Hi Ricardo,
Thanks so much for your feedback...it is greatly appreciated!!
Just out of curiosity, does your son have a matched donor?
Thanks,
Sandy C
On Tue, Nov 4, 2008 at 4:53 AM, Ricardo Gadelha
[EMAIL PROTECTED]wrote:
Sandy,
Good morning from Brazil.
My son was diagnosed last year while
Hi Parichart,
Thanks so much for the info!
I am so glad to hear that your son is doing well on Gleevec. We have not
been told of the risk of slow growth with Gleevec, is this common?
Thanks,
SandyC
On Mon, Nov 3, 2008 at 8:19 PM, Parichart N. [EMAIL PROTECTED] wrote:
Hi Sandy,
My son is 12,
Has anyone on Gleevec had vision problems such as blurring or difficulty in
focusing?
My opthalmologist needs to know if these may be side-effects of Gleevec or
strictly an opthamological problem that needs to be addressed as such.
Thanks in advance for any info.
Vivi
Generally, Gleevec does the same things to children that it does to
adults. But that lack of long term history with the drug prevents
knowing what will happen over a very long term. But then, 7 1/2 years
plus the clinical trial period of several more years does provide a
lot of evidence that
Gleevec can affect the eyes by causing eye bleeds on the retina that
will cause vision problems. I understand that it can also cause some
other eye issues. I had an experience where I could not see a certain
portion of what I was looking at through one eye for several minutes.
I was able to
Vivi,
While I was on 400MG of Gleevec I ended up with psuedo tumor cerbri (elevated
spinal fluid pressure) which lead to papilledema (swollen optic nerves) It
caused blurred vision and some minor headaches, I have been on 500MG of Diamox
(diuretic) and that has helped with the pressure but the
Nike founder Phil Knight has given $100M to the OHSU Cancer Center,
with nearly all of it going to Dr Brian Druker's research. Dr Druker
was the driving force behind the discovery of Gleevec, and a leading
CML expert:
http://www.ohsu.edu/xd/about/news_events/news/cancergift102908.cfm
This is a great news! Do you think that they will use it to fund research for
CML?
--- On Tue, 11/4/08, Trey [EMAIL PROTECTED] wrote:
From: Trey [EMAIL PROTECTED]
Subject: [CMLHope] Large Donation Funding OHSU Research
To: CMLHope CMLHope@googlegroups.com
Date: Tuesday, November 4, 2008, 11:11
I just sent the message to my quilt guild, and hopefully they will whip
up some special home made cards to send to Bethany. Whe has prayers
coming from Massachusetts! Hugs, Sue
--~--~-~--~~~---~--~~
[CMLHope]
A support group of http://cmlhope.com
Sandy,
Good morning from Brazil.
My son was diagnosed last year while he was 17 yr old. It's not easy to live
with Gleevec but we have no option so far. He is doing ok with it. BMT is
very risky and if your son is doing ok with Gleevec, I think that you should
keep him on it.
Blessings,
Ricardo
Sandy,
In fact he doesn't have any donor. But even if he had, we do not go to BMT.
There are only 60% chance of survive and there are some cases that you have
to take gleevec after BMT or even worse, go to another BMT.
So, we are taking our chances with gleevec, and if one day it fails.. go to
Vivi, Blurred vision is something I have had at the very start with
Gleevec. I have two different pairs of glasses and that doesn't help. One
day it's
the left eye and another it's the right eye. Sometimes I get up and both
eye's are clear. To day both eye's are blurred. Hope this
I have 2 ONC's and both recommend that when my Hemg reaches 8 that I
head to the hoospital for type and match and 2 pints. I had
transfusions from Nov 2006 thru May 2007. I went off 400mg Gleevec and
my counts started to rise on their own. In Jan. 2008 I was again
detectable so went back on
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