Wednesday, October 19, 2016

Back to Dana

I visited Dana-Farber for the first time in about 6 months. I always try to get the first appointment in the morning just in case my doctor is running late, which has been known to happen. This means an early departure around 5:15, arriving in Boston around 6:30.

Today, the traffic was fine and I arrived without incident. When I checked in on the laboratory level, the place was packed. They must have just opened when I arrived because they quickly started calling out names. I was amazed at the nearly 100 or so people waiting at 6:30 for a blood draw prior to the appointment.

I seldom have reminders about CML or cancer, but being at Dana-Farber is a huge one. I remember as I sit in this crowd that I am one of many fighting cancer. It reminds me that I am lucky enough to have the "good kind" but nonetheless, it is a constant battle.

In many ways, I hate coming to Dana-Farber. Don't get me wrong, it is a wonderful and incredible facility that provides ground breaking and amazing treatment to so many people. What I hate is the reminder.

Cancer is a big equalizer. It does not differentiate your race, wealth, or other health status. Cancer can affect any or all of us.

When I come here, I am reminded that I am part of this club that I never wanted to join. Interestingly, on most days, my only reminder is my medication. I don't get too many side effects. Last night, however, (perhaps as a cruel reminder about the appointment) I was awoken in pain with a severe muscle cramp. My pain was loud enough to wake my wife. Fortunately, this is really the only side effect I tend to get.

Today, with my doctor, I am discussing the generic version of Gleevec, imatinib. I am on my last couple of weeks of the brand version. While I recognize the enormous costs of taking the brand name (around $12,000 per month), I am cautiously optimistic that the generic will provide the same level of efficacy as the original. I have already taken a blood test to determine my imatinib levels while on the brand name. Once I switch, I will have another blood test to examine how effective the generic medicine is in comparison.

I will keep you posted when the transition occurs soon. For now, life goes on.

Thursday, March 03, 2016

Decade

It is hard to believe, but today is 10 years since I was diagnosed with CML. That, in itself, is an incredible thing. Given the life expectancy of someone diagnosed with CML in the days before Gleevec and other medications that are now available was only 5 years, I have now doubled that. Needless to say, I am thankful for Gleevec giving me this opportunity to live life with CML deep in the background.

As you can see by my lack of posts, I have not been writing much about CML. Frankly, there is not too much to say. I have been in Major Molecular Remission for many years now. While I have some fluctuations in my numbers here and there, for the most part, CML has mostly disappeared from my body. The amazingly sensitive tests (PCR) designed to find CML cells in the body, may find a cell occasionally. More often than not, however, my numbers say undetectable. I used to be overly focused on my numbers. Now, I sometimes forget to share my results with my family.

Other than my daily medication, my CML monitoring takes place four times per year. I have two appointments with my oncologist at Dana-Farber. I have one blood test at Dana-Farber in between. Once a year, I fly out to OHSU in Portland to meet with Dr. Druker. We try to make a trip out of it while there. I have come to really love Portland when I visit. Other than these 4 times, I really don't think about CML all that much.

It is hard to imagine being at this place when a diagnosis like this comes about. It was a very stressful time 10 years ago when this all happened. I suspect my family and friends were probably more affected than even I was. Today, we are more relaxed, about this, however.

When I think about it, I am so lucky to have diagnosed when I did. The fact that CML has shifted from a fatal illness to a chronic medical condition just speaks volumes about the advances in modern medicine.


Wednesday, June 04, 2014

Beautiful Portland

I recently returned to my annual Portland visit with Dr. Druker. This year was going to be a little different since Caroline, his longtime nurse practitioner had recently retired. I was fortunate to have contact with his new NP, Diana Brewer, prior to my arrival. She was very welcoming and accommodating and even facilitated getting my blood work done beforehand. Prior to even leaving for Portland, I had several PCR readings, one at Dana-Farber and the one at Oregon Health and Sciences University. Both were quite good. The Dana-Farber one showed that the CML was undetectable. On the OHSU lab, my results were "weakly positive" indicating that on this more sensitive test, a few cells were found to show some CML. Dr. Druker felt that this was statistically insignificant and essentially equivalent to undetectable. Needless to say, the pressure was off heading out West this year.

When I arrived, it was one of the nicest springs I had ever seen in Portland.I could see Mt. Hood clearly. The picture below was taken from the OHSU campus. Quite a view they have.


Often it is rainy or cold, but this felt like summer. I had a nice introduction with Diana. She was super sweet and pleasant and is a good addition to Dr. Druker's team. During my meeting with Dr. Druker, he talked about my excellent results and even after a slight scare last year with numbers going back up, everything is back to where it should be. He talked about some of the research he is conducting taking people off Tasigna who have been undetectable for 2 years. He was waiting on results, but felt optimistic that this might be a course of treatment in the future. Of course, it would mean having to switch medication, but with the possibility of coming off forever. This is likely a conversation for the future.

I had a nice appointment and then started my Portland adventure. I walked all along the waterfront area which was mobbed with people and the city's Rose Festival being set up. I also borrowed a bike from my hotel and took a ride along the waterfront. The following day, I had booked a biking tour of the Columbia River Gorge and waterfalls (see pictures below). It is truly spectacular as you can see from some of the photos below. Portland is an incredible city and I would recommend a visit to people who have not been there. Aside from the amazing offerings within the confines of the city itself, the outskirts (Mt. Hood, Columbia River Gorge, and Pacific Coast areas) are all so beautiful. I had a nice mini-vacation and things continue to proceed nicely with my health care.



Monday, March 03, 2014

8 Years

It is hard to believe, but it was 8 years ago today that I was diagnosed with CML. Fortunately, as you can tell by my lack of blog entries, there is not too much to report. Last year, I had a bit of a scare as my PCR numbers went up for the first time in many years. As I readjusted my CML medication and cholesterol meds, everything returned to normal. The interaction between the two was apparently helping me. Since then, things have been stable and normal.

I am thankful that CML is not something I think about every day. I am thankful that Gleevec exists and works wonderfully. I am also thankful to the wonderful doctors whose life mission is to cure and treat this disease. Finally, I am thankful for my family and friends for all the support I have received as I have dealt with this diagnosis.

Wednesday, October 30, 2013

Undetectable Again!

I have not posted for some, essentially waiting for test results. As you may recall, my numbers had unfortunately gone in the wrong direction last spring. Soon thereafter, I started on a higher dose of Gleevec and also went back on simvastatin. Over the summer, I had another PCR test revealing scores of about the same from what I had in the spring. The only good news was that the numbers were not going up, but rather staying the same.

Just a couple of weeks ago, I went for another follow up visit in Boston and to have another PCR done. This was now about 6 months after starting the increased dose and simvastatin. I talked with Dr. Stone about the plans depending on how the results turned out. He felt that if I was no longer responding to Gleevec, my PCR numbers would have gone up, not stayed the same. He also felt that the simvastatin was likely increasing the effectiveness of the Gleevec and coming off may have been the culprit.

Yesterday, I received my results. As you can tell from the title of this post, I was back in the undetectable range. Needless to say, this was a huge relief. The plan is to continue what I am doing with the dosages and have another test in a few months.

I am hopeful that CML will return to the back burner of my mind again. 

Tuesday, June 04, 2013

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.

Sunday, November 04, 2012

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.