectable, but he was reading my test result from September and not December. I am pretty upset about this for several reasons. On a practical level, I was mad because we drove up to the hospital on a Saturday. I waited two hours for a nurse to draw my blood. Apparently, that same nurse also forgot to send my blood for the test. Also, now I have not had a PCR test for 6 months despite the fact that this is supposed to happen every 3 months. There is nothing I can do about it now.

At today's visit, I had my blood drawn again and it was definitely sent for the PCR test today. My wife also asked about an H1N1 test, since I never had one. Thinking this would be a fast and simple process, I agreed to have this done. I was then told to go to the infusion room. I then waited a half hour. When I got in to have the shot, a nurse comes over with the needle. Guess who it was? The same nurse who lost my blood. I did not say anything because I am sure she has seen hundreds of patients since she saw me last.

Anyway, the waiting game begins again. I will have results in a couple of weeks. In May, back to Portland for a more pleasant oncology appointment.

4 Years

2010-03-03T19:28:00.000-05:00

I just looked at my watch and noticed that date. It has been 4 years since I was diagnosed with CML. It is sort of amazing to me how little I think of this anymore. I do have to go to Dana-Farber next week. Four years ago, I could only imagine myself as a cancer patient. Now, cancer plays only a minor role in my life play. Thank you Gleevec!

I am grateful that I have had such luck in this fight and that CML has not become my life. I owe a lot to my family and friends who have supported me through this whole process. This diagnosis was probably a lot harder on them than it was on me.

I vividly recall that awful night 4 years ago when I got the call about my white blood count. I had just walked into the house with Chinese food. I never did get to eat that soup.

Undetectable

2010-01-07T16:36:00.000-05:00

Yesterday I received my latest PCR test results. Fortunately, they continue to be undetectable or PCRU for those who know CML jargon. What was funny was that I had forgotten to call to get the results until my CML buddy, Wanda, reminded me. Thanks Wanda!

I started thinking that this whole thing has become so normal to me and really an after thought. That is quite different than it was almost 4 years ago where I would dwell on every number or any symptom. I would spend time reading about CML, looking at the message boards, and communicating with others about this topic. Now, it hardly comes up at all. The reality is that I don't really think about it all that much.

The only time it is a reality is when I go to the hospital. This past visit, I went for a routine blood test on a Saturday. The blood lab is not open at Dana-Farber on Saturday so they sent me to the infusion room. I was sitting around with many people who were getting chemotherapy and possibly spending the day there. I really felt out of place. I do have to return in February for a 6-month follow up.

CML has certainly changed over the course of my diagnosis. It has gone from a primary stressor at the beginning, to some background noise every so often. Let's hope it stays that way. Perhaps one day I will be able to say, I used to have CML.

Kareem

2009-11-10T10:13:00.001-05:00

I just came across a number of news articles about Kareem Abdul-Jabbar having cancer and more specifically, leukemia. I quickly discovered that Kareem has CML, just like me. While I would not wish such a diagnosis on anyone, I was relieved to hear that this was the type he had. It was similar to when I heard about my diagnosis and the doctors congratulated me.

I am happy that Kareem came out with this information and happier still that he will be involved with an educational campaign about the topic.

What I found disheartening was the tone that these news stories took. I got the feeling from some that Kareem was on his death bed when that was clearly not the case. He takes the same medication as me which converted this once deadly diagnosis into a chronic and manageable medical condition. Kareem continues to lead a normal life and CML will take a backseat to all of his other activities. I am hoping that Kareem's ordeal and educational will help inform the general public about the miracle of Gleevec.

Light the Night 2009 Wrap Up

2009-11-10T05:58:00.000-05:00

I know that the Light the Night Event took place some time ago, but I have not had a chance to write until now. It has been a busy fall. Here are some pictures that we took the night of the event. It was a spectacular evening. We had a very large group of partcipants from Team Gershon and overall, there was a tremendous crowd supporting the whole event.
Our team did a wonderful job with fundraising and we we raised the most money of any private team in the state. Overall, our total was $9238. Although this is less than we have raised in past year, it is a very respectable number given the economy.

I wanted to thank everyone who donated, walked, or helped with this event. It is a powerful evening for me everytime. This was the first year both of my daughters participated. In addition, I finally had to talk to my oldest daughter about why we were doing the walk in the first place. She started asking questions this year and I knew some of her friends knew about me. I wanted to make sure I was the one who told her about my CML.Although it was a difficult conversation, it was easier than most cancer discussions given my prognosis and treatment options.

In other CML news, there was nice article in the New York Times last week about Dr. Druker and Gleevec. You can read it by clicking here.

Thanks again for making the Light the Night Walk 2009 a magical evening.

A Big Weekend

2009-09-24T12:35:00.000-04:00

This Saturday night is the annual Light the Night Event. I am very excited for this fun event. It will be the first time my daughter, Ava, will be coming. In addition, I will be meeting one of my CML buddies, Wanda, who I have only corresponded with by email.

Despite the economy, people have been extremely generous. We have raised over $7000 and are quickly approaching $8000. Although this is less than we have raised before, it is still a very impressive amount of money to donate. Some people were so generous, they even donated twice (Thanks Blusteins!).

As a reminder of why such an event is so important, two things happened today. Frist, I received my blood tests results from two weeks ago. I remain PCRU or undetectable. That is as good as it can get in CML language. Thank you Gleevec!

In addition, one of my oncologist, Dr. Brian Druker just one a very prestigious award.

Here is the press release from the Leukemia and Lymphoma Society:

LLS-funded researcher Brian Druker receives the Lasker~DeBakey Award

Posted by Samantha Mills on Sep 15, 2009 12:24:55 PM

The Leukemia & Lymphoma Society (LLS) is proud to congratulate Dr. Brian Druker for receiving the prestigious 2009 Lasker~DeBakey Clinical Medical Research Award. Dr. Druker, along with Dr. Nicholas Lydon and Dr. Charles Sawyers, is receiving the award because of their discovery of and successful clinical trials with Gleevec®, a drug that benefits chronic myelogenous leukemia (CML) patients.

Dr. Druker received critical funding from LLS in 1995 for his research on the tyrosine kinase inhibitor, STI-571, later named Gleevec, through the Translational Research Program. He discovered that CML cells that had been taken from patients were killed by this inhibitor. In 1998, Dr. Druker was able to test Gleevec in clinical trials and 53 of the 54 patients who participated achieved normal blood counts.

Dr. Druker continued to receive funding, and in 2000 was awarded additional funds through LLS’s Specialized Center of Research (SCOR) program. In 2001, Gleevec was approved by the FDA.

Many CML patients, who once may have considered their diagnosis terminal, are now leading normal and healthy lives because of Dr. Brian Druker’s breakthrough research. LLS is proud to have funded this innovative research, and appreciates the valuable work that Dr. Druker continues to provide to our patients and their families.

Visit the Lasker Foundation website to learn more about the Lasker~DeBakey Clinical Medial Research Award, and watch this eight-minute video that highlights the important research of these three doctors.

For more information about this award, you can go to the Lasker Foundation Website. According to an email I received about this, many people who win this award also go on to win the Nobel Prize. Go Dr Druker!

Light the Night Update

2009-09-13T19:36:00.002-04:00

I wanted to provide a brief update about where the team stands at this point. As of today, we have raised $3353.00 as a team. There are a few hundred dollars worth of checks that still need to be turned in and counted.

I am hopeful that in the next two weeks, we can increase the donations and walkers on our team and get closer to the goal of raising $12,000.

If you are planning to donate, please do so when you have a chance. If you are planning to walk with the team, please register. You can go to the Light the Night website and register to walk.

Incidentally, I had my 6-month visit to my doctor at Dana-Farber. Since the appointment was scheduled for 9:30, we were lucky enough to hit the rush hour traffic into Boston. It took my wife and I two hours to get there.

This was the first time that things were moving on schedule. In fact, I had to delay my vital signs because my bloodwork had not been taken yet. Once we went into the room, my doctor and another woman came in.

The other woman introduced herself to me and my wife and I assumed she was a physician due to her coat. This was not confirmed, however, until I was able to read her name tag. I am a little more sensitive to these seemingly minor issues because I have been teaching a class at Brown Medical School for 7 years on medical interviewing which incorporates bedside manner. I would have expected an explanation of who this new person was and whether I would give her permission to be in the room. None of this occurred.

My appointment was quick and too the point. Since my bloodwork was not back yet, we had little to discuss. I need to check in a week and a half to get my latest PCR value. When I had this done last time in Oregon, it was undetectable, so my doctor was quite pleased.

Overall, the appointment was good, but I certainly get a very different feel in the waiting room in Boston compared to my experience when I go to Portland, Oregon.

In the meantime, I need to focus on the fundraising and living my life as normally as possible.

Please Donate or Walk with Me

2009-08-10T12:40:00.003-04:00

Light The Night Walk is The Leukemia & Lymphoma Society's evening walk and fundraising event. It is the nation's night to pay tribute and bring hope to thousands of people battling blood cancers and to commemorate loved ones lost.

Team Gershon has been participating in the event for the past 4 years and we have raised an extraordinary amount of money to help fight blood cancers. I have been personally affected by this type of fundraising since the research to develop the medication I take for Chronic Myelogenous Leukemia (CML) was funded in part by the Leukemia and Lymphoma Society. Since I was diagnosed over 3 years ago, my medication, Gleevec, has made the leukemia cells in my body undetectable. CML has gone from a terminal illness to a chronic condition managed by this wonder drug with minimal side effects.

As you can imagine, I think the LLS is such an important organization in many ways. They were the first people I turned to after I was diagnosed and they helped me navigate the confusing world of oncology. I want to make sure I am giving back to them and I hope you will assist me in this request.

You are welcome to help out in a number of ways. Any donation is greatly appreciated. I also invite you to join my team and become a fundraiser yourself and walk with our team. You are also welcome to walk with us on September 26, 2009. Below is some information about the society and how to make a donation or sign up to participate.

Please visit my page at http://pages.lightthenight.org/ri/Providen09/jgers01 to donate or sign up to participate.

The Leukemia & Lymphoma Society (LLS) funds lifesaving research that has contributed to major advances in the treatment of blood cancers and treatments for other types of cancer, such as chemotherapy and stem cell transplants. These treatments have helped patients live better, longer lives. New targeted therapies that kill cancer cells without harming normal tissue are providing drugs and procedures that are improving quality of life.

A donation of $25 provides patients and their loved ones with FREE booklets that contain up-to-date information on their disease and help them make informed decisions about their treatment options.

A donation of $50 makes possible a Family Support group with a trained facilitator where comfort can be found and experiences can be shared among patients and family members.

A donation of $100 helps supply laboratory researchers with supplies and materials critical to carrying out their search for cures.

A donation of $1,000 makes possible one- on-one conversations with health care specialists who provide patients with information about their disease, treatment options, and helps prepare them with questions for their health care team.

Please make a donation to support my participation in the Light The Night Walk and help save lives. Be sure to check my Web site frequently to see my progress, and thanks for your support!

I really appreciate your generosity!!

Light the Night 2009

2009-07-15T16:57:00.005-04:00

It is that time of year again and we are starting to plan for the 2009 Light the Night Event. Despite last year's tsunami during the event, we had a blast and raised a ton of money. In fact, we raised $16,660 and were the top fundraising team in Rhode Island for the 3rd time. You can see the link here.

I am hoping we can repeat our effort this year. I am in the early stages of setting up Team Gershon 2009. I am hoping to have a large number of participants, team members, and walkers. Despite the economy last year, we still managed to raise a lot of money.

This is an extremely fun and profound event. It is held all over the country. The Providence, Rhode Island event is scheduled for Saturday, September 26, 2009 at Lippitt Park at the end of Blackstone Boulevard. More specific information about he walk can be found here.

For those of you who have donated or participated before, I sincerely appreciate your generosity. I would love to have a great showing again this year, and, hopefully, the weather will agree with us. It is truly a family event and the walk itself is a 3 mile stroll down Blackstone Boulevard. Everyone holds lit balloons, as you can see in the picture, to represent blood cancers. The Leukemia and Lymphoma Society (LLS) is a wonderful organization that has helped me out in many ways.

I am inviting people to participate in several ways. You are welcome to make a donation. I am looking for people to join my team and do some fundraising. (I know this sounds hard, but with the internet, this is not that difficult.) I am also looking for walkers for the event. Please feel free to email me. You can also look at my Light the Night Website for more details.

Dichotomies

2009-05-20T17:53:00.002-04:00

I recently returned from an exhausting, but fun trip to the Pacific Northwest. I had my 6 month check-up with Dr. Druker and Carolyn at OHSU. It was rather anticlimactic because I had received my blood test results several weeks earlier as PCRU (or undetectable). This was obviously great news and they were pleased to see such a great result. The plan is to continue to get these tests done every 3 months and return to OHSU in another year. There will be no reduction of the medication for at least 2 years since I am responding so well with few side effects.

