Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

MDS/MPD

This topic has 7 replies, 1 voice, and was last updated 15 years, 1 month ago by mtair37.

Viewing 8 posts - 1 through 8 (of 8 total)

Author

Posts
March 31, 2009 at 4:36 pm #21938

mtair37
Member

my husband has been dx with MDS/MPD he has tried one round of chemo with 4 treatments and it did not work. Now we are debating wether to try the clinic trial or the Vidaza treament,anyone know much about this and what to expect.

March 31, 2009 at 6:48 pm #21939

jaxem
Member

mtair
insufficient information about what’s going on. (1)what chemo treatments, (2)what type MDS diagnosed (RA, RAEB, etc.), (3)what clinical trial, and (4)why Vidaza. Also, how old is he, where is he receiving treatment, have you gotten a 2nd opinion, and is he seeing a hematologist? Are you very far from Seattle to get to the Fred Hutchinson center?

April 3, 2009 at 7:08 pm #21942

mtair37
Member

Sorry I guess I should explain more, he has had the dacogen went 4 rounds, it did not do anything. Been off from it for about 2 months now. Counts were holding but now the wbc is rising fast again. Yes he is seeing local hematologist and also one at the Huntsman Cancer Center in Utah. They both had the same opinion that it is MDS/MPD. Not sure went down Wednesday of this week, they want to start him on a clinical trial for clofarabine low dosage. Really worried about this. He had another bm test on Wednesday getting results today. Anyone been on this trial? Thanks for getting back to me. Any help is appreciated.

April 3, 2009 at 7:11 pm #21943

mtair37
Member

He is 71 years old, otherwise healthy.

April 5, 2009 at 12:13 am #21945

Mary4Mike
Participant

Did your husband have a hard time with the Dacogen? I am asking because it usually takes longer than 4 rounds of Dacogen before giving up, unless there is severe drops in counts, hospitalization, fevers, etc.

April 5, 2009 at 3:36 pm #21948

mtair37
Member

He did okay after the first round. The first round had some serious outcomes for him, but then things got better. He counts were not doing well however and after another BMT it showed no improvement so they said it was not worth it. We are waiting now to come up with some kind of answer. Good luck to you.

April 10, 2009 at 2:23 am #21968

jaxem
Member

mary’s right about 4 cycles being low. It is the minimum but 6 is the norm. I would think the docs would have gone the 6 rounds, waited a month, then done the biopsy. But they’re the docs and I’m not. also, I’m not aware of anything at the Huntsman Center. Is it in SLC? attached to a major hospital? Again, any chance of going to Hutch? My wife had clofarabine which didn’t work for her but did work for another Forum member. Everyone is different. a dosage of clofarabine for 5 days costs $250,000. Whew!!

April 18, 2009 at 11:24 pm #21995

mtair37
Member

sorry about your loss. Husband had the the dacogen for 4 cyles but because his blood count dropped so low and he bottomed out. They took him off after the BMT when it showed that it was not helping at all. He is now on a clinic trial for the clofarabine. He just started it last week. Day 3 right now, hope it helps. He wbc was rising pretty fast. If anyone has any thoughts about this would appreciate them. They are putting him on a low dosage to start with to see how he will react to it.
Author

Posts