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mds 5q-: does revlimid stop working

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

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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.

    Rich Andrews

    revlimid is probably not working that well for me, after almost 2 years. had to stop when a body-wide rash developed. then renewed, taking 5 mg every other day. boosted HMG to 10.5 a few months ago, but latest test is 9.2 and that ain’t good. taking 5mg 2 days on, 1 day off, to avoid rash. will see if that works. scared out of my wits. i have prostate cancer also. 73 yrs old, otherwise doing ok. no pain, can exercise, walk around supermarkets, self-sufficient but see hard times ahead. cancer sucks.

    Rich Andrews

    yes, was told 18 – 24 months maximum. HGB down to 9.2 – i guess vidaza injections are next. good luck.


    Hello everyone,
    I started taking Revlimid in 2004 when it was a clinical trial drug.
    The longest break I ever had was between 2006-2010 when I stopped to have children.
    Other than that, I have been on Revlimid daily except if I choose to take an occasional summer break from the medicine. I have found that it has worked for me over all of these years including when I resume taking the medicine.
    In response to someone’s question above, here is a Celgene website that mentions financial support for Revlimid and the patient support phone number. I hope they can help if you haven’t tried them yet:

    Learn about financial help

    Someone else mentioned about side effects:
    The side effects I have had are primarily: diarrhea, constipation, dry skin, fatigue, some other counts (such as white blood cell) are slightly suppressed for me while taking Revlimid but those have not presented me with issues.

    Best wishes to each one of you.
    -Stacey, 5q- MDS diagnosis, 5mg daily Revlimid capsule (no other added medicines or shots).


    Husband on 4th round Revlimid worked for first couple treatments 5 days of viidaza shots and 28 revlimid. last month his platelets tanked to 28 took him off for 2 weeks they went back up to 70. Started again Monday had blood work Thursday platelets back down to 38 he goes back Monday for more blood work not sure what MD will do if they keep dropping. He is eating well, can walk okay (had broken hip years ago) but his arms get really weak and can’t pull himself up even with walker. Will talk to MD Monday confuses with what is going on.

    Rich Andrews

    Hi Mary, for what it’s worth, I found a list of foods that may boost your hubby’s platelets. So far, mine are fine but my RBC is dropping.
    Good luck!


    Here’s my earlier post about platelets.

    For low platelets you might want to try organic dry papaya leaf. I buy 1 pound bags of organic leaves online from Starwest Botanicals, but there are other retailers. We buy paper tea bags and scoop a tablespoon of dry leaves in each bag and staple shut. Steep the papaya tea bag in hot water for 5-6 minutes. It may help. There is research showing that papaya can increase platelets. I have been drinking one cup per day for six years and my platelets have increased from where they were when I started. Give it a try — it certainly won’t hurt. I have read that two cups per day is completely safe. Good luck.

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