Soon after the appointment, my wife and I took a train from Portland, OR to Seattle. This was about a 3.5 hour trip through a beautiful part of the country. We met our friends Russ and Angela out there. We had spent last May with them in Portland and the previous May we traveled together in Italy (where we had met). It was great to see them and we explored Seattle together. Seattle is a wonderful and beautiful city. We did a few things that I would highly recommend for people who are going for a visit. For those of you who have been to Pike Place Market, you know how overwhelming it can be. We decided to take a food tasting tour of the market. The Savor Seattle Tour led by Eric (who you can see in the video on their website) was wonderful. We tried foods from all over the world and got to do things other people were unable to see or do. I would highly recommend this. We also took a tour of the Puget Sound on a boat tour of the locks. This was a fun and relaxing experience. We had a blast in Seattle, despite our overall level of fatigue from the time difference.

On the day we were leaving, we received some upsetting news that a cousin on my wife's side had died of Multiple Myeloma. This is a particularly bad blood cancer that does not have a cure. Jeff (the cousin who passed away) had gone through a transplant several months ago, but his body could not fight it any longer. I admired his fight and we unfortunately shared blood cancer together. Jeff would send emails before he went back to the hospital mixed with humor and frankness. He fought a courageous fight and we visited with his family last night.

When we returned from the condolence call, we received a call from a dear friend of ours. Her father had just passed away from esophogeal cancer after a long battle and multiple surgeries, chemotherapies, etc. This awful news was also devastating and we will be heading to the funeral tomorrow.

Unfortunately, my very positive news was mixed with the sad realities of the devastation that cancer can produce. I know I am extremely lucky. When terrible events like this happen, I am reminded of how serious a matter this is. I have mixed feelings of happiness, sadness, and to some extent some guilt. I have not had to endure any of the hardships that these two men encountered. I realize now why I was congratulated when my diagnosis was made.

PCRU

2009-05-05T19:01:00.003-04:00

I received a call from Carolyn, the nurse practitioner at Dr. Druker's office last week. She was calling me to let me know that the latest PCR results had come back from a sample I had sent out a couple of weeks prior. The results came back the same as my most recent reading from Boston, undetectable. The technical name for this is PCR Undetectable or PCRU. Since this is such a sensitive test, it continues to be good news.

I am heading to Portland next week for my 6 month check up with Dr. Druker. We will be in town less than 24 hours since we are heading to Seattle from there. It will be a mini vacation. We will be meeting up with our friends from California, Russ and Angela. We can't wait.

Undetectable

2009-03-13T14:39:00.003-04:00

I just received my latest PCR test results and they came back as undetectable. My scores had been very low (in this game low scores is a good thing). This was the first time, however, that the scores were so low that they could not even be detected or calculated. PCRU is the jargon game given to this level of remission. It is scary to even say that, but complete molecular remission has been achieved.

As a high achiever, I am obviously pleased to receive such great news. The only problem is I can't go any higher. I have plateaued. I guess I can focus on other challenges now.

Cancerversary

2009-03-03T08:50:00.002-05:00

To borrow a phrase from Erin Zammett Ruddy, today is my 3rd Cancerversary. It was three years ago this evening when I received that fateful call from the doctor. "I just got your blood work back. You white count is extremely high. I think you might have leukemia and need to go to the hospital right now." So much for the dinner I had brought home. That is where this journey began.

Three years later, I have a very different perspective from those early days of the unknown. Yes, I still worry about my PCR test values coming back the way they should. In fact, I am waiting on one right now. The main difference is that I do not focus on CML on a daily basis. There are many days when I do not think of it at all. I feel some distance between myself and the devastating potential of this disease. Let's hope it remains that way.

As for the Cancerversary, I am not sure if it is a day to celebrate or to mourn. Regardless, I think it is worth acknowledging that this was an important day in my life and one I will never forget.

Back to Boston

2009-02-26T10:28:00.002-05:00

It has been a very long time since I have written on this blog. Many people have asked me about updates and fortunately, there is not much to say on the CML front. Of course that is a good thing, but does not make for very interesting writing. Since November, my life has continued as normally as possible.

Yesterday, I went back to Boston to the Dana-Farber Cancer Institute for my 6 month checkup with Dr. Stone. Despite a lengthy wait, my wife and I eventually met with him and my blood work (just a CBC) all came back within normal limits. The important test, the PCR, I need to wait 2 weeks to find out the results. My last PCR test was quite low and I was having a major molecular response to the medication. I will keep you posted when the results come back. Needless to say, it was a rather uneventful visit since there was no news to discuss. I have since learned that although I may see it as rather mundane, others are more anxious about the meeting. I will do a better job of communicating about these events.

In other news, next week, I will be attending the Bright Lights Event for people who raised money for the Light the Night fundraiser for the Leukemia and Lymphoma Society. In a previous posting, I had commented about our grand total. Apparently, this number was not accurate. Team Gershon actually raised $16,668. That is an amazing number, especially given the economy. We were the top fundraising team in the state. We also had 7 people who raised more than a $1000 from my team including myself. They are my brother and sister-in-law David and Lisa, my parents, my sister-in-law and brother-in-law Beth and Jeff, my father-in-law Bob, my cousins, Julie and John, and my aunt and uncle, Nancy and Paul. I wanted to again extend a huge thank you to all of you who participated and contributed to this event. I hope it will not be as rainy next year and perhaps we can raise even more money.

Portland in November

2008-11-07T10:55:00.002-05:00

My wife and I are in Portland, OR for my 6 month check up with Dr. Brian Druker. As I was heading out on the plane from Boston, I received an email from Dr. Druker's nurse practitioner, Carolyn Blasdel, with the results of my latest PCR tests. The results showed that my PCR was at 0.007%. For those of you keeping score, this is slightly higher than the 0.002% recently, but according to Dr. Druker, is not statistically significantly different. I remain in molecular remission and I have about a 4 1/2 log reduction from my original PCR score. Keep in mind that the hope is that the PCR goes to a 3 log reduction, so I am overachieving as usual.

Dr. Druker was thrilled with my progress and did not want to make any changes in my treatment protocol. He did want to consider lowering my dose of Gleevec in about a year. I am at the maximum dose of 800mg. Since I am tolerating this well, his only concern is that the long-term side effects are really unknown since they have only been studying the medication for about 10 years. He did think that if there were to be any problems, it is more likely at the higher dose.

In terms of newer developments in the field of CML research, Dr. Druker told me they are starting to use a test to monitor the therapeutic dose of Gleevec. Instead of just basing the dose on your response, he will look at the therapeutic levels of the medication in the bloodstream and then make adjustments accordingly. This makes the treatment much more individualized. In other words, 400 mg might be great for some people, but 800 mg might produce the same effect based on the Gleevec level in the body. Other developments in the CML world are continued efforts on new medications for people who are not responding to Gleevec or have genetic mutations. The major question that still frustrates Dr. Druker is whether this will ever be a curable condition or will it remain a chronic, but treatable disease.

It is always great to meet with the team at OHSU. It is such a different feel then when I go to Dana-Farber. I recognize that they are at different ends of the spectrum (and the country for that matter). At OHSU, everything feels very personable. We spent about 2 hours at the clinic. At Dana-Farber, 15 minutes is a long visit.

For anyone considering whether it is worth it to visit with Dr. Druker, my answer is a loud "Yes". Where else can you get treated by someone who invented the medication you take.

I understand why Phil Knight donated $100 million to this hospital and I hope more people continue to do so. It would be nice to have an east coast location. For now, it forces us to take mini-vacations to the pacific northwest.

An Election, a Birthday, and a Trip

2008-11-04T19:44:00.002-05:00

Today has been an interesting day. First of all, it is my 36th birthday. I was pleasantly surprised on Facebook when many people apparently saw that it was my birthday and posted something on my Wall. So much for keeping it low key.

Second, as I have done many times, my birthday is shared with an election. Today is one of the most important elections we have ever had. The polling data is just starting to roll in as I write this and we should know in a couple of hours who our next president is.

Third, my wife and I are heading to Portland, Oregon tomorrow for my 6 month check-up with Dr. Druker. Although I recently had a PCR test which was extremely low, I had blood drawn a couple of weeks ago and shipped to Portland. I have my meeting with Dr. Druker on Thursday morning. I was amazed to read that last week, Phil Knight, one of the founders of Nike, donated $100 million dollars to the OHSU Cancer Center. Needless to say, that is an impressive amount of money that will hopefully go a long way to helping cure many cancers.

I will keep you posted about my visit with Dr. Druker.

And the Grand Total Is...

2008-10-27T07:25:00.003-04:00

I finally received the report totaling our fundraising efforts for this year's Light the Night campaign. The total amount of money that Team Gershon raised was $15790.14. That is truly an amazing number, especially given the economy this year.

I wanted to sincerely thank everyone who participated, raised money, or donated to the campaign. I am always humbled by these donations and words do not always convey what they mean to me and the support that they represent. I think this is a fantastic organization that not only provides wonderful patient services, but also financing for life saving research.

Thanks to all of you who helped me with this great event!

Wet the Night

2008-09-29T08:20:00.005-04:00

Saturday night turned out to be a wet, but fun affair. The whole weekend was rainy, so we were not sure if the Light the Night walk would go on. I later received an email saying that the walk was happening rain or shine. Saturday afternoon were filled with terrible downpours and I was concerned. It cleared up about 2 hours before the walk, however.

I was very proud of my team. They came out in full force despite the weather. We had about 45 walkers at the event. I found it amusing that Bill Koconis, who is the executive director of the RI chapter of the LLS, said over the microphone that "Cancer does not stop when its raining." That was a good point.

Unfortunately, just as we were getting ready to start the walk, the rain picked up again. It was damp. By the end, almost everyone was completely soaked. My socks needed to be rung out.

Despite all the complications and weather, it was a great event and fundraiser. I was so thrilled and honored to have all of these people there to support me, my family, and the society. People were extremely generous with their donations and it appeared as though our team may have raised the most money again this year. I should know a total fairly soon. Thank you to all of you who supported my efforts.

A New Doctor

2008-09-25T16:21:00.003-04:00

Yesterday my wife and I returned to Dana-Farber for the first time since the spring. It was probably the most crowded I had ever seen the waiting room. There were also many signs up talking about the crowds and wait time. I was thinking about how sad a statement it was that so many people needed cancer treatment. As much as I dislike being there, I know it is an important part of my treatment.

This was an interesting visit. I had learned about a month ago that my primary oncologist, who I had been working with for several years, was leaving the hospital to work for a drug company. I was being assigned to Dr. Richard Stone who is the head of the adult leukemia program at Dana-Farber. Despite a long wait to see him, he was a very nice guy and we had numerous connections both through myself and my wife's family. I liked his bedside manner and I am fairly particular about this since I teach this class at Brown Medical School.

I received my results from a PCR test I had back in August. My level was again at .002% suggesting molecular remission. This was the same number I has earlier in the summer and is quite low. I was happy to maintain this great level of response. I was even happier to learn that Dr. Stone did not think bone marrow biopsies were all that important for me, especially given my results. My plan is to offset my visits with Dr. Druker and Dr. Stone so that I am seen every 3 months. Interestingly, Dr. Druker and Dr. Stone did their fellowships together. Overall, it was a successful trip.

Adding to the overall theme of cancer week, this weekend is the Light the Night Event and a lot of people are walking. I am worried because it is supposed to rain, but what can you do. This has been an interesting fundraising year. It has been harder to raise money with the state of the economy. Despite this, we are already close to $15,000. I am always humbled by the responses of people who donate to such a worthy charity. It is hard to put into thank you notes what those donations mean to me and my family.

Light the Night Update

2008-09-09T09:12:00.002-04:00

The annual Light the Night Event is quickly approaching. Team Gershon has already raised close to $10,000 and we hope to raise quite a bit more. For those interested in walking, fundraising, or donating, please feel free to visit my Light the Night Page.

The walk is scheduled for Saturday night, September 27th. It is an extremely fun and family friendly event. Please join me, my family, and friends as we try to raise as much money as possible for the Leukemia and Lymphoma Society.

A New Side Effect

2008-08-20T09:24:00.002-04:00

I woke up yesterday morning and looked in the mirror. This is the image that I saw. Needless to say, I was a little freaked out. The whites of my eyes were all red on my right eye. This is apparently called a subconjunctival hemmorage, which essentially means bleeding in the eye. It looks worse than it actually is and does not hurt. There is also nothing to be done about it, but wait. If you look at my picture, you can also see how puffy my eye is.

My major concern, however, was that I needed to see patients today. Eye contact is an important piece of therapy. However, scaring the patients, is not usually indicated. I bought a pair of sun glasses that allows the patients to see my eye, while covering the redness. So far, my first couple of patients cancelled. I wonder if they had a heads up about what to expect.

