Anyone with myeloma experience a change in their sense of smell?

Posted by sdudleys @sdudleys, Dec 27, 2025

Hi,
I have just been diagnosed with Multiple Myeloma but have not started any treatment yet.
The timing isn't great with Ucare going away, just adds to the anxiety.
I am 69 years old FYI.
I am wondering if anyone else has experienced a change in their sense of smell?
I spent quite a few years spraying automotive paint, including repainting a few hundred semi trailers. That experience pretty much fried my olfactory senses, something had to really stink for me to smell it.
Jump forward to this holiday season and I now have a heavy unpleasant smell lingering with me all of the time.
Anyone else have a similar experience?

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bhbooze | @bhbooze | Dec 28, 2025

Yes, I have MDS and I don’t always smell odd scents but occasionally I smell weird scents. Nothing is a really bad smell but it does make me think something else might be going on. My oncologist has examined me and found nothing wrong. I hope you get some answers soon.

ewash55 | @ewash55 | Dec 29, 2025

I do, I do! It is driving me crazy. I have endured it for weeks. Sometimes it is so strong I can’t sleep. I’m seeing an ENT Friday. I don’t know if he will be able to tell me what it is. If not, I start chemo next month and have my fingers crossed that if this has something to do with cancer it will disappear. Are you going to talk to anyone?

Colleen Young, Connect Director | @colleenyoung | Jan 7 4:24pm

@sdudleys, I hope you saw the supportive replies from @ewash55 and @bhbooze. When do you start treatment?

sdudleys | @sdudleys | Jan 8 12:30pm

In reply to @colleenyoung "@sdudleys, I hope you saw the supportive replies from @ewash55 and @bhbooze. When do you start..." + (show)

@colleenyoung

I did see them and appreciate the replies.

Unfortunately I was on Ucare, so that transition has slowed down my scheduling.

I'm told I can't start my treatment until I have received the drug Revlimid. I have spent several hours on hold trying to get approval. It looks like best case scenario I will get it in a week and a half.

So maybe I can start my chemo around the end of the month?

Thank you for asking.

Colleen Young, Connect Director | @colleenyoung | Jan 8 8:35pm

In reply to @sdudleys "@colleenyoung I did see them and appreciate the replies. Unfortunately I was on Ucare, so that..." + (show)

@sdudleys, might an oncology social worker advocate for you to speed up the approval process?

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