Thank you, Susan. You must have
remarkable will and faith and your story
provides hope to me. I feel fortunate to
have an illness that can be managed and
to know that there is a support group
to help me.
God bless you!
Marcie
Sent from my iPhone
On Mar 20, 2011, at 4:53 PM, Susan Zimmerman <[email protected]> wrote:
I'd also like to hear from others who might have had brain bleeds?
My own story was just recently relayed, as you probably saw,
Marcie. Two brain bleeds since discovering CML in Feb.
2005....total remission for two years with gleevec, then first brain
bleed. Stopped gleevec May 2007, have not been on any medication
since (hooray) and still in cellular remission. Then had second
stroke, (larger brain bleed) in April 2010. All faculties are back,
left side is
weak and I'm praying I never have another one. Novartis says 1%
have brain bleeds due to gleevec, that was also a long time ago.
Wonder what the figures are today.
Symptom was my left side, whole arm, face, legs got numb....first
time. Went to E.R. for diagnosis. Second time vomiting, dizziness,
left side numb again. Got put in Intensive Care immediately on that
one with full-fledged stroke. Treatment is virtually nonexistent
unless they have to operate to stop the bleeding, which they did
not, thankfully. It was not caused by a blood clot like many
strokes. Don't worry, almost nobody else will get this due to
gleevec....only 1%.
Blessings,
Susan Zimmerman
(Indiana)
-----Original Message-----
From: Marcie <[email protected]>
To: cmlhope <[email protected]>
Sent: Sun, Mar 20, 2011 12:11 pm
Subject: Re: [CMLHope] Re: Kidney function
Just wondering for those who have had brain bleeds, what are the
symptoms? How do you know what is happening and how is a brain bleed
treated? Also, do you feel pain when you get an eye bleed?
Thank you all of the helpful information.
Marcie
Sent from my iPhone
On Mar 20, 2011, at 3:14 PM, Suzieq <[email protected]> wrote:
> It's one of the side affects of the Gleevec according to the
paperwork
> I got from Novartis. I circled it and showed it to my eye doctor.
> They tell me that this is not a serious thing.........My husband and
> my son both have had this happen at times for no reason. I forgot
> exactly what can trigger them according to my eye doctor. I think
he
> said stress (which is probably my husband and son's reason, LOL) as
> well as bending over and lifting stuff. I did none of those things
> when my worst one happened..was just sitting in the chair and
noticed
> some pain in the right eye. Got up and took a look, it was bad. I
> called my Onc/Hem doctor and they told me to go see my eye dr. I
had
> just had one two weeks prior, so kind of scared me. Needless to
say,
> when I went to see my Onc./Hem. a week later, I still had the bloody
> eye and showed it to her, plus the paperwork from Novartis. She
told
> me to let her know if this did not clear up soon, she would send
me to
> an ophthalmologist as I may have some blood vessels that need
> cauterizing....but, it cleared up on it's own and I've not had
another
> one in quite a while.
>
> Suzieq
>
> --
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