Smoldering Multiple Myeloma and symptoms

Good morning folks,
I have an update on what is next for me. A clinical trial is reopening from Regeneron is supporting this. It’s a bispecific, Linvoseltmab, for Non high risk Smoldering Multiple Myeloma and High Risk MGUS. I have a consent appointment scheduled the first week of November with a full day of testing, labs, images, biopsy etc the following to qualify. Treatment will begin in December. I am grateful that I am able to consider and plan to participate as well as worried, and concerned. It’s has not been simple to arrive at this moment. This treatment is FDA approved and used in 4th or later line of treatment with good results and the research is working to ascertain if it might be even more effective as a first line, early in the progression. At least that’s what I understand from my research. I will do my best to share the experience with the community in the interest of supporting this trial and the learning as best I can.
For my baseline I am actually doing much better than I was back in May. I continued to decline with some challenging symptoms, extreme fatigue, plenty of neuropathy in extremities, neck and especially feet, walking was difficult. I managed to travel with family, becoming more active, and spending 10 days at elevation in the mountains, and began to feel much better. I have been working out consistently during the moment of feeling able to and am much stronger than I was, working cardio, strength training, swimming with more rest between workouts and have maintained this for 2 months. It’s strange to consider going into treatment when I am feeling much better and it’s not so easy to remember the discomfort and fatigue that was swallowing me up last may and June. I have two friends who are both working thru translplants and moving into maintenance and they are both doing well. I guess one of the ways I have organized this moment is to hope that if there is a chance for me to find a route that would not have to include such chemo down the road. I will also be getting Dex to protect my system from the more toxic effects. Back in the day I have used Dex while mountaineering for high altitude. It did rev me up, and I do get irritable on it but it makes sense to help my body stand up to the carnage that will ensue when my T-cells get special glasses and go on a killing spree….thank you for this community and I am hopeful that my posts will be useful for folks and their journey. I send my greetings to each and every person here. I will let folks know if I qualify sometime in November. They were really helpful and did adjust the schedule to allow me to travel to South Africa to connect to a community of artists that I hope to collaborate with in the future which I am able to imagine at this point. Thanks
Brian

@erictd welcome to Mayo Clinic Connect. Although this paper is over a decade old at this point, I found it useful when I pondered many of the same questions.
https://www.mayoclinicproceedings.org/article/S0025-6196(11)60236-X/fulltext
The hardest part of MGUS for me is dealing with the Limbo of not knowing the if, when and how the disease will progress.
My hem/onc doctor reassures me at every appointment that in the unlikely event there is progression, the advances in treatment over the past decade give me excellent odds of recovery.
That helps, of course, but you do feel as though it hangs over you.
I’m so sorry that your daughter suffered from this disease. It’s not something that is routinely tested for and is found incidentally when they are looking for something else.
I’m glad you found our group in Connect because it feels good to connect with others. Each story is unique and although my path may be different from yours and our other members, the support is comforting.
I hope you will share whatever information you find, will you?
Patty

@pmm absolutely will share. not quite sure which thread to share on!!! it's a journey right?

one thing that was frustrating was attending many seminars and threads where many promising treatments are discussed, only to see none of them effective for very long for my daughter. we really thought the bi specifics and t cell transplant would work, but her marrow was too exhausted to be able to utilize those protocols.

they are obviously still learning

@maddogstormy please let us know how this goes for you. Best of luck, Patty

@erictd welcome to Mayo Clinic Connect. Although this paper is over a decade old at this point, I found it useful when I pondered many of the same questions.
https://www.mayoclinicproceedings.org/article/S0025-6196(11)60236-X/fulltext
The hardest part of MGUS for me is dealing with the Limbo of not knowing the if, when and how the disease will progress.
My hem/onc doctor reassures me at every appointment that in the unlikely event there is progression, the advances in treatment over the past decade give me excellent odds of recovery.
That helps, of course, but you do feel as though it hangs over you.
I’m so sorry that your daughter suffered from this disease. It’s not something that is routinely tested for and is found incidentally when they are looking for something else.
I’m glad you found our group in Connect because it feels good to connect with others. Each story is unique and although my path may be different from yours and our other members, the support is comforting.
I hope you will share whatever information you find, will you?
Patty

I was introduced to multiple myeloma (MM) when my 53 year old daughter was diagnosed with full-blown MM. I, at 79, was diagnosed with MGUS about 7 months later, after taking blood tests for what I thought might be neuropathy, knowing that my daughter had similar symptoms.
To make a two year story shorter, by the time my daughter was diagnosed she was experiencing extra medullary effects of myeloma, had a compression fracture of her vertebrae and bone lesions throughout her body. It was the compression fracture that got her attention. It was fortuitous that she and her family had moved to within 50 miles of the Jacksonville Mayo Clinic 6 months prior, and so they treated her for two years, during which time she went through 9 lines of treatment, each one becoming refractory, including T cell transplant. She had been diagnosed as triple risk, meaning she had three of nine risk-markers. So the prognosis was never good, but she fought valiantly for those two years. There were many lessons learned along the way, and we - her parents – were lucky to spend about a third of our time with her during this period.
As indicated above, I was diagnosed with MGUS, igA, Kappa, and put on a schedule of visiting an oncologist every 4 months. Within a year I had had a pet scan, mri, skeletal x-ray scan, and a bone marrow biopsy. Unlike my daughter, I had no risk markers identified. As my numbers slowly progressed – in just 18 months - I got pushed into the smoldering myeloma category, primarily because bone marrow showed a greater than 20% occurrence of myeloma. However CRAB criteria have not been fulfilled yet. I am about to have my second pet scan.
What is curious to me and should pertain to the larger myeloma community: What is the progression of myeloma? Does everyone start at MGUS, and then proceed to smoldering, and then (maybe) to multiple myeloma? It’s a hard question because you do not feel the symptoms until something like a bone breaks, or extra-medullary shows up. Or you just luckily have a blood test which alerts you to the possibility. So, did my daughter have MGUS and SMM for years before her diagnosis? The fact that once we discovered it, it was virulent and very aggressive and her numbers would peak very quickly when she went refractory, I think probably speaks to her high-risk category. So, I would think that there are different rates for the progression, but I also think that for everyone there is a progression; i.e. - you don’t just start out with multiple myeloma. And this speaks to the needs that have been expressed in many of these postings that we need a method for identifying the beginnings of myeloma much earlier in the process, when we might therefore have the opportunity to slow it down before it does a lot of damage.
In my personal case, I’m very analytical and have trend plots for all my myeloma numbers; they are slowly creeping upward. What would be great to find out is if there are any data that guesstimates prognoses based on the number of risk factors one has.