Revlimid
 

After 8 rounds of Vidaza, will start Revlimid along with Prednisone and an antibiotic . I am worried about the side effects of Revlimid. I had very little problem with Vidaza, but evidently it quit working. I am a 72 year old Female diagnosed last Dec with Intermediate Risk 2. Thanks

Revlimid
 

Hi Vicki,
Hopefully you won't have any adverse reactions when you take Revlimid. Prednisone will eventually decrease adverse effects from the bonemarrow like low counts initially. What dose will you be taking?

Here is a list of adverse reactions in MDS patients:
Low platelets 62%
Low neutrophils (a kind of wbc) 59%
Diarrhea 49%
Itching 42%
Rash 36%
Fatigue 31%
Constipation 24%
Nausea 24%

Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006. Started Thalidomide (similar to Revlimid) 50 mg/day + Prednisone June 2010 but could not tolerate more than 4 caps Thalidomide á 50 mg/week due to low WBC. Still responding after 27 months but HGB and platelets are slowly decreasing.

Dear Vicky,
are you 5q-, since you start a Revlimid therapy?

I also tried Revlimid (in a trial, because I am not 5q- and Revlimid for non-5q- has not yet been approved in Germany).

Unfortunately my doc stopped me after 6 weeks. My leukocytes had dropped under 1, so I was expected to have serious infections. After breaking up with Revlimid my wbc took 8 months to normalize. And I was very lucky not to have any inflammation or sth.

Beside the decrease of the whites I did not have any of the side-effects on the Revlimid leaflet.

Don't be afraid, the doctors will take care of you and look after your counts very thoroughly. Try it, it will probably help you for a while.

Bergit

I am taking 5 mg of Revlimid for 21 days. Then doc will up it to 10 and lower Prednisone ( now 30 mg daily) by half. Thanks for the posts.

Revlimid
 

Hi Vicki,
Prednisone dose is often 30mg/day initially - then it is tapered due to adverse long term effects. I asked my doctor if I could continue with 5mg/day because that drug can increase HGB together with Revlimid or Thalidomide in patients with other bone marrow cancers like Myelofibrosis and Myeloma.

Hope you will have a good response to Revlimid!
Kind regards
Birgitta-A

Had to have a blood transfusion Fri. Hemoglobin down to 8. I still don't feel well- shortness of breath, exhaustion. Hope to feel better soon. Have tolerated the Revlimid well otherwise. Last one today, then a week off.

Revlimid
 

Hi Vicki,
Very good that you tolerated Revlimid ;)! Now we hope that you will respond so your HGB will start to increase.
Kind regards
Birgitta-A

Since I last wrote, I have had two more blood transfusions and 3 platelet transfusions. The doctor took me off Revlamid last Fri. I see him again next week, but wonder what's next. I don't feel much better even after the transfusions. I am feeling rather discouraged. If Vidaza and Revlamid don't work, then what?

Vicki,

I'm sorry you are still transfusion dependent and had to go off Revlimid. Did the doctor say if you're giving up on Revlimid or just interrupting its schedule?

Another drug often considered is decitabine (trade name Dacogen), which some patients respond to.

Vicki,

In addition to Dacogen, which Neil references, there are a couple of drugs that are both in clinical trials, but are showing pretty good results for MDS patients where Vidaza has been discontinued. The first one is Sapacitabine, and the other is Rigosertib (trade name Estybon). I believe both of these are in phase III trials currently.

There are several other drug options that people on this forum are trying.
You may want to discuss all options with your doctor to see if any of these paths are right for your situation.

The doctor didn't say if I would go back on Revlamid. I'm sure he'll tell me next Wed. Thanks for the names of the other drugs.

Hi Vicki,
I had some similar issues with the Revlimid. It started out poorly with my body not liking the drug. After some tweeking to the dosage and adding some Prednisone, my body tolerated it for about a year and was in remission. We lowered the dose, due to side effects and once we did I was out of showing dysplastic cells again. I have started it again on a higher dosage 5 months ago, and am waiting on BM Biopsy results. Just thought I would share my Revlimid story with you. Take care.