Hi Richard, I am happy to hear that you have been off of Gleevec since Nov. 2008 and still have normal WBC. I want to wish you the best of luck on your next test.
By the way, I was never on Gleevec or any other med for my CML but rather had a BMT almost 22 years ago. Stay in good health! Marty PS say hello to Susan for me. Again, by the way, my donors name was also Susan who was my sister. Unfortunately she passed away a few years ago of unrelated causes, and not anything to do with her bone marrow donation. On Mon, Feb 7, 2011 at 11:21 AM, Richard H <[email protected]>wrote: > 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 > -- [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
