Marty it is great to hear of your progress. Susan, congratulations on your long vacation from Gleevec. I have been off meds since Nov. 2008 have the 1.0 log reduction before I will need to consider some type of med again. In my case the white cell counts have remained normal while the abl-bcr has slightly increased. I test again month.
Richard H. dxd 2/2003 400mg Gleevec 3/2003 Undetectable 11/03 RT-PCR negative 11/04 QT-PCR .003 11/05 RBC 8. Gleevec Vacation 11/06-6/07 Iron infusion 11/06 Transfusions 12/06-5/07 QT-PCR .7 Gleevec 1/08 -5/08 Procrit 8/08-11/08 Gleevec Vacation 7/08-Present QT-PCR .03 4/09 QT-PCR .015 6/09 QT-PCR .021 9/09 QT-PCR .028 1/10 QT-PCR .01+ 4/10 On Feb 6, 2:35 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
