Revlimid Side Effects

[JimLucas]

I am new to this as my 83 year-old father was diagnosed several weeks ago with MDS deletion 5q-. My problem is that my father is very, very private, lives about a 4-hour drive away, and does not share the details of his test results or doctors visits.

I have done some online research on Dr. Alan List and deletion 5q- which led me to this website. My father has full confidence in his Oncologist Hematologist and has been on Revlimid now for just a couple of weeks. He receives frequent transfusions and other injections but the details are always very sketchy.

My question is in regards to the side effects of taking Revlimid. Whereas his weekly or bi-weekly transfusions used to revive him enough to lead a relatively normal/active life, he has suddenly weakened to the point of not being able to leave the house except for doctor visits. He has lost his appetite, is often nauseous, has become somewhat incontinent, and his voice has weakened so much that it doesn’t even sound like him on the phone anymore.

I would like to know if anyone has had a similar reaction to Revlimid and whether these side effects can be considered “normal”. Even my father doesn’t know if his sudden weakness is a result of the disease progressing or the drug taking effect.

I’m going to be visiting my father next week and will try to speak to his doctor directly. What questions should I ask to be better informed and what stats can I post on here to find out what’s really going on?

Any and all responses would be very much appreciated. Thank you.

[Mary4Mike]

Hello Jim Lucas

Welcome to the forum. This is a great place for support and information.

If I am understanding you correctly, your father’s doctor is Dr. Alan List. He couldn’t be in better hands, especially in regards to Revlimid. If I remember right, he did research and clinical trials with Revlimid. As far as your father’s symptoms, one thing you learn here is that everyone responds differently. I pulled the insert from the Revlimid package. I am sure you know that they have to report every side effect that was experienced. Some of them are renal impairment, blood and lymphatic system disorders, skin and subcutaneous tissue disorders, gastrointestinal disorders, diarrhea, pruitus, rash and fatigue. My husband has experienced constipation. His counts also went down and he had to be transfused. If your father has had this sudden weakness, he probably should call his doctor before next week.

I would take a list of all the symptoms your father is experiencing and go over each one with his doctor. The injections he is getting could possibly be Procrit or Aranesp to boost his red blood cells.

I hope that your father will open up to you with information, because there is a lot to be learned on the web. He may not have access to a computer or he may not feel well enough to do the research himself.

If you have his blood counts, blast counts, or bone marrow info, you could post those here. There are intelligent people on here that might have some insight for you.

Best wishes to you and your father. Keep us posted on his progress.

[JimLucas]

Thanks for the advice and info Mary. No, my father’s doctor is not Alan List – but his doctor said he is well aware of Dr. List’s clinical trials and keeps up to date with the latest developments from both Moffit and Mayo.

My father has three doctor visits or treatments this week alone so he is being closely monitored. What he is not getting or hearing is hopeful and comforting reassurance of any kind. Despite his age (83) he had been in good health and was sharp as ever but lately has resigned to pass away in weeks or a few short months.

I have read the “summary of adverse effects” from the Revlimid trials and the black box warnings but first-hand accounts of side effects are easier to relate to and share with him.

What my father really needs is a support group but I don’t know of any in the Melbourne, FL area. He doesn’t go online so I’m going to do what I can to gather information on his behalf.

I will post his test results as soon as I can. Thanks again for sharing.

[Mary4Mike]

Jim,

I am sorry to hear your father is “resigned” to pass away in weeks or a few short months. I don’t know how far back you went on reading past posts, but there are many people with this disease that have lived for years with it. Most of the chemical treatments tend to knock down the blood counts initially. Transfusions don’t always make one feel boosted up during the first weeks of a treatment. If you haven’t already done this, click on search and type in Revlimid and you will find several posts of different side effects that people have experienced on it. It may help your father to hear about some of the experiences others have had…most aren’t anywhere as terrible as the black box warnings and most of them go away after awhile or they can be treated such as nausea, etc.

It is easy to feel hopeless when you are nauseated, weak, and fatigued. If he is getting “treatments” this week, perhaps some of the side effects will pass. If these came on rather suddenly, I would have to say it most likely is from the Revlimid.

One last thing….most people on this forum don’t put a lot of stock in statistics.

Take care,

[lizab.]

I’m in Western Canada…dx, with Myelodysplasia 5q.After a huge amount of work I was approved for a trial (the actual price would be totally out of my range) and I was delighted..fewer transfusions would have been wonderful BUT after 2 weeks of Lenalidomide 5x2mg p.d I was covered from head to food with a thick red ugly itchy rash and had to stop taking it.
more than disappointing…I have the perhaps unfair sense that the people in charge here who have very little experience don’t know a whole heap about about they’re doing…has anyone else had, and overcome, a reaction like this ?
I really look forward to hearing from anyone who has. I only seem to write here when I’ve tried some treatment that’s gone wrong which I suppose isn’t very constructive (of me !) but I live in hopes…
Thank you
Liz.

[choijk]

My father was on Revlimid for about 6 days at 10mg a day. Within 6 days, he had diahrrea with blood in his stool, hives all over his body, face swelling (especially around the eyes and forehead). ALtough my father does not have a 5q deletion, I was hoping that this were the big guns were looking for. It helped so many families and we were so full of hope. This is the first chemo we’ve tried.

After 6 days, doc recommended that we stop. So my father is back on Exjade at 500 mg and blood transfusions. We might start back on Revlmid at a lower dosage but the doc suspects that dad will have the same reaction again.

I haven’t done much research on Dacogen but from what I read on the forum, many members here had great response to Dacogen as well.

As for Vidaza, my family and I attended the MDS convention in Vegas this past summer. One of MDS experts said that as a general rule, he does not recommend Vidaza for low risk patients. Hence, my family and I are hesistant to turn to Vidaza at this time as my dad is considered a low risk patient.

I hope this helps.

[Mary4Mike]

June,

Do you recall why the doctor did not recommend Vidaza for low risk patients? My husband is low risk and was given Vidaza. It kept him off txs for 12 months. He also had no side effects.

Just asking

[choijk]

Hi Mary,

I’m sorry I don’t have an answer to that. I actually posed a question to the MDS expert panel asking at what point, should a low risk MDS patient start thinking about aggressive treatment (i.e., chemo). And one of the experts, (I think his last name started with a “J”) indicated that as a general rule he doesn’t recommend Vidaza for a low risk patient. But that was about it!

I am glad to hear that Vidaza worked so well for your husband! My father’s 1st hematologist did indicate that he doesn’t care about the Who classification and what is considered low or high risk MDS. He said that if a patient is in need of rbc transfusions every 1-2 weeks, he would consider that high risk, and would suggest chemo right away.

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