The Myeloma Beacon

Independent, up-to-date news and information for the multiple myeloma community.
Home page Deutsche Artikel Artículos Españoles

Forums

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

Re: Shortness of breath - common Revlimid side effect?

by faithoverfear on Sun Dec 03, 2017 12:56 pm

Update on N-acetylecysteine:

Don't take it with Revlimid. My oncologist explained that Revlimid decreases glutathione. Cysteine is the rate limiting factor for creating glutathione. Anything that increases glutathione is going to decrease the efficacy of Revlimid. That includes almost all of the amino acids.

So be very careful with supplements.

Be Well.

faithoverfear
Who do you know with myeloma?: me
When were you/they diagnosed?: Sept 2014
Age at diagnosis: 63

Re: Shortness of breath - common Revlimid side effect?

by Don on Tue Feb 20, 2018 8:48 am

Update:

As I've mentioned before, I was diagnosed in 2013. I didn't do well with Velcade, so I've been taking Revlimid and dexa­meth­a­sone since.

I've had excessive sweating and shortness of breath. Over the last 5 years I've had a heart catheterization, echocardiogram, stress test, EKG. All normal. I'll be 67 in March, and I played many sports over the years, and I ride my bike now to try to stay in shape.

Recently my myeloma panel came back high. My Revlimid and dex were eventually raised from 5 mg to 15 mg and from 8 mg to 24 mg, and my shortness of breath has worsened.

What concerns me more is I'm getting physically weaker. If I sit on a lawn chair that leans back, I need help to get up. If I sit on the ground, I need something to hold onto to get up. I had to shorten my bike ride to ensure I can get back.

I'm grasping at straws, but doctors have been trying to solve this for 5 years.

I am getting another stress test in the next couple weeks.

I also had the pulmonary test,and I did great.

I have no explanation.

Any help, ideas, suggestions, or insights would be appreciated.

Don

Re: Shortness of breath - common Revlimid side effect?

by faithoverfear on Fri May 04, 2018 9:06 am

Don,

Sorry you're going through such difficulty. You sound very much like me.

I complained and complained and then complained some more. I finally asked the people at Celgene if Revlimid depletes anything. Yes, minerals mentioned were magnesium, calcium, sodium. Calcium is needed for nerves to activate, drive muscle contraction. Magnesium is needed for nerves to release, let muscles relax.

I asked my oncologist if it's okay to try these. She did not expect to see any benefit because my blood tests did not show a deficiency, but let me go ahead and try. It made a world of difference. Even so, subsequent blood tests did not show any change. I'm perplexed by that one.

Ask your oncologist if it's ok to try calcium and/or magnesium supplements. My oncologist did not expect to see any benefit because the blood tests did not show deficiency. But did let me go ahead and try.

faithoverfear
Who do you know with myeloma?: me
When were you/they diagnosed?: Sept 2014
Age at diagnosis: 63

Re: Shortness of breath - common Revlimid side effect?

by faithoverfear on Sat May 05, 2018 10:53 am

I forgot to mention potassium. That is also depleted by Revlimid.

faithoverfear
Who do you know with myeloma?: me
When were you/they diagnosed?: Sept 2014
Age at diagnosis: 63

Previous

Return to Treatments & Side Effects