We have begun Pomalyst (4mg daily days 1-21)-Velcade (1.3 mg/m2 weekly)-Dex (40 mg weekly), and are now experiencing extreme fatigue, sleeping up to 15 hours/day, especially on the off dex days.
We'd greatly appreciate hearing more about this side effect and are wondering if you have any advice regarding best ways to deal with such tiredness. Does this side effect lessen over time? Any supplements that might help, etc.
And has anyone on Pomalyst been experiencing other side effects?
Thanks for sharing your experience and advice,
David and Marianne
Forums
-
silverberg - Who do you know with myeloma?: Care provider to my wife
- When were you/they diagnosed?: October 2011
Re: Pomalyst side effects (e.g., extreme fatigue)?
Hi David and Marianne,
I am on Pomalyst 4mg + weekly 40mg dex. I"m experiencing many of the same things you are.
I too am looking for ways to combat the side effects. I have significant fatigue, shortness of breath, back pain and some nueropothy in my feet.
The shortness of breath is the most debilitating for me. I find it a challenge to do simple household chores (laundry, shower etct) without the need to take a break and catch my breath.
If these are truly side effects from the POM, I don't know how much longer I will continue it.
If you get any more info please post it here!
Thanks,
chuck
I am on Pomalyst 4mg + weekly 40mg dex. I"m experiencing many of the same things you are.
I too am looking for ways to combat the side effects. I have significant fatigue, shortness of breath, back pain and some nueropothy in my feet.
The shortness of breath is the most debilitating for me. I find it a challenge to do simple household chores (laundry, shower etct) without the need to take a break and catch my breath.
If these are truly side effects from the POM, I don't know how much longer I will continue it.
If you get any more info please post it here!
Thanks,
chuck
-
Chaz62 - Name: Chuck
- Who do you know with myeloma?: me and more
- When were you/they diagnosed?: 2009
- Age at diagnosis: 46
Re: Pomalyst side effects (e.g., extreme fatigue)? Back ache
In the middle of the first cycle, we began to experience profound aches in the lower back which spread towards the upper back and down the sides of the hips.
We first used paracetamol (Tylenol, acetaminophen) 1 gm, and this did give some relief, but it did not last long. The aches pain would return and wake us from sleep. We have now just tried fenezol caffeine and this has helped a lot and allowed us to sleep again.
Does anyone else have experience with Pomalyst and back ache? It is listed as one of the common side effects of Pomalyst. But it is a back ache not like other back aches. It does not prevent us from using the elliptical walker to train and in fact we feel better while exercising.
We would appreciate hearing if anyone has found a good way to deal with this powerful backache.
We first used paracetamol (Tylenol, acetaminophen) 1 gm, and this did give some relief, but it did not last long. The aches pain would return and wake us from sleep. We have now just tried fenezol caffeine and this has helped a lot and allowed us to sleep again.
Does anyone else have experience with Pomalyst and back ache? It is listed as one of the common side effects of Pomalyst. But it is a back ache not like other back aches. It does not prevent us from using the elliptical walker to train and in fact we feel better while exercising.
We would appreciate hearing if anyone has found a good way to deal with this powerful backache.
-
silverberg - Who do you know with myeloma?: Care provider to my wife
- When were you/they diagnosed?: October 2011
Re: Pomalyst side effects (e.g., extreme fatigue)?
My spouse had the same issues but is on Revlimid. Spoke to the doctor and seemed other then rest not much could be done. We had to get the mindset that resting all day is okay. His body is working hard fighting this disease.
Upon advice from others here I started making him smoothies because eating tired him. I put in frozen berries. Spinach avacado activa and a boost so he is getting everything he needs. He found the smoothies helped him with his energy. I guess his body has now adjusted and he is getting his energy back. Just took some time and patience.
I hope you feel better soon.
Upon advice from others here I started making him smoothies because eating tired him. I put in frozen berries. Spinach avacado activa and a boost so he is getting everything he needs. He found the smoothies helped him with his energy. I guess his body has now adjusted and he is getting his energy back. Just took some time and patience.
I hope you feel better soon.
-
Terrilynnn - Name: Terrilynn
- Who do you know with myeloma?: Boyfriend
- When were you/they diagnosed?: May 18 2013
- Age at diagnosis: 46
Re: Pomalyst side effects (e.g., extreme fatigue)?
Terrilynn, thank you for your advice. We will try the smoothies! Did you experience the back aches associated with revlimide? We are having extreme back pain events with pomalidomide.
-
silverberg - Who do you know with myeloma?: Care provider to my wife
- When were you/they diagnosed?: October 2011
Re: Pomalyst side effects (e.g., extreme fatigue)?
