How to know whether smoldering myeloma or multiple myeloma?

Sounds like she needs treatment. Nothing will make her better, cancer will continue to increase.

I had a similar situation in 2018. I had smoldering myeloma. I started treatment with Revlimid and Dexamethasone. Even with that regimen my numbers went up. I started on Daratumumab a year later. I kept my numbers in acceptable levels for 4years. I then went for a stem cell transplant last spring. My myeloma is in remission. I have never had CRAB symptoms. I am glad I did what I did .

@kediskep, this is what Mayo Clinic says about treating multiple myeloma:
"Multiple myeloma treatment isn't always needed right away. If there are no symptoms, you might have tests to watch the myeloma to see if it gets worse. When multiple myeloma causes symptoms, treatment often starts with medicine. Treatment can help relieve pain, control complications, and slow the growth of the myeloma cells.

Sometimes multiple myeloma doesn't cause symptoms. Doctors call this smoldering multiple myeloma. This kind of multiple myeloma might not need treatment right away. If the myeloma is at an early stage and is growing slowly, you might have regular checkups to monitor the cancer. A health care professional might test your blood and urine to look for signs that the myeloma is getting worse.

You and your health care team might decide to start treatment if you develop multiple myeloma symptoms."
Read more https://www.mayoclinic.org/diseases-conditions/multiple-myeloma/diagnosis-treatment/drc-20353383"

It sounds like you need answers from medical professionals to your very valid questions. I would ask things like:
- Since I have do not have symptoms why do you recommend treatment right away?
- What might progression look like for me if I chose not to do treatment immediately?
- Does my myeloma have any high-risk features?
- What are the goals of treatment for me?
- What are the possible side effects of treatment?
- If the first treatment isn't successful, what will be the next option?
- What is the outlook for my condition?

I'll be interested to know what you learn.

There are definite criteria used to assess whether one has SM or MM. One's oncologist or hematologist/oncologist should be aware of the criteria and whether one has crossed a threshold into requiring treatments.

Hi Jefe
Why the Dr started the treatment right away if you were on smoldering myeloma. Are any advantages to start the treatment early? I have the same situation and I hold the treatment. I decide to visit Mayo Clinic first.

I also had vasculitis. My rheumatologist knew that I needed to be on steroids but also wanted to try cytoxan (which is also used for myeloma). It worked and brought down my myeloma numbers. The rheumatologist felt that I should get treatment for the myeloma and it would also help with the Vasculitis. Is there advantages to getting treatment earlier? I am not sure, but I have never had any bone damage or renal disease and it has been going on six years now since the diagnosis. It might of never progressed without treatment but who knows.

My husband has had MM for over 8 years and still is not on any medication. We have him take a blood test 3 times a year. He developed CLL 2 years ago as well and we watch the numbers with no treatment. He has no symptoms except backaches which he had prior to MM as well.

@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

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.

@chgohotdog Welcome to Mayo Clinic Connect. This is a great story to hear, about your husband. The watchful surveillance is a good way to handle a disease like this. Going onto medications is not for the faint of heart, let me tell you!

Do you know the type of mm he has?
Ginger