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mds 5q-: does revlimid stop working

Home forums Patient Message Board mds 5q-: does revlimid stop working

This topic contains 5 replies, has 6 voices, and was last updated by  Kathy Stermer 1 month, 3 weeks ago.

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    Jack Deutsch

    72 y/o male. MDS 5Q- diagnosed by bone marrow exam Nov 2018. On Revlimid 5 mg. Initial response was good. HGB peaked at 11.5. HGB started dropping again 2-3 months ago. Now at 10.5. Has anyone seen this? Does Revlimid stop working in less than a year?



    My Doc told me it does stop working but she said maybe 3 years. Everyone is different so it could be. How do you feel one this drug. She wants me to go on it but I feel the side effects don’t out weigh the benefits. Right now I am so tired .



    I was on Revlimid for 18 months before it stopped working. My hemo doc took me off of it and my numbers stabilized, even increased, afterwards. 4years later we tried again but it didn’t work and we stopped after 6 months. I’m now on Vidaza injections. I didn’t have a whole lot of side effects on Revlimid except that it caused DVT in my left leg.
    Has it stopped working for you?



    Jack : I can only tell you my story. I have been on Revlimid since 2006 or 13 years. This Dec. I start my 14Tth. year. I’ve had 3 BMB over the years my last one being in 2012 my blast at that time was 2. I am 81 and since 2006 I have led a normal life thanks to this drug. How will I know when it stops working? All of the numbers will go down. Do I increase the dosage? At that point a BMB will be needed and if the blast are 5 or under I can increase the dosage as high as needed. Blast come back over 5 I’ll have to think about what my next avenue will be. Do I come off it for some time and come back on it? It took 4 months for the drug to start working. If my doctor would have taken off it in the 3 month I might not be writing this. How many doctors take the patient of the drug before it gets to work? I hope this little bit of my story will be of some help and more then that give you some hope. Remember 70% of use will not come down with cancer.



    I am diagnosed with mds 5q- and will start revlimid next month. My hg and rbc were ok for first year but have dropped recently. I have an appointment in 3 weeks with the oncologist who has said starting the drug is my decision, so I am gathering information. One thing I noticed is that some people have immediate results and stop using revlimid while others continue until it doesn’t work for them. And I also noticed the cost, it appears that I with my medicare coverage will have about a $8,000 a month copay. So I need to investigate to get assistance with that. If you have any comments on revlimid “curing” your mds or on how to get the cost lowered I would appreciate it.
    thank you


    Kathy Stermer

    Liz, Revlimid will not “cure” by any means but many respond favorably. I unfortunately did not after a year and many dose adjustments. Your specialty pharmacy that would be supplying it should have a financial person to help with cost as there are foundations and also an organization called PAN – Patient Assistance Network that you can apply for help based on income which helped me with cost of drug. I also chose to take a daily low dose aspirin while on it as blood clots the biggest risk while taking it. Hope this helps.

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