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.

Undetectable

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

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

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

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

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

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.
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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

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

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

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

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

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

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

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

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...

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

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.