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Old Fri Jul 29, 2011, 07:31 PM
LynnI LynnI is offline
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Join Date: Jun 2008
Location: Ontario, Canada
Posts: 99
Quote:
Originally Posted by celebrations View Post
Hi Lynn,
maybe you remember me, we have contacted three or four times in the mds-foundation.org's forum about two years ago.
Didn't you work with dogs...?

It is absolutely wonderful, that your response to VPA is so long-lasting!!!

To confirm Lynn's experience with VPA:
My doctor had told me with a trisomy 8 I probably could be lucky and I was.
In 2008/09 I took Valproic acid (it is a traditional drug against epileptical attacks) and I responded to it for almost 10 months. I was transfusion-free, what a gorgeous experience. The drug kept my HGB between 9 and 10.
But then it slowly stopped working and my HGB went back to 8.
My physician tried to increase the dosage, but unfortunately the response was over...

Like you, Lynn, I gained some weight (14 lbs !!!) during that time. Once I stopped to take the drug, it fell off me within a couple of weeks.
In the beginning of the therapy I used to be very tired, but this side-effect disappeared after two weeks.
What dosage do you take, Lynn?

So, for some MDS-patients VPA seems to be a "harmless option" for some time.

Greetings, Bergit
Hi Bergit,

I only take 250 mg twice a week, if I take more than that my hemoglobins skyrocket into the 150 -160's. Yes, I still train and compete with dogs

Cheers,
Lynn
__________________
Lynn: 49 yrs young, Female. Dx April 2008, MDS RCMD with Myelofibrosis Gr. 3/4. Was blood transfusion dependant. Treatment: Started Valproic Acid July 11, 2008, last tx July 17, 2008. 3 yrs tx independant, normal CBC's, Life is Good.
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