Smoldering Multiple Myeloma and symptoms

@maddogstormy
Good morning.
I am now past cycle 1 and have had two monthly doses and there are three remaining. So much to share and consider. I do have a question for folks. How have you handled deeply suppressed iga and igm immunoglobulins? I am receiving Privigen IV infusions to support IGg and that is a big help. From my understanding the iga and igm are my front line defense against Respiratory viral and bacterial infections. I am concerned and have really limited my exposure to public spaces and gatherings and I also know isolation is not helpful either.
Many thanks.
B

Hi again.
I received my last dose of linvoseltamab on June 2nd in a trial at Dana-Farber for smoldering multiple myeloma. IVIG (Privigen) infusions are scheduled every four weeks, and I’m now starting recovery now day 32.
This medication affects everyone differently, and my experience is just one. It took my M-spike and free light chains out of detectable range. It also had an enormous off-target impact on much of my immune system ie my IgA and IgM are both negligible. I tried to keep working in person until I got too sick from common colds and respiratory infections.
One thing I’d flag for others: I wish they had started the IVIG infusions four weeks earlier than they did. Insurance was challenging and mine were delayed about five weeks. If you’re going into this, it may be worth asking about immunoglobulin support early.
I would not change my decision to participate. I can see a longer horizon than I could a year ago, when I could barely walk.
I’m finding recovery to be a complicated and delicate process, progress and regress, sometimes in the same day. The intense fatigue arrives randomly and can be hard. I’m also blessed with a loving family and community, and I do my best to stay connected as I move through these changes.
Thank you all for this space to share a bit of my story. I’m inspired by you.
Brian

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.

@maddogstormy
Did you have side affects from the IVIG? How long do you have to be on a drip?
My multiple myeloma is stable and I take a monthly chemo to maintain my condition. However my immune system is severely compromised and the doctor has suggested IVIG if I start getting a lot of infections.

@maddogstormy
I am also enrolled in the Dana Farber clinical trial 24-135. Just received my second step up dose of Linvoseltamab 4 mg along with the steroid and antihistamine.

I have intermediate SMM with gain 1q and monosomy 13. IGG Lambda. M-spike 1.8 and flc ratio of 30.1. Plasma cell percentage 10-15%.

Randomized into 200 mg track. One more step up dose, 25 mg, next week before my first full dose, 200 mg, on 8/10.

Just curious, what did you find most challenging about your experience.

@sb428 When I hear "if you start getting a lot of infections" I think about someone who said "that's like promising to get you a car with brakes after you've been a couple of car wrecks when they know you live in the mountains."

@maddogstormy
Did you have side affects from the IVIG? How long do you have to be on a drip?
My multiple myeloma is stable and I take a monthly chemo to maintain my condition. However my immune system is severely compromised and the doctor has suggested IVIG if I start getting a lot of infections.