I have smoldering Myeloma. Does anyone have this diagnosis?

I add my welcome, @treinbold. I moved your questions to this active discussion:
- I have smoldering Myeloma. Does anyone have this diagnosis https://connect.mayoclinic.org/discussion/multiple-myeloma-i-have-smoldering-myeloma-does-anyone-have-this-diagnosis/

I did this so you can read previous posts and connect easily with fellow SMM members like @carolee888 @gingerw @richardab @lfevold

You may also be interested in this discussion:

– Newly Diagnosed with Smoldering Multiple Myeloma: Watch & wait https://connect.mayoclinic.org/discussion/newly-diagnosed-with-smoldering-multiple-myeloma/

And this video with Mayo Clinic hematologist Dr. Kumar
– Multiple Myeloma: Smoldering, disease progression, and changes in approach: https://connect.mayoclinic.org/page/hematology/newsfeed-post/smoldering-myeloma/

For some people watch and wait can be disconcerting. I prefer to call it active surveillance. How do you feel about active surveillance as your primary treatment option?

@treinbold Going onto treatment for a condition, when that condition has not been diagnosed, can be very costly not to mention unneeded. There can be many side effects from the multiple myeloma treatment, some of which are very unpleasant. Personally, I wouldn't wish them on anyone!

Active surveillance of your condition, by periodic blood tests, is the accepted protocol.
Ginger

Smouldering? What is that suppose to mean? That it’s not a fire yet?
Who comes up with these terms? It either is or isn’t? Help me understand.

Active surveillance sounds much better to me!

@somde Smoldering multiple myeloma [SMM] is the second phase of protein anomalies in our blood plasma. MGUS [monoclonal gammopathy of unspecified significance] is the first phase, meaning there is a presence of M-proteins.

From MD Anderson Cancer Center is an article explaining SMM, meaning it can lie dormant, or increase in intensity, like a fire. I guess that is how/why it was named like that! https://www.mdanderson.org/cancerwise/6-facts-about-smoldering-myeloma.h00-159538956.html#:~:text=These%20abnormal%20cells%20can%20turn,to%20get%20worse%20over%20time.

Good question, and definitely something for a trivia game! In this season of wildfires in my area, we don't want to see smoldering anything.
Ginger

I have protein abnormalities present for 3 years. Blood tests still show them. Seems MM and MGUS were diagnosed as pending. Now these are ruled out. In limbo managing PN. Throbbing feet/leg cramps/anemia. weakness. Ongoing blood tests show high sedimentation rate. Have osteoarthritis.

Gingerw
Thank you so much for information and article.
God bless you! Suffering with this!
It makes my heart so sad when people have such things.
I am a RN and suffering is such a big part of life that so few people
on the street could ever imagine what others suffer. You are brave and I
pray you stay well. I too have osteoporosis in one of my knees and the pain can be crippling. Our journeys are difficult, life goes on, and sharing with others helps so much! Thank you! Debby

Thank you so much, it is stressful being told you have something and know nothing about, this is really helpful

I would encourage more discussions around what exactly the doctors are looking at that pushed them to make the “smoldering “ diagnosis.

The reason I say this is because I too was moved to that and ended up going to the Mayo for a second opinion. The term “smoldering” actually came from the Mayo.

After reviewing my slides from two different marrow biopsies, new labs, urinalysis etc. Dr. Dingle walked me through what all of that revealed explained many oncologists and hematologist only look at one factor when diagnosing SM, and that is simply if the effected marrow is at or over 10%. There are several other factors that should be considered and he stated there is currently much debate about the term Smoldering and he wished they not use it.

After he walked through me not having 4 of the 5 risk factors he said I do not have “smoldering” I have MGUS with a 1% chance of progressing a year. Now, who knows if that will remain true and that doesn’t mean that is what everyone will hear but I’m just saying a second opinion is worth it to me, good or bad. At least it’s more info.

Just my two cents.

The doctors did a bone marrow biopsy and aspiration that showed 16%, IGG 2267, M-Spike 2.04, I have to have my blood checked every 2-3 months,