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bone marrow transplant
miracle drug
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8 years
Side Effects From My Second Medication For CML 2004
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Greetings! This is article 2 in a series of 3 articles describing the side effects I have experienced on each of the three drugs I have been prescribed while treating my CML the last 8 years. Article 1 "Side Effects From My Second Medication for CML 2004" referenced the side effects I had while on Interferon injections back in 2003. This article will describe my experiences with Gleevec, and the third article "Side Effects From My Third Medication for CML 2007-Present" will discuss the side effects I have had with my current medication Sprycel.

Gleevec had just been approved by the FDA at the end of 2003 and it came just in time for me. The standard therapy I had been on was not working and if it had not been for the new "miracle drug" I would have had to go for a bone marrow transplant. So both my doctor and me were delighted to give this new drug Gleevec a try! The results in trials had been extremely encouraging. People who had been harboring high levels of Philidelphia chromosomes in their blood all of a sudden had significant drops in these blood levels. The CML tumor load was diminishing!

Gleevec is an oral drug. It was prescribed to me to take 600mg once a day. It was highly recommended to take the pills on a full stomach with plenty of water. Well this was exciting news and I was ready to go! I popped those first pills after eating a meal as instructed and ten minutes later I was vomiting. This drug was indeed toxic. I remember thinking it might kill me before the CML does. I asked for nausea medicine to take hoping that would help, but that didn't really help me. I never was nauseated first. There was just an incredible overwhelming, sudden reflex by my body to get rid of this stuff, and it did! Over time I figured out how to deal with it all. We eventually broke the dose up and I took pills twice a day instead of once a day and that helped. Taking only 300mg at a times twice a day, I felt miserable for 30 min. or so, but I could keep it all down.

A second side effect was swelling in the ankles. I was a rather small person and could not believe how my ankles blew up. The doctor was afraid that if I was swelling in my legs like that there might also be fluid heading into my lungs so he started me on the diuretic Lasix. I only used that for a few weeks and then my body got more accustomed to the Gleevec and I stopped the Lasix. The third intense side effect was muscle cramping. My hands, feet, and calves many times a day/night with intense contractions. Gleevec also plays with your blood counts. I had weekly blood work for awhile as we monitored how anemic I might get, and how low my platelets would get. The lowest my platelets got was 46,000. I never needed any transfusions. Fatigue was an ongoing problem for me from this chemotherapy.

What became my most difficult side effect did not occur until after about 3 years. After three years on Gleevec I began to notice a very steady decline in my strength, and my energy. My muscles over several months had become quite weak and the muscles started to have a sensation that was very difficult to explain to the doctor and was very annoying, bothersome to me. This was over and above the constant cramping. I was monitored for 6 months and just kept declining. I could not work a 40 hour week and dropped down to 32 hours. At this point I was getting really worried and asked if I could please change my medication. I was aware another "sister" drug to Imatinib (Gleevec) had recently been approved by the FDA - Dasatinib (Sprycel) also for CML and I had to try it. After consulting with other oncologists the decision was made to give Dasatanib a try. Even though they had similar chemical structures, they did work differently and their side effects could be different.

I then transitioned to yet another drug for my ongoing CML. I must add here the Gleevec was very effective in keeping my Philadelphia + Chromosome levels very low - measurable but low - so that was the only hestitation in changing drugs. Why fix it if it ain't broke? But I had to stress I was broke. I felt terrible.

I do know that thousands of patients have taken the Gleevec without the side effects I encountered. However, I feel it is important to share my experience - it is eye opening to hear other's stories.

Thank you for your interest. Please read my article "Side Effects From My Third Medication for CML 2007-Present" for further information.

I am a Registered Nurse with CML since 2003.

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