My dad, diagnosed with MDS/CMML, on Revlimid now

[2109]

Hi all, this is my first message in this forum. I’m so happy to have found this website as I now feel somewhat less lonely in this journey. This disease is surely complicated with so factors to grasp with. And it does not help when his primary hematologist is a man of a few words and gets annoyed when we ask him too many questions. Anyway, I have one specific question I’d like to ask for now. It is about a medication called Revlimid. My dad’s doctor just started him on this medication, which has been used to treat MDS but not CMML). Could anyone who has been on it or know of it please tell me real life experience with this medication please?

My siblings and I are very concerned and scared of every action taken on our dad but any information will help us tremendously to cope better.

Thank you very much for your time and best wishes to everyone in this forum.
Jill

[MSB]

Hi Jill,
Can only relate to you my own experience. Was dx with CMML May 2009. Have been on Vidaza & tried Dacogen since then. I asked about Revlimid and other possible drugs; was told only Vidaza or Dacogen were approved. From what I can gather, Revlimid is for some other kind of MDS.
CMML apparently is part MDS and part MPD. There are 7 or 8 different types of MDS.
I wouldn’t hesitate to get a different hematologist. One needs to feel confident in the doctor and the care provided.
Wishing you and your dad the best. I know it can be hard to do, but keep your spirits up. A strong positive attitude is extremely important.

[minislimkjk23]

Hello Jill,

My father was prescribed Revlimid. My father has 5q syndrome. My father’s has since stopped taking the medication because his platelet count was two. This is one of the common side effects of the medication. Please let me know if your father has started taking the medication and what symptoms he has had as a result.

[CATONE]

Hi -I like to start with my age which is 73. I have been on Revlimid going on 4 years.When I staten on Revlimid I was getting 2 transfusion every two weeks.This months doctors visit my HGB was 14.4 and my WCB was 2.8 my platelet count has never been a problem.Every 3 months my liver kidneys are checked.
I’ve been told by a very special doctor that as long as my blast are under 5 Revlimid will work. My blast were plus or minus 2 when I started. You must learn about blast? You should have a copy of you bone marrow test results. If well written it should
answer needed numbers. Revlimid doesn’t work for everyone.
It took 4 months before the numbers started go up.
This should give you hope. I met a women at an MDS forum in 2009 who said she was given 6 months to live and has been on Revlimid for 10 years.

[Mary4Mike]

Patrick,

I am not trying to discount what you are saying this doctor told you, however, I don’t want anyone to have false hope over this either. My husband had no blasts and Revlimid did nothing for him.

Every treatment has a different effect for every patient. I am happy that Revlimid is working for some. I wish it worked for everyone.

Mary

[rln]

i was taking revlimid 10mg dose for about 26 days and my platelet count went from 29 to 9 and later 2. i stopped taking the drug and will restart at 1/2 does once i have decent counts.

[Kenneth_In_Va]

Hey 2109,

As "Mary4Mike" said (I’ll paraphrase) the same treatment does work the same on everyone. There are many variations of both MDS and MPD. I also have the 5q variation and had mild MPD as well on my first biopsy. I have been on Revlimid since October of 2009 but did take a break from it between Dec of 2011 and March of this year because of lowered platlet counts and increased diaherea (sp?) level.

Since I am one of the "lucky" ones with 5q that Revlimid is usually prescribed for I will say it has helped me maintain a good quality of life. I still work 40 hours a week and get in a few sets of tennis once a week. My "by-line" has all my count and diagnostic info in it. I’m just riding this train as long as I can until things change.

Initially this condition can sure get your attention but don’t believe all the gloom and doom on the internet, The data there is as much as 10 years old and much progress is being made in this condition. Check out the MDS foundation newsletter and even the Facebook page.

Good Luck,

Kenneth in Virgiinia

[bobweinberg]

Jill, Revlimid has been effective with persons who have a 5q- chromosone abnormality. I do not have that abnormality, but I was on a revlimid trial for non-5q- pateints for 6 months in 2005. It had no benefit for me, but I have heard that it has been effective for others.

The first reaction was that my head began to itch terribly. I was told to use a certain shampoo for this, which helped. After a week or so the itching went away. I also suffered a severe drop in my platelets. My white blood cells dropped and I started to get boils. After three months, they took me off the drug for a month and then started it again. My blood counts never did rise while I was on the drug, so I was taken off after 6 months. You should ask to see the chromosome tests.

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