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Epival Treatment

This topic has 8 replies, 1 voice, and was last updated 15 years, 9 months ago by Zoe.

Viewing 9 posts - 1 through 9 (of 9 total)

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July 12, 2008 at 4:12 pm #21031

LynnI
Participant

Hello everyone;
My MDS Dr. confirmed yesterday I have MDS RA with no chromosome damage, he believes that the MPD is minor. Since I have been denied Rivlimid by our insurance company I am starting Epival (HDAC inhibitor). The drug is a anti seizure treatment, with little or no side effects.
I have to have weekly CBC’s so they can track if my RBC’s are coming up or not.
I also have to have another transfusion next week, but hopefully that will be the last one for a very long time if this drug does as we hope.

Has anyone heard of this treatment or had success with it?

Thanks
Lynn

July 12, 2008 at 7:25 pm #21032

Frankie
Member

Hi Lynn

I have never heard of Epival. If I were you, I’d research it thoroughly.
Also, I’m sure that the makers of Revlimid have a program for those who cannot pay.
Please check into this. It’s been a life saver for me.

-Frankie

July 12, 2008 at 10:01 pm #21033

jaxem
Member

you know, I’ve always voted Republican but something has to be done about the health system in this country. No one should be denied anything for health reasons.

July 12, 2008 at 11:55 pm #21034

Frankie
Member

Amen to that, Jack.

-Frankie

July 13, 2008 at 12:23 am #21035

Zoe
Member

I hear you Jack. My insurance will not cover non-generic pills. I dread the day Aranesp stops working, because Revlimid is the next choice. There is no way I can pay for it.

Frankie,
Does that program for Revlimid take long to get into?

Zoe

July 13, 2008 at 3:45 am #21036

LynnI
Participant

It is frustrating, I live in Ontario Canada our health care is suppose to be covered by the high tax’s that we pay. So not only does my country and province fail me, so does the company that we paid extra money too through my husbands work for extra health care………..

July 14, 2008 at 12:23 am #21037

Frankie
Member

Hi Zoe…
I wasn’t on the program. My Medicare and MediCal paid for it. I meant to write that Revlimid is a lifesaver.

Give this a try:
http://celgenepsc.com/pat_free.aspx

Good luck to you.
-Frankie

July 15, 2008 at 4:18 am #21038

sdrake
Member

It took several weeks for Dad to get financial assistance for Revlimid. He started the process in late June of 2007, and it was late August before he actually got the Revlimid in hand. I wouldn’t hesitate to get the process started if that is the direction you are going to take. Dad always regretted that he had to wait so long between stopping Vidaza and starting Revlimid.

Shari

July 16, 2008 at 1:53 am #21039

Zoe
Member

Shari,

Thanks for the info. For now the Aranesp is holding my hgb in the 10’s which I can live with. It is so hard to tell when it is going to stop working. I have had my counts fall a little each time for months, and I thought for sure Aranesp was losing its efficacy for me, only to suddenly have a hgb count of 11.5 one month! When it stops working is it a sudden drop, or a slow decline? I would like to have some time to start the process with Amgen. But I reckon it won’t work that way. But hey, maybe I will be one of those lucky ones who goes into a spontaneous remission–at least until I find a rich husband to pay for my meds :*), or win the lottery or inherit a million from some unknown relative…there’s always hope

Zoe
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