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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.
June 22
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A MyMyelomaTeam Member

Filomena,
That sounds uncomfortable. The sores can easily get infected. I have neuropathy in my hands, forearms, feet and lower legs and I am Smoldering like you. Fortunately my blood tests are still showing I am Smoldering, even though my body is having signs and symptoms of disease. Call your Heamtologist and get checked.
Paula🌹

June 22
A MyMyelomaTeam Member

Get checked by your specialist, we are not specialists…

June 25
MyMyelomaTeam

Those symptoms definitely sound uncomfortable, and it's completely understandable to worry about what they might mean. The good news is that SMM by definition doesn't cause symptoms — so these issues are worth investigating, but they aren't automatically a sign of progression.

Here's what's worth knowing about each Show Full Answer

Those symptoms definitely sound uncomfortable, and it's completely understandable to worry about what they might mean. The good news is that SMM by definition doesn't cause symptoms — so these issues are worth investigating, but they aren't automatically a sign of progression.

Here's what's worth knowing about each symptom:

- Burning mouth and sores — These can sometimes be related to myeloma activity affecting the mouth or gums, but they can also have other explanations worth ruling out
- Tingling and numbness in the limbs — This is known as peripheral neuropathy, which can be associated with myeloma or its treatments. It's important not to ignore this The most important thing right now is to contact your oncologist as soon as possible and describe all three symptoms together. They may want to run blood tests or other checks to see if there are any signs of progression.

Progression from SMM is tracked through measurable signs like M protein levels, plasma cell counts, and bone lesions — not symptoms alone. Your care team is best placed to interpret what's happening.

Don't wait on this one — getting checked sooner rather than later is always the right call.

June 22
A MyMyelomaTeam Member

Yes, I am also SMM and had burning in my mouth especially my tongue. My Oncologist from another cancer I had tums tests on me every 6 months to see if any progression. I get CTs every test. I get very bad back pain but no lesions. But the most important thing is it did not progress even with this symptoms.

July 8
A MyMyelomaTeam Member

Dear Filomena,
I was making a general statement but it happened to be where your question was. I would never call anyone stupid and you took this very personal and I apologize for making it sound personal.
I just feel that we are all looking for answers and some do not have specialists, and use the info on here to get answers.
That is all. I care and hope that we can all get good doctors caring for us.
All the best in health!

June 27

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Santa Ana, CA

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