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


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.