Stopping Myeloma at the MGUS Stage

I forgot to include that I now am immunocompromised which I believe is some of MGUS’ dirty work. I will have to wear a mask in groups forever and can no longer eat indoors. MGUS is far from a benign state. Let’s do something to at least help others coming behind us.

Agree that just addressing MGUS as soon as detected and eliminating it was my thought! I am 65 and diagnosed accidentally 3 years ago. I actually have up to 4 tiny spikes which are below a measurable level. I have been stable thankfully.
I understand that the research is focused on finding effective treatments for the MGUS patients most likely to progress or cause problems. The current treatments aren’t benign so more harm could come if everyone was treated.
I’m hopeful for future research!

Me, too (research). But here’s the thing, MGUS of 20 years can somewhat ravage a body meaning it can make life unpleasant enough. I just wish there would be trials with MGUS patients perhaps titrating myeloma drugs to smaller amounts—say three groups of MGUS patients at ¼, ⅓, and ½ regular doses for example. Or even smaller fractions. Of course, the drug companies wouldn’t want to find something that could eventually cost them $$$$.

I agree. I am going in for first appointment with oncology because my rheumatologist noticed higher protein levels in blood. Actually my GP saw spike, but saw no need to be concerned even though my sister died last year from multiple myeloma. They kept telling her she had osteoporosis till her bones were breaking. Very sad, i don’t want to go down that path.
There must be something we can do before it’s worse

I am sorry your sister died from myeloma. My grandmother also died of myeloma when she was 89. Of course, back then—80’s, I think—melphalan and radiation were the only txs. I finally found a physician at Creighton University who headed up a study of familial myeloma. But still most physicians today don’t give any credence to the significance of a family member dying of myeloma. Sometimes I think the field of medicine is like religion—fixed beliefs and excruciatingly slow to change.

@carolesg It's called multiple myeloma for a reason. There are several different types of myeloma. And once one type is handled, another type may pop up. And, there are many different types of treatment modalities based on the type of mm a person may have. My treatment is not what my friend takes.

Not trying to downplay the idea and significance of getting ahead of everything, just wondering how they would handle all the variables....
Ginger

I have IgA kappa light chain MGUS (8 years). My kappa/lambda ratios have gradually been creeping up (13) , but not at biopsy stage yet. Meds can have cascade effects on health so I just try to manage mine through diet, exercise, and the usual stuff doctors yammer about. I do take 1 gm of bioavailable curcumin 2x/day, just to see if that has any effect on suppressing the kappa curve (not all lab rats are rats). Various brands, mine is Qunol. Absorption rates of curcumin from turmeric are miniscule, so modifying the curcumin by adding a lipid (fat) to it for better GI absorption may help. Supplements aren't regulated by the FDA, unfortunately. https://pubmed.ncbi.nlm.nih.gov/27025786/ One can search for peer-reviewed papers using "curcumin TNF" , or MGUS. TNF is tumor necrosis factor

@carolesg
It is certainly an interesting question. When I was diagnosed in 2021, I read about MGUS etiology. Add to that confusion (I am not an older, black male), as @gingerw reminds me, there are also so many variables that it was impossible for me to have any lightbulb moments about why I have joined the MGUS ranks.
So I attempt to live a healthy lifestyle. I have given up alcohol save an occasional glass of wine when dining out. I eat healthy, try to avoid sugar and stay active.
I support wholeheartedly the quest to find a cure for Multiple Myeloma. They are working hard to find it and the gains that they have made in the past decade are very exciting.
Yes, I hope never to progress to smoldering or multiple myeloma but if I do, I am confident that there is treatment available that stems from the research to combat this disease.
If they can find a cure for Multiple Myeloma, can MGUS mitigation or cure be far behind?
I am also taking a modest dose of turmeric/curcumin which is recommended by other members who have found it helpful in stabilizing numbers. My doctor says that the research is inconsistent, but had no objection to adding it to my daily regimen. In your reading, have you discovered any recommendations for MGUS patients that you find promising?

Interesting thoughts on mgus treatment, my husband was diagnosed with mgus 6 years ago at Mayo Phoenix. He has been monitored constantly, with blood work and bone marrow biopsies and now 6 years later has Myeloma at the very beginning stages and will start treatment. My understanding is that there is no treatment at this time that will stop the progression from MGUS to MM, but the constant monitoring every 3 months caught his at the beginning stage. That is far better than many who only catch it later in the game.

You are fortunate your husband’s Myeloma doctor insisted on bloodwork every three months. I have been monitored by Dr Ola Landgren, a leading myeloma researcher world-wide, and he only checks bloodwork annually. With Myeloma it is critical to catch progression at the earliest possible moment as you have noted. When I change to a local Myeloma doctor this month, I hope to convince him to monitor bloodwork semi-annually rather than annually. Best wishes to your husband.