O' Canada

2008-08-03T07:19:00.004-04:00

We just returned from a trip to Canada (Niagara Falls and Ontario) where we met our friends the Segalls. We had a wonderful time, not only touring and sightseeing, but also catching up with old friends. One of the highlights of the trip was that we were able to go to Sambo's Island on the Georgian Bay. This is a private island that has been in Caryn Segall's family for many generations. It was like a trip back in time to camp. No television or phone, but there was a beautiful swimming and boating area. We had a blast and felt completely disconnected from the rest of the world. It was a great feeling.

There has been a lot of catching recently. Today, we returned from a trip to the old camp where I used to work, Camp Tevya. I had not been back there since about 1992. It looked exactly the same. The difference was that we were looking to possibly send our daughter for next summer. It brought back a lot of good memories.

The other activity which has consumed a lot of time recently has been Facebook. This has become a bit addictive because I have been able to reconnect with so many people. A friend who I had not seen since 3rd grade contacted me.

While Facebook is a wonderful social networking tool, it does present an interesting dilemma. Most people I am connecting with do not know about my diagnosis. It is a bit awkward to bring this up, but seems important as well. I kind of feel bad, like I am dropping a bomb out of nowhere. I am a little more relieved when someone has heard about me already. I think the blog is helpful since I don't have to retell the whole story. What I realize is that there is no easy or tactful way to tell someone you have been diagnosed with leukemia. It is a real conversation stopper. Regardless, I love hearing from old friends and look forward to many reconnections.

Molecular MD

2008-07-22T16:07:00.002-04:00

Last week I took my first blood test at Dr. Druker's lab in Oregon. The company is called Molecular MD and has extremely accurate PCR tests for CML. Dr. Druker and Carolyn Blasdel (his nurse practitioner) were concerned because the general rule of thumb with blood tests and CML is to have it checked every 3 months. My next local appointment was not until September which was closer to 5 months.

I was not sure how this process was going to work, but it turned out to be very easy. Carolyn sent me a slip for a blood test. She and I also spoke with Molecular MD to have a test kit shipped to me. They sent me a box with a test tube, some paperwork, and a prepaid Fedex slip. All I needed to do was to find a lab that would draw the blood and call Fedex to pick it up. Molecular MD had some relationships with labs around the country and the one closest to me was Quest. It was close to my office, so I stopped by during a cancellation one day. The phlebotomist drew my blood, took care of the paperwork, and shipped it overnight to Oregon. It was so easy. The only difference was that I had to pay out of pocket for the actual blood draw.

Today I received an email from Carolyn:

"Good news, your PCR is very, very low at 0.002%. Report attached. This is an excellent response, well below the level of major molecular response (0.1%) and puts you in the group least likely to relapse."

This was my lowest reading by far. It was great to hear before I head off to Niagara Falls tomorrow.

I think this type of blood test option is great for people who have CML. Any doctor can order this type of bloodwork, so it is certainly worth asking about.

In the meantime, Team Gershon continues to raise money for the Light the Night Walk. We have raised $875 and are just getting started. Please let me know if you are interested in joining the team. It is a lot of fun.

Light the Night 2008

2008-07-01T15:55:00.009-04:00

It is that time of year again. Light the Night is quickly approaching. For those of you who don't know about it, Light the Night is a wonderful fundraiser for the Leukemia and Lymphoma Society (LLS). It takes place every fall in cities across the country. The local event is about a 3 mile walk down Blackstone Boulevard in Providence, RI. Last year, about 1000 people marched down this street holding red and white lit balloons. The red balloons signified blood cancers and the white designated survivors of blood cancers. For those who have not experienced it yet, it is a magical night and a lot of fun as well.

For the past 2 years, I have put together a team to raise money and get people to participate in this charity. Team Gershon has been the top fundraising team in the state for the past 2 years. I was so proud and honored to be able to work on this campaign. Raising money for the Leukemia and Lymphoma Society is near and dear to my heart. The LLS funds researchers who treat and try to find cures for blood cancers. One of my doctors, Dr. Brian Druker, at the Oregon Health and Sciences University in Portland, developed Gleevec with funding coming from the LLS. Without these scientific advances, I would not be in remission now.

I learned a lot more about the LLS and their mission this year. I was invited to attend their annual Mission Days in Washington, DC, this past fall. I made several blog posts about it which you can read below. It was an inspiring trip and I learned that the society is committed not only to finding cures for blood cancers, but also in providing excellent outreach and services to patients and families coping with a blood cancer diagnosis. As such, I want to do my part to help out the society as much as possible.

There are a couple of ways to get involved with this event. First, please join my team. You can click on this link to go to my Light the Night Page. You can then click on Register to Walk. This would mean walking in the event and hopefully trying to raise some money for the LLS. Raising money is fairly easily with an automated system over the internet. All you have to do is enter in email addresses and a letter is sent to those people you might solicit for donations. Second, you could donate directly. Following the link to my page or anyone on my team, you can make a contribution online or you can send a check to me in the mail.

The other nice thing going on this summer is that there is a bonus if you raise money through the LLS website. You can get gas cards for certain amounts. Here is the link. With the price of gas now this is really nice.

The Light the Night Walk is scheduled for Saturday night, September 27, 2008 in Providence. If you cannot make this event, there are local ones all over the country, some on different dates. You can go the the Light the Night Website for more information.

If you need help with fundraising, I am happy to assist you as well.

Portland Take Two

2008-05-19T08:07:00.008-04:00

My wife and I just returned from a trip to Portland Oregon to meet with Dr. Druker. We decided to make it a mini vacation as well. We met our friends Angela and Russ from the Bay Area who we met last year in Italy. It was a wonderful reunion.

Let me talk about the main purpose of the trip which was my second appointment at OHSU. I met with Carolyn, Dr. Druker's nurse and then Dr. Druker himself. We reviewed my symptoms and progress over the last 6 months. They were both pleased with how well I was responding to Gleevec and Dr. Druker even thought I was slightly ahead of where he might expect me to be at this point. I was always a little bit of an overachiever.

The most interesting discussion was about blood testing, and specifically PCR tests. Of all the blood tests I have done, the PCR tests tells me how much my body has changed due to Gleevec. It is such a sensitive test that it can pick up extremely small traces of CML cells in the blood. I started off with a reading of 34% and have gone way down to 0.01%. This was a big drop. The frustration that Dr. Druker noted was that he had a hard time getting all the information he wanted from my lab test results. I have my blood work done at Dana-Farber and faxed to him. Since the PCR is not a FDA approved test, there are no rigorous standards about how to conduct the test. That is why when you start at one lab, you need to keep going to that lab. Otherwise, you are comparing apples to oranges. If you think about when you go for regular blood work, you don't question which lab does it because they should all be getting the basic readings in the same manner. This is not true of the PCR test.

As such, Dr. Druker suggested trying out a new service for CML patients that I had not previously heard about. For fellow CMLers out there, this may be of interest to you as well. I can have my blood drawn at any lab in the country and then shipped to a lab in Oregon for the most extensive type of CML blood work available. For more information about this service, visit the CML Alliance website. The lab that actually performs the test is through a company called Molecular MD. My plan for now is to have the blood test done with the new lab over the summer and return to Portland next fall. In between, I will be at Dana-Farber in September for a bone marrow biopsy.

So much for the CML stuff for now. Portland is a fantastic city and absolutely beautiful. You can go from the beach to the mountains within minutes. There are some pictures of our friends and myself and my wife at the Japanese Garden in Portland. The rocks are from Cannon Beach on the Oregon Coast. Haystack Rock is the most photographed rock in the world. You will probably recognize it from other pictures or from movies you have seen. I also have a picture from Mt. Hood which you can see from the city as well. We went to the top and as you can see, there is snow on it. In fact, you can ski on the mountain all year long. Right behind me where this picture is taken is a famous lodge called the Timberline Lodge. For those of you who have seen the movie the Shining, this is the lodge you see at the beginning. Only the outside is shown. The inside was filmed somewhere else.

I think the most interesting thing I learned on the trip was that the name of the city of Portland came from a coin toss. Apparently a person from Portland, ME and Boston, MA were deciding on the name and they flipped a coin to see what it should be. Obviously Boston did not win, but they did make it to the next round of the NBA playoffs.

A Day on the Hill

2008-04-09T15:45:00.006-04:00

Wow! Yesterday was an exciting and exhausting day. I was quickly reminded that Capitol Hill is actually a large hill and the place is huge. My feet can attest to the physical efforts of just getting from building to building.

the Executive Director of the RI chapter of The morning began with a trip on the Metro to Union Station. We walked to the Dirksen Senate Office Building where we had a breakfast briefing and heard from two congressmen encouraging our efforts. Then we were off to our meetings. The Rhode Island contingent (myself, Bill Koconis, executive director of the RI chapter of the LLS, and Joe Gildea, a member of the board for the RI LLS and a national member of the Board of Representatives for LLS) had a couple of hours before our first meeting.

Interestingly, it was a busy day in the building we were in since the Senate Armed Forces Committee was grilling General Patreus about when we could start reducing our troop levels from Iraq. There were opponents and proponents of the war, making for some interesting interactions. This hearing did throw us for a bit of a loop because our first meeting scheduled with Senator Jack Reed from Rhode Island was not going to work according to our schedule since he was asking the General questions about Iraq. It turned out, however, that Senator Reed wanted to meet with us and had asked us to come down to the hearing so he could meet us. We were supposed to be escorted there by someone from his staff. When we got to his office, however, we learned that since Senators Hillary Clinton, Barack Obama, and John McCain were all at the hearing, the Secret Service would not allow us in.

At Senator Reed's office, we were soon joined by 5 other people from the National Staff of the LLS. This included the President of the LLS, the Vice President of Public Policy, and several other high-ranking members of the society. In addition, Lynn Aronson, the former Executive Director of the Rhode Island Chapter and currently working for the home office on grassroots advocacy also joined us. She knew Senator Reed well. She also happens to be the aunt of one of my best friends.

Needless to say, with this big crowd, I was a little intimidated. It was my first meeting and I had to give my talk in front of all these people. Senator Reed did not attend the beginning of the meeting, but instead we met with one of his legislative staff. He was a nice guy from Rhode Island who listened closely to what we were saying. I eventually told my story of how my life changed several years ago and why I was now in Washington advocating for the LLS.

Soon after, Senator Reed walked in. He had left the hearings to come and meet with us. He was such a nice man and really took charge of the room. I told him that I was from his hometown and we chatted a little about Rhode Island. Senator Reed was clearly in agreement with all of our initiatives so we were preaching to the choir to some extent. After our discussion on LLS matters, one member of our group asked him about the hearing and Iraq. Senator Reed spoke off the cuff about his feelings about the hearings and what is really happening with the Iraqi government. He has been to Iraq several times and as a former Army Ranger, is well versed in military operations. I found this to be fascinating.

This was an invigorating meeting. It made us feel like we were an important part of the legislative process and that our voices were being heard by the people we elect. It seemed that the whole group was quite pleased with our meeting. One person commented that the meeting was one of the best ones they had ever had with a Senator. We were off to a good start.

The Rhode Island contingent broke off from the larger group and went to our next visit with our newest Senator, Sheldon Whitehouse. We were not scheduled to meet with Mr. Whitehouse, but instead, some of his legislative staff. I did not feel as much pressure during this meeting and was able to speak a little more comfortably. About halfway through our discussion, however, Senator Whitehouse walked in to speak with us. He was very friendly and also on board with our agenda. He seemed interested in attending some of the local events, especially the regatta. We felt that this meeting also went quite well. You can see the picture of all of us above.

We took a little break and walked over to the house of representatives office building. We ended up eating in the cafeteria of the Cannon Building with hundreds of young legislative staffers. I was amazed at the young age of the staff. I quickly realized how influential they were, however. It is likely these young staffers do much of the leg work and advise the senators and congressmen about important issues.

After lunch we met with a legislative staff member from Congressman Langevin's office and later Congressman Kennedy's office. We went through our agenda items and they also seemed to agree with our issues and said they would pass on our message to the representatives.

We had a few hours to kill and we walked around the mall. After walking for some time, we decided to make a stop at the National Gallery of Art. We saw some famous impressionist pieces.

Our last event was a Congressional Honors reception in the Capitol Building. This was an interesting event, combining LLS volunteers and staff with legislators. During the event, we met Senator Ted Kennedy. Senator Enzi and Congresswoman Matsui were honored for their efforts to help the causes of blood cancer research.

We flew home late last night completely wiped out but encouraged by the democratic process. As cliche as it may sound, my voice does count and the politicians actually want to hear it. My view of the political process and certainly the federal government has changed drastically.

Today, as I reflected upon the experience, I was overwhelmed by what I had done. I felt strongly about the issues and realized that my story is an important one to tell. It only further emphasized the mission of the LLS and the reasons for asking for the funding changes for research.

My wife and I had time to discuss the events of the past few days as we drove to Dana-Farber to talk about my latest blood test results with my oncologist. Talk about a role change again. I guess I will always be a patient, but I can add advocate to the list as well.

