Re: [CMLHope] Re: stroke
Yes you are right Susan. Think of each day as a gift. My BP goes up when I see a white coat but is has stayed a little high as of late. I have had 3 ct scans and nothing showed up about my side. I also had endoscopy with no results except red stomach.im so happy you are doing better. Thanks for being there for me and all. Still haven't heard from Marty. 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 5, 2016, at 11:40 AM, 'Susan Zimmerman' via CMLHope > wrote: > > 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 > To: cmlhope > 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 > 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, > Su
Re: [CMLHope] Re: stroke
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 To: cmlhope 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 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 To: cmlhope 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 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 you
