I was on Tasignia until it stopped working and had blasts so they admitted me to hospital and started oral ponatanib 45mg daily. Took 2 solid months of hospitalization for my neutrophils to come down and platelets to go up. Got a unit of blood almost every single day and sometimes two, and would get at least one bag platelets per day and often 3 or more. Finally my numbers started to pick up and they let me go home. I havn't felt what I would call "well" since being on this drug but at least they are saying I am in Hematological remission, not molecular but that is my goal. I see my hematologist every week for labs to determine if I need another unit of red blood cells and usually my hemologin has been running around 8.5 which means I get a unit of blood. So on Tuesdays i go for labs and then return on Wednesdays for blood if needed. This sure beats the alternative - not being well.
On Gleevac I experienced eye bleeds. ________________________________ From: Susan Zimmerman <[email protected]> To: [email protected] Sent: Wednesday, August 14, 2013 4:49 PM Subject: Re: [CMLHope] Ponatinib Thanks Maggy for answering. I'd like to hear more about how you are doing on this drug. Not sure which one they will put me on after determining why I am having brain bleed tendencies. Was on gleevec for 2 yrs 3 mos, on nothing now for six years because of brain bleeds. Numbers were going up upon last check, tried 15 days of tasigna and had an indication again of brain bleeding. Sept. 4th going to Northwestern Univ. again to try to determine the cause. Blessings, Susan F. Zimmerman -----Original Message----- From: [email protected] <[email protected]> To: cmlhope <[email protected]> Sent: Tue, Aug 13, 2013 2:36 am Subject: Re: [CMLHope] Ponatinib Yes, been on this drug since around first week of June. 45 mg I believe. Was hospitalized for almost two months while the drug did its thing. ________________________________ From: John Barrons <[email protected]> To: CML Hope <[email protected]> Sent: Monday, August 12, 2013 10:53 AM Subject: [CMLHope] Ponatinib I have had CML for almost 14 years now. I failed gleevec and sprycel and am now on ponatinib. Is there anybody in this group who is on this drug? Sent from my iPad -- -- [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 --- 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 [email protected]. For more options, visit https://groups.google.com/groups/opt_out. -- -- [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 --- 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 [email protected]. For more options, visit https://groups.google.com/groups/opt_out. -- -- [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 --- 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 [email protected]. For more options, visit https://groups.google.com/groups/opt_out. -- -- [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 --- 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 [email protected]. For more options, visit https://groups.google.com/groups/opt_out.
