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How to know whether smoldering myeloma or multiple myeloma?

Posted by kediskep @kediskep, Dec 17, 2023

Hello, hope you all are doing well!
I have a situation with my mom(65 years old). From September my mom was on viral situation. When we go to the doctor at the start he has doubt for multiple myeloma, the reason why the doctor has this kind of doubt was the color of my mom tonsils. He does some blood test including proteins and immunoelectophoresis bc my mum hb was 9 (11 was the normal range at the lab tests). After the answers, the lab shows high levels of proteins and high IGM (close to 10000). From that point for him it was clearly that my mom has MM. This was on September 2023. After the tonsils treatment ( antibiotics for 1 week ) the tonsils was totally recovered, and after that the doc said that he was wrong byt suggest us to do the bone marrow aspiration. The result was 45% plasma cell. The situation was totally chaos and we decided to go out of our country for more specific analysis and to have a real diagnosis. ( we live on Albania). On october till november we have done all the test for multiple myeloma and the results are: PET-CT totally normal. Blood test just shows high IGG, low IGA and IGM, low Kappa and high Lambda and the ratio kappa/lambda is 0.01 ( from 1.35-2.65 ). Calcium, creatine and other blood test comes normal. Also, on the urine, all are normal. Also, beta2 - microglobulin is 5.5 ( normal value is (0.7-2.5) .After that we have done again bone marrow aspiration and the results was this time 16%plasma cell. On bone marrow biopsy the reasult are for plasma cell stage 1-2. We have done also the FISH that come with 5 mutations.
After all of those results doctors says that is stage 3 of MM and we need to start the treatment directly.
We haven't start the treatment yet, because even the test are like these, all these months we have read all the time for stages of MM and as i know for MM its needed to have all the CRAB, and my mom doesn't have any of these.
My mom is active, she doesn't have any symptoms, she eats healthy, she has a normal weight.
My questions are on all of these kind of situations how to determine if this is an active MM ? bc we dont want to aply medical treatment. Is there anything else that we have to do? Depending on your situation( if someone has the similar, how you determined the real diagnosis). Also if someone has recommendations for a doctor that applies natural treatment not medical for multiple myeloma who you suggest?
We unfortunately cant come to USA, it requires visa and for these needs a lots of procedures and its not guaranteed.
Any kind of tips for us in this situation it will be helpful.
Thanks and greetings 🙏

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jefe | @jefe | Jan 24 6:57pm
In reply to @ginorio "Hi jefe Are you being on chemotherapy? What Rx you Dr used. My Dr want very..." + (show)
@ginorio

Hi jefe
Are you being on chemotherapy? What Rx you Dr used. My Dr want very aggressive treatment with
cyclophosphamide
lenalidomide and daratumumab
dexamethasone
My concern is to much Rx for Myeloma without symptoms (smouldering myeloma). In addition, I have kidney disease stage 3a and my inmune system are compromised.
Any advice?
All these protocols are very scaring.

Thanks for your last response.

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It does sound a bit of overkill starting on 4 drugs. I started on Revlimid and dexamethasone. After a year I had daratumumab added. I was on this for 4years. That regimen started to not work and I opted for a stem cell transplant. I am currently only on Pomalyst maintenance. I am mrd negative. At one year post transplant (March) I will have another bone marrow biopsy and if I am still mrd negative I can stop the Pomalyst.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Jan 28 11:41am
In reply to @ginorio "Hi jefe Are you being on chemotherapy? What Rx you Dr used. My Dr want very..." + (show)
@ginorio

Hi jefe
Are you being on chemotherapy? What Rx you Dr used. My Dr want very aggressive treatment with
cyclophosphamide
lenalidomide and daratumumab
dexamethasone
My concern is to much Rx for Myeloma without symptoms (smouldering myeloma). In addition, I have kidney disease stage 3a and my inmune system are compromised.
Any advice?
All these protocols are very scaring.

