Starting on Gleevec

The next two weeks after being diagnosed was mentally and physically draining. I was technically anemic. This means that about every 4 hours I felt like I needed to sleep. And I did….a lot! Mentally I was done. The hardest part of this whole ordeal is excepting you have cancer. I haven’t gotten to that stage yet, and I’m not sure when I will.

Sure enough, 3 days after I had my bone marrow test, they finally confirmed I had CML. Now we can go forward with the meds. If you have read my earlier post on “What is CLM” you know that the way they fight this type of Leukemia is with a designer drug called Gleevec. In 2001, the FDA approved Gleevec and it’s been saving people like me ever sense. Without this drug, I would have been told to put my affairs in order. 3 -5 years max. Now with Gleevec, I can go forward, not backwards.

After submitting the paper work to my insurance company and getting the final approval, we were finally able to start Gleevec. This was a bitter sweet day. Bitter that from this day forward, I would be taking this pill every day for the rest of my life. Sweet that because of this pill, I might just have “a life”. My Oncologist went on to tell me that 97% of the people who have CML and take Gleevec will have an normal life. She gave the example of a person who has high blood pressure. As long as that person stays on their meds, they can live a normal life. So, as long as I take this pill every day, check my blood levels regularly, everything will be ok. Worst case scenario, my blood levels start to go back up and I will have to have a bone marrow transplant. But, she told me that not to worry, that everything is looking good.

The first week or so on Gleevec was hell. Within 30 minutes of taking it, I would feel sick, like I needed to throw up. And for the first week, I did. Almost every night. Shortly after that, the bone aches and cramps would start and normally last until late morning. Gradually, the side effects got a little better, but the bone aches still seem to bother me, especially now that the weather was getting colder.

Getting Frustrated with my Doctor

During this time I was visiting my Doctor every week to take blood test and to make sure I was doing ok with the Gleevec. During that first month my blood levels went back to normal, but the side effects were still giving me problems. My Oncologist, although very nice during this whole time, didn’t really know what to do about the side effects and just told me to hang in there. This was tough. During one visit, I was meeting with her practitioner and asked her how many CML patients does my Oncologist have. She said, “you are her 3rd CML patients and we have about 20 that come to this clinic”. As I thought about what she said, no wonder she didn’t know what to do with the side effects, she hasn’t had enough CML patients who have experience what I ‘m going through. In fact, every answer she was giving me about CML, I had already read about on the internet. She never told me anything about my illness that I didn’t already know. What else does she not know? Is this Gleevec really going to allow me to live a normal life?

This really started to bother me. So, I went back to the internet. I wanted to find somewhere that said I have a 97% chance of a normal life. I couldn’t find it. The one thing I did find it that 97% of the people who start Gleevec live past the first 5 years. This is great news, but it says nothing of living a normal life.

I also started to join a couple of different networks. One of the best was the CML page of Facebook. As I read the postings that were there, I started to read a lot of people who started out on Gleevec with no problems and after a couple of years their body would build an immune to it and stop working. The more I read, the more I started losing faith in the “wonder pill” I was taking. I have to have a plan “B”. I needed more answers and I just felt that my Oncologist just didn’t know enough about my illness. I needed to find someone new….someone who only deals with people who have CML.