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Side effects of Pomalyst
Hello to all, i am starting on Pomalyst 2mg, and i am very nervous about any of these drugs, i just stop taking Velcade injections,Revlimid 10 mg, and decadron because of the bad neuropathy and a bad reaction to one of the meds. My guess it was the Velcade. I was ok until i had the first four injections of Velcade. My feet hurt and numb at the same time. Also stabing pains in my feet. some numbness in my fingers also. This has been going on for about 4 weeks now.I haven't taken any chemo meds for 4 weeks too ,only pain meds. Has anyone had problems with the Pomalyst? Thanks,,william
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hisierra1 - Who do you know with myeloma?: self
- When were you/they diagnosed?: april,2012
- Age at diagnosis: 55
Re: Side effects of pomalyst
Welcome to the world of Velcade - numbness and pain together. Besides the Gabapentin that i assume you are probably taking, try 5mg of Oxycodone. A very small dose every 6 hours or so. I take the edge off the pain and let's you function a little longer on your feet.
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Jhkahuna
Re: Side effects of pomalyst
I'm taking oxycodone and other pain meds with no luck. It's bad. Thanks!
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hisierra1 - Who do you know with myeloma?: self
- When were you/they diagnosed?: april,2012
- Age at diagnosis: 55
Re: Side effects of pomalyst
Hi William,
I had to stop treatment in November of last year due to Neuropathy (after 3 months on Velcade) Prior to that it was Revlimid, Decadron and Biaxin . The neuropathy was in my feet and really threw me for a loop. Numbness,Stiffness,burning.shocks,pain. I tried Lyrica but couldn't tolerate it though it did help with burning . I switched to diabetic socks (Wigwam) and had to get new shoes/sneakers. The mornings were very tough with stiffness and pain, Just taking a shower and dressing was a project. I had to change my work schedule . Working from home 2-3 days per week and taking later trains in morning to be sure I would get a seat because i couldn't stand for too long. The nights were bad. Burning,shocks.I couldn't put blankets on my feet due to pain. I was taking 3-4 percocet a day just to take the edge off .
I started taking Vitamin B 12 ,B-Complex and R-lipoic acid in March . I also started swimming at the gym 2-3 days per week. It is improving now. I'm not sure if it the vitamins, warmer weather (finally) or just a matter of time. I"m down to 1-2 Percocet per day but still have to be careful what I eat and drink. No high glycemic foods and no coffee. I still can't stand for too long but I feel better every week.
I started treatment again in April with Pomalyst replacing the Revlimid and Velcade. No problems so far but I am a bit worried because I don't want to go back to the pain I was experiencing before.
The Velcade wasn't all bad. It did it's job and I had a very successful Stem Cell harvest in February.
I hope it is just a matter of time off Velcade before you start feeling better.
Best Regards,
Kevin
I had to stop treatment in November of last year due to Neuropathy (after 3 months on Velcade) Prior to that it was Revlimid, Decadron and Biaxin . The neuropathy was in my feet and really threw me for a loop. Numbness,Stiffness,burning.shocks,pain. I tried Lyrica but couldn't tolerate it though it did help with burning . I switched to diabetic socks (Wigwam) and had to get new shoes/sneakers. The mornings were very tough with stiffness and pain, Just taking a shower and dressing was a project. I had to change my work schedule . Working from home 2-3 days per week and taking later trains in morning to be sure I would get a seat because i couldn't stand for too long. The nights were bad. Burning,shocks.I couldn't put blankets on my feet due to pain. I was taking 3-4 percocet a day just to take the edge off .
I started taking Vitamin B 12 ,B-Complex and R-lipoic acid in March . I also started swimming at the gym 2-3 days per week. It is improving now. I'm not sure if it the vitamins, warmer weather (finally) or just a matter of time. I"m down to 1-2 Percocet per day but still have to be careful what I eat and drink. No high glycemic foods and no coffee. I still can't stand for too long but I feel better every week.
I started treatment again in April with Pomalyst replacing the Revlimid and Velcade. No problems so far but I am a bit worried because I don't want to go back to the pain I was experiencing before.
The Velcade wasn't all bad. It did it's job and I had a very successful Stem Cell harvest in February.
I hope it is just a matter of time off Velcade before you start feeling better.
Best Regards,
Kevin
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kevin from li - Name: kevin form li
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Jan 2012
- Age at diagnosis: 54
Re: Side effects of pomalyst
I too will be interested to hear anyone's comments on the Pomalyst and it's effectiveness. Prior treatments have veen Velcade, then Revlimid, then Cytoxan/sub Q Velcade. Built up resistence to all prior treatments. My husband has had one cycle so far. First blood test the IgA increased 300 points. Though I don't think this is a big surprise to the doctor. He did the same thing with the Revlimid the first month. Guess it just takes time to get in the system good. Does anyone have any longer term experience with the effectiveness of Pomalyst?
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redtkd
Re: Side effects of pomalyst
I found the best shoe for neuropathy - "Sanuk men's sidewalk surfers" - wide and flat soles.
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Jhkahuna
Re: Side effects of pomalyst
Been on Pom for 15 months. Now in complete remission with minimal problems
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Lsew
Re: Side effects of pomalyst
Wow that's great news about the Pom. I haven't heard of this one and will investigate.
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royjulius - Who do you know with myeloma?: My girlfriend of 10 years, Alma
- When were you/they diagnosed?: About 5 years ago
- Age at diagnosis: 57
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Side effects of pomalyst
Thank you for posting that article. I will forward it to my Alma. Her doctor recommended Pom yesterday and she is apprehensive, but from what I have read this drug might get her feeling better. Let's hope she is willing to try, because if she doesn't I don't think she is going to get much further. I don't think I'm going to give up trying to convince her to try Pom. I'll also update....
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royjulius - Who do you know with myeloma?: My girlfriend of 10 years, Alma
- When were you/they diagnosed?: About 5 years ago
- Age at diagnosis: 57
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