Yes, we will all eventually die. You, Lottie, and Skip were the first names that I thought of when I was writing but didn't want to miss any one that around before 2/2003. I am fortunate to have some footprints in the sand to follow and voices to keep me keeping on. Richard H. On Tuesday, August 28, 2012 8:09:24 AM UTC-5, wa2yyx wrote:
> Yes indeed Richard, > > You stated that since all of these TKI's have been around that "I will die > of something else". You must remember that everyone who is born will > eventually have to die. So it is good to know that CML will not be your > undoing. > > I am one of those members that you spoke about. I had a bone marrow > transplant more then 23 years ago, way before any of these TKI's were > around. I guess that it wasn't my time yet. Also take a look at Skip, he is > still alive after 35+ years. If you want to talk about strength to > challenge CML head on, then take a look at Skip. > > Another long time person is Lottie. She really has been through the mill, > trial after trial and is still here with us. With all of these advancements > the CML community has stricken a blow to CML, and this will continue to > happen. Maybe not in my lifetime but the disease CML will cease to exist, > just like Polio was at one time. > > 18's Richard (Symbol for life) > > Marty > > On Mon, Aug 27, 2012 at 11:50 PM, Richard H > <richard...@comcast.net<javascript:> > > wrote: > >> 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 cml...@googlegroups.com<javascript:> >> To unsubscribe from this group, send email to >> cmlhope-u...@googlegroups.com <javascript:> >> 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 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
