Revlimid (5Q)

[Dot M]

My husband(TOM) diagnosed 3/98 with mds 5q. Began taking procrit/neupogen 2003. Procrit seems to have stopped working several months ago and began transfusions. Have had 5 transfusions (total of 12 units packed red blood cells). Started revlimid 5/9/08. Hemoglobin was 6.2 before last transfusion Yesterday. Concerned about low count. Would like to hear from anyone who has had revlimid experience????How long until it worked? Does person taking have 5q? Also beginning to have various cardiac problems, such as irregular heart beat?

[Jo L.]

Dot –
Have you tried the ‘search’ function of this website? Look at the top of this page and click on it – you’ll find many threads to read. I used it when my husband was going to start Dacogen. It is often helpful to read other peoples experiences. Even though our DX are often very different, and not everyone has the same responses to the treatments, it makes the journey less frightening when you can talk to people on the same road.

Good luck to you and Tom.

Jo

[Frankie]

Hi Dot…
I am also 5q and took Revlimid. It was a miracle drug for me.
I had been transfusion dependent for years…..every other week.
I went without transfusions for over a year with Revlimid.

I feel good and my numbers are still up.

-Frankie

[plantcollector]

Frankie,
Are you still taking Revlimid? I am wondering that it would be necessary to take it forever if it worked. Did it eliminate the 5q- ? I am asking these questions because I will probably start taking that drug this summer. Did you have elevated platelets with your 5q- ? Fibrosis? Hope you don’t mind me asking you all these questions. I am trying to find someone who has a similar condition that I have. Thanks for any reply. Sylvia

[Frankie]

Hi Sylvia…..
I was on Revlimid for about a year. BTW…..I am MDS-RARS with -5q.
I’m not sure but I think one year is the max. When I started Revlimid, my counts were low, including platelets.

I remember being shocked when my labs came back. Red cells, platelets and white cells started to climb. I had blood drawn every 2 weeks to start and then evry 4 weeks.
My body started making its own blood.
My hematologist was so happy.

-Frankie

[Kirby]

HI All,

I’ve been on Revlimid for 18 months, still working good. One patient at last years AA/MDS conf in Las Vegas had been on Revlimid for 5 years. I think one in AZ has been on it longer.
With some patients it seems to stop working after a year or two, all patients seem to respond differently to any MDS drugs.

I think once you are on a medicine you will need it as long as it will work for you.

Many MDS patient that are -5q will have the chromosome abnormality go away for a while. If the Revlimid stops working the -5q may come back.

[plantcollector]

Thanks for the input, Kirby. Glad to hear that Revlimid is working for you and that side effects have not been a problem. I have not been looking forward to taking this drug, but will start this summer. I am sure you are right about people responding differently to any of the drugs. Also, MDS is a complex condition, and it seems that no two people are alike in blasts, chromosome abnormalities, etc. So it is hard to find someone who has the exact condition that you have. I will check further on the forum to see what other people have said about their experiences with the drug. Thanks again.

[Dot M]

Thanks to all who replied. So good to know that others have been helped by Revlimid. I am using search function now also. Keep us posted on your progess. Dot/Tom

[Birgit]

My mom was in the second phase of the original trial for Revlimid. For her is was a miracle drug, she even testified before the FDA to get the drug passed. She had been transfusion dependent for a about a year when she started it. She was 5q- and while on the Revlimid her counts were almost normal and the chromosome abnormality disappeared. She was in remission for almost three and a half years. A year ago her counts began to drop and the 5q- returned. We are thankful for those 3 1/2 years where she was able to lead a relatively normal life as opposed to the weekly transfusions she endures now. I hope that it is successful for Tom.
Birgit

[Dot M]

Birgit,
We are thankful to your mother and others who were on the trials and helped to get revlimid approved. Our prayers are with her now. Tommy got on revlimid on Feb 28. How long before the revlimid started to work? How low did your mothers hg get? After two tansfusions(3 units each)2 weeks apart Tommy’s hg is 6.4. Doctor seems puzzled? We are also undergoing lot’s of cardiac tests. We go back on June4 for cbc. We go every 2 weeks but wonder if it shouldn’t be weekly.Will finish 1st 28 days of revlimid on June5. No real side effects yet. Thanks for writing.

Dot

———————————————–
husband dx w/MDS 5q- (98),started Procrit and Neupogen weekly in 03,up to 60,000 units Procrit weekly & Neuogen twice weekly,Revlimid daily (5/09/08)10mg,tx dependent since Feb 08, hg 6.4

[Julia J]

My husband started Revlimid April 12 this year. His counts went down and he needed a transfusion, his platelets went down to 25 and they stopped the Revlimid for a week then he was put on 5 mg every other day. His platelets have come back up to 160. He is still on Procrit and hemoglobin holding at about 8.6 for the past several weeks. The Doctor tells us we will know after 16 weeks if the Revlimid is working and that it is common to adjust the dosage to what works the best. He also tells us that the expectation is that if it works that he will stay on Revlimid. Our Doctor is one of the original researchers of Revlimid and has lot of experience with it.
We attended a Patient Forum in May sponsored by the MDS Foundation and met several other patients who had positive experiences with Revlimid which encouraged my husband to keep going.

[Dot M]

Julia,

Thanks for writing. Really hope the Revlimid works for your husband, Dick. Tommy got another transfusion yesterday of 3 units and a bone marrow biopsy. Hg down to 6.3, wbc .92, platelets at 27. Stopped Revlimid until next Wednesday and new cbc. How old is Dick and when was he diagnosed with MDS. Had he been on Procrit very long. Wondering if anone else has been on Revlimid, Procrit, and Neupogen together?? Has anyone taken procrit and neupogen for 6 yrs and the results? Guess all we can do is hope, pray and give each other support!! Thanks again for sharing.

Dot

[Dot M]

To Everyone:

What a difference a month makes!! Tommy’s counts now are hgb 13.3, wbc 5.6, plts. 135. We are so happy and so surprised. We assume that the Revlimid is working. Took 10mg Revlimid for 1 month, off for two weeks, took 5mg Revlimid for 3 weeks. now off for one week. Doctor also very happy about change.He is also off the Procrit for at least 2 weeks. He says he feels like he has gotten a last minute reprieve.

[poppyshope]

Good for you guys this is great news for you enjoy this success!!!! Prayers to you, Jen

[Birgit]

Dot,
Stay positive and remember to take every day one step at a time. Revlimid will make a huge difference in Tommy’s quality of life. Make sure that you both live it to the fullest.

[Author]

Posts