Hi Suzieq, Of course you should always listen to your doctors advice. I know of someone that had CML a very long time ago that was on Alpha Interferron and he really suffered from a lot of very bad side effects. He had to do it because at the time there were none of these new drugs, and he couldn't find a suitable donor.
This went on for years and finally they were unable to detect any CML. The doctor advised that he discontinue the A.I. but he was too frightened because he feared relapsing. It took several more months and he finally decided to stop the A.I. and believe it or not he was finally cured of his CML. I guess that when someone has been on a drug, and it is doing very well for them they become "mentally addicted" to it because of the fear of their disease returning. Zavie Miller, myself and this gentleman would always hang around together and we used to call ourselves The Three Musketeers. Each one of us was able to deal with our CML but in different ways. Me, by bone marrow transplantation, Zavie by Gleevec, and our friend by Alpha Interferron. I can really understand why someone that is on any of these new life saving drugs might think about getting off of them because they are doing so well. However, this would entireally by up to their doctors. Eventually, there will be something that will come up to cure this disease once and for all, and I pray to GOD it will be coming very soon. The end result is that becuse of these drugs that are now available many peoples lives have been saved, and thank GOD they can go on and live their lives relatively well. Someone once asked me if everyone were to put all of their problems into a bag and leave it in front of their front doors, would they choose their own bag. I think that you already must know the answer... Marty On Wed, Sep 8, 2010 at 3:06 PM, Suzieq <[email protected]> wrote: > > Marty & Greenie: > > I would never do anything without my Doctor's knowledge & okay......I > did that once, stopped for two weeks just to see if this pain I was > having was Gleevec related or something else. Plus, it was around > Christmas time & we had something special planned & I wanted to feel > "good" for it. Would you believe that following February was one of > the times my test came back "none detected", LOL!!!! Anyway, I've > not done that anymore. I might miss one accidently here or there, or > may only get half my 400mg. dosage in for a day here or there, but > would never do anything without discussing it with the Doctor. And, > like Greenie.....I'm a little afraid to 'cos I remember my nurse/ > practioner telling me with the showing of 0.001% showing up almost > every time, that just tells them that the CML is still in my system > after this long on Gleevec and would just all come right back if I > didn't take any thing for it. > > Enough said, :) :) > > Love to all & > Hop all are well, suzieq > > P.S. Recently told a man who suffers from MS at my church (when asked > how I was doing) that I'm so use to feeling "crappy" all the time that > I think that's probably good for me, so I'm good! LOL!!! > > -- > [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 -- [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