By the way, my bloodwork remained steady. I still remain in molecular remission with a PCR value of 0.008%. I do not have to go back to Dana-Farber until September, but I head to Portland, OR next month to meet with Dr. Brian Druker again.

Mission Days Part 2

2008-04-07T17:16:00.002-04:00

The second day of the LLS Mission Days has been quite eventful and educational. It is probably best described as an emotional roller coaster. The day started with a networking session in the morning with other chapters. It was a time to brainstorm about what has worked and what hasn't for the LLS in terms of fund raising efforts. It was interesting to learn about other ideas that chapters use to fund raise. I was sitting at a table with people from California, Delaware, Pennsylvania, North Carolina, and New Mexico. I think I was the only patient volunteer, but could not be sure. This session was motivating, however, because it did provide several great ideas for things that could be done on the local level.

I then went to a talk on Comprehensive Cancer Care presented by someone from the American Society of Clinical Oncology. She talked about efforts to improve treatment plans for cancer. It was not totally relevant to the LLS. What was most frustrating was that this presenter spoke to the audience as if everyone knew about her references. For example, she said something like I know you have all read the IOM report. I am not even sure what the IOM is, let alone their report. Needless to say, this was not the most useful talk.

An awards luncheon followed where we sat with other people from North Carolina, Illinois, and California. Across from me sat another woman who was a volunteer from North Carolina. She was introduced to me as a survivor. When I was asked by someone at the table how I became involved, I started going into my story of being diagnosed with CML. It turned out that Dorothy from North Carolina also has CML and was diagnosed in 2001. She also takes Gleevec. I spent some time talking with her after the lunch. She was in some of the early trials of Gleevec and goes to MD Anderson for treatment. It was great to see someone who has been PCR negative so long. Our conversation was quite interesting because she was so knowledgeable about CML and the latest findings. It was great to have the opportunity to compare notes and discuss what it is like to have CML. As the day went on, I heard numerous people talk about having CML and taking Gleevec, but it was so busy, I did not get to speak with them directly.

As interesting as it may seem, I have not spoken to many people with CML. Although I write this blog, I do not spend much time talking about CML. Today, I talked quite a bit about my experience and it did feel a little awkward. What I have learned, however, is that I have a powerful story to tell and that will be important tomorrow as we meet with the congressional delegation.

The final events of the day was legislative boot camp. We learned about the initiatives we are trying to talk to the congressmen and senators about tomorrow. For each agenda item, a speaker talked about a personal experience about why these initiatives were so important. These were extremely emotional. One woman spoke about access to clinical trials for her mother. Despite having good health insurance, her mother was denied access to a clinical trial for her diagnosis of multiple myeloma. Traditional therapies did not work and her doctors suggested and experimental medication. Although the treatment is generally covered, routine care is not. Her insurance company denied the request for a long time, leading to even more expensive traditional care. Her mother helped introduce legislation on Capitol Hill so that others would have better access to clinical trials. Her mother passed away in December. After this woman spoke, she was given a standing ovation for being so brave to tell this sad, but important story. It reminded us all of why we were here and how powerful a personal story can be.

Tomorrow I head to Capitol Hill to speak with legislators and explain the initiatives set forth by the LLS. I imagine I will be telling my personal story rather frequently. Let's hope it is useful in pushing for the funding that is needed.

Dr. Gershon Goes to Washington

2008-04-06T16:56:00.004-04:00

I arrived this afternoon in Washington DC (well technically Alexandria, Virginia) as part of Mission Days for the Leukemia and Lymphoma Society (LLS). I was honored to be asked to represent the Rhode Island contingent of the society as a volunteer and advocate. The idea of Mission Days is to meet with the congressional delegation from my state in order to advocate for programs that are important to the LLS. People from all over the country have come to Washington to advocate for blood cancer research. I will receive training tomorrow, and on Tuesday, I spend the day on Capitol Hill meeting with the Rhode Island Senators and Congressmen. I received the schedule today and my group has meetings with Senator Jack Reed and Congressman Patrick Kennedy. We will also be meeting with legislative staff for Senator Sheldon Whitehouse and Congressman James Langevin.

This is very exciting for me and represents a significant role change as well. While I have worked hard at fund raising for the LLS, I am now going to be advocating their agenda. Apparently I have a strong voice as someone who has been treated for a blood cancer and has been the beneficiary of the research that has been crucial to me. Perhaps this is where my experience can be most useful to others. I remember when we met with Dr. Druker in the fall we asked him what would be important for fund raising for his research. He said that more money is needed for the National Institutes of Health and National Cancer Institute.

The legislative agenda includes 4 important issues, increased funding for the National Institutes of Health and the National Caner Institute, the creation of a Blood Cancer Research Program at the Department of Defense, and Access to Clinical Trials. I was a little unclear about the last one, but apparently when someone enrolls in a clinical trial (e.g., testing a new medication) insurance companies can deny routine costs such as blood work, doctors visits, etc. During normal treatment (like I have undergone), the insurance company has paid for everything. If the clinical trials did not exist, however, the development of Gleevec and other treatments never would have occurred.

I will be writing as much as possible about the Mission Days, particularly after the day on Capitol Hill.

2nd Cancerversary

2008-03-03T07:43:00.003-05:00

It is hard to believe, but two years ago today, I received that awful phone call from my eye doctor. I returned a couple of weeks ago for a check of my eyes and all of the scarring was gone.

Over the two years, a lot has changed. In terms of CML, things are going well. I am in molecular remission with few if any side effects. I am working with my oncologist at Dana-Farber and also Dr. Druker at OHSU. My next appointment in Boston is next month and then in May, we are off to Portland Oregon again.

As I reflect on the past two years, I want to give thanks. I am well aware that a diagnosis of cancer affects everyone surrounding an individual. I think it is probably harder for those around me than it is for myself to deal with. I have received the most wonderful support from family and friends. It is at times of need when we really see the true nature of people. I have been so impressed by the responses I have received. I may not say it enough, but I love and thank you for all that you have done for me.

My journey in the CML world takes an interesting turn next month as I head to Washington, DC to lobby our congressmen and senators on behalf of the Leukemia and Lymphoma Society. I am looking forward to this adventure and will keep you posted with details.

Molecular Remission

2008-01-16T19:39:00.000-05:00

I had my regular visit with my oncologist at Dana-Farber. I was pleasantly surprised to hear the latest results of my most recent blood test. For those of you keeping notes at home, my original PCR value at diagnosis almost 2 years ago was 34.5%.

The PCR test is defined as the following from the Leukemia and Lymphoma Society Website:

The short name for a lab test called "polymerase chain reaction," a very sensitive test that can measure the presence of a blood cancer cell marker in the blood.

This meant that at diagnosis 34.5% of my blood cells showed the presence of the BCR-ABL cancer gene that produces CML. My previous reading in October 2007 showed that this number had dropped to 0.02%. This was more than a 3-log (or three fold) reduction since diagnosis.

As of December 2007 when my blood was last drawn, the number had dropped even further to 0.0038%. This is another 10-fold reduction. In total, that means a 4-log reduction since diagnosis. Although my wife thinks it is funny that I focus on these numbers, it helps to think of this in context. Otherwise, these numbers are meaningless. When you have cancer, numbers mean everything.

Upon meeting with my doctor today and reviewing the numbers, he said that he would consider me in Molecular Remission. This was essentially the last stage of remission and a huge relief. I have included a definition of molecular remission below.

Molecular response
A treatment response is called a complete molecular remission if no leukemia cells in the blood and/or marrow can be detected by PCR.

Needless to say, this is great news and I am still processing what this means. In the meantime, I can relax a little and enjoy life.

Role Reversal

2008-01-15T20:02:00.000-05:00

It has been some time since my last blog entry. That is for a pretty good reason. I have not thought too much about CML or cancer for some time. Not that it ever disappears, but it is not in the forefront of my mind at all moments of the day. I am reminded when I take my pill in the morning and at night, but that is pretty much it. I am a hell of a lot more concerned about being a good father, husband, son, brother, psychologist, teacher, and business owner. If it is possible, CML has taken a seat on the back burner for the time being.

That is until tomorrow. Every few months, I am blessed with the opportunity to be thrown back into the world of cancer and visit Dana-Farber. It is not that I mind going there (not that I particularly like it either), but it is a weird role for me to be in. I spend my days at work being the provider of mental health services. I give out advice and help people deal with problems. I teach medical students how to interact with their patients and have a good bedside manner. I love being the doctor. I am a lot less comfortable being a patient. It is hard to be on the other side.

Tomorrow will be the first time that I visit Dana-Farber in several months, other than to get some blood drawn. I have not yet spoken to my oncologist about my meeting with Dr. Druker in Portland. I will also be getting the results of my most recent blood work. Although I am not too worried about this, the whole process is stressful and overwhelming at times. The only positive thing about tomorrow is that I get to spend some time alone with my wife. We have a date to the cancer unit. Fortunately, we usually go for a nice lunch afterwards.

I have also booked a plane ticket for our next trip out to Portland to visit with Dr. Druker in May. The best part is that friends we made while on vacation in Italy will be meeting us there. In other words, it will not be just a cancer trip, but a chance to relax and have some fun with friends we have not seen in a while. Actually, it will be exactly one year since we met Russ and Angela at the Vatican. Quite ironic and interesting since I am not Catholic.

I will provide more updates after tomorrow's appointment. In the meantime, here are some recent pictures of my girls from a New Year's trip to Vermont.

Blazing a Trail

2007-11-17T09:37:00.000-05:00

I am wrapping up my trip to Portland to meet with Dr. Brian Druker from the Oregon Health Sciences University (OHSU). We are heading back to Rhode Island after a lengthy, but productive trip.

This consultation with Dr. Druker was initially set up over the summer. At that time, my PCR values started turning slightly in the wrong direction. This happened on two separate readings. My doctor at Dana-Farber became a little concerned and decided to take a few precautionary measures. First, he wanted to increase my dose of Gleevec from 400mg to 800mg. Second, he ordered a test to see if my body had started rejecting the Gleevec and some of my cells started mutating.

The PCR value that was taken the day before I started the increased dose ended up being the lowest I had ever had at that point, suggesting that the increased readings were possibly false. On the 800 mg, my PCR level jumped way down to a 3 log reduction, further indicating that my body is still responding well to Gleevec and that the increased dose helped move things along faster. This was all encouraging news.

In the meantime, we had scheduled the appointment with Dr. Druker and made flights to go to Portland. Going out here, I thought it would be a little anticlimactic. Instead of a list of questions about alternative treatment options, I really had no new questions to ask him.

We met with Dr. Druker two days ago. OHSU is a beautiful facility on the top of a hill overlooking Portland. When we walked into the clinic, it was a stark contrast to what I am used to at Dana-Farber. We were the only ones in the waiting room. At Dana-Farber, we are lucky to get a seat.

First, we met with his physicians assistant, Carolyn, who was so pleasant and upbeat. She spent a lot of time with me and my family obtaining symptom information for Dr. Druker. She also spent time answering our questions. We never once felt rushed. She was great. Dr. Druker came in a little while later to talk about my history and examine my current readings and treatment. He had a commanding and gentle presence.

Most scientists that I have encountered who are at the top of their field tend to be less than ideal with patient interactions. It is almost as if they feel that this is a necessary evil of their job. Perhaps I am more aware of this because I teach medical students about interviewing skills and good bedside manners. Dr. Druker could not have been more pleasant and professional.

He quickly glanced through my file and wondered about some specific information that he had not obtained. He is a numbers guy and likes the details. As he examined my PCR values, he went through a thorough explanation of how statistically, my numbers had probably not gone up. Because of the sensitivity of the PCR test, the is wide error margin in the values and my numbers were all within that range. He was pleased to see, however, that the 800 mg had bumped my PCR values way down in a significant manner.

He spent so much time with us drawing graphs about the progression and treatment of the disease. He talked about his philosophies about long-term treatment and the possibility of changing the treatment from maintenance to a cure at some point in the future. He answered all of our questions and spent a long time with us. Overall, we were at the clinic for more than 3 hours.

My wife and my parents discussed the appointment and agreed that we were so comfortable with Dr. Druker and Carolyn that we wanted them to be a part of my treatment team. This means going out to Portland every six months. The good news about that is that there is now a direct flight from Boston. I will be returning in May for a follow-up visit.

Needless to say, this visit was much more than I had expected. I understand now why so many people with CML come out to OHSU. As Dr. Druker said, "I only treat patients with CML." If you can go to the world expert, wouldn't you?

I am so grateful to my wife and parents for accompanying me on this long and emotional journey. I know that CML does not just affect me, but everyone around me, especially my family. I think it might be a little harder on them than me. It is too easy to forget that sometimes and I appreciate all of their support and love during this process.

3-Logs!

