Myelodysplasia Support Group

never heard of it. what is it exactly?
Betsy.

Revlimid is a derivative of Thalidomide that has ben found to help people with MDS 5q- variant and some people with Multiple Myloma.

I copied this from the web page by the manufacturer.


REVLIMID® is a medicine for people with a condition called del 5q MDS and who require red blood cell transfusions to manage anemia (low red blood cell counts).
REVLIMID® (lenalidomide) is an oral medicine that helps control the way the body fights disease. REVLIMID fights abnormal cells in the bone marrow and allows normal cells to perform their functions. The active ingredient in REVLIMID® is called lenalidomide (le-na-lid-oh-mide).

revlimid.com/myelodysplastic-syndromes/myelodysplastic-syndromes-revlimid.aspx" title="http://www.revlimid.com/myelodysplastic-syndromes/myelodysplastic-syndromes-revlimid.aspx" target="_blank"> http://www.revlimid.com/myelodyspl...

have they checked your husband's copper level and cerilluplasm????

I was getting shots of aronesp every two weeks to try to boost my red blood cell production and ultimately, bring up my platelets - didn't do a thing. found out i had a severe copper deficiency. received copper infusion and brought up all my numbers.

He was tested thoroughly before they arrived at his diagnosis. He had 3 causes for his anemia and iron loss. He was bleeding from his intestinal tract and he has renal insufficiency in addition to the MDS 5q- which is one of the markers of MDS. I will ask about copper as he could have lost that along with the iron with the slow blood loss over time.

I have no idea what cerilluplasm is. Could you explain.
Also I found this about how Revlimid works.

Revlimid® (lenalidomide): Works by
stimulating the immune system, inhibiting new
blood vessel growth, and causing cell death. It
is categorized as an immuno-modulatory
agent and is administered orally (by mouth).

PLEASE push for the copper test and cerilluplasm which is a protein / enzyme that carries the 85% copper through the body. You state that there has been severe blood loss through bleeds in the intestine. Copper deficiency has a know cause through intestinal injury / bypass surgery, impared intestines, injury, etc. - Please have this tested. and go out to the internet and search on MD and copper deficiency PLEASE!!!!

Hi Betsy, I started using Revlimid in Dec 07 - it took four months for it to work, but now my blood counts are almost st the normal range!
Be patient, hopfully you husband will have good results!
Mike

Mike, My husband is now on his 3rd month of Revlimd. All his counts dropped and the platelets have come back and the white cells were up last week. His hemoglobin is still around 8.7.

When did your red cell count start to go up? He is on 5 mg every other day. What is your dosage. Julie

Hi JulieBon, I also have MDS 5q-. I was diagnosed in June 2003, and began taking Revlimid in their Phase II Clinical Trial in January 2004. I am now a 5 year survivor. In the first few months of 25 mg/day, my white blood cell count and platelet count dropped significantly, but not enough to make me drop out of the trial. I believe there are now additional medications that help to elevate the WBC and platelets so that a patient can stay on the Revlimid. My hemoglobin counts were back in normal range within 5 months or so, and I have not needed any more transfusions. As part of the clinical trial, we did bone marrow aspirations at 6 month intervals. Within a year, no more 5q deletions were visible in the marrow, but the marrow was still compromised. By now the marrow is almost back to normal, and I have backed down to 5 mg every other day. I still experience fatigue, but I have some other things going on as well that cause much of the fatigue - hard to separate out the causes.

I was lucky, as it does not work as well for everyone. But I do have a friend who was in the Phase I clinical trial who is now a 7 year survivor and is still transfusion free.

From the date of your post, your husband has probably been on med for 6 months now. I hope he is seeing great success and is feeling much better.
Anne

Hi JulieBon,
When I just sent you a message, I hadn't read the rest of your posts. It sounds like your husband has much more going on than just MDS, so I apologize if my post was inappropriate. My heart is with you and your husband - I wish you the best.

My daughter and I decided, after I got sick, that no matter what, we would find joy in every day, and we have done that. I wish you and your husband joy in each and every day!
Anne