Wow! John. You have come a long way!!! Were you in a trial? I have been fighting cml for 11 years. I started on gleevec. Then had to go on tasigna. Tasigna didn't work at all so I went on sprycel. Now after almost 6 years I'm starting over again. Staying positive.
Prayers & Blessings Jeanie 18's 🐠🐠 > On Jan 27, 2015, at 11:45 AM, John Barrons <[email protected]> wrote: > > 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 >> <[email protected]> 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 <[email protected]> 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 >>>> <[email protected]> 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 <[email protected]> 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 >>>>>> <[email protected]> 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 <[email protected]> >>>>>> To: CML Hope <[email protected]> >>>>>> 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 [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/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 [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/d/optout. >>>>> -- >>>>> -- >>>>> [CMLHope] >>>>> A support group of http://cmlhope.com >>>>> ------------------------------------------------- >>>>> >>>>> You received this message because you are subscribed to the Google Groups 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