Thanks Jeanie, I really do not worry because as you know, it's not productive and helps NOTHING. I also am thankful my bp has gone down to normal without medication, as I really have tried to relieve all stress in my life. Has your bp gone down? I sure hope so. We can create our own stress by worrying, or relax in the everyday joy of going through trials to make us stronger.... I am praying for your side pain to go away, for sure. I'd like for you to get to the bottom of that. There's something causing it. Have you considered having that pet scan I mentioned? The earlier something is caught, of course the better.
Blessings and love to you as you enjoy every day as a gift. 18's, SZ -----Original Message----- From: 'Icandoallttc' via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Mon, Jan 4, 2016 5:21 pm Subject: Re: [CMLHope] Re: stroke Hi Susan , Just wanted to tell you that my mom and grandmother both had strokes in their late 70s. My sister died of a stroke in her late 60s. So it runs in the women of my family. Of course they weren't on tkis but we're on medicines for other things. My doctor warned me to keep my BP down to avoid strokes while on ponatinib. Well all the BP meds make me sick so I can't take them. I think we have a lot of stress due to the CML and worrying about the meds we take; I know I do. Good luck and continue to mend and thanks for the info on strokes. My mom was completely out of it when she had her stroke. She had to learn to read and write again and attended those therapies. After a while she became her old self again until she fell and broke her hip. ❤️💋💋😇💗 My Motto: Faith and Pills Jeanie 🐟🐟18,s Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center On Jan 3, 2016, at 9:00 PM, 'Susan Zimmerman' via CMLHope <[email protected]> wrote: Hi Jeanie, I have had four previous strokes, all due to trying the four other meds that are out. With gleevec I had two strokes while I was on it that were minor. The docs were not convinced the gleevec caused it, but I was! Then 2 years after being off all drugs for cml, I had a major stroke which at first left my eye frozen, and damaged hearing, along with balance problems. Thankfully, those things all went away after 3 months. I am most blessed. Then each other pill I tried, (all 3 others) I had a symptom of stroke almost immediately. (bad eye bleed, frozen eye like the big stroke). They could only find cavernous malformations in my brain to lend itself to such easy bleeding. About 9 months ago I went back on the last drug, bosulif, because my numbers were getting pretty high after 7 yrs of no meds at all. I started with 100 mg of bosulif, which is very low. The usual dose is 500 mg. When my numbers went up just a little after being in remission, the docs suggested I go to 300 mg. I agreed only to 200 mg. So this time, I had doubled my dosage, and 10 days later, had double vision and severe nausea all afternoon right when we were sharing Christmas with my son and whole family on the 26th. I wasn't sure about it, I thought it might be all the sugar I ate, as I am diabetic. So decided just to hit the bed for the evening so as not to ruin their visit. Kids left next day. Then on Wednesday, continuing the double vision somewhat, I vomited. The docs had all said one more symptom get to the e.r., so I went. Sure enough, the ct scan showed 4 new blood spots in four different parts of my brain. (that was a new one, usually they were all in same place.) Luckily very little was affected this time, halleluhiah! Long ago the statistics used to be only 1% had brain bleeds, i.e. strokes from these medications. I am one of the 1%. Don't know if the figures have changed, but one thing I do know. None of you need to worry about this happening to you. My father died of a brain aneurysm, so apparently I'm prone to it. But I know I'll only go when it's His timing, not my own! I'll keep plugging and try to keep a joyful heart until then! Definitely planning on enjoying my retirement. 18's and love, Susan Z -----Original Message----- From: 'Icandoallttc' via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Sun, Jan 3, 2016 1:24 pm Subject: Re: [CMLHope] Re: stroke Hi Susan, Just wondering how you knew you were having a stroke?? The tkis say wash your hands after handling and these are going in out stomach!!! Keep strong and keep fighting!! ❤️💋😇🎼 My Motto: Faith and Pills Jeanie 🐟🐟18,s Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center On Jan 3, 2016, at 1:00 PM, bkbarney via CMLHope <[email protected]> wrote: Susan, you are a strong and amazingly positive woman...I am so sorry this happened..but trust you will heal.....I think it's so hard to know what to do..regarding dosages and changing meds.....trust your own knowing about your body and your own knowing about what may work best for you.. Much love and healing energy... Beth -----Original Message----- From: 'Susan Zimmerman' via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Wed, Dec 30, 2015 11:50 pm Subject: Re: [CMLHope] Re: stroke Dear all, Just a note to say I'm in my local hospital. It did turn out to be a small stroke which started last Sat. In morning I will learn if 2nd cat svan showed the bleeding stopped. Prayers are appreciated. I am agitated w myself for agreeing to up the bosulif when my numbers increased just a little. If I had followed the doc's suggestion of an even higher dose I would be dead now. After 10 days on 200 mg of bosulif, here comes another stroke! Regular dose is 500 mg. I'm just weird. So now off all bosulif. Pray my numbers stay down for several months...dont need another one! God is in charge...Jeannie, without pills this time lol. You all mean so much to me. I'm feeling fine now. God bless and stay safe on new year's eve! Thanks for yr. prayers. 18's and love, Sz Sent from my Sprint phone ------ Original message------ From: Myvety2k via CMLHope Date: Wed, Dec 30, 2015 3:34 PM To: [email protected]; Subject:Re: [CMLHope] Re: Merry Christmas and happy Hilidays -- -- [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]. 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