What are your experiences with lenalidomide (Revlimid) for MDS?

Posted by nbadry @nbadry, Oct 19, 2024

My MDS del 5q has deteriorated over the last few months. I've had one transfusion (Hb was 74) and am about to have another. I'll qualify for subsidised lenalidomide when I've had 8 units of blood altogether. I'm wondering how much of an improvement I'm likely to see in haemoglobin counts on the drug. Feeling pretty lousy once it dips to the low 80s...Thanks in advance.

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ruthshow1 | @ruthshow1 | Jul 12 7:28pm

Thanks. Let us know what the doc says.

jamie14 | @jamie14 | Jul 11 6:41pm

In reply to @ruthshow1 "@jamie14 At what point did you take lenolinamide? I have 5q del and a HGB at..." + (show)

@ruthshow1 I was diagnosed April 3rd and started Lenalidomide the 19th. My doctor is in Chicago my HG was 9.3 I take 5 mg everyday. 3 days ago was hemoglobin was 14 and my RDW is not w 15.9 it was 19. Only problem is my platelets are 72. I go back Tuesday anxious to see what she says.

liz15101 | @liz15101 | Jul 11 8:27am

In reply to @ruthshow1 "@jamie14 At what point did you take lenolinamide? I have 5q del and a HGB at..." + (show)

@ruthshow1 Waited until HGB was under 9. Started and continue to take same dose of 10 . HGB increased to 12 after few months but for last 3 years has stayed at 10-11.

ruthshow1 | @ruthshow1 | Jul 10 9:30pm

In reply to @jamie14 "@liz15101 Thanks! That helps me I have the del5q also." + (show)

@jamie14
At what point did you take lenolinamide? I have 5q del and a HGB at 10-11 and very minimal hindering symptoms. The doc is recommending the med now. I’m not sure I want to start it yet. It’s been so helpful to know others who have this diagnosis. Thanks.

jamie14 | @jamie14 | Jul 9 9:47am

In reply to @liz15101 "@jamie14 Platelets dropped at one point but returned to normal range where they are now. I..." + (show)

@liz15101 Thanks! That helps me I have the del5q also.

liz15101 | @liz15101 | Jul 9 8:29am

In reply to @jamie14 "@liz15101 Have you platelets dropped? Main just dropped to 72 I go to my doctor Tuesday." + (show)

@jamie14 Platelets dropped at one point but returned to normal range where they are now. I have MDS delete 5q

jamie14 | @jamie14 | Jul 9 7:30am

In reply to @liz15101 "@jamie14 taking lenalidomide for 5 years. No coating on tongue. Main negative is occasional diarrhea which..." + (show)

@liz15101 Have you platelets dropped? Main just dropped to 72 I go to my doctor Tuesday.

liz15101 | @liz15101 | Jul 9 6:42am

In reply to @jamie14 "I have MDS and have been taking Lenalidomide for 2 and a half months. Does anyone..." + (show)

@jamie14 taking lenalidomide for 5 years. No coating on tongue. Main negative is occasional diarrhea which I control with Imodium

jamie14 | @jamie14 | Jul 7 7:59am

In reply to @loribmt "Hi @jamie14 I’ve not taken Revlimid (Lenalidomide) but I am familiar with being on meds that..." + (show)

@loribmt Thank you

Lori, Volunteer Mentor | @loribmt | Jul 6 9:20am

In reply to @jamie14 "I have MDS and have been taking Lenalidomide for 2 and a half months. Does anyone..." + (show)

Hi @jamie14 I’ve not taken Revlimid (Lenalidomide) but I am familiar with being on meds that can weaken the immune system leaving us more susceptible to fungal infections such as Candida albicans, or thrush.
One of the first symptoms would be the white, kind of pasty film on the tongue and sometimes roof of mouth, cheeks.

Article on Thrush:
https://www.mayoclinic.org/diseases-conditions/oral-thrush/symptoms-causes/syc-20353533
There are myriad articles online to read for how to avoid and treat thrush. But basically, it helps to reduce sugar/starch intake. Brush your tongue gently several times per day to brush off the ‘fuzz’. What you see building up is actually fungal colonies. Brushing helps to get rid of it. Your tongue may get tender or sore. So be very gentle.

Follow up with warm salt (or salt and baking soda) rinses several times daily.
Also, pulling with organic coconut oil can be helpful.
(1 teaspoon or more of coconut oil, let melt over tongue and swish for 20 minutes in your mouth, on your cheeks, etc. Don’t swallow, but spit into a waste basket. The solidifying oil will clog your drain) The coconut oil has some anti fungal/anti bacterial properties, it also is soothing and it takes good. ☺️

Also, make sure you tell your doctor about your Thrush! They can order antifungal for you to take. My oral dermatologist ordered Clotrimazole troches for me. They’re just lozenges that melt over your tongue which kill the fungus. You can use them a couple times per day and don’t have to actually swallow the medication for it to work. Just let it melt slowly. Takes about 15 minutes. No taste to them.

But the first thing to do is to speak with your oncologist or their NP/PA to let them know about your potential side effects of thrush, and including the tingling in chin and neck. Have you mentioned these sided effects to your team?

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