Dear Rszimo 0702
Hi there,thanks so much for getting right back to me its truly appreciated.
My husband is the one who has cml.
He had a nose bleed 2 days in row so i was concerned and wrote as i
remember in the past seeing nose bleeds on the list.He had goten them just a
few
times in the past.
It's starting to get cold here so i mentioned maybe he should use saline.
He hasn't has any eye bleeds but the next day after the nose bleed his
eye was red he went to see his eye doctor and said it was a eye infection and
put him on drops..i'm sure if it was a bleed the eye doctor
could tell ...right?
When you were off the gleevec u said you had the stroke why were u off the
gleevec.
could the stroke happened from going off the gleevec.
My husband works out all the time.
Did you have any breathing issues when you workout..any rushs.
Well I am glad to see your in a good place and continuing good health.
God keep you in his care.
Thanks again for being so kind, any info is always helpful.
TEEPEE
In a message dated 10/1/2011 3:49:52 P.M. Eastern Daylight Time,
rszim0...@aol.com writes:
Dear Teepee,
Yes, there are 1% of the population who take gleevec who receive brain
bleeds and I was one. That is why when you have tons of eye bleeds one of the
people on here said they were taken off gleevec. They are all related.
The brain bleed was a small one the first time, with no after-effects. Last
year I had a bona fide stroke while not on gleevec. The only thing they
could attribute it to was cavernous malformations in my brain. I was
stenuously exercising at the time as well. The docs said at that time, "see,
the
gleevec must not have been what caused the brain bleed the first time.
Let's start you on sprycel." But I said no, as they gave me one dosage of
tasigna after the gleevec and it gave me another eye bleed right after the
first brain bleed. So, I am skeptical of taking anything until I come out of
cellular remission, (if i do). You might not agree but that stroke gave me
a greater appreciation for life, for sure!!! And taking a risk again if
not necessary was just not sound reasoning in my book. Doctors or not! So,
if I do come out of cellular remission then I will get on something,
(provided I get on insurance...??!!!) Until then I enjoy every day with no
med.
Oh, the reason I knew I had a brain bleed was my right side went numb,
face, and arm with slight tingling. (1st time). Second time stroke I had left
side go numb, then extreme headache, vomiting and nausea. Some
repercussions I will have to live with since that one.
Best wishes to you all for great health,
Susan Zimmerman (rszim0...@aol.com)
-----Original Message-----
From: Teepee710 <teepee...@aol.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Sat, Oct 1, 2011 11:41 am
Subject: Re: [CMLHope] Re: Problems with Food and Gleevec
Dear Rszimo 702
Thanks for your email about the nose bleeds.
Is there any connection with the brain bleeds and gleevec..
How do you know you have a brain bleed.
I have ben telling my husband to use a saline solutions hoping that his
nose being dry was the problem .
Any info u could give me on any of these subjects would be great.
Thanks
Teepee
In a message dated 10/1/2011 8:36:18 A.M. Eastern Daylight Time,
_kneesrbad2@gmail.com_ (mailto:kneesrb...@gmail.com) writes:
Gleevec dries out the sinuses which then creates nose bleeds. Use a
saline nasal mist and a neti pot. It helps a lot. Be sure if u live in the
snow country your furnace has a working humidifier.
On Sep 30, 2011 9:46 PM, <_Teepee710@aol.com_ (mailto:teepee...@aol.com) >
wrote:
> Could anyone tell me if thee is any connection between nose bleeds and
> gleevec.
>
> teepee
>
> In a message dated 9/30/2011 3:38:41 P.M. Eastern Daylight Time,
> _maggymay@bellsouth.net_ (mailto:maggy...@bellsouth.net) writes:
>
>
> Was on Sprycel and experienced shortness of air. Hematologist stopped
the
> Sprycel. Before that was on 400mg Gleevac and it was stopped due to Eye
> bleeds, bilateral. Now am reinitiated on Gleevac 100mg every day and all
> is well. Barely detectable Philadelphia Chromosomes per the BCR ABL.
>
>
>
>
>
>
> From: kellyelise <_kellyelise5@aol.com_ (mailto:kellyeli...@aol.com) >
> To: CMLHope <_cmlhope@googlegroups.com_
(mailto:cmlhope@googlegroups.com) >
> Sent: Friday, September 30, 2011 1:05 PM
> Subject: [CMLHope] Re: Problems with Food and Gleevec
>
> Thank you for the info on Dr. Talpaz - I had sent him an email a while
> back but received no reply. My onc NP recommended Dr. Jorge Cortes at
> MD Anderson in Houston - and that's where I'm going!! They called
> yesterday and I have an appt. on Oct. 10. Thank God for my mother, I
> could not afford to go without her. Wishing you all the best!! Those
> on Sprycel, please watch for symptoms of SOB, weakness, inability to
> climb stairs, weight loss (initially I had a lot of weight gain -
> Aldactone and Demadex took most of the fluid off), loss of appetite,
> etc. You can find the symptoms of PAH through any search engine
> (Google). It is a disease that is VERY difficult to diagnose!!
>
> Bless you all!!
>
> Kelly
>
> On Sep 27, 9:30 am, kellyelise <_kellyeli...@aol.com_
> (mailto:_kellyeli...@aol.com_ (mailto:kellyeli...@aol.com) ) > wrote:
>> Suzieq,
>>
>> You are not whining or complaining!! We all have to vent sometime!
