Back Once More

[sallyt]

Hello,

I was a member of the old AA-MDS-Talk Listserv a number of years ago. I had to drop out for a while, due to many issues. Then, I couldn't find the list! I recently found this forum. Anyway, I did get much better. I have MDS and have been going along with life as a "normal" person, with my regular trips to Dana Farber, but, once again, this disease has reared its ugly head. My hgb & hct are dropping lower & lower (I have RA) and I've been undergoing weekly iron infusions, B12 shots, taking mega doses of folate, but things aren't turning around. Has anyone else been through this course of treatment? It's my first time, normally I've just had blood tx's but my hm doesn't want to keep that up. Would like to hear from anyone who's gone through this---and from any of my old and new friends out there as well!

Thanks,
Sally
dx 1999, MDS-RA. Narrowly escaped BMT in 2000, improved with Procrit, still fighting the battle.

[Zoe's Life]

Sally,

I am glad you found us again. MDS is a roller coaster, isn't it? Are you low on iron, B12 and folate? I think it is pretty unusual to give iron to an MDS patient. Usually we are trying to get rid of too much of it. Have you tried Aranesp (even though it is almost the same as Procrit, apparently some folks respond to one better than the other at different times in the course of the disease), or Revlimid (I don't know what chromosome abnormalities you have).

Hang in there.

Zoe

[Ruth Cuadra]

Hi, Sally.

I remember you from the listserv days! You'll find several folks from the old group here as well as many new and extremely knowledgeable people.

I think Zoe is right that it seems strange to be having both transfusions and iron infusions. Have you had your serum ferritin tested? There a lot about the topic of iron overload in our Transfusions and Iron Overload forum.

In the past couple of years several drugs, including Revlimid (as Zoe mentioned), Vidaza, and Dacogen, have become available for treating MDS so there are options besides transplant that didn't exist before. Choosing between these options is tricky and will depend, in part, on the current status of your MDS. Have you had a BMB since your counts started to decline again?

Sorry you're still dealing with MDS, but I hope Marrowforums can help the way the listserv did. Information and support are the keys.

Regards,
Ruth

[sallyt]

Hi Ruth, and Zoe,
Thanks for the nice notes. It is good to be back, and it has been a long time!
Presently, I am only receiving iron infusions. Back in Nov. 07, I had blood transfusions, but my counts didn't stay up. My hematologist feels that the iron infusions, even though they take longer, is the safest way to go for me right now. I was scheduled to have some surgery this month, and it was canceled due to my low hgb. My surgeon agrees with this plan.
The problem is that my bone marrow does not store iron. I am always in the depleted zone, with a serum ferritin level of 2-3. I will have my level checked again, and if it is not going up, then the plan is to do a bmb, which I haven't had in several years.
We are going to talk about other options. Since Procrit worked for me in the past, it makes sense to try it again. We'll see what tomorrow brings, when I go for my weekly regime. I'll keep you posted.

Thanks for the info!
Sally

[knstone]

Hi Sally,

Sorry your counts are dropping.
Procrit would seem to be a good thing to try.
Research has indicated that combining Procrit with Neupogen improves the chances that an MDS patient will respond. More than one paper has been written, here is one:

http://professional.cancerconsultants.com/oncology_mds_news.aspx?id=34631
This link should take you to one of the papers.

Keep us informed on how you are doing.