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Real members of MyMyelomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

“Aches And Pains” How Do We Know If Our Pain Is MM Or Side Effects Of Treatment Or Just “getting Older”?

A MyMyelomaTeam Member asked a question 💭
Ladner, BC Canada

I have been dealing with myeloma for 19 months now. SCT just over a year ago and am on Revlimid (10mg per day no breaks) My legs hurt (and are weak), I get random pain in different parts of my body, headaches, even my gums ache at times and if I hurt myself it seems magnified - like I have become “wimpy”
I just don’t know if this is typical or when I should even mention it to my doctors. 🤷🏼‍♀️ I have no bone involvement yet. I have neuropathy in my feet and the backs of my legs but am used to… read more

September 23, 2023
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A MyMyelomaTeam Member

I see several talking about constipation and diarrhea. I was having diarrhea several times a day. After a meal or after taking meds. I contacted American Oncology Network (AON) pharmacy and they were very helpful. They wanted to know everything I was taking including supplements. First they determined they were all compatible and then told me what to take by themselves or could be combined with other meds. Bingo no problems now.

September 28, 2023
A MyMyelomaTeam Member

Tell your doctor/oncologist about EVERYTHING! Let them decide and tell you what’s “normal”. If you don’t tell them, they don’t know. I was on Revlimid for 10 years post SCT. I got really good at power naps :-). But because I complained about the side effects, we reduced the dosage to 10mg. That was tolerable and yet effective for years. I finally had a relapse recently and am now on Darzalex and dex after initial treatment that included Velcade. Again, because I found the side effects intolerable (severe neuropathy), we dispensed with the Velcade. I can’t emphasize enough how vital it is to talk to your medical team and to keep them informed about how you’re feeling. Quality of life is important. You have to be your own advocate. And if they pat you on the head and tell you to deal with it, at least you know.

September 23, 2023
A MyMyelomaTeam Member

I do have bone pain. Hard to tell if it is from the MM or old age. Either way I have bone pain. I'm seeing a pain management doctor and getting steroid injections. They are helping and I don't have to take medication. I'm on 2.5mg of Revlimid, 21 days off 7 days. My legs are weak, again I don't know if it is from MM or old age.

October 13, 2023
A MyMyelomaTeam Member

RobertMonteiro-SCCA has me taking Cromolyn Sodium Nasal Solution for sinus drainage and pulmonary Dr has me on Montelukast for 60 days due to phlem.

September 30, 2023
A MyMyelomaTeam Member

That’s a very very good question!!
I am trying to figure out for long time now .

The easy answer is
“All the above “

You can try to isolate the question at any given time and the answer will be different.

If you in remission for longer than 6 month
Mostly is “age related “

If you have Nader active heavy treatment- that’s the side effects enhance the age related

If you young person
Than it’s treatments and side effects

Also depends how advance is your bone damage

September 24, 2023

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