Jeanie- Ponatinib was made specifically for mutation issues. Be positive!!! It's going to work for you! it has done a great job for many already, the majority without a lot of side effects. Go you!!!!
Beth :) -----Original Message----- From: 'Icandoallttc' via CMLHope <cmlhope@googlegroups.com> To: cmlhope <cmlhope@googlegroups.com> Sent: Mon, Jan 26, 2015 2:59 pm Subject: Re: [CMLHope] Blood checkup platelets still over million Hi Beth and thanks, I have high blood pressure and wasn't taking anything for it. I have the cuff. I started on small dose clondine a few days ago. I did have the mutant g250A. This mutant has been reported to confer resistance to BCR-ABL1 tkis. I had been on sprycel since sept 2009-about the same amount of time I was on gleevec before I got a mutant and it quit working. The recent test show I am in acelerated phase of cml. The ponatinib is supposed to not be affected by the mutants. Keep praying as I pray for you and all. I love you too. Prayers & Blessings Jeanie 18's On Jan 26, 2015, at 3:38 PM, bkbarney via CMLHope <cmlhope@googlegroups.com> wrote: I am feeling pretty crappy but trying to find my anchor..lots of tests...waiting to go back to Mayo on the 12th of February. MRI yesterday of my throat/neck to look and see why so much pain there...I am blessed and I know it as my blood looks pretty darn good and I trust the sprycel will work it's magic again against the cancer. Once it does, I am considering with my oncologist Ponatinib as well. The one thing I would want to pass on ..is if you don't have one, maybe get a blood pressure cuff and take your pressure a couple times a day. It seems that the issue of stroke etc..is that it can push your pressure up without any one knowing in a short period of time. ..then people take meds to lower the BP....etc...this blood pressure spike can come on or not...if it does, it can happen suddenly....so simply keeping track of your blood pressure daily would be a smart thing to do as a protective measure. That's my two cents!!!! You have a lot on your plate... but you have all of us here with you...praying, and hoping and smiling..cause we love you..Take care.....on your first week..praying for no side effects and a great outcome for you....you have been through enough for now..you need a break!!!! Thanks for your note....Beth :) -----Original Message----- From: 'Icandoallttc' via CMLHope <cmlhope@googlegroups.com> To: cmlhope <cmlhope@googlegroups.com> Sent: Mon, Jan 26, 2015 2:30 pm Subject: Re: [CMLHope] Blood checkup platelets still over million Thanks Beth, Is it time for the pity party??? I am going to start on the big breakfast with new med. It helped when I was on gleevec. How are you??? Blessings Jeanie 18's On Jan 26, 2015, at 3:12 PM, bkbarney via CMLHope <cmlhope@googlegroups.com> wrote: Good luck with the Ponatinib Jeanie. Hope it works well for you. Hope those platelets come down soon. Hang in there! and susan, don't know why you are feeling so low, but I hope they can tweek your meds and that that will help improve how you feel. Take good care, love to all and 18's Beth -----Original Message----- From: 'Susan Zimmerman' via CMLHope <cmlhope@googlegroups.com> To: cmlhope <cmlhope@googlegroups.com> Sent: Mon, Jan 26, 2015 1:54 pm Subject: Re: [CMLHope] Blood checkup platelets still over million Hi Jeanie, Will be praying and believing with you that this will be easily tolerated by your body and counts will go down very quickly. I can't seem to want to stay out of the bed very long lately. Just exhausted, don't know why, trying different things. I am only on 100 mg a day of bosulif and can't imagine that's causing it. What does anybody else think? We upped my antidepressant and lowered my blood pressure med to see if this helps. Going to a cardiologist soon. Everyone, we are all in this together and we'll all make it through!!! 18's, Susan -----Original Message----- From: 'Icandoallttc' via CMLHope <cmlhope@googlegroups.com> To: cmlhope <cmlhope@googlegroups.com> Sent: Mon, Jan 26, 2015 2:47 pm Subject: Re: [CMLHope] Blood checkup platelets still over million Thanks Greenie and I will Blessings Jeanie 18's On Jan 26, 2015, at 2:15 PM, Myvety2k via CMLHope <cmlhope@googlegroups.com> wrote: Good Luck and think positive. greenie In a message dated 1/26/2015 2:00:25 P.M. Eastern Standard Time, cmlhope@googlegroups.com writes: Just took my first dose of ponatinib. He said to take 3--15 mg tablets daily to see if it would bring the counts down. Do this for 3 days and see him on thurs. There is danger of heart problems--blood clots--stroke and ect--/ real fun but what other choice do I have??? 1 baby aspirin daily and stay on the allopurinol daily. Hope every one is good. Let us know. Prayers Blessings Jeanie 18's > On Jan 26, 2015, at 1:54 PM, "'Icandoallttc' via CMLHope" > <cmlhope@googlegroups.com> wrote: > > Hi all, > > > Blessings Jeanie 18's > > -- > -- > [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. 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