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 > <[email protected]> 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 <[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]. > 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 > "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 > "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 "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.
