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Amifostine

This topic has 5 replies, 1 voice, and was last updated 19 years ago by txnmomma.

Viewing 6 posts - 1 through 6 (of 6 total)

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May 3, 2005 at 2:02 am #5963

KristyS
Member

Hello! It has been a while since I posted. I am sorry for the bad news that plagues this forum. My 14 year old daughter has MDS. Primary MDS if you can believe it !! Transfusion dependent every 18 days like clockwork. Tried Dacluzimab – didn’t work. Next step is Amifostine. Does anyone have experience with this? Any information would be greatly appreciated. So far no good donor has been found for her.

May 3, 2005 at 2:55 am #5964

Suzanne
Member

Kristy, What classification of MDS does she have?If you have told us before I have forgotten. I am not familiar with the drugs you mention. Maybe someone else on the forum is. I am sure you will get answers from more knowledgable people on that score. If you are in Houston you have MD Anderson-a well known center of excellence for MDS. Hope she is being treated there. I have always heard that tho it is rare in young people, they do have a much better chance for a cure. Are they looking internationally for a match?

May 3, 2005 at 9:26 am #5965

txnmomma
Member

I have heard Amifostine works pretty good. My dad’s hemo considered it. My dad is on Procrit and will be on Vidaza soon.

Being in Houston, likle Suzanne there is a COE at MD Anderson.

University of Texas
MD Anderson Cancer Center
Houston, Texas
Elihu H. Estey, MD

What is her classification of MDS? what other ways are they treating your daughter?

I know many patients are on Thalidomide, also.

Best of luck!

May 5, 2005 at 2:20 am #5966

KristyS
Member

She has MDS RA or RAEB. Believe it or not the pathologists at MD Anderson cannot agree on this one. One biopsy said RA, the next RAEB then the same pathologist who did RA looked at it and said it is the same. I guess depends how they categorize the blast cells. Apparently with staining, they can detect things that are not easily apparent, but the percentage can be calculated a number of different ways. For example, as a percentage of non myeloid cells or percentage of total cells. Blah blah blah. We tried a round of Dacluzimab and so far have not seen results. Wendy – thanks for the info. I would like to try thalidomide next. She has no good match found yet, but they are still looking.

May 5, 2005 at 3:00 am #5967

Neil
Member

Hi Kristy,
I was on Amifostine fo 90 days in 1999, along with 5 other patients. Took Pentoxifiline and Ciproflaxin with the Amifostine
None of us responded.
Am aware of only 1 patient who responded after taking it for something like 2 years at 1/9 the normal dosage.
Side effects were minimal when taken with Kytryl and Compazine. do not believe there are any more trials using it since the overall response was so poor.

May 6, 2005 at 9:01 am #5968

txnmomma
Member

Quote:

Wendy – thanks for the info. I would like to try thalidomide next.

My dad was on Thalidomide for approx 3 months and his counts were going up. His RBC’s were looking better and also the WBC’s. They were going up!! BUt sad thing was.. the side effects were too much for him. He was hospitalized over Thanksgiving [2004] for side effects. They were bad!

At the same time, many many patiens respond well to Thalidomide. Maybe this is the route to take!!

I hope it all works out for you daughter!! *hugs*
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