Help me with some info please….

[Dawn]

My dad was diagnosed with MDS/RARS (not sure of the chromosone thing yet, or dad has not told me) in October, he has never been ill with anything so this was a blow of course…. my issue is that they started him out on epoetin… then they decided to go with aransep… he has now had 10 injections with this…2 weeks ago his blood was at 7.2… so they transfused him and it only went up to 8. I am wondering if anyone out there can tell me if it took them a long time to start to feel the effects of aransep or should he talk to the MD about something different, like y’all I am scared and just want him to feel better….Any input would be wonderful. He see’s Dr. Stang in Spokane when here in Washington, and I met him, he seems very good…. My dad now see’s DR. Sullivan in Yuma and their rapport is something to be desired, so of course that isnt great. I had faxed down to my dad this info on Revlimid, although not approved I believe they are still accepting patients for the clinical trials from what I have read. My dad’s iron was high…at one point not sure what it is going on now though. I feel so helpless, like I have to do something… so I research and study like a mad woman…. I am sure all you have done the same.
Really happy to have found this board, I think it will be a great support. Thanks again!

[Carrie]

Dawn,

I can’t really help you but welcome to the board. Sorry you have to be here but I’m glad you came for advice. There are really friendly, caring, and knowledgeable people on this board.

My father has secondary MDS (from treatments from another cancer) and his treatments are different than people like your father with primary MDS. Soooo… I probably won’t be able to advise you.

Good luck ,
Carrie

[Suzanne]

Dawn, How old is your Dad? And what is his classification of MDS? Is he being treated at a Center Of Excellence for MDS? If not he should go at least for a consultation and treatment options.
There is a list of centers on the main page of this site. If he is Wash State, Fred Hutchinson is well known at least for transplants , I don’t know how much other treatment research is done there.We need more infomation ,then people in a similiar situation will give you inofo about their treatment experiences. People react very differently to the disease and to the meds so there are no hard and fast answers. Neil has a great list of questions for talking to Dr.’s. and will probably email them to you when he sees your post.suzanne

[Terri]

I think aransep… is like Procrit just administered a little differently, MY husband gets weekly shots of Procrit and it does take a little bit for it to start working. Also WIth the Procrit your iron level has to be normal to help it work. Sorry do not have any experience with aransep… . I wish your Dad well

[Suzanne]

Dawn, I am not sure I would wait until spring to see someone at a center of excellence unless your Dad has made a final decision to pursue supportive care only. This disease can change quickly especially if he is at risk for transforming to AML. Suzanne

[tiburon48]

Suzanne’ I am 79 and I was dx’d May 2003 with myelofibrosis. I became transfusion dependent. After a few false starts with other drugs like Procrit and Thalidomide my Doc put me on Trisenox and Aranesp. Worked for a while, felt fine off the trans fusions HGB up to 11.9 great energy levels.Of late things are starting to reverse and counts are going down but still feel reasonably good HGB at 10.1 and holding steady. I play golf once a week.The addition of Neupogen seems to help WBC.There is a new drug Vidaza that is specific to this disease, ask your MD about this. He might not be aware of this. Hope this helps.
Bob V.

[tiburon48]

Dawn, Sorry about the name change. I should have said Dawn not Suzanne. Excuse my “senior moment”
Bob V

[czaring]

Dawn, I asked you at your “WA” posting where you were – but I’ve read some more now and find you are in Republic. There are better experts than lil’ ol’ me here … I’ve only been reading for a little over a month. But I’ve read a number of postings indicating that if iron levels are low …. then red cell production boosters of all types will not take hold and work as well as they should. That is worth checking on. The Aranesp is working well for my mom … but her iron levels were sufficient when the injections began.

[B. Greene]

I would certainly pursue the Revlimid if it were an option and agree with Suzanne that waiting might not be a good idea.

[Author]

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