Hi Pat,
I know in my heart (and head..hehe) gleevec is not a cure, but I will say that when I was diagnosed three years ago a Dr. Jagasia in Nashville told me that some patients were "cured" by gleevec. THAT is why I no longer see him!!! I knew better, he was a transplant specialist. I told my doc yesterday when he wanted to wait three monts that I knew gleevec had not cured me and that I knew there was no "cure" for CML. That even if you had a transplant you had a chance it would show back up, that and HVGD are the main reason I opted not to do a transplant. I didnt want to trade one disease for another. I know about Luekemia and what to expect so why would I want to trade for one I have not experienced. Not to say that if they told me today that if I didnt have a transplant that I would die in a few days that I wouldnt have one, in that case YES I would most certainly reconsider.
I know this disease is slow moving, but I also know as I said in my other post today that I know it can skip phases. I guess it is just not knowing what is actually happening in my body and wondering what is gonna happen that scares me. I guess I will just have to wait and see. Thank you for your post you and Lora really have made my day!
Hugs,
Katy
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To Katy,I was dxd11/04, did very well on Gleevec for 7 months, really. Then in June of '05 counts started to increase and then went up and down from that point on. Finally, my onc sent me to Tucson to meet with the specialists at UMC. They offered me 3 options.1. join a study and see what happens2. bone marrow transplant (I am 62 now with only 40% cure at my age)3. wait for the new AMN107 to be approved hopefully by later this year.I had chosen the BMT, but neither of my surviving siblings was compatible. They still tried to convince me to do it anyway, but insurance was the problem. I also started reading, very carefully the info book for BMT...and decided that at my age, for whatever time I have left I wanted to be as mobile and 'well' as I could be, not sick trying to fight all the complications that are associated with BMT.Dr put me on Hydroxyurea to get platelets down as I was hovering at the 2 mil mark.That stuff is great, but it is very dangerous, of course, so when counts went down all of a sudden, I had to immediately stop the Hydroxyurea. Counts start going up again, Dr puts me back on Hydroxyurea which bounces the counts up right away because it is poison and my body was trying to fight the poison. I stopped taking it and count rising slowed. Then I get emails from Leukemia Society newsletters saying 3 new chemos for CML patients are almost ready (for Gleevec resistant patients).Go see Dr. and have been on Sprycel for 6 days now and the counts are really great. Took 10 days for the insurance company to not only approve, but for the wholesale distributor to get it to me. My spleen has reduced in size already. Had diarrhea 2 hours after taking each pill, then it stopped and have not had any in 4 days. I do have a little itching with a few accompanying blisters (allergy) just like when I first began the Gleevec, but no other discomforts as of yet.I AM SORRY, MAYBE RAMBLING....POINT IS..........You can never be rid of CML it is a condition that will always be there because the DNA in your body has changed and with the BRC_ABL gene created from this your body will always be fighting this. Gleevec will hopefully keep us from jumping into 'ACUTE' mode. We are really lucky that we are in chronic and not acute mode. Chronic means 'slow', Acute means 'fast. That's all Gleevec is engineered to do, keep us from jumping into 'acute' ML. I would write down all these questions you have, make a call to your doctor, ask the questions, and if you do not like the answers or the answers are confusing or not really clear, then find another onc. Gleevec is NOT a cure. Keep having your blood checked to monitor the counts. There is so much info out on The Leukemia & Lymphoma Society : - Leukemia. just follow all the links and read all the data and before you now it you will be telling the doctor what to do (LOL). Remember they have many patients with many diseases, and although it would nice to know that they know everything about us and our illness.....THEY DON'T! So educating yourself is a must in this war against cancer.Let me know.Pat
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