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

Problems with Pomalyst & Velcade

by rcman on Mon Sep 07, 2015 9:24 pm

I've been having problems with Velcade – shakes, fevers, and chills. It is mainly after the IV treatment, sometimes two times a day. I usually have to take a 5 mg diazepam (Valium) to stop the shakes / tremors. Pomalyst gives makes me sweats, nights and daytime. I go through a lot of tee shirts or towels.

Has anyone been successful with Revlimid and Velcade. Does that work better? Also how long has anyone gone without the Velcade and Pomalyst before starting them up again. I have notice that 4 of my meds can cause the shakes, so are there other alternatives?

Thanks for the help.

rcman
Name: Jim
Who do you know with myeloma?: myself
When were you/they diagnosed?: 12/2012
Age at diagnosis: 73

Re: Problems with Pomalyst & Velcade

by mikeb on Wed Sep 09, 2015 3:21 pm

Hi rcman,

About your Velcade reaction, do you also take dex as part of your chemo cocktail?

During my induction phase I was on Velcade, Revlimid, and dex. I was supposed to take the dex in the morning prior to receiving Velcade. But one morning I forgot. By the time I got home from the myeloma center that evening after getting the Velcade, I was a wreck with exactly the symptoms you described. I took dex at that point and gradually things got better. By morning I was back to "normal."

So I'm wondering if you might need to take dex or something similar (or a higher dose) to mitigate the side effects of Velcade.

(In another thread – I think it was K_Shash's RVD treatment thread – there was discussion about the timing for taking the dex dose, with several people saying they took their dex several hours after getting Velcade and did not experience the side effects I had that one day. Yet another example of how individualized our responses are.)

Best wishes to you.

Mike

mikeb
Name: mikeb
Who do you know with myeloma?: self
When were you/they diagnosed?: 2009 (MGUS at that time)
Age at diagnosis: 55

Re: Problems with Pomalyst & Velcade

by kjpoppit on Thu Sep 10, 2015 2:53 am

Sorry I am not much help. I had Cytoxan (cyclophosphamide), Velcade, and dex for induction. I am on just Velcade for maintenance. I have not experienced any side effects related to Velcade that you describe. The dex was my problem – it got me wired up. I hope your side effects will ease up on you.

Warm regards, Kim

kjpoppit
Name: Kim Nelson
Who do you know with myeloma?: Me
When were you/they diagnosed?: Sept. 19th, 2013
Age at diagnosis: 47

Re: Problems with Pomalyst & Velcade

by rcman on Thu Sep 10, 2015 7:10 pm

When they give me the Velcade, it starts with small bag of nausea meds, fluids, Velcade and more fluids. I'm on Pomalyst 14 days and off 7. I do 5 steroids on Wed. 4 mg.

I have been having the shakes, fever, and chills with the Velcade and Pomalyst. Shortness of breath, sweats and loss of appetite, loss a lot of weight, also constipation at times. Right now I feel great off Pomalyst and Velcade, eating very well.

I went to see a pulmonary doctor and they have really helped with the breathing issues. I'm on a Breo inhaler (fluticasone furoate and vilanterol) and it has put me back to "normal" breathing. Life is good again.

I am wondering how long I could stay off both drugs without any fast problems coming back with myeloma. Has anyone been off the drugs for a long period of time without any problems?

Thanks, Jim

rcman
Name: Jim
Who do you know with myeloma?: myself
When were you/they diagnosed?: 12/2012
Age at diagnosis: 73


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