You're going the wrong way

It has been a long time since I have written anything. For a while, there was little to write about. CML had become something really on the back burner for some time. Other than my 6 month appointments at Dana-Farber and my annual meeting at OHSU, I did not think of CML very much. Of course, I was continuing to take my medication daily, but it became automatic. Perhaps I was getting a little too cocky about this whole CML thing.

That seemed to change back in March. I had my regular appointment with Dr. Stone and had my blood work done. Since I had no new results, the appointment was fairly uneventful as usual. A couple of weeks later, I received my PCR results from Dr. Stone. For the first time in several years, my PCR was detectable (0.03) at Dana-Farber. While the number was still low and not a major cause for concern, Dr. Stone wanted the PCR repeated sooner rather than later. While I was mildly concerned at this point, Dr. Stone was not. I knew I was heading out to see Dr. Druker in Oregon in May, so I kept this piece of information stowed away until then.

Right before Memorial Day, I headed out to Portland or my annual visit with Dr. Druker and Carolyn. It was a fairly miserable weather spell, but I did manage to get a bike ride in along the rive. Here are some pictures I took during my ride. This is the famous Portland sign. The other picture is a floating bridge that I rode over.

My appointment was very good except for the fact that I learned that Carolyn would be retiring in the fall. She has been a crucial part of the team that helps me and Dr. Druker. She will be missed terribly. I spent some time talking about my last PCR with Dr. Druker. He was not overly concerned either and thought that a repeat PCR was in order. I had one drawn that day. We talked about contingency plans if this test result came back higher. Dr. Druker thought the result might just be an anomaly. One of the ideas presented was consideration of a switch to another medication, such as Tasigna, in case I had become resistant to Gleevec. It should be noted that my dosage on Gleevec was lowered to 400 mg last fall.

I had not known much about Tasigna or the other medications that were now second-generation treatments for CML. I had done so well on Gleevec that I had not really researched any of the other options. Fortunately, for CML patients, there are many other options besides Gleevec. After having this discussion, I did not do any additional research, however, awaiting my latest PCR result.

Last Friday night I received a call from Carolyn with the results of my PCR. The Molecular MD lab (the one that uses the international scale) found my PCR to be 0.05. This was essentially a 10 fold increase since my last result. It essentially confirmed the finding at Dana-Farber and suggested some action needed to be taken. Carolyn had said that we should now be thinking about a switch to Tasigna.

I started doing research that night on Tasigna. It is made by Novartis, the same company that makes Gleevec and is essentially Gleevec on steroids. By all accounts, it is about 30 times more powerful than Gleevec. The downside is that it is not the easiest medication to take. You cannot eat 2 hours before taking the medication and 1 hour afterwards, making it a little tricky. In addition, with greater power comes more side effects. As I read blog posts, there were some alarming side effects noted. I was not overly concerned because I did well on Gleevec with fairly minimal side effects.

I decided to consult with Dr. Stone and immediately made an appointment to talk to him more. He suggested that we might want to consider other medications as well. Before I met with Dr. Stone, I received a message from Carolyn saying she had consulted with Dr. Druker who said that I might want to consider another PCR test and also an increase in Gleevec before changing meds altogether.

I met with Dr. Stone this afternoon and we discussed this very scenario. After talking about different medication options and pros and cons of each, the course of action that was decided was to increase my Gleevec to 600 mg and see how my PCR responds.

Interestingly, we talked about another change in my medications that may have affected things. In the fall, I came off of my cholesterol medication simvastatin since my cholesterol was so low. After about 6 months off, my cholesterol began to increase so I recently went back on a low dose. Dr. Stone commented that Gleevec and simvastatin are known to increase the effectiveness of each other and this might have contributed to my number change.

Regardless of the reason, I was pleased with this course of action and started taking the increase dose of Gleevec this evening. This was certainly the first scare in this process and it is making me more vigilant. Perhaps I needed a little wake up call to remind me that I am dealing with a serious medical condition. We shall see how my body responds and I will keep posting on the blog with updates.

Reflections on my 40th Birthday

So today was my 40th birthday. I had a lot of mixed feelings about my birthday and did not want a big celebration, much to the chagrin of my wife and mother. For some reason, I felt that 40 meant that I was getting old. While nobody likes to get older, I realized I needed to take a different perspective altogether. In many ways, I am lucky to be alive. I was diagnosed with CML over 6 years ago. Not too long ago, the life expectancy of someone with my diagnosis was 5 years. That would have meant that I was not likely to reach 40. That was until Gleevec became available. This medication truly has saved my life and allowed me to reach 40 and be upset about it. How lucky I am.

