Hi I just remembered after sprycel I went on omacetaxine for a while. I had to inject this drug. It did ok for a time then wasn't so then I went on ponatinib. I have had cml for over fourteen years.
Sent from my iPad > On Jan 27, 2015, at 10:04 AM, 'Icandoallttc' via CMLHope > <cmlhope@googlegroups.com> wrote: > > You are really helping me a lot John. I have just come off sprycel also. I > developed mutant to it. I was also very sick. > I am just feeling better. > > Prayers & Blessings Jeanie 18's 🐠🐠 > >> On Jan 27, 2015, at 9:30 AM, John Barrons <jl...@rogers.com> wrote: >> >> Hi I had just come off sprycel and started at 45 mg daily of ponatinib. I >> can't remember how long I was at that level. But I know I reacted positively >> to it better than I had reacted to gleevec or sprycel. My counts are quite >> low and I could tell you what they are but in Canada we measure them >> differently. >> >> Sent from my iPad >> >>> On Jan 27, 2015, at 7:43 AM, 'Icandoallttc' via CMLHope >>> <cmlhope@googlegroups.com> wrote: >>> >>> Have a huge headache. Hope this isn't going to be a side effect for me. >>> It was for sprycel. >>> John do you remember how much ponatinib you took in the beginning? >>> >>> Prayers & Blessings Jeanie 18's 🐠🐠 >>> >>>> On Jan 26, 2015, at 6:13 PM, John Barrons <jl...@rogers.com> wrote: >>>> >>>> Hi I live in Toronto. I am normally on two 15mg per week. Sometimes I take >>>> three but that amount really drops my counts hb, platelets white blood >>>> cells to low levels. So I then go back to two per week. It's a balancing >>>> act. John >>>> >>>> Sent from my iPad >>>> >>>>> On Jan 26, 2015, at 6:00 PM, bkbarney via CMLHope >>>>> <cmlhope@googlegroups.com> wrote: >>>>> >>>>> Dear John, Thanks for the info. Are you on one pill at 15 milligrams >>>>> twice a week? Or 45? Just checking in about the dosage? Also, where are >>>>> you from...always curious about people's doctors who are willing to do >>>>> dosages that simply work for a patient but are not the standard. Thanks, >>>>> Beth >>>>> >>>>> >>>>> -----Original Message----- >>>>> From: John Barrons <jl...@rogers.com> >>>>> To: CML Hope <cmlhope@googlegroups.com> >>>>> Sent: Mon, Jan 26, 2015 4:29 pm >>>>> Subject: [CMLHope] Ponatinib >>>>> >>>>> Hi I have been on ponatinib for over two years. I started at 45mg and >>>>> have been >>>>> on two pills a week for quite a while. But I am so sensitive to it I can >>>>> only be >>>>> on it for about three or four weeks and have to go off it for two to >>>>> three >>>>> weeks. Right now I have been off it three weeks as I was away. I see the >>>>> doctor >>>>> on Wednesday and will probably go back on two pills a week. I have really >>>>> had no >>>>> side effects from it and no heart problems although I do have blocked >>>>> artery, >>>>> but I won't get into that. >>>>> >>>>> 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 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. 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