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.


Dan said...

Hang in there Jon - yes, I still follow your blog. :) Thank goodness we have options, so if Gleevec 600mg doesn't do the trick, then one of the other TKIs will. Your PCR is still a solid MMR (mine was at 0.08% IS after 2 years of 400mg and doc's orders were to stay the course), so as long as you stabilize with at least one zero to the right of the decimal point, you'll be fine. Take care!

Maureen said...

I hope it will all go well for you; my son was put onto 600mg Gleevec from Day 1, and has done very well on that dose.I don't think there are any plans to lower it,after just 2 years.
Yes, it's a serious disease, and it's horrible that anyone has to have it, but as people keep saying to me, this is a controllable condition, and there are options.
I will check your blog, as I have been since I found it! - because you are the same age as my eldest daughter.

Anonymous said...

Any updates or further info?

Anonymous said...

Hi Jon - just looking for CML bloggers. My son was dx'd in 2008 when he was 10. His last pcr (from molecular md too) showed a 5-fold transcript jump. We're heading out to see Dr. D in a couple of weeks (yeah, really miss Carolyn!!!! will be meeting the new gal soon.) We may be switching to Nilotinib if my son (teenager) can deal with fasting. Anyway - best wishes to you. I'll be checking in again. Write some more!

Anna said...

Nice post..