Hi Angelyn I have had cml since 1999. I wa on gleevec in 2001 and for another couple of years but had to come off it. Then I went on sprycel for anothe r couple of years. I was a couple of others and I have been on Ponatinib for the last two and a half years. It has been a good drug for me and we are still tweeting the dose. Two pills a week puts my platelets at a low value so I am on one pill a week. I go to Princess Margaret Cancer in Toronto . I noticed your email is Rogers.com. Maybe you live close to me as my email is also Rogers.com. John B
Sent from my iPad > On May 16, 2015, at 1:01 AM, Richard H <rbhuffm...@gmail.com> wrote: > > My problem has always been hemoglobin and I had six months of 2 units of > platelets every 3 weeks to try and keep the hemoglobin above 10. There are > others that experienced platelet problems. I would ask what dosage of > Gleevec you are taking. I started on 400 mg Gleevec in 2002 and that caused > my anemia after 5 1/2 years. I finally received support to stop taking > Gleevec until the counts forced me to return to Gleevec. I restarted 400 mg > of Gleevec and 3 weeks later it had to be reduced to 300 mg. I relived every > problem in 5 1/2 weeks instead of 5 1/2 years. I started taking a shot of > Procrit to help rebuild my red blood cells. I had a setback when I was taken > to the hospital the end of April. l found I had Vertigo that probably result > of my near transfusion level. They re-examined my all of my medical problems > and medications. The also found an artery leaking blood and sealed it. They > also changed some of my medications. This past 3 weeks have been a joy. I > am gaining strength daily, and while I am growing older and more forgetful I > haven't experienced any Gleevec fog. The Gleevec did give me about a 15 log > reduction (for those who count logs I was at 17 in December and in March it > was under 2). I get the results of my next ABL-BCR on the 26th. > > Richard H. > >> On Friday, May 15, 2015 at 11:02:37 PM UTC-5, Angie wrote: >> Does anyone have problems maintaining their platelet level? >> Mine fall down to almost ZERO, which is a dangerous place to be. I am >> covered with big purple bruises and petechiae and look like I have been in a >> bar fight. Even a light scratch on my skin brings the blood to the surface. >> It is called Thrombocytopenia. My red cells also plummet and I had 6 blood >> transfusions last week. >> My confidence waivers a little as it seems they don't really know what to do >> about me. I have lots of complications. More specialists on the horizon, but >> every step forward is followed by 3 steps back. I am on massive prednisone >> for the moment. >> Can anyone share info on this? >> Angie in Canada.... >> Gleevec pioneer since 2001 > > -- > -- > [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 > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+unsubscr...@googlegroups.com. > For more options, visit https://groups.google.com/d/optout. -- -- [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 --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
