Revlimid dosing schedule?

[plantcollector]

Has anyone taken Revlimid on a schedule other than one per day, every day? I am referring to the use of Revlimid for MDS. I thought I had read that some patients had a dosing schedule of three weeks on and then a week off. But I am not sure where I saw this. It could have been for something other than MDS. I am 5q-. I am starting to think there may be a withdrawl factor with me. I have seen no results while taking the drug. I finally stopped taking it on November 18th. Now my HGB seems to have gone up somewhat. Have no idea what is going on. My hematologist is going to contact the pharmaceutical people about this. He really doesn’t know either what is going on. Will continue to monitor the counts on a weekly basis to see what the numbers are next week. If the HGB is low then we can rule this out. Any response is appreciated.

[sgoodman]

I am 28 days on and 7 days off and understand that this is common.

[plantcollector]

Thank you, sgoodman, for your reply. I did not know if anyone had any other dosing (for MDS) other than 1 per day. Will find out with my next CBC whether going off of the drug for a short time has finally produced a response. My hematologist did have a long conversation with the pharamcuetical company. They came up with the idea to go with 5mg. 21 days and then 7 off. I am not sure why, but will know more later this Monday. Maybe the 5 mg. was recommended because of my side effects. If my HGB has dropped way down again then that is my last attempt with Revlimid. I sure thought it would be my "ace in the hole" because I am 5q- and no other chromosome abnormalities. I did not become transfusion dependent until 7 years after diagnosis. But I have been trying with Revlimid since almost the first of 2009. I am so lucky not to be suffering with this condition like others are. But not looking forward to moving on to a long-term Vidaza regimen unless it is positively necessary. Hope you are seeing good results with Revlimid. Thanks again for responding.

[sgoodman]

Forgot to say – I am on 10 mgs and it took 4 months to respond, so you may want to discuss whether a higher dosage would make sense?

[plantcollector]

sgoodman – do you have any idea what the reasoning is in taking 7 days off? My doctor wondered whether going off the drug for a short time had some sort of effect. Thanks.

[jimkufis]

Hello Plantcollector. Jim Kufis here. I have been on Revlimid (5mg/day) for 2.5 months and initially the side effects were very hard to deal with. I also was taking Exjade due to iron over load from PRC transfusions. The Exjade was very effective and I have now discontinued Exjade. To further reduce the side effects of Revlimid, I skip Revlimid every third day. This drug seems to be working fine as I am now transfusion independent and my hemaglobin level is above 11g/dL. With my current dosage of Revlimid the side effects are very tolerable. I tend not to be a very good patient as I frequently make my own decisions on drug use. I do keep my hematologist advised of my drug usage. For me, the one negative effect of Revlimid other than the usual side effects has been to increase my platelet count (>800)such that I now have primary thrombocythemia.

[plantcollector]

Thanks for the reply Jim. Glad to hear that you are having such good success with Revlimid. Sounds as if the reduced dosage is helping with the side effects. I have had several of those including blood clots in one leg. I keep hanging on with the drug hoping it will finally help. Stange to hear that your platelet count has gone up with Revlimid. Doctors do say that every case of MDS is different. I have had high platelets since 2001 (then at 1,800), but they have lowered to normal with Revlimid. I took another drug for many years to reduce platelet count. Hope Revlimid keeps working for you for a long time. It has for many people.

[Kenneth_In_Va]

I just posted a link on the Revlimid thread to an abstract from the December 2009 American Society of Hematology meeting last month that discusses an altererative dosing schedule based on 10 mg. every other day. The sample was small but the results look great, especially the part about cutting the costs in half!

Kenneth in Virginia

[rln]

if you go to the revlimid website and enter the physicians area you’ll find the results of the study which shows dosing number of days and reasons to discontinue temporarily.

[Author]

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