Katy: My onc. told my husband & me when I first began Gleevec, that they did not know for certain what the future of the drug would have on those who took it, as to whether it would actually cure the disease or not, since it was such a new drug on the market and that patients hadn't taken it long enough to actually know what might happen ten or fifteen or even twenty years down the road. He said the only cure was a BMT but he did not recommend one unless it was the last option available because there was only a twenty to twenty-five percent rate of them being successful (in other words, the disease can come back in some people after a few years even with a perfect match.)
Someone mentioned about those of us having side affects could be having them from other related diseases such as diabetes, high blood pressure medication, high cholesterol medication, etc. Well, I for one can say I do not have any other disease other than CML. I have always been pretty much perfectly healthy even though all those diseases he mentioned do run in my family. I've never taken blood pressure medication (mine runs fairly low) or high cholesterol medication (always worked on that by losing weight & watching my diet to keep it under control) & had my sugar checked & it was fine. I've had my thyroid checked (mom has that problem) & it was a little bit elevated but not bad, the doc. said. The only other disease I had before CML was a battle with endometriosis of which I findly lost & had a total hysterectomy in '89 & I've never regreted that dicision. No one in my close or extended family ever had any thing like CML except one uncle on my mother side who had Mulitple Myeloma (sp.?). Both my brothers are as healthy as a horse except for the usual pains of getting older. They were both had their blood tested right after my dx's and no match for me. I had another older brother that was killed when I was not quiet a year old, so I told my husband that he was probably my "perfect match". They did search the registry and found 24 " 6 out of 6" matches for me if it comes to that. I thought well that's good to know. (smile) I've never asked the onc. about lower dosages or even higher.....I had one who asked me if any had ever changed me from the 400 to 600 and I said "no". He said that 600 was the "standard" dosage but didn't bother to change mine. The 400 seems to be working just fine for me so they just leave it. I, too, split mine in half and take it twice a day. That seems to work best for me. I tried doing the "before bed" thing and sleeping.........it didn't work for me at all. Keep looking up, Suzieq --~--~---------~--~----~------------~-------~--~----~ [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~----------~----~----~----~------~----~------~--~---
