Fighting a Good Fight

[SkipM]

Hello Everyone. I have been reading Marrowforums since June 07. That is when I was diagonsed with MDS at Thomas Jefferson Unv Hosp in Philadelphia. I am a 48 year old male married with 2 children. Currently my Hgb is 10.2, platelets 57 and ANC is 280. The lowest my HGB has gone is 8.1 and the lowest my platelets have gone is 41.

My marrow is considered Hypoceller. I am still at a low risk rating. I am also non 5q.

I was in a clinical study for Revlimid but only lasted 2 rounds. My ANC needed to be above 500 to continue. While on Revlimid my ANC went down to 39 and took awhile to get back to the 400's.

Procrit did not have any effect for me. Neupogin has worked great though.

My doctor feels the Revlimid did work for my HGB and platelets. So since I am off of the study I can take Neupogin along with 10mg of Revlimid. I have just started this combo so I will see how it works in the next month or so.

Has anyone else been on both Revlimid and Neupogin at the same time? What is your experiance with this?

So far I have not missed any work due to being sick or fatigued. The only time I miss work is for Dr. appointments.

I can't run anymore but I try to ride my bike on a bike trail.

[Lisa V]

Hi Skip,

If your marrow is hypocellular, do you know why you were diagnosed with MDS as opposed to AA? Do you have chromosomal mutations? Also, if you do not have a 5q deletion, do you know why your doctor chose to treat you with Revlimid? It is my understanding that Revlimid is primarily indicated for 5q del MDS and multiple myeloma.

I'm just curious if anybody has ever discussed trying ATG/cyclosporine. While it's not usually considered very effective for most types of HYPERcellular MDS, it has had a better track record with the HYPOcellular variety. Of course it would probably depend on the circumstances, but if it were effective, it seems like the potential for full remission would be greater than with Revlimid.

My husband was originally diagnosed with AA (and we still think of it as that), but the diagnosis was changed to hypocellular MDS when they discovered a small trisomy 8 clone. Other than that, it seems like basically the same beast, and it has responded just as well to the immunosuppressant regimen. I'm just wondering if you might fall into a similar category, or is there more going on there that would rule that out?

Take care,

[Birgitta-A]

Hi Skip
It is difficult to choose drugs when you have MDS and we still don't know much about the best treatment for a special patient. Here are links about ATG and Revlimid (Lenalidomide). You know that Vidaza is supposed to be the best treatment for most patients with a little more than 50% responders.

ATG
24% of the patients responded to ATG. 48% of patients responded to ATG plus cyclosporine. Immunosuppressive treatment produced significant improvement in the pancytopenia (low counts in all cell lines) of a substantial proportion of patients with MDS and was associated with improved overall and progression-free survival, especially in younger individuals with lower-risk disease.
http://www.ncbi.nlm.nih.gov/pubmed/18413642?ordinalpos=6&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

Revlimid
A clinical trial evaluating lenalidomide therapy for transfusion-dependent individuals who had low- or intermediate-1–risk MDS but did not have the chromosome 5 abnormality showed a 43% overall rate of improvement with the lenalidomide treatment.
http://rarediseases.about.com/b/2008/02/21/lenalidomide-reduces-need-for-transfusions-in-some-mds-patients.htm.
Kind regards
Birgitta-A