>> Quite frankly, I am grateful to be off all TKIs as of now. The Sprycel
>> about did me in. I don't know if you remember, but, I now have PAH
>> (pulmonary arterial hypertension) as a result of the Sprycel. I
>> underwent a heart cath in 1/11 and am now sporting a continuous
>> infusion pump carrying Remodulin through a central venous catheter.
>> Not pretty, but I feel better than I have in YEARS. I can actually
>> walk around town now whereas I could barely climb 3 steps without
>> help.
>>
>> My onc wants to put me on Tasigna, but I am highly resistant. I'd
>> rather wait until the other 2 new drugs come out and see if I could
>> try one of those. I have tried getting an appointment at MD Anderson
>> with Dr. Jorge Cortes, but, so far have been unsuccessful. I REALLY
>> need a CML specialist....I live in Ohio....any ideas anyone??? I am
>> willing to travel, hopefully, before the snow flies.
>>
>> I stopped complaining, Susieq, and the PAH ramped up to the point I
>> was taken by ambulance to CCF (50+ miles away from where I live). My
>> onc always made me feel like I was a whiner...so, I stopped whining.
>> "No one else on Sprycel has had these symptoms....." Well, I bet NOW
>> they DO!! He still denies that the Sprycel was the culprit even
>> though my cardiologist and pulmonologist BOTH dictated in my discharge
>> summaries that it WAS the cause....it progressed too rapidly to be
>> anything else. Also, I am on a minimal dose of the Remodulin and my
>> health has dramatically improved. I just wish I could get put on a
>> subcutaneous pump....bleh! Nothing like waking up in the heart
>> failure unit with no clue.... so, now I'm complaining, ha ha!!
>>
>> Keep fighting, the side effects suck!! We will all just muddle
>> through and praise the fact we are still alive even though we feel
>> like shit. Truthfully, I am grateful to still be alive and I wouldn't
>> be if hadn't been for the Gleevec putting me in remission in the first
>> place - now I am waffling between undetectable and "weakly positive"
>> and I have been off the Sprycel since December 2010. I'll take the
>> chemo and whine like a baby but still, in fact, be grateful for every
>> day with my family. :)
>>
>> Kelly
>>
>> On Sep 26, 3:38 pm, _Myvet...@aol.com_ (mailto:_Myvet...@aol.com_
(mailto:myvet...@aol.com) ) wrote:
>>
>>
>>
>> > Hi Suzieq, We all here have had our good days and our bad days.
> That's
>> > what's so great about this CML group. We are all good listeners.
> greenie
>>
>> > In a message dated 9/26/2011 12:12:45 P.M. Pacific Daylight Time,
>>
>> > _sheila._a.wat...@gmail.com_ (mailto:a.wat...@gmail.com) _
(mailto:_sheila.a.wat...@gmail.com_ (mailto:sheila.a.wat...@gmail.com) )
writes:
>>
>> > Susan:
>>
>> > Good to hear from you again......& a great big "THANK YOU"! I
>> > remember your struggles.....& I just want you to know, I wasn't
>> > "complaining" about mine, cause I, too, am very grateful for Gleevec
>> > & the wonderful doctors that I've had since my journey with CML began
>> > in Jan. 2004. I am very thankful to still be alive and kicking! If
>> > my recent post sounded like I might be "whining" or "complaining", I
>> > didn't mean it that way. Was just going through a bit of a rough
>> > spot. I never thought of it before, but I think that week was also
>> > the time of some very emotional family drama going on as well a close
>> > friend's son & his family in a serious car accident. A lot to digest
>> > in one week, so could have set off some of this side effect of
>> > Gleevec. Thanks again, Susan, for your uplifting post here.
>>
>> > God Bless you,
>> > Suzieq
>>
>> > --
>> > [CMLHope]
>> > A support group of __http://cmlhope.com__ (http://cmlhope.com_/)
(_http://cmlhope.com/_ (http://cmlhope.com/) )
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> Pacific Daylight Time,
>>
>> > _sheila._a.wat...@gmail.com_ (mailto:a.wat...@gmail.com) _
(mailto:_sheila.a.wat...@gmail.com_ (mailto:sheila.a.wat...@gmail.com) )
writes:
>>
>> > Susan:
>>
>> > Good to hear from you again......& a great big "THANK YOU"! I
>> > remember your struggles.....& I just want you to know, I wasn't
>> > "complaining" about mine, cause I, too, am very grateful for Gleevec
>> > & the wonderful doctors that I've had since my journey with CML began
>> > in Jan. 2004. I am very thankful to still be alive and kicking! If
>> > my recent post sounded like I might be "whining" or "complaining", I
>> > didn't mean it that way. Was just going through a bit of a rough
>> > spot. I never thought of it before, but I think that week was also
>> > the time of some very emotional family drama going on as well a close
>> > friend's son & his family in a serious car accident. A lot to digest
>> > in one week, so could have set off some of this side effect of
>> > Gleevec. Thanks again, Susan, for your uplifting post here.
>>
>> > God Bless you,
>> > Suzieq
>>
>> > --
>> > [CMLHope]
>> > A support group of _http://cmlhope.com_ (http://cmlhope.com/)
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>>
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