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 <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
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 <cmlhope@googlegroups.com>
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 <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
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: cmlhope@googlegroups.com;
Subject:Re: [CMLHope] Re: Merry Christmas and happy Hilidays
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