My Dad and Revlimid

[VIOLA]

My Dad is going to start taking 5mg of Revlimid next week. I read many posts about the side effects, mainly about dropped counts (WBC, PLT, RBC). My Dad was on Thalidomide for 3 month, had very low WBC and ANC. In this connection he suffered because of infections. Did someone of You (who is on Revlimid) have any problems with infections? How long it takes before HGB and RBC jump? (if they will jump?) We are so happy that Dad can try treatment with Revlimid but we are also affraid about the consequences of so low counts.
Good luck to all of You and thank You!

[Carl]

Viola,

I was on Thalidomide for a longer period than your Dad but it quit working for me. I started having to get PRBC transfusions at least every two weeks to keep my red cell count up. I had Neupogen shots to raise my white cell count.

The Dr. has now started me back on 5 mg of Revlimid and I am still on the Neupogen. I had a nasal infection and a skin infection in my neck area while my WBC counts were so low during my 10 mg Revlimid dosage. I was put on high powered antibiotics for a couple of weeks and the infections resolved. I am pretty careful with washing my hands and not getting into crowds when my WBC counts are low and I regularly use one of the 99.9% “germ” killer alcohol hand washes (availabe at many stores)after going out to the pharmacy, store and clinic.

Everyone is different and your Dad may respond sooner or later than others with his RBC-WBC-Platelet count either going down or back up. Don’t get frustrated and by all means discuss EVERYTHING that is a symptom with your Dr. while first taking Revilmid.

[Brenda P]

My dad saw a rise in blood counts after a month on Revlimid 10 mg. But now due to side effects he had to cut it to 5 mg. Also he tore a muscle and then got an infection (not sure if the infection was from the hospital or if it was developed before he was admitted).

[VIOLA]

Dear Carl and Brenda!
Thank You for Your email. It is very helpful to us. Tomorrow Dad will start Revlimid. We expect a problems, but I beleive that this drug will help my Dad! Best wishes to You!

[PhyllisA]

Viola,
I was in the clinical trial reserch @ M D Andersons in Houston TX and started the revlimid 9/11/03 thru 11/25/04 and had been getting TX’s every 3 wks prior than was dropped from the trial because I had a blood clot in my lung and later had to have a TX after going 52 wks without one had some side effects but nothing I couldn’t deal with going to be going on vidaza soon as procrit and nupogen didn’t help and so back to getting TX’s every 3 wks
GOOD LUCK & BEST of HEALTH to your Dad

Ron from Michigan

[Lydia]

Ron from Michigan – where do live and are you seeing a doctor in Michigan as well as Houston? Just wondering as mom lives in Michigan also.

Assume you were tx free during Revlimid treatment. Wonderful – even if temporary. Mom was on Procrit for awhile and was tx free then that stopped working also. Back to tx’s also.

Sorry to hear about the clot and taking you off Revlimid. Do they think the Revlimid caused it? Sure hope the vidaza helps you ! Sure it will !

What were YOUR side effects with Revlimid. Mom is going on it soon – am keeping up-to-date with everyone’s symptoms. Will keep posting with her experiences with it also.

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