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    For the past 2+ years I have had RA MDS and I have had 10 two unit PRBC transfusions. I have tried Aranesp and Neulasta injections with little success. My hemoglobin level varied from a high of 9.0 g/dL after a transfusion to 6.5 g/dL. Last month the injections were stopped and I began taking 5mg of Revlimid daily. After one month my hemoglobin has increased to 9.9 g/dL. Revlimid is truly a wonder drug when it works. My abnormal karyotype is chromosome 3 has had a transition of the long (q) legs and this is not related to the 5q- abnormal karyotype.


    Hi Jim:

    Wow! What results. I attended a seminar by a local oncology group in Fayetteville, Arkansas regarding the latest in drug treatments. They stated that Revlimid was the "Big Dog" among the MDS treatments, but I believe the FDA approved it for 5q- only. Any 3q abnormality places you in an Intermediate-1 WHO classification (see my MDS site at I’m very interested in following your progress. I hope you will continue to update this thread.




    Hi Carson. I have visited your web site before and it is a nice presentation. Based on the prognosis on your web site for an abnormal 3q karyotype I should have already been out of here. So much for prognosis. This last month I have experienced substantial changes. Not only has my Hb increased with Revlimid to 9.9 from 7.5 but I also started using 1500mg/day of Exjade and my Ferritin dropped from 2800 to 711. I have reduced the Exjade dosage to 500mg/day. I will keep you posted on future results.

    How is your experience with Vidaza?


    Hi Carson and Jim. I am also new to this forum, having just received my dx 2 mos ago. My Oncologist wants to be agressive with my Tx. I had 2 RBC trfxs last month and fell good. Started Revlimid 10 mg/day 4 days ago. Enjoyed your website, Carson! My dx is very close to yours I believe but I am confused as to whether my 5q- plus t(2,12) puts me in the RA group or another.

    Hope to hear from all and wish all good cheer.


    Hello Kenneth. Jim Here. From what I have read Revlimid is quite successful for the 5q- condition. For many patience the missing long leg (q) of chromosome 5 reappears when using this drug and the anemia dissipates.

    I have an abnormal karyotype of chromosome 3 with a transition of the long legs. I have been on Revlimid for 6 weeks and have had positive results with my hemoglobin increasing from 7.5 to 11.0 g/dL. The downside of this drug for me is the side effects. I have gastrointestinal problems from blotting due to excess gas and occasionally diarrhea.


    Thanks for your quick response, Jim. That’s good news for me to hear on Thanksgiving day! I’m at work today, we had our turkey yesterday wink

    Good to hear of your hct gains. I, too, have GE issues (Strictures in my esophagus) so don’t need any more acid up there from nausea. I am taking 10 mg just before bedtime (midnight) and so far (for the 1st week) all has been good.

    I have my first CBC in 5 days since begining Revlimid so will be interested to see what changes show up if any.


    Wondered if anyone out there has ever had problems with fluid around the heart with the MDS/MPD. My husband recently got a viral infection around the heart and no one seems to be able to tell us if it is related to the MDS. He has been on a clinic trial for almost a year now, but the last two months because of the pericardities he has not been able to take the chemo. His WBC are still high and of course the RBC are low. Just need to find out if anyone else has had these kind of problems Also is there really a prognosis for this disease.


    So far I’ve been on Revlimid for a little over 2 months and it hasn’t helped yet with my low hemoglobin. I was diagnosed with 5q-. How long should it take to make a difference? I take 10mg once a day.



    Hey Mike,

    My Oncologist, as well as Diplomat Pharmacies, tell me it should take about 4 months before there is enough build up in the system for changes to be very noticeable. I am on the same dosage you are on but have only been on it for 2 weeks. Are you getting CBC’s on a weekly basis like I am?
    My last CBC showed a little drop in platelets but WBC stayed about the same. (I’m sure it’s too soon for me).
    Are you currently transfusion dependent?

    Best wishes to you and your family.



    Kenneth, thanks for the reply. My counts have been lo but not dangerous yet. I have to get a transfusion about every 6 weeks. Hopefully the Revilmid will kick in and help out.

    Have a great Christmas and good luck to you.


    The Celgene web site – says "90% of patients who responded to Revlimid did so by the end of 3 months". This quote must refer to a clinical study. Unfortunately not all of 5q- patients respond. Hope it works for you.


    Can the survey be taken on line to get your meds renewed every 28 days? If so, anybody got a link?



    The survey info may be found at:

    A brief telecon will suffice, but the site may direct you to an
    online link.


    Thanks, looks like you have to do it by phone like I’ve been doing.


    Thanks for the good wishes.

    I just finished my first month on Revlimid and the only change so far is that my WBC count just dropped .2 putting me into the "low white blood cell group" for the first time I know of. I can also tell my nymph node are just a bit enlarged and tender under my armpits (not meaning to be crude). Guess the WBC drop is a slight indication that something is occurring. I go in on Xmas Eve for another CBC. It’s been since the 7th since the last one and had a 2 unit RBC TXF at that time as well. Thaat’s my 5th and 6th unit total. I feel pretty good. Can climb stairs with no calf burn.

    Day by day. Carpe deim as they say.

    Season’s good wishes to my fellow travelers.

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