2007-10-17T16:00:00.000-04:00

I just returned from a visit with my oncologist at Dana-Farber. After being on the 800 mg of Gleevec for about 8 weeks now, my PCR level dropped to 0.02%. This is the lowest it has ever been and suggests that, indeed, the higher dose is working. This reading is more than a 3-log reduction from my initial value of 34.5%. Amongst the discussion boards and scientific literature on CML, the 3-log reduction is considered a positive response and one of the last stages of remission. In other words, I have almost reached the last stage of remission or Molecular Remission. This means that my DNA has changed to stop producing leukemic cells. I joke that it is kind of like the changes that happen to superheros. To be considered in full remission, this level should be less than 0.01. That would be considered PCR undetectable. As you can see, I am not that far away.

Needless to say, this was a huge relief to know that the medication is working and my treatment is not only back on track, but moving at full speed ahead. Due to the positive results, I do not have to return for another visit for 3 months.

Yippee!!!

Light the Night Wrapup 2007

2007-10-04T08:15:00.000-04:00

Last Saturday, October 29, 2007, was the Providence Light the Night Walk. It was a beautiful fall night and Team Gershon was well represented. Our team proudly walked down Blackstone Boulevard holding red balloons and a white one for me. Here are some pictures of this great event.

Although our fundraising totals are not all tallied, we were at about $17000 going into the event. I am not sure how much we brought in on the day of the walk. I should know within the next couple of weeks.

I sincerely thank those of you who participated in this event with me and/or made a donation to the Leukemia and Lymphoma Society in my honor. I really love the support from family and friends.

I realize that I never reported about my most recent visit with my oncologist. About a month ago, I returned to Dana-Farber to check the lab results after increasing my Gleevec to 800mg. My last PCR test prior to starting the increased dose was 0.2%, my lowest reading. This reading at 800mg was also 0.2%. A little confusing indeed. Although this is good news because my levels did not go up, they did not go down either. I was anticipating some movement downward with the increased dose, but perhaps 4 weeks is not enough to see this change in my peripheral blood.

On Saturday, I am going for another blood test and will receive the results in about 2 weeks. I am feeling great and the initial side effects I had on the increased dose have dissipated.

In a little over a month, I will be heading out to Oregon for my appointment with Dr. Druker at Oregon Health Sciences University. I am very excited to meet with him and ask him some questions. If anyone has questions they would like me to ask him, please forward them to me.

Anyway, thanks again for the great fundraising effort and support.

Light the Night 2007

2007-09-15T08:39:00.001-04:00

I wanted to update everyone about our team efforts for Light the Night which is quickly approaching. As of this morning, Team Gershon has raised $12,870. Since we have already raised over $10,000 we will again have our own tent at the event.

I wanted to provide everyone with the details of the event. It is scheduled for Saturday, September 29th at Lippitt Park at the end of Blackstone Boulevard in Providence. The walk will be 2.5 miles up and down the boulevard. Registration and check in starts at 5:00. The walk starts at 7. Last year there was a long line to pick up balloons so I would suggest doing this early.

There are activities and entertainment. You can also drop off any money, pick up shirts and eat snacks. We will provide refreshments for our team. I also need to order Team Gershon shirts. If you are planning to walk, please send me an email jgers01@gmail.com so I can order the appropriate number of shirts. Also please register online ahead of time if you are planning to walk since the lines can become very long. Last year there were several thousand walkers. You can go to my Light the Night site. Click on Register to Walk. On the search page, select Team Name and type Team Gershon.

I am very excited to see everyone and the generosity has been wonderful. If you have donations, you can bring them on the night of the walk, send them to me, or send them in to the Leukemia and Lymphoma Society directly. I will see everyone on the 29th.

The Numbers Game

2007-09-05T12:17:00.000-04:00

I just returned from my checkup at Dana-Farber this morning. I was started on 800 mg of Gleevec 4 weeks ago because my PCR test had gone up instead of down over the summer. My doctor became a little concerned and decided he wanted to see me monthly instead of every three months. He also doubled the dose of my medication to see if this would change the direction of this reading.

I went in today, assuming that things would not have changed all that much. Prior to increasing the dosage a month ago, I had a blood draw to get a PCR level before the change. I received the results of that test today.

Here is a pattern for my tests so far, for those following at home, especially if you like statistics:

3/9/06 --34.5%
6/14/06 --10.9%
9/20/06 --1.15%
12/27/06 --0.5%
3/31/07 --0.3%
6/4/07 --0.6%
7/23/07 --0.6%
8/8/07 --0.2%

Clearly, the pattern was that things were all going well until this summer when the numbers started to go up. This might have been an anomaly, but two tests in a row were more concerning. The strangest part of this whole thing is that my numbers started going down again, even before I increased the medication. I will not know my newest reading for a couple of weeks, but it certainly puts a new perspective on these tests.

I wonder, as cancer patients, whether we overly focus on these statistics and numbers. I recognize that these numbers represent how the treatment is working or the disease progressing, but they may also increase the stress level as well.

Over the summer, my stress level was probably the highest it had ever been since my father and I were opening a new business. Is there any correlation between the change in the numbers and my level of stress? I asked this very question to my oncologist. He shrugged his shoulders. As someone who has examined the role of stress and anxiety on the body, my guess is that it can certainly have an impact. If we look at studies that examine the release of cortisol, (the stress hormone) and what it can do to the body, it would not surprise me to see the potential affect.

What does this suggest? Well, my new goal is to find as many ways as possible to de-stress. Not only is this good for my body, but probably my mental health as well.

After all that good news, I still had to have a bone marrow biopsy. Another two weeks until results are in so the waiting game starts now. For now, I am going to relax a little and enjoy this good news.

The Oregon Trail

2007-08-29T10:39:00.000-04:00

Over the past few weeks, there have been a number of changes. First, I have been on 800 mg of Gleevec instead of 400mg. This is to examine whether an increase in the dosage will help push my PCR level down. If not, it might suggest that I have become resistant to Gleevec and may need to try another medication. I go back to Dana-Farber next week for blood work and a bone marrow biopsy.

I have been having weekly blood tests on the 800 mg to look at my blood in general. Specifically, the fear is that too much of the Gleevec can make my white and red blood counts drop too much which is not safe either. So far, they have dropped a little below the normal range, but not enough to concern my oncologist. I had more blood drawn this morning so we shall see what happens.

In the meantime, I have decided to visit Dr. Druker at Oregon Health Sciences University in Portland. Dr. Druker is known as the preeminent CML doctor and helped develop the medication I am currently taking. Following the advise of some fellow CML buddies (Annie (Stephen's mom) and Lori (my fellow RI CMLer)), I will see Dr. Druker on November 15, 2007. My wife and my parents will be joining me for a trip to Oregon. I am hoping this consultation can assuage some of the fears with the recent non-responsiveness to the medication. If I need to make a change, he can help with this decision as well. For those who have met with him, they have said that this is a great experience.

In the scientific community, my experience has been that the more well-known a researcher is, the poorer their clinical skills tend to be. This is particularly true in their interactions with patients. I may be too aware of bedside manner since I teach this at Brown Medical School. From what I can gather, Dr. Druker is able to balance these skills well. I am looking forward to meeting with him.

In other news, our Light the Night Campaign is in full swing. Although we are a little later in getting started, the donations are starting to come in. So far we have raised $4411. If you would like to walk with Team Gershon or make a donation, please visit my Light the Night page. If you want to register to walk, you click the button on the top left. The event is scheduled for September 29th in Providence.

Light The Night 2007

2007-08-09T20:47:00.000-04:00

Dear Family and Friends,

As many of you know, it has been over a year since I was diagnosed with Chronic Myelogenous Leukemia (CML). I have been fortunate to benefit from the groundbreaking research that was supported by the Leukemia and Lymphoma Society. Not everyone with blood cancer is so lucky, and more money is needed to help fund research to cure these diseases and to support the patients and families who are living with these diagnoses.

Last year, our Light The Night team called Team Gershon raised $23,615! We were the top fundraising team in Rhode Island. I was so proud and pleased that my team of 47 walkers and many other contributors were able to support me and the society.

In our second year of fundraising, I have again organized a team called, Team Gershon. I am inviting you to join this team and help me raise funds or to help contribute to the team. You can also participate by making a donation yourself or volunteering at the event on September 29th in Providence, RI. Please follow this link for donation information: http://www.active.com/donate/riltn/2033_jgers01

Light The Night® Walk. This is an opportunity for us to do something good in our community. It is an opportunity for you to help fight cancer by:

• Joining the Light the Night team

• Making a personal contribution

• Raising funds for the Society to use for critical cancer research and services for patients and their Families

Light The Night is an evening walk to celebrate and commemorate the lives of people touched by cancer. Walkers hold illuminated balloons—white for survivors, red for supporters—and light the night with hope. The Walk culminates in a community celebration with music, refreshments and entertainment—where friends, family members, neighbors, co-workers and others come together to demonstrate their support for cancer patients.

Team members raise funds by encouraging others to contribute. Funds will be used for research to find cures for blood cancers—leukemia, lymphoma, and myeloma—and improve the quality of life of patients and their families.

As Team Captain, I encourage you to become involved in this worthwhile endeavor, and to give yourself the experience of helping others. You will be glad you joined us. You can learn more about this event online at www.lightthenight.org or go to my direct link and register for the team or donate online. The address is http://www.active.com/donate/riltn/2033_jgers01. You are also invited to hear more about my story on my blog at http://jongershon.blogspot.com.

Walk Information:

When: September 29, 2007, 7:00 pm.

Where: Blackstone Boulevard, Providence, RI

Who: Anyone who wants to fight cancer is invited to join. No particular level of fitness is required.

How: We encourage every walker to beat the national average amount ($100) by setting their individual goal to at least $150. I’ll give you information on how to go about it. Our team goal is to try to match or exceed last year’s donations.

Why: The need for cures is critical: Every five minutes, someone in this country is diagnosed with blood cancer. Every ten minutes, someone dies. Leukemia is the leading cause of cancer death among children and young adults under the age 20.

Fundraising Rewards: All participants raising $100 or more will receive an illuminated balloon and a T-shirt to wear during the Walk. Walkers raising $300, $500, $1,000, $2,500 or more can receive other exciting gifts. Visit www.lightthenight.org for more gift information. Please join us for this very special evening. Be a part of our team. You’ll enjoy yourself. And you’ll make an important difference in the lives of others.

Light The Night and brighten the future for millions touched by cancer.

Thanks,

Jon Gershon

jgers01@gmail.com

http://www.active.com/donate/riltn/2033_jgers01

http://jongershon.blogspot.com

A Minor Glitch

2007-08-08T16:55:00.000-04:00

It has been a nice, but busy summer for myself and my family. My father and I opened a new private practice in July and have been working hard to get this new business up and running. As such, I have had little time to think about CML, let alone write about it. That does not mean that nothing has happened in regards to treatment. In fact, quite a bit has happened.

In late June, I went for my three month appointment and the doctor who was assisting my primary doctor came into the room asking me if anyone had spoken to me about my test results. Immediately, I knew this was not a good sign. Of course, no one had spoken with me. He told me my PCR test went up for the first time. It has jumped slightly from the previous count erasing my 2-log reduction that I had previously achieved. It was not exactly clear what this meant. It could have been a small spike or an abnormal reading. It could also have meant that the Gleevec was no longer working and I might need another treatment option. My doctors asked me to take another blood test in a month and return in 6 weeks.

This was a bit of a shock for me. Until this point, my treatment had gone extraordinarily well. I has not expected any bad news whatsoever. I was angry at myself for getting almost too cocky about how easy this treatment was.

I remained upset for that day, but made a conscious decision that I would not dwell on this information. What good would it do me and who knows whether it was anything to be concerned about anyway.

A couple of weeks ago, prior to a party, I stopped at Dana-Farber for some blood work. This morning I returned for the results. My oncologist told me that the results had been the same as the last test, although it did go down a minuscule amount. He was somewhat concerned, but decided that he wanted to increase the dosage of my Gleevec to 800mg from 400mg. He also wanted me to have weekly blood counts to make sure my regular blood work is not affected by the increased dosage. The other exciting news is that I get to return for a check up in 1 month and also get to have a bone marrow biopsy. Yippee!

Obviously this was some disappointing news, but hopefully the increased dose will take care of the problem. If not, there are other treatment options available.

At the same time that all of this is going on, I am about to start soliciting again for the Light the Night Campaign for the Leukemia and Lymphoma Society. I have been a little slower this year about this process for two reasons. First, I have been so busy with the new business. Second, I was more concerned about my own health for the time being. This campaign, however, is extremely important to me and I hope that any friends and family that want to walk or participate with me will please join me. I will write more about this in my next entry which should be posted soon.

A little R & R

2007-06-03T19:03:00.001-04:00

I recently returned from a wonderful vacation in Italy. It was our tenth anniversary for my wife and I so we decided to treat ourselves to a special trip. We visited Rome, Florence, and Venice as well as many small towns along the way. Here we are on a gondola in Venice. It was a wonderful trip and I saw and learned quite a bit, especially about Italian culture.

