Revlimid

[Linda]

My Husband has just been prescribed Revlimid for the second time after all treatments have failed, he is transfusion dependent every 10 days, I will add that my husband recently had a Stroke and fortunately has very little residual and has had several blood clots he has an iVC filter in place and on the appropriate meds. I was wondering given the fact he recently had a stroke and blood clots are on the list of possible side effects why would Revlimid be offered again. We realize there is no other option he’s been on all the drugs for MDS with 5q del. Just throwing it out there to see if anyone has a similar situation. He is considering declining the medication in fear of another stroke. I might add he was transfusion free for over a year 2 years ago.
I appreciate any input.
Thank you

[Robin Smith]

https://www.mds-foundation.org/forums/search/procrit+side+effects/

Linda, Lee Warner describes her husband’s experience with Revlimid in this thread. I’m hoping you find it helpful.

I have no experience with Revlimid. I’m currently struggling with side effects due to Procrit (2 1/2 yrs duration and side effects seem to be increasing in severity while my hemoglobin appears to be trending downward). The above thread about Revlimid popped up in my search. Sending my very best wishes to your husband as he makes this difficult decision. Remember to take care of you too. This is hard.

[lisab]

Hi Linda
I’m a del5q patient on revlimid for almost 3 years. Doctor prescribed asa 81 for me as well to help prevent blood clots. There are a number of other drugs out there as well that are supposed to prevent blood clots. I’m sure something would be prescribed to him as well.
Best wishes

[Linda]

Thank you for the information we have declined the Revlimid my husband is a high risk candidate for this medication at this time because of his recent Stroke, he’s on all the preventive medication but it’s too risky for him. The first time he took this medication it was great he had a year and a half transfusion free, shortly after he got his first blood clot.
Thank you and Good Luck on your journey.

[Nancy Byham]

Husband just finished first round of revlimid- also gets weekly shot of procrit. first blood test – within 3
hours doctor is halting revlimid due to low counts. His hemoglobin hangs 6.5 to 8.5 . He’s on his 7 day med free so how bad is this? I’ve noticed his skin cancer has flared on his back. Is this indicative of progression? I can deal with it just need some honesty and no “ we’re extending your life” BS. There’s very aggressive cancer history with sister and paternal side.

[lisab]

Hi Nancy
I’m a del5q patient for almost 3 years. On lenalidimid (revlimid). After the first month my hemoglobin did drop some. My hematologist/oncologist said it sometimes happens. After a transfusion of 2 units and another month on revlimid my hemoglobin started to go up. It continues to remain stable.
Never was on procrits, so I can’t comment on that. I do know that revlimid can cause skin irritation. I do get a bit of rash myself. It wouldn’t surprise me if it would irritate a skin cancer.
Best wishes

[Nancy Byham]

Ok – doctor said ALL counts dropped significantly- changing to weekly blood tests to play with Revlimid dosage and schedule. May change 14 days on- 14 off, or 7off . Can’t eat raw veggies or fruit as immune system is now compromised. His white count has always remained strong until now.
His digestive system decided to swing to each extreme. He’s much more tired , did better week #2 on meds. Week 3 kicked him to the curb . But still got his procrit .
He’s 72. Doctor withholding transfusions as that is his only alternative after these meds.

[lisab]

Nancy
Did the doctor consider raising or lowering the dose?, I started on 10 MG of revlimid but my white count went up. He then reduced it to 5mg. I also take folic acid and b12 which are supposed to help energy.
I hope changing the frequency of his dose helps. The problem is we are all different. What works for me may not work for him. It is a tough journey to find what works.
Hope this helps.
Good luck

[Lucena Nicolas]

I was taking redvimid from March to September 2022. My red blood count was stable at 10.5. No major side affects, so I thought. In September I was told to stop taking it because my liver was being damaged. I cried a river because I know that I will need blood transfusion again and again. On Monday November 28 I will have a second biopsy to determine if am a candidate for a bmt

[Nancy Byham]

Update: husband only one month of revlimid- mega kicked him physically. So doctor stopped but continued prokrit for another month. Lo n behold , hemoglobin has risen to 11.8 from 7. And no prokrit no nothing just sublingual B12 . Doctor is only using drugs IF needed.
Praying you all have great Xmas news also!

[lisab]

Wow! That is terrific news Nancy! I’m so happy for you! Sounds like maybe you found the magic potion.
What a wonderful Christmas present for your family!
Best wishes and enjoy the holidays!

s the season.

[KAREN WITMER]

My gastroenterologist suggested the FODMAP diet for GI issues on Revlimid and it worked. He suggested the University of Michigan website and later I downloaded a free app. I wish my oncologist had known this so I didn’t have to suffer for months. My Revlimid is working well at 11 month in. I had a DVT about 5 months ago so I’m taking Eliquis.

[Lew Thomas]

I have low risk MDS with del20Q. I am in my 5th cycle of Revlimid. So far no success. I am still transfusion dependent. Started at 10mg 21 days on, 7 off but reduced to 5mg last two cycles due to concern over low anc and low platelets. I function ok when my HGB is above 7.5 but when it drops below 7 I’m pretty much useless.

I’ve read herein that other people on Revlimid have great HGB levels. I was told that it would take 2-4 cycles to see if the drug would be effective. I had pneumonia some weeks ago and my doc says that would extend that trial period a month or so.

If you are taking Revlimid successfully, how long did it take to become effective?

[lisab]

Hi Lew
Know how your feeling. It took me about 2 cycles for mine to climb. Been on it for almost 4 years and my hemoglobin still climbs every so often. I reached a new high this month of 143 (14.3 for Americans). Pneumonia I’m sure would be a set back. Have to keep a positive outlook and hang in there. Best wishes for a speedy recovery. Lisab

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