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I have smoldering Myeloma. Does anyone have this diagnosis?

Posted by Debbie @debbie1, Jul 10, 2011

Multiple Myeloma- I have smoldering Myeloma. Does anyone have this diagnosis?
Does anyone have an abnormal protein in their blood , which is a precursor to Multiple Myeloma. My Oncologist has said this could go on for years, or could or suddenly change

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treinbold | @treinbold | Aug 23, 2023
In reply to @cheft "I would encourage more discussions around what exactly the doctors are looking at that pushed them..." + (show)
@cheft

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.

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What Did Dr. Dingle say we’re the 5 risk factors?

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1 reply
Mentor
Patty, Volunteer Mentor | @pmm | Aug 24, 2023
In reply to @treinbold "The doctors did a bone marrow biopsy and aspiration that showed 16%, IGG 2267, M-Spike 2.04,..." + (show)
@treinbold

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,

Jump to this post

There is a threshold at which they may decide to start treatment even with smoldering multiple myeloma. I’m glad that they’re having your blood drawn every 2 to 3 months in case results should trip that treatment trigger.

The research and treatment options are quite promising for the whole multiple myeloma continuum.

In this respect, we are lucky.
Patty

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ChefT | @cheft | Aug 24, 2023
In reply to @cheft "I would encourage more discussions around what exactly the doctors are looking at that pushed them..." + (show)
@cheft

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.

Jump to this post

I’m sorry. Swapped with work. I made a post on here before and listed the factors. I’ll look for my notes and send when I can.

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Mentor
Lori, Volunteer Mentor | @loribmt | Aug 25, 2023
In reply to @treinbold "What Did Dr. Dingle say we’re the 5 risk factors?" + (show)
@treinbold

What Did Dr. Dingle say we’re the 5 risk factors?

Jump to this post

Hi @trienbold, I found the posting @cheft had written regarding the five risk factors for smoldering multiple myeloma he was given by his doctor. You can find it here: https://connect.mayoclinic.org/comment/883113/

I hope this is helpful for you. I know it can be frustrating with a watch & wait situation; feels like you’re waiting for the other shoe to drop. After reading @cheft’s comments, have you recognized and similarities?

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1 reply
ChefT | @cheft | Aug 25, 2023
In reply to @loribmt "Hi @trienbold, I found the posting @cheft had written regarding the five risk factors for smoldering..." + (show)
@loribmt

Hi @trienbold, I found the posting @cheft had written regarding the five risk factors for smoldering multiple myeloma he was given by his doctor. You can find it here: https://connect.mayoclinic.org/comment/883113/

I hope this is helpful for you. I know it can be frustrating with a watch & wait situation; feels like you’re waiting for the other shoe to drop. After reading @cheft’s comments, have you recognized and similarities?

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Thank you! I couldn’t figure out how to search for it.

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2 replies
treinbold | @treinbold | Aug 25, 2023
In reply to @cheft "Thank you! I couldn’t figure out how to search for it." + (show)
@cheft

Thank you! I couldn’t figure out how to search for it.

Jump to this post

Thank you, 😊

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Mentor
Lori, Volunteer Mentor | @loribmt | Aug 25, 2023
In reply to @cheft "Thank you! I couldn’t figure out how to search for it." + (show)
@cheft

Thank you! I couldn’t figure out how to search for it.

Jump to this post

Hi @cheft, you’re welcome. You can find your own comments or any members comments by clicking on the avitar (picture). It will bring up the bio page and underneath that it will say, View Profile.
Once that opens, under the photo you’ll see a little menu that says:
Discussions
Comments
Reactions.
Click on comments and scroll back chronologically. It can take a while if the comment is back in time.
Hopefully that helps you out.
Again, thank you for your great and helpful comments to fellow members with SMM…and beyond. ☺️

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treinbold | @treinbold | Aug 25, 2023

I am confused about my bone marrow biopsy, can someone please explain this to me? It says abnormal plasma cells present, plasma cells show cytoplasmic kappa light chains restriction and shows CD19 neg, CD38bri, CD45 neg, CD 56 neg, CD138 mod, cKappa mod and CD34 positive

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brokendoll | @brokendoll | Dec 30, 2023

Super late to the party but I was recently diagnosed with smoldering myeloma (still going through testing to determine damage.) Plasma cells at 20%, legion on C3. Dr said I "shouldn't" be having symptoms but I have been for quite some time: intermittent fatigue, weakness, bone pain, back pain and tender at C3, very strange pinpoint sores on knuckles with swelling, numb toes, Reynaud's syndrome, infections that take a long time to heal, and I just woke up in the middle of the night with another tender bump/sore on one of my toes (they tend to pop up during the night).

All the info I find on the 'nets say that there are no symptoms but I feel vindicated that others are experiencing them too. I wonder if people just have super busy lives or get these unusual but easily-dismissed symptoms and don't pay them much mind. ? I have been out of work for a while, no kids, a relatively quiet life so I notice small changes in my body. Hopefully, though, these aren't 'created' by my mental state. If so, wow. How amazing is our physiology?

It's been a very long time since the OP. I am hoping for at least a slow progression and high quality of life to you all.

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1 reply
smiles1951 | @smiles1951 | Jan 9 10:27am

At my November 2021 Wellness Checkup by my Mayo Family Physician I was told I was remarkably healthy. I started to put on my jacket to leave but told my doctor "That's great, but maybe I am a tad more tired." That began the first of blood tests and urine tests. I did not look sick or feel sick and like always I'd had more than a busy year. Anemia and a bit of blood in the urine was the result of first test so on the tests continued each week until two days past my 70th birthday in December when my doctor wrote I am phoning you to explain why I am sending you to a specialist. My family doctor said I had a blood plasma disorder. January 26, 2022, we met with a Mayo Hematologist that said they were going to run a few more tests but the doctors at Mayo believed I had Stage 1 Multiple Myeloma, which was caught early. My specialist told me three times, "Your World has not come to an end. Presently there is no cure for Multiple Myeloma, but it is treatable." I began shots the first Tuesday of February 2022. By April the M spike of 3 (fairly high) had come down significantly as well as other blood test numbers were so very much better. My doctor told me if I were his wife, he would not have me go to Mayo Rochester for a stem cell transplant. I should visit the Rochester facility to learn about the process just in case I would need it in years to come. What I learned at my visit to Mayo Rochester was that Dr. Gomez of the transplant team felt I had had a very slow growing form of multiple myeloma for 20 years. That was a surprise to me because I have always been high energy working some of the best jobs and raising our family with my husband. I returned to Mayo Hematology/Oncology Department back in our state. I had more cycles of treatment to complete. By the end of September 2022, I was told I would do maintenance meaning seeing a specialist every other month with a targeted treatment following that appointment, but have targeted treaments each month to maintain my multiple myeloma. They do not use the word remission, but I am so very much better. I have no pain, no fatigue, and life is good. Research has come so very far regarding Multiple Myeloma. I keep a positive attitude and believe there will be a cure in two or more years. Meanwhile my specialists have told me I will have many years to live. i wanted to share my experience in case it will help someone. I am very busy so cannot write often.

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