I was impressed about how important relaxation is in Italy. They take breaks from 1-3 to have a long lunch and nap. Dinner tends to be later than I am used to and lasts much longer. People seem to be much less in a rush than we are in America. It seemed to me that Italians savor the moment, rather than rushing to get to something accomplished. I thought this was a healthy perspective on life. It certainly reduces the stress level. The only thing that really surprised me was the amount of people who were smoking. I guess they don't have the same warning labels as us or are less concerned about cancer.

I returned to the US and resumed my life, but tried to maintain that Italian sentiment of relaxation. Today I went for a blood test prior to my next 3-month check-up in a few weeks. Since it was a Sunday, the normal blood lab in the clinic was not open. Instead I went to the infusion room on the 10th floor at Dana-Farber. I had not been to this unit before. An infusion room is where people who need to receive chemotherapy go to get their medication. Since some of the medications need to be given slowly over a several hours, people sit there for long stretches of time.

On this particular day, the unit was full of people connected to tubes of medication dripping slowly. Here I was in the middle of these people only needing a routine blood test. I was thinking about how toxic the chemotherapy agents can be. While they may be effective at killing off cancerous cells, they also kill off many other things, leading to other complications.

I am very lucky that I have not had to go through this process at all and that the medication I take is targeted to only attack leukemic cells and nothing else. I felt somewhat guilty about how easy my treatment has been relative to these poor people who were sitting in this building on a Sunday morning. I was able to leave after my blood test while they had to sit and receive their treatments.

Even more evidence why we should live for today!

#1055

2007-04-21T07:42:00.000-04:00

I received an email after my last post from Zavie Miller, a fellow CMLer from Ottawa. He maintains a database of people with CML who have undergone treatment with Gleevec. Zavie wrote to me soon after I was diagnosed as I read the CML discussion boards. He told me about his Zero club. For people who reached a level of zero on a test called PCR, they became members of this club. It essentially indicates that Gleevec is working and you are doing very well with the treatment.

Zavie wrote me yesterday to let me know that I was member #1055 in Zavie's Zero Club. I was excited to reach this level. I remember writing to him telling him that I hoped to join his club soon.

The CML community is strong and supportive. If you have read my comments, you have also seen comments from Annie who maintains a blog called Living with CML. Annie's son Stephen was diagnosed the same week as me and he has also reached the same milestones.

The good news is that Gleevec works and works well. I am very lucky to not only have this treatment, but to have the social and emotional support to fight this battle.

One Year Results

2007-04-11T13:54:00.000-04:00

I had my one year checkup a few weeks ago. This included blood work and the ever popular bone marrow biopsy. Interestingly, my primary oncologist performed the biopsy this time and I hardly felt anything.

The results have just come back and everything seems to be on track. I continue to be in hematological remission and cytogenetic remission. In terms of molecular remission, I have had a 2 log reduction on my PCR test. I was originally at 30% and have dropped to .3%. This is great news at 12 months. The doctors are hoping to have it drop another log (.03 for those of you who don't remember your high school math).

Despite the anxiety of waiting for test results, I have not been particularly anxious about the results. I have been feeling good physically so I was anticipating a positive response. Perhaps I am too distracted by my non-cancer life that CML moves to the back burner. It is nice not to dwell on this issue.

I also just received notice about next fall's Light the Night Event. I am going to start working on this fundraiser soon so stay tuned.

Cancerversary

2007-03-03T15:02:00.000-05:00

Today is the day. It is one year since I was diagnosed. I remember the day well. I had been at work all day and stopped on the way home to pick up Chinese food for dinner. As I walked in the door, my wife said that the ophthalmologist who I saw that week had called and told me to call him as soon as I got in. I was expecting bad news, but not what he told me. Needless to say, he said I had leukemia and told me to go to the hospital. I was admitted that night and spent the next five days trying to confirm which type of leukemia.

I am not sure if this is a day to celebrate or to mourn. I certainly feel a little odd. I was supposed to be in New York celebrating my cousin's Bat Mitzvah. Instead, I am home because my oldest daughter has strep throat and is feeling very sick.

Anyway, one year has passed quickly and my adventure continues. Thanks to all of the people who have supported me during the past year and made this situation as easy to deal with as possible. Let's hope that this year brings complete remission and CML might be something I can start thinking about in the past tense. Not that it ever goes away, but at least if it is fully in check, I will hopefully think about it even less.

Here is a recent picture of my daughters and nephew since some of you have asked for a recent picture.

A Little Piece of Heaven

2007-03-01T14:20:00.000-05:00

Let me start by apologizing for not writing for some time. I have received complaints (rather suggestions) to update my blog. It has been almost 2 months since I have written. There are a number of reasons. Not much has happened with me in terms of CML. I have not had a doctor's appointment or blood work since December. I am going in later this month for my 3 month check-up and the ever so exciting bone marrow biopsy. The other thing that will happen in 2 days is my Cancerversary (to borrow a phrase from Erin Zammett Ruddy). March 3rd will be the one year anniversary since I was diagnosed. That is kind of amazing to me that the time has gone by so quickly. The good news is that I continue to feel very healthy and as far as I can tell, the CML seems to be in control. After my last check-up, my counts were all excellent and I was ahead of schedule in terms of where the doctors wanted me to be at this point (then again, I have always been an early bird).

I find it interesting that I have not been thinking about CML very much at all. Whereas last year at this time, it was dominating my life, it has taken a back seat to other, potentially more important things. That is not to say I forget about having CML, I just don't dwell on it. I used to spend a lot of time reading the CML discussion groups. I am doing that less and less. Perhaps it is denial, but I will be reminded again later this month during my trip to Dana-Farber.

So what have I been doing to occupy my time. The picture above should give you a clue. I just spent an incredible week with my family (wife and kids, brother, sister-in law and nephew, and parents) in beautiful Colorado. Some of you may not know this, but I was actually born in Colorado, so I guess you could say I was a native.

The picture is of Beaver Creek where we stayed and skied for a week. It was so sunny and warm that I came home with a sunburn. A big thank you to the Horvitz family for letting us stay with them and enjoy this little piece of heaven. We were not that far anyway, since we were 10,000 feet up. It took a little while to get adjusted to the altitude and the time difference, but it was worth it. I have found that taking time for myself and my family is essential. That is good advice no matter what you are dealing with.

A Year to Remember

2007-01-02T13:06:00.000-05:00

Happy New Year! So 2006 was not the greatest year for me and my family. Getting a cancer diagnosis can put a damper on even the brightest moments in a person's life such as having a new baby. On top of that, other events happen in your life that you are forced to deal with no matter what your physical and mental health status might be. This year posed all of these challenges for me and my family.

Fortunately, CML has become less of an issue everyday. At my most recent checkup after Christmas, my doctors were very pleased with my progress and felt that I was ahead of where they were hoping I would be at this point. Technically, I have had a complete hematological and cytogenetic remission. I am working on the final remission which is molecular. I am almost there.

Needless to say, I am thrilled with the news and the progress that Gleevec has allowed me to attain. Interestingly, the effects I am now feeling most are related to coping with the diagnosis. I think I have had a bit of a delayed reaction to CML. Initially, I was so focused on fighting this disease, learning about it, and raising money for research, that I did not focus on what having cancer has meant.

Last week I went to Dana-Farber for a checkup. I took the train to the hospital for the first time and had a lot of time to think about cancer and the hospital. I find that before going to the hospital, I become very irritable. I am not nervous about my appointments, because I know I am doing well. Instead, I feel angry that I have to deal with any of this nonsense. I love Dana-Farber, but when I sit in the waiting room, I think to myself, why should I have to be here. I am sure everyone around me in the waiting room is having the same thought.

Perhaps it was distraction or denial before, but I must now face the fact that I have cancer and will have to live with it for the rest of my life. It reminds me of the email I received when I first signed up for a CML discussion group. "Welcome to the club that nobody want to belong to." I think they lifted that line from Gilda Radner, but it is certainly appropriate.

Despite all the emotional impact CML has had over the past year, I have certainly learned a lot about myself, my family, friends, and cancer. My hope for this New Year is that it will be a lot less stressful with no major bad news to try to cope with. May I also reach molecular remission so cancer take a back-burner to more important things like living and enjoying life.

Not alone

2006-11-18T17:17:00.000-05:00

So I am in Chicago at a conference that I usually attend every year. Although the conference is not overly intriguing, I usually go in order to catch up with friends from internship days and to visit a city. On this trip, we were also able to schedule visits with some college friends of mine.

Coming to the conference, I was a little hesitant because most of the people I wanted to see, I had not seen in about 2 years. I am not great about keeping in touch with these folks, but when we get together, it is fantastic. I was apprehensive because as far as I knew none of them knew about my diagnosis. I was dreading the awkwardness of the conversation. I anticipated it would go something like this:

"How have you been?"

"Great."

"What's knew with you?"

"Well, I was diagnosed with leukemia."

Talk about a conversation stopper. I did not want this to be the first thing we talked about, but I did want to tell these people about this important change in my life. It just felt weird that I had this burden of a topic to discuss.

Within an hour of starting the conference, I ran into one of my friends, Deb, I was hoping to see. Here it was, the awkward moment. When I asked her how she was doing, she told me she had a tough year and was diagnosed with colon cancer. I was astounded. Here I was worried about disclosing my own cancer diagnosis, and she was dealing with the same issue. I told her that I too had been diagnosed with cancer this year and we both kind of stared at each other in disbelief. We had both joined a club we did not want to belong to in the first place. She told me about her surgeries and chemotherapy, but that she was also in remission. I was relieved to hear her progress, but felt guilty about how relatively easy my treatment had been in comparison.

While hearing Deb's news was a huge shock for me, it also paved the way for a smoother transition with my other friends who did not know. Since Deb and I are both psychologists dealing with cancer, we both had similar notions. How do we make our experiences helpful to others? I tossed around the idea of doing a book together with her or something to help other younger people who are diagnosed with cancer.

Needless to say, although cancer can make you feel very isolated, sharing this news with Deb made me feel much closer to her. I said to her "isn't it annoying that we are even having this conversation?" Oh well, you play with the hand you are dealt and I hope we can make a royal flush out of this one.

Obladi Oblada

2006-11-16T09:57:00.000-05:00

It has been quite a long time since my last post. That is for a good reason. Not much has happened to me in regards to CML. There are many days when I don't think about CML or worry about it at all. It is interesting how CML has taken a back burner in many respects. I almost forgot my medication last week. Fortunately, I use a pill case that does not let me forget.

When I was first diagnosed, I went through a similar thought process that I suspect many people go through when diagnosed with a potentially fatal illness. I wanted to live life to the fullest and focus on what is important in life. I think I try to do this anyway, but in reality that is a hard thing to accomplish. I need to take care of my family and work and that takes a lot of time. My wife and I have been better about scheduling time for ourselves and getting a babysitter more often. We are also planning our 10th anniversary trip to Italy in the spring.

In terms of cancer news, I am doing quite well and just waiting for my next blood test. That will take place right after Christmas as I travel up to Dana-Farber in Boston. I am feeling good and my only side effects from the medication are muscle spasms in my legs and mild nausea in the morning.

I reported on my last blog about how proud I was of our Light the Night Team. As a team, we raised over $23,000 for the Leukemia and Lymphoma Society and we were the highest fundraising team in the state of Rhode Island. I was so impressed by the hard work and dedication of my team members and the generosity of the donors. Having such a wonderful support network makes dealing with this cancer nonsense that much easier. Although I am taking a short break from fundraising, I am starting to brainstorm about other creative ideas other than simply asking for donations. Although that seemed to work quite well, I want to find other ideas. I welcome any suggestions.

In the meantime, I am off to Chicago with my family for a conference and to visit with friends.

Oh What a Night!

2006-10-03T18:34:00.000-04:00

Light the Night in Providence, RI took place on Saturday, September 30, 2006. It was an incredible event. I did not realize how many people would be there. There were over 1000 registered walkers and many more who were not registered. A sea of red and white ballons lit up the dark skies down Blackstone Boulevard. It was a moving experience.

I was so impressed with my team. We really rallied together and were able to raise a huge sum of money. Prior to the event, our total was over $21,000. More money came in at the event and over the next couple of days. I am awaiting our final tally from the Leukemia and Lymphoma Society.

It was overwhelming to feel the support of my family, friends, and coworkers who have been with me throughout this process. To see a team of 60 or so members walk in my honor was very humbling. It is hard to put into words the meaning of this support and what these fundraising efforts symbolized to me.

In other news, my six months results came back and they were quite good. My PCR test showed an almost 2 log reduction since I started. This is a complicated statistic, but it means that my numbers are heading in the right directions. A 3 log reduction is expected by 18 months on treatment so I am getting close. Also, my cytogenetics test showed that as opposed to March when my cells were 100% leukemic, they are now only 1%. My doctor told me that anything less than 3% was in the normal range. I have not seen the lab results yet, but this is the information my doctor emailed me. This is all great news indicating that Gleevec is working. All the more reason to give to an organization like the Leukemia and Lymphoma Society. They funded some of the research to help develop this medication.

