Starting Revlimid…

[sugarwhale]

Dear Forum Friends,
Two weeks ago my mom started taking 5 mg. of Revlimid per day. Our fine doctor thinks she’s doing wonderfully and has raised the dosage to 10 mg. So far her platelets and WBC are fine. However, her RBC and Hgb suddenly plunged! She’ll get another two units of packed red cells in a couple of days. Our doctor says that Revlimid takes 3 MONTHS to really work. We understand that.
I would like to know about how long it takes before the RBC and Hgb quit plunging precipitously? Is this problem worse during the first two weeks? Is it worse with 10 mg. than with 5 mg.? As time progresses toward the 3 months, will my mom need fewer transfusions? Are the first two weeks the worst for other symptoms, too (e.g. itching, depression)?
Perhaps some of you who have taken the Revlimid can enlighten us. It would help my mom so much if I could share some of YOUR input with her. Thanks so much!
~~~ Janet

[Laural]

Hi Janet,
My experience with Revlimid was good once I got past the first 3 weeks. My counts dropped at the other end with my platelets and white cells bottoming out after 3 months. But it did work to get me transfusion free for 9 months even after stopping the drug. I had very few side effects otherwise. Hang in there.
Laura

[Carl]

Janet,

I am on 10 mg of Revlimid and the Oncologist asked me to discontinue taking it after a month because my counts (RBC-WBC-Platelets) got so low. I experienced many of the side effects that are associated with the drug. I too have had several transfusions of packed red blood cells.

I still plan to keep on trying the Revlimid and pray that it will work for me.

Good Luck to your Mother.

[CathyW]

I have been on Revlimid since January 21. I started out with a 25 mg dose. It was dropped to 10 mg after a couple of weeks and then again to 5 mg because my WBC was dropping. However this past week my platelets (which were once as low as 30) jumped from 55 to 98 so it appears to be working for me. I do not notice any side effects when I am taking this drug.

I was just diagnosed in December with Refractory Anemia wth multi-lineage dysplaysia. I am 55 years old.

[Naomi]

Janet:
When I first took revlimid (11/11/03), I took 10mg for 2 weeks, had hives from head to foot, so it was discontinued. Had 4 more txs until my counts got up to the level to start it again on 12/16/03. Then took 5 mg. WBC,RBC and platelets all went down and have stayed down, but HBG and HCT are above the bottom of normal. My last tx was 12/8/03. My platelets stay around 90 – 100. My WBC is 1.3 – 2.0 and RBC is 3.2 – 3.8. Revlimid was raised to 10mg because the 5q- reared it’s ugly head and have stayed there. The 5q- is once again gone.
I was on the trial for 24 cycles (4 weeks each) and am still keeping track for the drug co. The side effects are not unliveable for me. The main one I have is diarrhea and it is controled with immodium as needed.
Hope this all helps. Any questions, just ask.
Naomi

[sugarwhale]

Dear Laura, Carl, Cathy and Naomi,
I shared your experiences with my mom, and I want all of you to know that you made her feel much better. We’re hoping that what she went through this week might be the worst of the side effects. To our doctor’s credit, he is monitoring her carefully; we feel…secure.
Thank you so much for the reassuring things you told us.
~~~ Janet

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