Procrit and Revlimid contraindicated?

[maggiemag]

Hi everyone! It’s been months since I have been on this forum. I was diagnosed about 2.5 years ago with MDS, probably 5q-, although the physician still has me listed as unspecified type. The plan has always been to start me on a growth factor like Procrit when my Hb went below 10. Then I would start on Revlimid when I became transfusion dependent. So I have been hanging around 10.2-10.5 for a while. Last week my Hb was 9.5, Hct of 28 and RBC level of 2.7. The honc (what I call the heme/onc!) now wants to do a third bone marrow biopsy and go from there. The problem is I had a pulmonary emboli in Dec., 2010 and apparently have anti-phospholipid syndrome and need to be on Coumadin the rest of my life. I was researching the drugs and it seems that both are contraindicated in people who have had clots. And that there have been studies with people on anti-coags and that it didn’t change the risk. Does anyone know if this is all true in real medical practice? If so, is my only choice to wait til I fall to 8.5 and then get a tranfusion? Since I already have CHF, I would get transfused at a higher level than someone who doesn’t already have heart failure.
Btw, I am now 64. I do have an identical twin sister but have also had lung cancer of stage 1A, and another suspicious nodule growing now, so I doubt anyone would transplant me. Besides that, I am low risk right now, although that may change with the next BM. So basically I am asking if anyone knows for sure if I would not be able to go on Procrit or Revlimid. I will ask the honc, of course, but I don’t see her for over a week as we will repeat the labs and add others.
Thanks in advance! margaret

[maggiemag]

So, 13 days and not one response…sad.

I guess I will answer my own question! I had the bone marrow bx, thankfully another piece of cake for the third time, no sedation btw. The cytogenetics aren’t back yet, but the MDS is progressing. I started on Aranesp injections this past Tues. I start on Revlimid as soon as the paperwork is completed and someone pays for it! The Aranesp is contraindicated with a history of clots but the honc thinks the benefits far outweigh the risks. I will just remain on the Coumadin with close control, and they have asked for my own machine to do the INR’s at home. I think it will be approved. The Revlimid,it seems, is contraindicated in patients with Multiple Myeloma, not MDS. They take 25 mg./day while MDS patients take 10. Not looking forward to taking it though. Repeat Hb is 9.0,so will receive my first transfusion soon.

Margaret

[riccd2001]

As always YMMV but if my Hgb is above 90, no PRBC transfusion for me. In my case there was no indication of need for growth treatment.

I was on Revlimid at 10mg about three years ago but even with 5qdel my only response was to have REALLY low WBC and after four months w/o Hgb bump, doc had me stop. The main side effect I had was being even more fatigued and into bed by 10 and sleep around clock to noon.

So i’m transfusion dependent every three weeks needing two PRBC units and now at 195units that have ranged from 248ml to 361ml.

I’m very thankful for those blood donors who have given patients like me an extended life.

BTW if you wish to have a faster and more active response to specific questions, drop by marrowforums.org and join in the discussions.

[Anneg]

Hi Margaret:

welcome back. I don’t think lack of response is anything personal, As fo me, I can’t answer any of your ?. My case is very different, as you, know, no one two cases are the same. I don’t take procrit, it didn’t work for me. I am high risk, high stage MDS/5q was 15% blast. After 6 months of vidaza infusions, 7days first of every month, for two months, was not doing enough for blasts in blood, messed up chromozone. Then changed to 5days at first of every month with revlimid for 21dys. No blasts in blood or bone marrow right now. I am transfusion depend every two weeks. white counts stay around 3, hg will go to 10? then drop in less than two weeks to real low 7. Platletts did get up to over 70 but now in low 40. so I have been on revlimid but keep looking and as Riccd said check out marrowforum they are a great support as well. good luck let us know how things are going.

Anneg
God Bless

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