MDS, 5q deletion

[Viv]

Hello, my name is Viv and I will give you my history of my disease. I have MDS , with 5q deletion. Had a bone marrow biopsy in May, 2006. The doctor started me on Aranesp shots every other week for several weeks and they were not succesful. Also have had 13 blood transfusions and now the doctor wants me to start on a pill called Revlimid 10mg. Since it is very expensive, I am trying to get finanical assistance. I am on Medicare D for prescriptions.I am 68 . Anyone on Revlimid , I would love to hear from you and compare notes. Not on anything except transfusions every 3 to 4 weeks.

[Cathy]

Hi Viv,
I have been on Revlimid since January. My counts went down the first 4 to 6 weeks and then started climbing. All my counts were in the normal range until recently. My platelets have come down but seem to have stabilized in the 80s. I feel great -- no real problems with this drug.

[Viv]

hi cathy, thank you for your message on revlimid. How did you afford it? I was told the price from Celgene was $6000.00 for a 28 day supply. Hopkins in Balto. is trying to get me assistance.
they say problem is that this all started in Jan. when the Medicare D presciption plan started. I'm glad it's working for you. Any reactions like rash,itching,clots,etc.? Keep in touch.viv

[Cathy]

Viv,
I have private insurance -- I am 55 years old. So fortunately it picks up the total cost, which for me runs around $950 / month. I take a 5 mg pill for 21 days and then I take nothing for 7 days and then I start over again. Initially I was on a 25 mg dose, but after about 2 weeks it was reduced to 10 mg and later, it was reduced to the 5 mg dose that I am currently on. I also take one baby asprin a day to counter act the possibility of clots. I really don't have any side effects from this drug. It did boost all my counts. I hope it will continue to work for me. I have refractory cytopenia with multilineage dysplasia. I was diagnosed last December.

[seniorrico]

I don't have the 5q deletion but Dr. Raza at UMass recomended I try Revilmid. My local Dr has no experience with this drug but is going on Dr Raza's recomendation. My counts will be monitored weekly.

[seniorrico]

Cathy what were your blood counts before and after starting Revlimid? Also did you have the 5q deletion?

[Cathy]

Seniorricco,
I do not have the 5q deletion. My counts the week before I started Revlimid were:
Platelets 39
HCT 30
HGB 10
WBC 1.9
RBC 3.08
My latest counts were:
Platelets 84
HCT 38.9
HGB 12.8
WBC 3.14
RBC 4.41
At one point my platelets were up to 148 with Revlimid, but they have been slowly going down. They seem to have stabilized in the 80s. This last reading showed all of my counts dropping a little. Hopefully this will not continue. I think I saw somewhere that about 20 to 27% of patients without the 5q deletion respond favorably to Revlimid. Hope it will work for you too. Good luck!

[seniorrico]

Cathy,
Thanks for replying. During your treatment how low did your white count go? Also, when did you start on Revlimid and when did you achieve results. What was your dose level? was it ever changed? Are you on a maintenance dose now? How did you feel when you started on it? Sounds like Revlimid works for you. I hope I am one of the 20-27%.
Warren

[seniorrico]

Did the Dr. ever try growth factors on you Procrit, Aranaceps?
Warren

[Cathy]

Seniorricco,
I started Revlimid on Jan 21. At this time my ANC was at or below .5 and that was a concern -- I was told to go to the hospital if I started to run a fever which I did about a week later. I went to my local hospital and was treated by the ER staff there who called my hematologist/onocologist. I spent 15 hours in ER around all the sick people before they put a mask on me and wisked me off to a hermetically sealed room. I spent another 24 hours there receiving antibiotics through an IV. The hematologist the hospital assigned me did give me shots of some kind of growth factor. My counts improved enough to go home. Over the next couple of weeks my counts dropped as follows:
Platelets 30
HGB 9
HCT 27.4
RBC 2.78
The lowest recording for my whites was 1.7 although my ANC dropped to .2 at one time.
My original dose of 25 mg was reduced to 10 within 3 weeks and later to 5 mg. At one point it was discontinued a few days to allow the counts to recover. When it did start to work it was dramatic. My platelets jumped 50 points in one week. By March all of my counts were normal. My platelets were 148! Revlimid has stopped the progression of the MDS for me. It was the first treatment I tried. It came out just about the time that I was diagnosed.

[seniorrico]

Cathy,
While you were on the Revlimid did you have to have transfusions? Where you having transfusions before Revelimid? Are you off the transfusions now. Growth factors before and after?
Thanks for writing. Ihave a cold now. Should I waite until I get rid of the cold before starting Revlimid?

[Cathy]

Seniorricco,
I have never had a transfusion or any other treatment for MDS. I think you should ask your doctor about your cold and see if she wants you to wait before starting the Revlimid. Good luck with it.