I did have a very nice birthday. I did some of my favorite things. I took a long bike ride in the beautiful fall weather. I got to relax and spend time with my family. We even went to my favorite restaurant, Guido's in Providence where I ate my favorite dish of all time, linguine with white clam sauce. You can see the pictures above. Needless to say, a really nice 40th birthday.

I am thankful for turning 40 and all the wonderful things I have in my life. I am thankful to my family for always supporting me. I am thankful that I can be upset about getting older rather than worrying if I will make it to my next birthday.

Still Undetectable

I have not written for quite some time so I thought I would provide an update since a lot of people have asked me about how I am doing. To sum up how things are going, they are really good. I went two weeks ago for my semi-annual check up with Dr. Stone. Last week I received the results from my latest PCR test and they continue to remain undetectable. While I was there I took a picture of the Healing Garden which is located near the cafeteria at the new building at Dana Farber. This was a nice urban oasis and I would recommend checking it out if you happen to visit the hospital.

The other news is that I dropped my dose of Gleevec back down to its original dose of 400 mg. Some of you may remember that my dose was increased to 800 mg several years back after one of my PCR tests started moving in the other direction. It turned out that there had actually not been an increase, in fact there was a decrease as I had another one taken before I started the increase to 800 mg. The higher dose pushed me into molecular remission pretty fast and wasn't horrible. I did have some side effects from this, however, including GI issues and my eyes were constantly tearing. Almost two years ago, Dr. Druker moved the dose down to 600 mg and last spring down to 500 mg. That was fine until the insurance company changed and started charging me two copays for the meds. Needless to say, Dr. Stone dropped me back to 400 mg and that is what I started doing last week.

Several people have asked my about the annual Light the Night Walk which took place several weeks ago. My team did not participate this year as we decided to take the year off from fundraising. We have been doing this great event for 7 consecutive years and I felt that it might be time to try something new. I am looking into the possibility of doing Team in Training for bicycling as that has become my latest hobby. I will keep you posted.

In summary, life continue to be good and CML is in check. Let's hope they both stay that way.

Portland in the Spring

I recently returned from my annual visit to Portland to visit with Dr. Druker and Carolyn Blasdel. I had gone out by myself this year as schedules did not work out well for an extended visit. I was fortunate to find that JetBlue was now flying directly from Boston to Portland. The only downfall is that the only return flight they had was a red eye. Needless to say, I was pretty tired upon my return.

My visit was a little different than in past years. The clinic was much busier than I had ever seen it and I was put in a different room. This did not bother me too much. My meetings with the medical team were both excellent as usual. I never felt rushed and could ask as many questions as I wanted. This year, Dr. Druker had an oncologist from another country shadowing him.

We talked about dropping my Gleevec down a bit since I have remained undetectable based on my tests at Dana-Farber. My tests through Molecular MD have always found trace amounts of cells, but it is an extremely sensitive test. This time, my labs were accidentally run at the OHSU laboratory instead. They rated their lab as somewhere in the middle between Dana-Farber and Molecular MD in terms of sensitivity so I was not sure where it would end up. I received my results this week and the OHSU lab also came back as undetectable. Good news again!

We decided to lower my dosage to 500 mg from 600 mg and then check my Gleevec level next year when I go out for my visit. I was comfortable with this move.

On a more fun note, I took a very cool tour of Portland's food carts while I was there. In Portland, they have over 400 of these carts, most of them in permanent pods throughout the city. When I have visited in the past, it has always been hard to decide which one to choose. This tour allowed me to sample many. I would highly recommend it if you are visiting Portland. Here are some pictures.

6 Years

I was doing some errands this morning when I received an email from my CML buddy, Wanda, who let me know she was thinking of me today. At first I thought, what is she talking about. Then I remembered the date. Today is the 6th anniversary of my diagnosis. I am not sure if this is a date worth celebrating or forgetting, but it was certainly interesting that I had totally forgotten about it.

A lot has changed in 6 years. Fortunately, CML has been placed on the back burner. I will be reminded later this month when I have my 6 month visit at Dana Farber. In May, I will be returning to Portland to visit with Dr. Druker. I continue to be on 600 mg of Gleevec and so far so good.

I am thankful that CML has not taken over my life, but become a bump in the road. Let's hope it remains this way.

A Look Back at 2011

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.