RE: [CMLHope] Scared to switch to Tasigna

2010-08-16 Thread Penny Mac Donnell 

I have never written to you but my son has CML and has had it for 7 years and 
he is doing fabulously.  He was diagnosed shortly before starting medical 
school and he is now a Dr. and in his last year of his medical residency.  He 
was started on gleevec when first diagnosed and did well on it but after 4 
years it quite working for him.  They switched him to Sprycel and he hasn't had 
any problems at all. He has less bone pain and you would never know he has ever 
been ill. It they want to change you off of Gleevec have you asked them about 
Sprycel?  I have seen a great difference in my son and he has been on the 
Sprycel for 4 years now.

Best of luck

Penny MacDonnell
From: icandoall...@aol.com
Date: Mon, 16 Aug 2010 16:55:18 -0400
Subject: Re: [CMLHope] Scared to switch to Tasigna
To: cmlhope@googlegroups.com








I was under the impression they wouldn't put you on Tasigna if you had a 
heart problem already.
I would opt for Sprycel if I were you.
Some people do really well on Tasigna, but with you already having a heart 
problem, I don't think I would want to be on it.  Sprycel is the next line 
for treatment if you fail Gleevec.
Talk to your doctor or see a specialist right away.
Blessings,
Jeanie<3
 

In a message dated 8/12/2010 4:15:01 P.M. Pacific Daylight Time, 
peghardi...@hotmail.com writes:
Hi 
  everyone,
I am hoping someone has thoughts to share with me.  I was 
  dx'd in
February, started Gleevec 400mg and had unbelieveable results. PCRU 
  at
4 months!  However, also severe irritable bowel syndrome by 5 
  months!
It started as gas, bloating, diarrhea and just got worse the longer 
  I
took Gleevec. Finally, it left me doubled up in pain any time I 
  even
tried to eat. Please understand I am not a lightweight...I am 
  allergic
to pain meds and local anesthetics, have done a root canal with 
  no
anesthetic at all!  The IBS was severe. The gastro doc is certain 
  it
is the Gleevec. Immodium didn't relieve the diarrhea any more, nor 
  did
other meds relieve pain.  Only pain relief was to not eat at 
  all!
Didn't matter what foods I ate or didn't or what time of day I 
  took
the Gleevec (with food and a full glass of water).  Have been off 
  of
Gleevec for a week now and still working on getting bowels back 
  under
control, but thankfully the pain and bloating are gone. They want 
  to
start me on Tasigna next week and I am terrified.  I already have 
  a
heart arrhythmia and the Gleevec has already elongated my 
  QT...still
within tolerance, but close.  I am scared of dying from 
  long QT, (with
an arrhythmia already, how would I know I was having a 
  problem) and
barring that I am also scared of other side effects I am 
  hearing about
like migraine headaches, high blood sugar, rashI am the 
  sole
support of four, so stopping work is not an option for me unless 
  I
would also like to stop eating and having a roof over my head!  I 
  want
to live, but at what price?  Has anyone else had such severe 
  effects
from Gleevec and found a way to improve them?? I really don't want 
  to
change if I don't have to.

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[CMLHope] RE: [CMLHope]

2007-04-22 Thread Penny Mac Donnell 

I don't know about your situation but my son and his wife (he has CML) had a 
baby boy 2 years ago and he is perfect and doing great. No one ever told 
then not to have children when he had the disease and he was on gleevec and 
so they did.  Hope all goes well for you.

Penny, CML mom


>From: <[EMAIL PROTECTED]>
>Reply-To: CMLHope@googlegroups.com
>To: 
>Subject: [CMLHope] Date: Wed, 18 Apr 2007 12:00:56 -0700
>
>I am pregnet my husband has been on gleevec for two years, does anyone know 
>if there are anyside affects for the unborn child? I called COH and they 
>said it was not an easy answer and sent us an e-mail with all the side 
>effects of gleevec, but not much on the question. thank you
>>

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[CMLHope] Re: Medical Articles 3/22

2007-03-24 Thread Penny Mac Donnell 

Rob, I don't get any atricles or information I only get an ad to sign up for 
orlean email. Can you find out or explain what this is about? thanks, Penny 
M


>From: Rob <[EMAIL PROTECTED]>
>Reply-To: CMLHope@googlegroups.com
>To: cmlhope@googlegroups.com, leukemia@googlegroups.com
>Subject: [CMLHope] Medical Articles 3/22
>Date: Sat, 24 Mar 2007 00:30:55 -0500
>
>Medical Articles
>3/22
>
>--
>Powered by NewOrleansEmail.Com http://neworleansemail.com
>
>>

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