Each of us need to do what is best for that person. My situation is being monitored by some of our best specialists. I have other major medical problems that are being monitored also. I have a heart issues, lung issues from three bouts with pnemonia when I was young and 40 years of smoking. Some of the newer meds are under consideration but with Gleevec's history of complications compared with the newer meds know problems to date makes me pause and ask a lot of questions about what would me right for me. I smiply post what is happening to me without recommendation what would be right in anyone else's situation. The one problem I can help address is that CML is becoming a lifetime condition and not the death sentence is used to be. We are so fortunate to have some of our members that survived until the need meds were found. They are my strength to challange CML headon in a different direction than most CML Specialists and CMLer's. Shortly after my diagnosis I discussed whith my ONC about participating in the trials of available other that Gleevec. He advised me to take Gleevec as it wasn't my time to be in trials but someday I would have my turn. I am 4 years and counting to see if my body can control CML at a low level. That in itself is a miracle considing when you consider I was given a 5 - 10 year lifespan and now I will die of something else. Life, Richard H.
On Monday, August 27, 2012 3:49:53 PM UTC-5, jku...@wi.rr.com wrote: > Hi CML Group. > > I haven't posted in a long time but the lastest post about not taking meds > interested me. I have been on Sprycel 20mg bid for about > 5 years. My onocologist checks pcr levels and also a fish test every > three months. 9 times out of ten the CML is undectable but every once in > awhile there is a very minute count. It tells me that the CML is just > under the surface. I recently had to have a liter of fluid taken out of > the plura around the lung from the sprycel. My onocologist told me > whatever I do don't stop taking the meds. I assured him I would follow his > directions to the "T" as I feel without these miracle drugs this would be a > death sentence. That is why I was amazed that Drs. are recommending > stopping the therapy. Maybe my onocologist is just being cautious. > Carolyn Kuptz > > -- [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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
