Dear Susan,
Funny, Iike so many, I never thought of Gleevec as a poison. It did change the quality of my life, but given I would almost surely be dead within 5 years, I accepted my fate. I had a baby and a little toddler when I was dx. I felt I could endure anything that would let me see them grow up.
From the very beginning, I have had severe myelosuppression and thrombocytopenia, not to mention severe anemia after 5 months on Gleevec. I have not been allowed to work out. What I would give to run around the block (anemia causes racing heart and often it is hard to breathe)! I am turning into a blob! Just getting over a period from hell. I finally stopped bleeding. It has been almost non-stop for 2 months and full-time this last month (likely the TKI is part culprit in this problem). Needless to say, the severe anemia is back and I was hemorrhaging mostly because of my low PLT (literally gushing so much blood, I couldn't leave the house). It has been a year and a half since dx and I still have very low counts all over the place (red and white). I was only given a break my first two months on Gleevec. But now I suffer though whatever comes or persists. I don't want to let this CML get the best of me.
I go for my 18 month PCR next week and we shall see... I switched to Sprycel after 9 months on G, and it lowered my PLT even more, but I generally feel better on it. But please give Gleevec a good try. You can always try another drug to see what fits best. As not to scare you, what is happening to me is uncommon for most CMLers. Nevertheless, I am happy to be alive and live a somewhat "normal" life with this disease. And as a vain female, I still have my hair! I cannot always drive, go out shopping, or take my kids to the park, but you adjust. There are all kinds of awful physical maladies people must endure. And much like we with CML, one cannot tell by just looking. And if this drug works and brings most of us to an average life span, then it sure is worth it to me, (there are brief respites from pain or feeling sick--not all diseases are like this---but I have to admit, the mental torture is probably the worst of it all).
I wish you all the best. Living in the cold Midwest, the warm beach sounded so wonderful. There are times when life can be very good. This week, I am free of the severe mouth sores I have gotten with my switch to Sprycel (I had to see an oral pathologist because they were so bad--I couldn't talk, eat, and not being able to read to my kids was very tough). I am rejoicing and eating spicy food and citrus--I don't know how long this freedom will last! I am taking major advantage. I am singing, talking, and reading to my kids. When my HGB goes up to 8, I will run to the park with my kids, take them grocery shopping, and walk around the block! How yummy that orange was!!!!! Never thought I would find so much joy in eating acidic foods! Although CML sucks and the drugs "hurt", with some adjusting, life can still be decent. You just have to try not to compare yourself to your old self or others who appear to have less to deal with. It is so hard, but it for me, this has been the best way to deal with so much tragedy compounded (and having two little children is something that is easy for me to live for). I will let everyone know when I have finally reached a persistent equilibrium. But I am suspicious that , "rolling with the punches" is the best I will ever be able to do. "I got through this, I will get through that." "I did not die of a brain hemorrhage in my sleep, I am good for another day with the rugrats!" It is so wonderful to make it to another spring and hear the birds chirping after a loooong winter. My 5th year wedding anniversary is coming up and it is another year older with my best friend. Despite not being exactly the same woman he married, at this point, my husband still wants to be with me. A true gift!
And about short drug breaks and disease progression, it appears the jury is out. It seems that breaks or reduction in dosage may be OK for those who have reached MMR or CCyR. Nevertheless, I think the general consensus is to try to stay on the drug, at all costs, if you can. From what I have been reading, with all I have been through with myelosuppression, thrombocytopenia, and anemia, a reduction in dosage or drug breaks may have relieved most or all of my symptoms. But that is not the route my onc wanted to go. She, like many other oncs, feel any break will give the disease a chance to progress. And in my case, my PCR was still high at six months and remained so at 1 year (compared to people on this board who have zeros in their PCR values).
I used to live in Japan as a young person. There is a word GAN-BAH-REE-MASS! So, most of the time, I ganbaru (endure and persisit). It appears we all do. So, my BIF, GAN-BAH-TAY KOO-DAH-SIGH (please endure)! What we are going though, in all degrees of suffereing, is honorable. But I am grateful that I am from the west where it is socially acceptable to bitch and freak out every now and then. And this board is invaluable for empathy and support.
Teds
