[lrankin]

Not much fatigue usually, then 2-3 day crash

by lrankin on Wed Apr 20, 2016 11:01 am

My husband has multiple myeloma. His treatment journey is listed below.

Right now, he will go 3 weeks with fairly normal energy level - then he "crashes." For 2 - 3 days he feels weak and tired and practically sleeps the whole time. I have yet to meet another myeloma patient who mirrors this experience. Typically, they feel fatigued on a daily basis and rest but it doesn't seem to incapacitate them like this.

Doctors tend to say it could be the process of recuperating from the transplant and treat it as a watch and wait. They are going to measure his TSH to see if there are any thyroid issues.

His treatment history may be important so here it is:

Diagnosed May 2015
6 cycles Revlimid, Velcade, dexamethasone
Auto stem cell transplant October 2015
No maintenance treatment (we have just made our decision to do Revlimid)
His blood work has been good. I do notice his RBC is low. Doctors never act like that could be causing this.

[blair77]

Re: Not much fatigue usually, then 2-3 day crash

by blair77 on Fri Apr 22, 2016 12:34 am

My husband has this. He is 46, came off Revlimid maintenance 6 months ago. His transplant was in November 2013. He goes weeks with normal energy and then has a 3-5 day period where he is fatigued and "out of it". Then it passes and he goes back to normal for another 3 weeks.

He's in CR and on no drugs, but has been following this cycle since his transplant 2 years ago.

[lrankin]

Re: Not much fatigue usually, then 2-3 day crash

by lrankin on Fri Apr 22, 2016 7:44 am

Thank you for your response. Have doctors given any reason for this? I know people may have their particular myeloma "thing" - this may be ours. I will repost here if I learn something that could be of interest.

A friend of mine said before she was diagnosed with seronegative inflammatory rheumatoid arthritis, she experienced the same thing. This is related to inflammation. I found the similiarities interesting. I am still trying to figure out how to articulate what she has shared with me.

I am going to mention this to the doctors and see if it triggers any ideas. I don't think he has RA, I just think the inflammation connection is interesting.

[blair77]

Re: Not much fatigue usually, then 2-3 day crash

by blair77 on Sun Apr 24, 2016 1:40 am

They tested him for adrenal fatigue and some other possible deficiencies in hormones. His tes­tos­terone was low which they said could cause low energy. They put him on a tes­tos­ter­one cream but I don't notice a difference.

[lrankin]

Re: Not much fatigue usually, then 2-3 day crash

by lrankin on Sun Apr 24, 2016 9:31 am

Our myeloma specialist did bring up testosterone, too. I will repost to the forum if I learn something different that may be of benefit to know. We have doctors appointments in the next month.

[lrankin]

Re: Not much fatigue usually, then 2-3 day crash

by lrankin on Thu May 19, 2016 7:52 am

Blair77:

We have been told with the fatigue episode, you should get bloodwork done during the episode. That would be the only way they could detect something. I had a friend who experienced this and then she was diagnosed with rheumatoid arthritis - they could only catch it if she had her blood­work done during her fatigue episode.

I also spoke with a retired multiple myeloma specialist and he said the same thing about my husband's "crashes". So, the next time he has one, our local hema/onc will do his bloodwork.

We may get no answers. I would just like to put a name to it.