Six months and counting

2006-09-20T20:22:00.000-04:00

Today was an exhausting day, both emotionally and physically. I had my 6-month check-up at Dana-Farber. This was my first appointment in 3 months. It was a little scary to have no blood results for a 3 month period. In addition to blood work, I also needed a bone marrow aspiration and biopsy. (More on this in a little bit.)

I have written before about what it is like to be in the outpatient unit at Dana-Farber. In some ways it is truly awful and in other ways it is amazing. The first thing you notice is how packed the place is. The fact that this many people have to deal with cancer is unbelievable. Then you start to look at the people. Many of them have no hair and are wearing masks and gloves. It is a frightening sight because it makes you think that this could be you if treatment does not go well. I always feel a little out of place and guilty since I have not had to go through any of the same treatments that most of these people have had to endure. I am very lucky with the CML diagnosis and the ease of the treatment so far.

My bloodwork came back with almost all counts within the normal range. This is the hematological response that I had within a month of starting Gleevec. One of my oncologists then did a physical exam and everything was normal. Next was the bone marrow work.

A bone marrow aspiration is an important part of monitoring treatment effectiveness. Although much information can be gained from peripheral blood (regular blood draws), much more can be learned by looking at the marrow. The marrow is where new blood cells form. If they are producing more healthy cells than leukemic cells, that is a good sign. There are a lot of complicated tests and statistics associated with these tests, but I will not have results back for a couple of weeks. I will write more about this topic then.

The bone marrow aspiration and biopsy is an uncomforable and somewhat painful procedure. The worst part for me was the novacaine to numb and area on my hip. As I lied on my stomach, the doctor gave me a number of shots of novacaine and then there was a burning sensation soon afterwards. I think that area of the back is particularly sensitive anyway, so the feeling is worse. I never have problems with giving blood or getting shots, but these hurt.

The next step is removal of the marrow. In order to do this, the doctor puts a rather sizable needle through my hip bone and into the area where the marrow is located. Getting through bone is not so easy and he really has to push and twist to get to the right location. The best way to describe this is to think if using a corkscrew to open a wine bottle. When he does reach the right area, he then removes the marrow by suctioning it out. This is the weirdest feeling because it felt like an intense vacuum. My doctor described it as someone pulling on your leg, but I didn't find it that funny (bad joke). After he removed 2 large vials of the marrow (which looks like red blood), he then needed to biopsy a small piece of bone. This felt like a quick pop. Not too bad.

That was the whole procedure. It only takes about 10-15 minutes. Relatively speaking, it was not the worst pain I have ever experienced, but it was not something I am ever going to look forward to either. Now that the procedure is over, the waiting game begins.

Huis Clos

2006-08-31T20:18:00.000-04:00

Sorry for the obscure French reference. Huis Clos is a book by Jean-Paul Sartre that translates to No Exit. This was a book I read in high school. I chose this title because I was thinking that sometimes with CML there is no escape. That is not necessarily a bad thing, but there have been a number of circumstances when CML and/or cancer has come up in unexpected ways. Most of the time I don't think about CML and even forget that I have it, but it has a way of sneaking up on me.

A few weeks ago, I was at a weeklong workshop on the treatment of ADHD. The speaker made numerous references to medication treatment for ADHD and how it is going to target the genetic markers similar to the way cancer treatments, like CML now do. CML was the last thing I was expecting to be thinking about during the workshop.

A couple of times over the last few weeks, I have been referred to as ill or sick. It is funny because I never think of myself as sick or ill. This may be denial, but since I never felt sick, to me CML is a condition that I am working hard to control and not a sickness that is threatening me. This may be a naive view, but I think of CML as a part of my life that I deal with like any other stressor I might encounter. Since it often equated to diabetes treatment as a chronic condition, I don't really see myself as a sick or an ill individual. That is why I kind of struggle when people ask me how I am feeling. I am fine and have never felt sick. It is just a natural question for people to ask when they assume you are sick.

In other CML news, our Light the Night team has raised around $13,000 so far for the Leukemia and Lymphoma Society. I am incredibly impressed and humbled by people's generosity.

Irony

2006-08-10T10:49:00.000-04:00

I was just doing an internet search of this blog to see if it would come up in a google search. It did not. Instead, one of my hits was for an article on research I conducted for my dissertation. Here is the link. It shows a picture of me in 2001, 5 years prior to diagnosis working with a leukemia patient. I know I have mentioned the ironies in my diagnosis in the past, but this picture really hit home. I remember working with this boy every time he came in for his treatment. He had a different form of leukemia which required ongoing chemotherapy. He would get so nervous about having the needles inserted, so I would distract him using a virtual reality system during the procedure. It worked so well for him that he would sometimes not realize when the nurses were done. I still use virtual reality, but now I use it to treat people who are afraid to fly, speak in public, or heights.

Sometimes I wonder if there is a reason I have leukemia. Othertimes I think it is just bad luck. Either way, I still have to deal with it. I am lucky to have an easy treatment and great support around me. Hopefully, I will never need distraction like that boy did in my study. Although, I do have a bone marrow biopsy coming up next month. Something to look forward to.

Updates

2006-08-03T11:45:00.000-04:00

It has been a while since I last posted. I have been busy working on the Light the Night Fundraising campaign and trying to raise money with Team Gershon. We have a lot of people signed up to participate in the event and we are already raising money. I think in the couple of weeks since we started we have raised about $1500. I am hoping that we can do a lot more, but it is a great start. For more information about the Light the Night event see my previous post.

Last week, a press release linked Gleevec use to heart failure. The articles seemed to imply that using Gleevec increases your chances of heart failure. My poor grandmother was frantic when she saw the information flash by on CNN. I told her I would look into this and find out what I could. I immediately went to my scientific resources. As I was trained to do during graduate school, I never rely on the press to report on scientific findings. Instead, I went to the original article which was published in a journal called Nature Medicine. The study reported on 10 individuals who were taking Gleevec and also had heart failure as well as a mice study. It generally found that these individuals who take Gleevec might have an increased risk for heart problems. This does not mean that anyone should stop taking Gleevec, but heart monitoring might be warranted in addition to other regular testing. I also was in touch with my doctor who said that he was not going to be ordering any additional tests at this time, but we could talk about this at our appointment in September. Needless to say, this was a bit of a scare, but my estimation is that this information was blown a little out of proportion by the press.

In other news, I have written before about Erin Zammett Ruddy who was diagnosed with CML in 2001 and writes a column in Glamour Magazine about her experiences with CML and Gleevec. She has also written a book called My (So-Called) Normal Life, which is excellent. She has just started her own blog called Life with Cancer. You can click on the link to read and comment about her experiences. She is a very honest and funny writer if you have not previously read her columns in Glamour.

Giving Back

2006-07-14T08:16:00.000-04:00

It has been a relatively slow summer on the CML front. I do not have another appointment until September. It is almost as if everything is on standstill until then. Fortunately, I have felt very good with minimal side effects.

I have decided to start working on fundraising for the Leukemia and Lymphoma Society through and event called Light the Night. This is an event where a team gets together to raise money for this wonderful society that provides excellent support services for patients and families affected by blood cancers. Possibly more importantly, they invest in research for blood cancers such as CML. Because of this organization and other similar societies, research was funded to develop Gleevec. In fact, such progress has been made recently that a second medication called Sprycel has been approved by the FDA for CML. A third medication Tasigna is slated for approval later this year. Without research funding from the LLS, none of this would be possible. Unfortunately, there are many other blood related cancers with fewer treatment options available. More research money is desperately needed.

Needless to say, I want to give back and I need help from you. There are many ways to help. I am putting together a team called Team Gershon to try to raise as much money as possible for the society. If you are interested in joining my team, you are able to walk in the Light the Night March on September 30, 2006. We will be walking down Blackstone Boulevard in Providence, RI holding lit balloons. My hope is that all my team members will try to raise money on their own to support the team and the efforts of the Leukemia and Lymphoma Society. I would love to have a huge team of walkers. All registered walkers will be able to make their own donation web page and the LLS helps you with seeking donations. They make it very simple and fun.

The other way to help is to contribute directly to the team fundraising campaign. I have a website on the Leukemia and Lymphoma's Society page which explains this is more detail and allows you to donate or become a member of Team Gershon. The web address is http://www.active.com/donate/riltn/1817_jgers01

I thank you in advance for helping me with this effort. Any contribution can be helpful.

And the Winner is...

2006-06-22T13:39:00.000-04:00

I am reporting on my 3-month blood results which I received yesterday from my oncologist. I feel like I am revealing the winner of American Idol, but really all I am doing is telling you who made it to the quarterfinals. This is a long and slow process and my results are only a glimpse into how well the medication is working.

Without further ado, the results were quite good. Several tests were repeated from when I was initially diagnosed. At diagnosis, my blood cells showed that 100% were called Philadelphia Chromosome Positive (PH+). My 3-month results shows that only 22% of my cells were Ph+. That is a big drop and anything under 35% is generally considered a cytogenetic response. The other test I had was called a PCR (Polymerase Chain Reaction) test. This one measures my RNA and something called the BCR-ABL transcripts (thanks to Anjana for this information). The PCR test is a very sensitive test and my understanding is that it measures the molecular response to the medication. My initial score on this one was 34.56%. Now it is at 10%. That is going in the right direction. A fantastic result would have been a 1-log reduction or 3.45%, but it is not far off. My doctors are much more concerned about the 6 month data. Right now, it is like peeking at the results before the study is complete.

I apologize for the technical jargon and I know that it can be hard to understand. I certainly do not understand much of this. That is why I rely on the CML support groups to help me interpret this information.

Needless to say, my 3-month results are very good and suggest that I am responding well to the Gleevec. At 6 months, these numbers should be even better. By then, I hope to make it to the semifinals.

The Waiting Game

2006-06-15T08:42:00.000-04:00

I had my 3 month appointment yesterday at Dana-Farber. It was just a routine visit other than the fact they did additional blood work to see how effective the Gleevec has been over the first course of the treatment. What they are looking for is a cytogenetic or chromosomal response. I have already had a hematological or blood response with my blood work returning to the normal range. These next tests look to see how things have changed in the chromosomes. The final thing that will eventually be examined is the molecular or DNA response. I know this sounds very scientific, which it is. The major implication is to see how well the medication is working at this point and can it eradicate the CML. They don't talk in terms of a cure, but rather molecular remission.

The annoying news is that I have to wait for about 2 weeks to hear the results. I have no other lab work or another appointment until September. At that time, I will have my next bone marrow biopsy. This is certainly something to look forward to. Not to be too graphic, but this means that they will stick a large corkscrew-like needle into my back and take out some bone marrow from my hip bone. When I had this done the first time it was one of the most bizarre sensations I have ever experienced. It was not incredibly painful, but there was intense pressure, especially when they removed the needle. The doctors explained to me that there was a vacuum created by removing the needle which led to the pressure. The worst part of the whole thing was the novacaine shots.

During graduate school, while I was working on my dissertation trying to distract pediatric cancer patients during medical procedures, the nurses and the doctors on the unit asked me to help them out with a patient. A teenage boy was diagnosed with a form of cancer which produced a very large tumor on his lungs. He needed to have the same bone marrow biopsy, except that he could not have novacaine. They were worried that if they did this, his lungs could collapse or he would not be able to breathe. They asked me to use my virtual reality distraction to help this boy out. This was the first time I had witnessed this procedure.

During the procedure, I was trying to focus on the boy and trying to get him to play the virtual reality game. His pain was so intense, however, that he could not focus or even look at the screen. He was screaming and crying. I could hear the doctors trying to work as quickly as possible. I recall this awful sound of bone cracking as they pushed the needle through his hip bone. I also remember seeing them twist the needle, like a corkscrew, to extract the bone marrow. Needless to say, my distraction was not very successful since the pain intensity was too much for him. He managed to get through the procedure, but not because I was able to do much for him.

When I was first told about the bone marrow biopsy in the hospital, I vividly recalled the experience this boy had when I tried to distract him. I knew that it would not be as intense for me with novacaine, but nonetheless it was still an ordeal. Now I have three months reprieve before having to do it again.

A Rose is a Rose

2006-05-31T09:49:00.000-04:00

I have been writing fewer updates since there has been little to report. Of course that is a good thing, but it just intensifies the waiting game. Next month, I will have my first blood test to determine whether I am having a cytogenetic response to the Gleevec.

In the meantime, I was thrown for a bit of loop over the past couple of days. My side effects have now been minimal to nonexistant. Two days ago, I became really tired in the morning and took a 2-hour nap. I am not a napper and throughout this process, I have never felt tired. This was a little worrisome. Was I now getting a new side effect? The other strange development was that I started having a couple of bad leg cramps again. I had not had this side effect in about 6 weeks. I took some tonic water as suggested by my doctor. The next morning, I woke up with intense abdominal problems. I won't go into much detail here although you can use your imagination. It turns out that I caught the stomach bug that my youngest daughter had last week.

