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Revlimid in non 5q patients

This topic has 5 replies, 1 voice, and was last updated 13 years, 6 months ago by franb rars dx 12/06 age 57.

Viewing 6 posts - 1 through 6 (of 6 total)

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February 23, 2010 at 10:33 pm #22582

franb rars dx 12/06 age 57
Participant

I was dx in 06, RARS, no chromosome problems. Recently started transfusions (4 since Sept. Aranesp and Neulasta didn’t do much.) Considering a clinical trial for treatment with Revlimid. Has anyone with non 5q had any experience with Revlimid? Would appreciate hearing from you. Thanks and wishes for good health!

February 26, 2010 at 3:38 am #22589

Kirby
Member

I’m a non 5q patient and responded to Revlimid for 18 months. I had responded well to thalidomide prior to switching to Revlimid.
I think the % of non 5q responders is like many other drugs on the order of 25-30%.

February 26, 2010 at 12:13 pm #22590

franb rars dx 12/06 age 57
Participant

Thanks for taking the time to respond Kirby, appreciate your feed back, good health to you!

February 26, 2010 at 4:06 pm #22591

jimkufis
Member

Hello Fran, Jim Kufis here. I have had RA MDS for at least 3 years and do not have the 5q- condition. I have an abnormal karyotype of chromosome 3. I tried Aranesp and Nuelasta for 6+ months with only minor help. Last year I was transfusion (tx) dependent and in October of last year I stopped the Aranesp and Nuelasta and began taking 5mg of Revlimid (lenalidomide) daily. Within two months my hemoglobin increased from 7 g/dL to above 11 g/dL and I have been tx independent since then. This bone marrow disease is very complex and these drugs have varying results dependent on the patient. As you may have read, the drugs may stop working after a period of time due either to our immune system counteracting the drug or the MDS progressing to another stage. Revlimid does not cure our MDS it is only supportive in over coming the symptoms of MDS.The only potential cure for MDS is a "bone marrow" transplant and at my age of 70 this is not a good option.

February 27, 2010 at 2:13 pm #22592

franb rars dx 12/06 age 57
Participant

Thanks for your reply Jim, I am starting the Revlimid in 2 weeks, will let you know how things go. Appreciate your taking the time to respond!

October 23, 2010 at 1:15 pm #22966

franb rars dx 12/06 age 57
Participant

The Revlimid worked for 145 days no TF, then stopped about 2 months ago, since that time I’ve had to have TF’s every three weeks. Dr. doesn’t think Revlimid is responsible for this, he thinks my MDS is progressing. He wants me to start back on the Revlimid, 25 mg to see if it works again. I am a little reluctant but told him I would give it a try as long as I get CBC every week.

When I need a TF, the back of my head feels funny and I feel like I have a stiff neck that extends up into my skull, does anyone else get this feeling? I goes away after the TF.
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