MGUS and Chemotherapy

I have kappa light chain MGUS. My IgA, IgM, IgG and other bloodwork have been ramping up for 5 years, but it hasn't morphed yet to multiple myeloma. I have neuropathy from it, no bone lesions yet. I found a few medical papers in ResearchGate on MGUS and chemo. Researchgate is a scientific paper share site; it is free, but you need to sign up. I hope that your doctors can find a treatment that works and doesn't cause such hardship.

Thank you! Our cases seem very similar….bone marrow biopsy was negative, I also have neuropathy…..

They have you on chemo with a negative biopsy? Are the meds for symptoms associated with MGUS? I collect autoimmune diseases (not a fun hobby) but I can limit them with diet (celiac), exercise, and getting enough sleep (controlling stress). I do a lot of crafts to maintain coordination in my hands, legs (neuropathy). My neuropathy is not associated with pain so it is just irksome. I take tumeric/black pepper in case that helps slow MGUS progression and I got a Reclast infusion for osteoporosis (but also may help with calcium retention and MGUS). Reclast makes me ill for a few days, but it lasts for a couple of years.

Happy Friday! Yes….steroids helped, specifically for the kidney failure, but after the tapering off of them I’d have another episode. So oncology decided to try chemo and antibody treatment because keeping me on steroids would cause other medical issues. So far, the side effects of the chemo have been manageable….my fear is if this doesn’t work what would be left to try. I’m glad your treatments seem to be working for you, especially the natural regime you follow. Perhaps I’ll look into that was well…..

Hello,

I was just diagnosed with MGUS. I am 42 yr old white woman.
Weight loss 30 lbs
Skin rashes
Itchy skin
Soaked sweating at night
Enlarged tongue
Very fatigue
Neuropathy
Bad hip and back pain
Blurred vision
Ringing in ears
High heart rate when doing nothing
Dizzy
Bouts of diarrhea and constipation
Kappa/lambs ratio 10.5 (high)
Bence Jones in urine
M-spike 2
Bone marrow showed 5% plasma cells
IGA 953 (normal under 425)

Docs thought it was Amyloidois but they can’t see any in my fat aspirate or bone marrow.
Can you tell me why your doctor decided to do chemo for MGUS? Did you have any of these issues? Would love to know more about your numbers and issues.
I can’t live like this and believe there is more my doctors can do. Want my life back.
I was a fitness freak for years then over the last year all this started happening.

Thank you! 🙏

@oliviahutson Good morning and welcome to Mayo Clinic Connect! I’m really sorry to hear about your diagnosis. It can be a real bummer to get a disease that stops you in your tracks. I know because i used to love to bike ride and now I can’t.
https://www.mayoclinic.org/diseases-conditions/mgus/diagnosis-treatment/drc-20352367. When you read this information from Mayo Clinic, you’ll see that some doctors recommend chemotherapy and others don’t.
Let’s ask these members if they can help @2012can. @dianegrant @gingerw @pmm.
Ask the docs, on your next visit, ‘why did you choose this treatment.’ Sound like a good idea?

Thank you for responding! I see my local hematologist today. I was at Mayo all week last week. My Mayo doc just said “best of luck to you”. I was shocked.
I wonder why some with MGUS require chemo and some do not.

Thank you again! 🙏

Hi @rae77 @oliviahutson @kayabbott and @becsbuddy. I moved this discussion to the Blood Cancers & Disorders support group where there are many members talking about MGUS, smouldering myeloma and multiple myeloma.

Click this link to see all discussions related to MGUS https://connect.mayoclinic.org/search/discussions/?search=MGUS

Olivia, the most typical, common treatment for MGUS is “watchful waiting”. I actually prefer the term active surveillance as watchful waiting can seem like inaction. Active treatment like chemo is not generally administered in the early stages of MGUS as the disease may not progress or progress very very slowly.

Olivia, MGUS doesn’t usually cause symptoms. How was it discovered for you?
Rae, what type of chemotherapy are you on?

Thank you Rae. I am not on any chemo. Went in because I wasn’t feeling good at all and couldn’t work out because of bone pain, high heart rate etc. Because my labs starting coming back not normal they sent me to a hematologist. My local hemoc doc thought it was Amyloidois. I went to Mayo and they are saying no. Just MGUS. But I am not well.
I go back to Mayo for multiple biopsies of my GI track in nov.
There is one test Mayo is waiting to get back called the FISH test as I came back with high risk for FISH.
I am just so frustrated because I have so many symptoms and nobody is giving me real answers to get better.

Hi Colleen. They have me on Velcade and Cyclophosphamide, and I also get Daratumubab infusions. My Hematologist actually consulted with the Mayo Clinic regarding my treatment, and this is the cocktail they came up with. They had to try something else to prevent another hospitalization for kidney failure. Thus far, it seems to be working. I have one more cycle of chemo left and I’ll be done as long as my blood work is good. yay! But I’ll still continue to get the Dara for another 6 months, I think. I keep hearing how unusual my case is, so it’s no surprise that my treatment plan has followed suit.