Hi, John.....I live in Brantford, just the other side of Hamilton. I go to Juravinski in Hamilton as well as McMaster. I was in the Gleevec study for 12 years.I have done so well on Gleevec that no one has suggested any change in years. Hopefully they will find some way to stabilize my platelets and hemoglobin. I am feeling a little frail right now....Nice to hear from you...Angie From: John Barrons <jl...@rogers.com> To: "cmlhope@googlegroups.com" <cmlhope@googlegroups.com> Sent: Saturday, May 16, 2015 3:33 PM Subject: Re: [CMLHope] Re: Platelets 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. -- -- [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.
