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Experience with & side effects of Revlimid?

Alan1027
Posts: 6
Joined: Jun 2016

Can anyone share with me their personal experience using Revlimid for Follicular Non Hodgkin Lymphoma.  I’m especially interested in the side effects. This is my third relapse in six years and my doctor says to only expect a 30-40% success rate and the side effects as he describes them are nasty. Going back to chemo and radiation is not an option. I am self employed with two businesses and my ability to get out and about and stay active is paramount to my happiness and well being. Thank you for sharing any personal experiences you have had using Revlimid.

po18guy's picture
po18guy
Posts: 1216
Joined: Nov 2011

That was one of the few drugs that I did not receive, but then again, I had a different lymphoma. As to follicular, there is a wide variance in opinion on when to treat versus watch and wait. The concern is that it will transform into Diffuse Large  B-Cell Lymphoma, which is an aggressive type. Have you been receiving Bendamustine + Rituxan? That has become the gold standard for knocking follicular back down. In many cases, it is a matter of simply doing another course of B+R and monitoring the response. If you received B+R, have you stopped responding to it? 

Alan1027
Posts: 6
Joined: Jun 2016

 

Thank you for your response. My treatments have been R-CHOP for the first regiment, a second regiment of R-CHOP after a PET showed continuing activity, Rituxan for maintenance, many many rounds of radiation, Trienda with Rituxan after the second relapse. I had very difficult side effects with all the chemo drugs.

 

Now with facing another relapse after only 9 months of remmission my hematologist is recommending Revlamid  with Rituxan. He gives it a 30%-40% success rating, the next step being a stem cell transplant.

 

Rocquie's picture
Rocquie
Posts: 857
Joined: Mar 2013

Hello Alan, I am also interested in Revlimid. (lenalidomide). I am experiencing a first recurrence of Follicular NHL and my doctor has suggested he may recommend it. For now, I am on watch and wait. 

I attend a hematological support group which has a few members with multiple myeloma who are on Revlimid. I have never heard any of them cite any terrible side effects. But it does seem that some serious tweaking needs to take place. One woman takes the drug 21 days and then off for 7. Another takes it for 7 and off for 21. ???  Dosages get adjusted. Any unused meds have to be sent back to the company--Celgene. 

It is highly regulated and controlled. Also expensive! Women of childbearing age have to use 2 forms of birth control. 

I'm sure you know that Revlimid is an analog of thalidomide. Those of us of a certain age remember thalidomide being shrouded in secrecy and and scandal in the 1950's and 1960's. Thousands of children were born with serious birth defects; many led to death. From a drug which was sold over the counter as a sleep aid and to prevent nausea. 

I am very skeptical of this drug. If I were taking it and holding my little granddaughter, would it affect her future reproductive system? 

If you do a search on the multiple myleoma board, here at this site, you will find some posts from people who take the drug.

I am not saying I won't take the drug. But if I were given low odds, I think I would request skipping on to SCT.

Blessings, hugs, and hope,

Rocquie

 

po18guy's picture
po18guy
Posts: 1216
Joined: Nov 2011

Many perople have a difficlt time with rituxan regarding allergic reactions. As to all other chemo drugs, the side effects are cumulative, as you know. It seems that doctor is making it sound rather dire at this point. If you are not being treated at a National Cancer Institute designated cancer center, I wholeheartedly suggest that you obtain a second opinion on both diagnosis and treatment at one of their comprehensive centers. A second opinion at one such center saved my life after an initial misdiagnosis. The resistance of your Follicular to treatment may indicate that it is transforming, or it may have a mutation which makes it resistant to standard therapy. You have nothing to lose by going to one of these research centers. Consider also participating in a clinical trial, as you have the potential to receive drugs that will not be on the market for several years. I participated in two trials, one of which placed me in full response for 4 1/2 years.  

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