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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Re: Pomalyst side effects (e.g., extreme fatigue)?

by davidincalif on Wed Sep 30, 2015 8:51 pm

You would not like the rat poison. It leaves a bad aftertaste. :D :D :D

davidincalif
Name: David
When were you/they diagnosed?: Feb 2007
Age at diagnosis: 67

Re: Pomalyst side effects (e.g., extreme fatigue)?

by Donnie on Tue Nov 29, 2016 6:46 pm

I am in my third week of Pomalyst, first cycle (2 mg per day for three weeks, off one week). I take 20 mg of dexamethasone once per week for those three weeks.

My worst side effect is weakness, fatigue, dizziness, mental confusion. It is worst during the third week. It subsides during the off week. At least I expect it to subside. It did while taking Revlimid. The doctor took me off of that when I developed a rash. That is better.

Of course, I am vulnerable to opportunistic infections, pneumonia in particular. I have have had two heavy chest colds in the last two and a half months. I received a pneumonia vaccine in September. I will receive a second vaccine in a week or so. I am fighting the second chest cold right now.

My wife and I work together – carpentry, painting, repair, handyman stuff. We also do some remodeling, but we are wanting to get away from very large jobs (but people keep calling us). On the other hand, the strenuous nature of our work keeps us stronger and healthier, I think, than we would be otherwise. She is a breast cancer survivor.

And so, there is much to be thankful for.

I am glad that a forum like this is available. All the best, everyone!

Donnie

Donnie
Name: Donnie
Who do you know with myeloma?: self
When were you/they diagnosed?: October, 2015
Age at diagnosis: 61

Re: Pomalyst side effects (e.g., extreme fatigue)?

by JBarnes on Fri Dec 09, 2016 9:42 pm

Was on 4 mg of Pomalyst for several months and the fatigue was terrible – slept more than the dog! I was also taking 20 mg of dexamethasone twice weekly. The Pomalyst did not drop my numbers, so they switched me to Ninlaro (ixazomib) and Revlimid. We'll have to see how that works out.

JBarnes
Name: Jerry Barnes
Who do you know with myeloma?: Self
When were you/they diagnosed?: Aug 17, 2012
Age at diagnosis: 54

Re: Pomalyst side effects (e.g., extreme fatigue)?

by dianaiad on Sun Jul 23, 2017 12:32 am

I have been on Pomalyst for a whole week now, and have been dealing with more side effects from that one medication than all the others I've had, combined (except perhaps for Velcade).

A big problem has been fatigue.

When I was on Revlimid I remember a conversation in here about when to take it; many people said it made them sleepy, so they took it at night. Some of us had the opposite problem; Revlimid gave me insomnia, so for me, taking it in the morning solved the problem. Worked great. Since Pomalyst is a sort of analog of Revlimid and thalidomide. I just kept taking it in the morning.

Oops.

So I switched and took it at night. First good night's sleep I've had in a week.

So I'm wondering if taking Pomalyst at night, in general, is good for the fatigue from it. Does anyone know?

dianaiad
Who do you know with myeloma?: Me
When were you/they diagnosed?: Officially...March 2013
Age at diagnosis: 63

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