Dear Peg, I can't thank you ENOUGH for giving me this information. I actually have three docs in writing to recommend me going on sprycel as a better alternative to gleevec. One is from Moffitt Cancer Center in Tampa, like the third best place in the country for treating this! Do you possibly have an article or anyplace I could reference telling that sprycel's big risk is brain bleeds? All three of these docs claim that there is NO history of brain bleeds. I KNEW that was wrong. Last week's new doc, (the third) here in Indiana said there was no evidence of brain bleeds for gleevec or sprycel. I KNEW he was wrong, as I had done my homework on that long ago....1% of people have brain bleeds. I was one of those 1%. I will definitely hold off for bosatinib and please keep me abreast of its release! My most thankful heart for your information cannot be truly expressed in words! I am printing this out and will do further research myself. My new doc is 66 yrs old and has a great reputation, but I'm thinking he might or might not have a consult. I've had the other two docs consult several times together over the last two years. We moved from Florida to Indiana recently and having to start over with a new doc again....just to monitor my counts. At least he does the bcr/abl, which is a more complete test. My last doc in Orlando only did the FISH.
I will keep the faith, and thank you again and again. Blessings, Susan -----Original Message----- From: peg <[email protected]> To: CMLHope <[email protected]> Sent: Mon, Nov 1, 2010 6:18 am Subject: [CMLHope] Re: Still on Gleevec Vacation Susan, I really feel strongly that you should get a 2nd or even 3rd medical opinion. I personally agree with you regarding Sprycel. The recognized "big risk" side effect of Sprycel (besides Plural Effusion) is brain bleeds! It doesn't make sense why they would risk that given your history. Dr. Ron Paquette at UCLA in Calif. is a research doc that worked on the developmental research on Sprycel. I have met with him regarding my Sprycel treatment and he is considered an expert in this field. Perhaps your doctor might be willing to consult with him. The good news, for all of us, is that a 3rd gen TKI, Bosutinib, is trying to get FDA approval and may be just around the corner, maybe as early as the first of the year. While it is reported to generally have the same side effect risks of all the others, in clinicals the incidents of side effects were far less, while the drug was just as effective. Wishing you the best! Keep the faith! Peg On Oct 31, 7:20 am, Susan Zimmerman <[email protected]> wrote: > I too have been on a gleevec vacation since May of 2007...over 3 years. My bcr/abl test showed last week > .23. I had a brain bleed in May of 2007 and then a serious stroke in April > of 2010. I am going against the doc's > orders to get on sprycel because I fear another stroke. I have cavernous malformations in the brain and they have > no idea why I stroked. I seriously think it was exacerbated by the gleevec the first time. Also many eye bleeds > beforehand. So I am waiting...still in cellular remission, praise God! Diagnosed Feb. 2005. > > Susan Zimmerman-----Original Message----- > From: sionito <[email protected]> > To: cmlhope <[email protected]> > Sent: Tue, Oct 26, 2010 8:25 pm > Subject: Re: [CMLHope] Still on Gleevec Vacation > > Awesome!!!!! > Sent via BlackBerry by AT&T > > -----Original Message----- > From: Richard H <[email protected]> > Sender: [email protected] > Date: Tue, 26 Oct 2010 20:34:33 > To: CMLHope<[email protected]> > Reply-To: [email protected] > Subject: [CMLHope] Still on Gleevec Vacation > > I received the results of my latest RT-PCR. Great results overall. I > did increase to .0468% but we are working with a threshold of 1% > before I return to any medication. I will do it all over in Feb. > 2011. Next month is my 2 ½ year university starting this vacation > from Gleevec. > > 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-Pressent > 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 > QT-PCR .0468 10/10 > > -- > [CMLHope] > A support group ofhttp://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 athttp://groups.google.com/group/CMLHope > > -- > [CMLHope] > A support group ofhttp://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 athttp://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 -- [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
