Hi Susan, I am happy to hear that your still in cellular remission, and not having to take any drugs. Who knows, but I have known a few CML'ers that have also been off of their meds and are still doing well.
Sorry to hear about those brain and eye bleeds, and hopefully they will not come back again. *18's CHI* Marty Gartenberg BMT May 21st 1989 (My actual Birthday was May 21st 1944) ABL-BCR, Zero as of my last test two months ago Zavie's Zero Club Member Number 1 On Sun, Feb 6, 2011 at 3:35 PM, Susan Zimmerman <[email protected]> wrote: > Hi there all, > > Haven't posted for awhile. I was dx'd on Valentine's Day, 2005 and was on > gleevec for 2 1/2 yrs. Went into total > molecular and cellular remission. Was in total remission for two complete > years. Then had a brain bleed which I feel was caused by the gleevec. So > the docs took me off that, (Moffitt, Tampa) and strongly urged me to try > sprycel. Right before it was approved for general > use, I went thru all the hoops to be in a clinical trial to get it. Took > ONE dose and had an eye bleed immediately. > Thus, I have not been on ANYTHING for almost four years come May 27th, and > am *still* in cellular remission. > > I know there may come a time when I have to begin another drug if my white > cells go sky-high again. I am > praying that by then the third generation drug called bosatunib will be > available. I had another brain bleed > that was quite a serious stroke last April. Because of this the docs said, > "see, the brain bleed was not > caused by gleevec." I do not agree, altho the stroke this second time > obviously was not caused by any medication. > I had been exercising quite strenuously and I do have cavernous > malformations in my brain, so who knows? > > At any rate, I've always felt I would again have another stroke if I take > medication for the cml....possibly. So I > choose to wait until white count goes up before doing anything. The > doctors are sympathetic but still advise > getting on sprycel. It's not their life. I thank Peg for giving me great > information about this and verifying the > danger of brain bleeds from gleevec or even sprycel. > > Please be encouraged that if you have been in total remission for (in my > case) at least two years, you should > give yourself a vacation until your log reduction becomes noticeable again. > You will be fine and have no side > effects, so be encouraged to take a good long break. I'm going on four > years! My log reduction is now up to > over 1.0 but because of the brain bleed problem I am still not going on > meds until my white count goes up. > I do not recommend that for you guys, tho!!! > > Blessings, > Susan Z > (moved to Indiana from Orlando area) > > -- > [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