I guess when you have CML, you become hypervigilant to any physical symptom you might have. I am now over the bug within 24 hours and back at work. Sometimes a stomach bug is just a stomach bug.

Twelve for Twelve

2006-05-13T15:23:00.000-04:00

Several weeks have gone by with little to nothing to report. It is funny how life continues and how cancer can be on the backburner. I received a call this week from the search coordinator of the bone marrow tranplant (BMT) team at Dana-Farber. She let me know that they had found a 24 year-old male whose HLA typing (I need to research more about what this means) matched me on 12 of the 12 items. That was as good as it could get for a BMT donor match. Ironically, this news came a day after I received a $1900 bill for lab tests which I assumed was related to this search. Cancer is expensive undertaking. She told me that they will do some further health screening to ensure that this donor is healthy. In the meantime, they will continue the search to have a backup.

This "insurance" of a donor gave me some mixed emotions. I was certainly happy and relieved to have match, but the more I learn about BMT, the more scared I am to have to ever have one. If all goes well with the medication, this whole search process could be a moot point. Also, with all the medications on the horizon and the current research trends for CML, it is quite possible that a medication that cures CML may be out sooner rather than later. In the meantime, I need to give Gleevec a chance to work its magic.

I have also been keeping myself busy corresponding with numerous people who have been affected directly or indirectly by CML. There is a vast community that is quite supportive of each other and I have been impressed and reassured by my correspondences. I have even been on the other end, despite my recent diagnosis, of giving advice to someone who was just diagnosed. In two months, I have developed an expertise in CML. My wife and I were just talking about how we couldn't believe it has only been 2 months.

I wanted to recommend a book to people that I am almost finished with. I have been reading Erin Zammett's My (So-Called) Normal Life. She is an editor with Glamour magazine who was diagnosed with CML at age 23. She writes in a very matter-of-fact manner about her experiences with this disease both in a column for Glamour as well as in her book. You can read her diary at the LLS website or at Glamour magazine. I have found this to be extremely useful information, especially for someone who is newly diagnosed. I believe her book is coming out in paperback next month.

Later this week, I am back at Dana-Farber for my monthly checkup. I am not expecting any big news at this visit, but it is always a bit of an ordeal when I take a trip up there with my wife. My youngest daughter will be there as well. The waiting room at the outpatient clinic is a hard place to be. I always feel a little strange since I have my hair (well most of it anyway) and I am not wearing a mask to keep out the germs. In some ways, I feel out of place like I am in the wrong building altogether. Despite this strange sensation, it is a wonderful hospital and I am very pleased with my treatment and team of people who help me there.

All Quiet on the Eastern Front

2006-04-28T08:45:00.000-04:00

I have not posted an update for a couple of weeks since not much has changed. I have learned that much of the treatment is a waiting game and I really won't know any definitive answers until my 6 month check-up in September. At that time, I will have a bone marrow biopsy which will help determine if the Gleevec is working on a molecular level. I continue to have weekly blood counts and the numbers seem to have stabilized. My side effects have been quite minimal. I am down to about 15 minutes of mild nausea in the morning. The muscle cramps have gone away for now.

In terms of other updates, the transplant team has made progress in their search. An initial search yielded 46 potential unrelated bone marrow donor matchs. The next step is to test these people again and check their health. Currently, there are 3 people being tested. This could take some time to hear back.

I contacted the Rhode Island Blood Center to find out more information about gettting on the bone marrow registry. They told me it is a very simple process which essentially involves giving some blood and filling out some health form. I was told that in Rhode Island insurance will cover this, and if not, there is apparently a charitable donation that picks up any noncovered fees. Anyone can walk in to one of the centers or to a blood drive to donate. Here is the information about locations Rhode Island Blood Center. For people outside of Rhode Island, you can go to the National Marrow Donor Program's website to find donation centers near you. The guidelines are typically that you must be between 18 and 60 and in decent health. You also have to be willing to donate your marrow to anyone who might need it.

I continue to feel quite good and it is somewhat amazing how life continues on. I don't have any doctor's appointments for a few weeks. Life is as normal as it can be for now. Let's hope it stays that way. I am very comforted by all the messages of support I receive from people.

The Eyes Have It

2006-04-18T11:49:00.000-04:00

I just came from an appointment with my opthalmologist. This is the person who first suggested that I might have Leukemia after he found retinal hemorraging in my eyes. When he looked at my retinas today, the bleeding had cleared up considerably, but was still present. He expects that this will go away in time. In the meantime, my vision has been much better, especially in terms of light sensitivity. I continue to feel good with minimal side effects.

The other major change has been my involvement with the online world of CML. There are many communities on the internet and each diagnosis has its own message boards and discussion groups. I have been very impressed with the boards I have read. I posted a link to this blog on one of the sites and received some great messages of support from people who I have never met before. I have also received many messages of support from friends and family who have read this blog. That really lifts my spirits a lot.

I received an email from a mom of a CML patient who was diagnosed the same week I was. Her blog is very insightful from the mother's perspective. I put a link on my site since I found her writing very profound. The site is Living with CML.

On a more technical note, some people have asked me how they get updates of this blog. I put a couple of links on the page. You can add it to a Google Home Page and it is like a newsreader. If you follow the Google button on the side, it will take you through the process. Also, there is a site feed link if you use a newsreader program. Essentially, the site can be an RSS feed, just like adding any content you might already check regularly. I really like the way the Google Homepage works for this purpose.

A pretty good week

2006-04-14T07:33:00.000-04:00

I have now been taking Gleevec for about a month. Besides a little mild nausea and some awful muscle cramps, things seem to be going well. I went to Dana-Farber this week for a check-up with my oncologist. My blood count stayed about the same as last week with my white blood count now slightly below normal. There was some concern about it dropping too much (below 1000) in which case I would have to come off the Gleevec for a little. So far, it appears as though the counts may have stabilized.

We spent time talking about some of the original tests that confirmed my diagnosis and questions I had based on discussing CML with others and reading bulleting boards about CML. It turns out I am in the chronic phase of the disease. This is essentially the first phase when people often do not have other symptoms. The next two phases are called acute and blast. I also wanted to see what my percentage of leukemic cells were. I was told that they were 100% at the time of these tests. My doctor said the goal was to have them at around 35% at 6 months. That would help us determine whether the Gleevec was making the cytogenetic changes it is supposed to.

At this point, it is a waiting game. I continue to take my medication, have weekly blood work, and monthly check-ups. I have also been working with the transplant team to find potential donorfor bone marrow if I should ever need this procedure. I found out that this process can cost between $5000 up to $100,000 since any potential match needs extensive screening to make sure the donor is healthy. Fortunately, the charitable organizations that so many people give money to are helping with these costs.

I am quickly becoming an expert in this disease. There is an incredible amount of information to learn. If anyone is interested in learning more, the Leukemia and Lymphoma Society (www.lls.org) has free courses online to learn about CML and many other blood diseases. I also check the daily blogs of CML Hope (cmlhope.com) which provides the latest scientific and news stories as well as patient experiences with CML.

A lot of people have been asking me about becoming bone marrow donors. This is a relatively simple process that involves a blood test. Essentially, it is a matter of finding a blood donation center near you. Here is a link with some information from the Bone Marrow Foundation (http://www.bonemarrow.org/index.cfm?action=test&area=13). What is nice about these registries is that you can become potential donors for anyone needing a bone marrow transplant.

No match

2006-04-05T14:03:00.000-04:00

I found out today from the transplant nurse that my brother's bone marrow is not a match for my own. I have mixed feelings about this. I am somewhat disappointed that he does not match since it would have been easier if I ever needed a transplant. At the same time, I feel like everyone is jumping the gun about doing a transplant in the first place. We are not sure if the Gleevec is working and the risks of a transplant are quite high. The nurse let me know that the next step was to look at the registries for a match.

I also spoke to a genteleman last night who was a volunteer from the Leukemia and Lymphoma Society. They have a nice program called first connections where they put you in touch with someone close to your age who has the same diagnosis. I spoke to this person last night and it was great to hear from someone who has been through this process. He has been dealing with this for 6 years and takes Gleevec. He is not having symptoms of CML currently.

The impact that this diagnosis has had on my life has been astounding. At times, I forget that I have CML. At other times, it is all I can think about.

Gleevec

2006-04-04T08:58:00.000-04:00

I started taking Gleevec (www.gleevec.com)on March 17, 2006. This medication has been called a wonder drug since it has changed the way CML is treated. Prior to its approval in about 2001, there were few options for CML treatment. The primary option was a bone marrow transplant which in the long-term could potentially cure CML. In the short-term, however, there are severe risks during the procedure itself. Other medications that were used had significant side effects were not as successful as Gleevec.

Based on my readings about Gleevec, it is really an incredible medication. As one of my doctors suggested, it is the poster child for the way we target treating some diseases in the future. What makes Gleevec so different is the fact that it is supposed to produce chromosomal changes to reverse some of the effects of CML. In addition, the side effects are fairly minimal compared to many chemotherapy medications.

So far, after about 3 weeks, I have had a few side effects. Initially, I had nausea for about an hour after taking the medication. That has slowly gone away. The other side effect I have noticed is muscle cramps, particularly at night. In my left foot, it almost feels like someone has put a vice around my foot. This does not last too long, but can be very painful. Those have really been the only side effects I have experienced so far.

The Gleevec has lowered my blood count into the normal range within 2 weeks. The doctors are monitoring my white blood count to make sure it does not go too low too quickly. I will have a bone marrow biopsy at 6 months to determine whether the chromosomal changes have started. That seems like an eternity to wait, but what else can you do.

Quite a month

2006-03-31T08:52:00.000-05:00

March 2006 will not go down as my favorite month on record. On March 3, 2006, after coming home from work and bringing home Chinese food for the family, I received that dreaded phone call. My wife let me know that the doctor had called with the results of my blood work and left his cell phone. I knew this could not be good news. He told me that my blood work showed that my white blood count was very high. I might have leukemia and he suggested I go to the hospital. The crazy thing about this situation was that I had very few symptoms other than some vision problems. I never felt ill. As I left to go to the hospital, I commented to my wife that I did not even have a chance to enjoy my wonton soup.

Needless to say, we were all freaking out. My parents came over to watch our children while my wife and my father went to the emergency room. I knew things were serious, but I was able to skip the whole waiting process in the ER and go right to a room. They put a mask over me to protect me from any infection. This was my first stigmatizing experience. Once I was in an ER room, the doctors ordered a lot of blood work and I eventually met with the oncology team that was on call that night.

Several ironies should be pointed out before I continue. First, the hospital where I was at also happens to be where I teach a class at Brown Medical School. This time, however, I was not the doctor interviewing the patient, but rather in this uncomfortable role of a sick person. The class I teach is to help medical students learn about bedside manners. I was very impressed by the demeanor and treatment I received by the oncology team. The other irony in this situation is that I was a little too familiar with leukemia. For my dissertation in graduate school, I worked on a pediatric oncology unit, primarily with leukemia patients. Knowing some information is good. Knowing too much is not always so good.

After my bloodwork came back, the doctors told me that indeed I had some form of leukemia and now they needed to confirm which kind, the chronic or the acute version. The course of treatment would be quite different for each so making this determination would be crucial. Their suspicions were that I had the chronic version or CML. I was told that the treatment would be substantially different. With AML or the acute version, I would be in the hospital for the next month. For CML, a new "wonder drug" called Gleevec had been introduced about 5 years ago that had changed the way CML patients recieve treatment. Prior to 2001, the primary option was a bone marrow transplant. This medication, however, has been so effective in reducing and/or eliminating symptoms that the protocols had changed. The best part was that this medication had few side effects and was taken in pill form at home.

At this point my mindet shifted and I starting praying for CML. How weird is that? Anway, after waiting for a few days to get test results back from a bone marrow biopsy ( I will save that discussion for another post), I was lucky enough to have the CML diagnosis confirmed. In fact, my doctors presented it in such a way that we were celebrating that I now had CML. I was discharged from the hospital that day. Later that week I went to the Dana-Farber Cancer Insitute for a second opinion and to find out about treatment options.

On March 3, 2006, my life changed forever. Finding out news like this can either make or break a person. While I am still in the early stages of this process and still trying to comprehend what this diagnosis means for me and my family, I am cautiously optomistic as well. In some ways it has kicked me in the ass, but in another way, it is forcing me to live life to the fullest. Without sounding too cliche, I am thankful for every moment I have. As I sat this morning feeding my daughter and staring into her eyes, I realized how lucky I was and that CML was not going to keep me from seeing my children grow up. As one of my doctors said, you should be planning on going to your grandchildren's weddings. I think that is a good outlook for now.