Thanks for your last response.

Jump to this post

@ginorio You might want to ask your oncologist the reason for being so aggressive if your diagnosis is smoldering myeloma at this point.

Like you, I am also a kidney disease patient. And that should play a factor in how your situation is handled. In my case, my oncologist and nephrologist are in contact with each other. My myeloma is not being aggressively treated because the medications would really subject my CKD to negative responses. I am on dialysis for my kidneys, and the side effects of strenuous myeloma treatment would be a real issue for me, and detrimental to my overall health. This was discussed with my oncologist, nephrologist and me, all of us coming to the same agreement/conclusion. I am on Revlimid and dexamethasone.

Advocate for yourself. I'm here if you have more questions.
Ginger

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cfranz | @cfranz | Jan 29 8:51am
In reply to @pmm "@chgohotdog good to hear that there has been no progression for your husband. I have not..." + (show)
@pmm

@chgohotdog good to hear that there has been no progression for your husband. I have not been diagnosed with MM and instead have a MGUS dx with stable “numbers” from blood analysis and no renal involvement, bone lesions or other symptoms save neuropathy in my feet (which may be attributable to type II diabetes which is very well controlled so I do suspect it’s attributable to MGUS)
I have opted for a conservative watch and wait strategy which includes frequent blood analysis and scans to detect bone lesions, but I have opted to wait on diagnostic tests such as bone biopsy. If there is a change in any of that I will reassess.
My hem/onc physician sits with me and goes over all of this on a regular basis and we see no compelling reason to do anything else at this time. I feel good. If something changes we will take a more aggressive approach. I’m way too stubborn to go softly into that dark night.
It sounds as though your spouse gets frequent follow ups. If he has confidence that his hem/onc doc is experienced in MM treatment and he checks off all the boxes for those telltale signs of progression, it sounds like a best case scenario. For me, and I was a medical social worker prior to retirement, if I progress to smoldering or full-blown MM, I will seek a second medical opinion.
I throw no shade on my very experienced, well-trained hematologist/oncologist. He’s great and I trust him, but I want more than one set of eyes on my treatment strategy, even if it is watchful waiting. I want another 20 or so years of health so I can watch grandchildren and great grandchildren drive THEIR parents crazy. 😂
Wishing you and your husband the best possible outcomes.
Patty

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I question putting off a bone marrow biopsy. My numbers have all been stable with no Myeloma driving events. I was hospitalized for low BP and needed a transfusion ( anemia is from something other than Myeloma. ) I have been smoldering since diagnosis 3 years ago. The hospital did due diligence and did a non be marrow biopsy. I went from 20% up to 50%. So things are moving when my blood levels have been stable. Still considered smoldering but probably will be diagnosed with multiple Multiple Myeloma in the near future.

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1 reply
Mentor
Patty, Volunteer Mentor | @pmm | Jan 29 9:35am
In reply to @cfranz "I question putting off a bone marrow biopsy. My numbers have all been stable with no..." + (show)
@cfranz

I question putting off a bone marrow biopsy. My numbers have all been stable with no Myeloma driving events. I was hospitalized for low BP and needed a transfusion ( anemia is from something other than Myeloma. ) I have been smoldering since diagnosis 3 years ago. The hospital did due diligence and did a non be marrow biopsy. I went from 20% up to 50%. So things are moving when my blood levels have been stable. Still considered smoldering but probably will be diagnosed with multiple Multiple Myeloma in the near future.

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@cfranz I understand your concern. It’s a decision I made with my hem/onc doc based on data that is largely rooted in Mayo’s risk stratification analysis.
I am prone to embrace a conservative approach for as long as it’s reasonable given my blood analysis and in the absence of bone lesions and other symptoms of more advanced disease.
If that changes I will get a biopsy.
We are all different.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5757684/#:~:text=When%20do%20we%20perform%20skeletal,these%20tests%20(Figure%201).
Have a great week.

Patty

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