Hi,
I have been on Revlimid for 6-7 months and have experienced some lower back pain. I also have some problems with aches in my hips and legs and in my case it´s probably a combination of medication, trochanteritis, slight arthrosis and possibly some chronic GVHD after my allogeneic transplant in 2012.
I take ibuprofen and paracetamol daily. I´ve also found that an electrically heated pillow under my lower back helps a lot.
Best wishes,
Åsa
I have been on Revlimid for 6-7 months and have experienced some lower back pain. I also have some problems with aches in my hips and legs and in my case it´s probably a combination of medication, trochanteritis, slight arthrosis and possibly some chronic GVHD after my allogeneic transplant in 2012.
I take ibuprofen and paracetamol daily. I´ve also found that an electrically heated pillow under my lower back helps a lot.
Best wishes,
Åsa
-
asaryden - Name: asaryden
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2010
- Age at diagnosis: 48
Re: Pomalyst side effects (e.g., extreme fatigue)?
For fatigue, try Adderall. Works a charm ! If you can, do some form of exercise; counter intuitively, it will make you less tired.
-
Van townsend
Re: Pomalyst side effects (e.g., extreme fatigue)?
I was started on a 4 mg dose of Pomalyst about a year ago and was having problems, so the dose was dropped to 2 mg. I still experienced all of the side effects listed for Pomalyst. This week, we reduced the Decadron dosage from 40 mg weekly to 20 mg weekly.
The problem I was having with Decadron was that it either kept me awake for 40 hours, during which I felt like I could paint the Sistine Chapel ceiling with one hand tied behind my back, or it put me to sleep for that period of time. I never knew which would happen. As far as effectiveness, the main test my oncologist relies on is the M-protein (SPEP); my numbers have remained fairly constant for a year at 0.3 or 0.4 g/dL (3 or 4 g/L). My oncologist wants the number to get to 0.0 before he considers me to be in remission.
Still have neuropathy on feet and finger tips. Have to dictate messages using Dragon Naturally Speaking. This started when I was on Velcade. I was told in red that the neuropathy would disappear once the Velcade was stopped. Not true. I take Neurontin (gabapentin) 3 times daily. This keeps the neuropathy in check, but has not reduced it at all.
I still have occasional dizziness, but dizziness is listed as a primary side effect of almost all of the other drugs I take, so I can't do much about it.
The problem I was having with Decadron was that it either kept me awake for 40 hours, during which I felt like I could paint the Sistine Chapel ceiling with one hand tied behind my back, or it put me to sleep for that period of time. I never knew which would happen. As far as effectiveness, the main test my oncologist relies on is the M-protein (SPEP); my numbers have remained fairly constant for a year at 0.3 or 0.4 g/dL (3 or 4 g/L). My oncologist wants the number to get to 0.0 before he considers me to be in remission.
Still have neuropathy on feet and finger tips. Have to dictate messages using Dragon Naturally Speaking. This started when I was on Velcade. I was told in red that the neuropathy would disappear once the Velcade was stopped. Not true. I take Neurontin (gabapentin) 3 times daily. This keeps the neuropathy in check, but has not reduced it at all.
I still have occasional dizziness, but dizziness is listed as a primary side effect of almost all of the other drugs I take, so I can't do much about it.
-
davidincalif - Name: David
- When were you/they diagnosed?: Feb 2007
- Age at diagnosis: 67
Re: Pomalyst side effects (e.g., extreme fatigue)?
I just posted my experience with Pomalyst under "Shortness of breath while on Pomalyst." I had to discontinue the drug. I was on 4 mg dose. I meet with oncologist next week and will see if a drop in dose is under consideration. I did find the days I took the dex along with the Pomalyst were my very worst days for side effect. (Each week, I take 8 mg dex on Tuesday, then 8 mg on Wednesday).
I think some patients are on Pomalyst without the dex and maybe that is a way one can tolerate the Pomalyst. Does anyone know: Do light chains and plasma SPEP proteins go down effectively on Pomalyst alone without the dex?
I think some patients are on Pomalyst without the dex and maybe that is a way one can tolerate the Pomalyst. Does anyone know: Do light chains and plasma SPEP proteins go down effectively on Pomalyst alone without the dex?
-
Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Pomalyst side effects (e.g., extreme fatigue)?
I've been on Pomalyst (2 mg) for 10 months now. No real side effects except being lethargic sometimes. Not seeing a real effect of Pomalyst with myeloma; the M-spike is 0.66 g/dL (6.6 g/L) and holding. Maybe next visit in October they'll put me on something more lethal – like rat poison or the ebola virus ... 
-
Rex
14 posts
• Page 1 of 2 • 1, 2
Return to Treatments & Side Effects