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.