Always run down with MGUS

Hi @dazlin, you wrote elsewhere:
"I have a low Mgus…yet my drs reports say, abdominal IGG kappa. I haven't been able to research anything related to abdominal mgus. Could this be a typographical error?? It has been stated in the past 3 reports. Im wondering if it's an a typographical error. How could they determine its abdominal??
If anyone has heard of this, I'd love an explanation. Just to let you all know, YES, I will ask and discuss on my visit in February. Just wondering."

Might the typo have been "immunoglobulin"? Was the result from an abdominal CT scan or abdominal biopsy?

@mitten People can go for many years with MGUS. While the monitoring can be a chore, it is important to do it at the intervals recommended by your medical team. They will be watching closely, seeing that multiple myeloma runs on your father's side, and kudos to you for having that information to give them!

As my oncologist had told me at the beginning, he wanted to wait as long as possible before starting me on treatment, since "once you start, that will be it". I have co-morbidities and he didn't want me to be overloaded.
Ginger

Thank you- much appreciated. I have some bone pain, but nothing to scream about. Multiple myeloma runs on my father's side. Diagnosed with MGUS/ Lambda subtype since 5/2020, both oncologists want to see me every 3 months since 2020. Things are slowly progressing as they say and is approaching the 10% mark evidenced from BM biopsy. Hopefully someone can give me feedback as to what I can do or questions to ask my oncologists. Thank you again.

Mitten

Hi @mitten, I wanted you to be able to connect with others so they could help you with suggestions of what to ask your doctor, so I moved your post here: Always run down with MGUS: https://connect.mayoclinic.org/discussion/always-run-down-with-mgus/

Reference: "Can MGUS make you tired? Your doctor is likely to watch for signs and symptoms such as: Bone pain. Fatigue or weakness. Unintentional weight loss" --- Monoclonal gammopathy of undetermined significance (MGUS): https://www.mayoclinic.org/diseases-conditions/mgus/diagnosis-treatment/drc-20352367

Besides energy, are you having any other symptoms mentioned above?

Feeling fatigued daily. Diagnosed with MGUS-IGG Lambda. MM runs in my family. I have to see my oncologist every (3) months. My platelet counts have been slowly declining since diagnosis in 2020. It's now 194, still in normal range, but declining. BM biopsy shows hypocellular bone marrow. Is there anything that can be done to increase energy? What questions should I be asking my oncologist?

Mitten

Thank you - much appreciated!
Mitten

@mitten Please understand that less than 10% of SMM patients evolve in to multiple myeloma in the first year. Known for being different, guess I had to jump on the bandwagon ;)) Don't think of it in your future.

Remember, each person has their own journey. Response to a medication, level of disease, additional health concerns, treatment options, etc. all play a part. Here on Mayo Clinic Connect, we get to share our experiences and offer support to everyone. Anytime you have a question or concern, feel free to reach out!

Here is a link from Mayo Clinic about multiple myeloma: https://www.mayoclinic.org/diseases-conditions/multiple-myeloma/symptoms-causes/syc-20353378
And here is a link to the International Myeloma Foundation, which has a wonderful resource base. Very easy to get lost "down the rabbit hole". Under the "What is Multiple Myeloma" tab, go to "Newly Diagnosed" which will give you information on different levels. https://www.myeloma.org
Ginger

Hi Ginger,
Wow, SMM morphed into MM in less than a year. Thank you for your feedback and I have decided to continue 3 months. I do visits 1-2 times to Dana Farber in Boston, MA and see my local every 3 months. My cell % in my bone marrow biopsy is approaching 10% so I am still in MGUS stage. Thank you for sharing - this is helpful. No other questions I can think about at this time. I will be praying for you.
Mitten

@mitten Good afternoon, and welcome to Mayo Clinic Connect! I'm glad you found us, and look forward to hearing your experiences.

Follow your oncologist's guidelines, is my suggestion. While it may be inconvenient for you, you want to be sure your case is being followed. If you live a distance away, speak with your team about telehealth, and if that would be okay in your case, perhaps every other time?

I live 2 hours away from my oncologist. While every three months was not a big deal, I am now doing monthly visits. My SMM morphed into multiple myeloma in less than a year after the Nov 2019 diagnosis. I guess I am an overachiever, as that happens in about 10% of the cases! In August 2021 I started a low-dose chemo plan, meant to reduce my IgM kappa slowly, since I also have kidney disease not related to this multiple myeloma.

There is a protocol that your oncologist will prefer to follow. Trust him/her if you have until this point. If you can do a telehealth every other time, and have the blood work done, do that if they will agree. Any other questions for me?
Ginger

Hi Ginger,
Sorry to hear about the progression to SMM. I was curious do they consider you for any oral treatments or something to slow down progression? I'm still in the MGUS stage diagnosed in 5/2020. I see my oncologists every quarter or 3 months. My FLC ratio went up to 2.22 my diagnosis is MGUS with lambda subtype. MY IGG is 2200 down from 2300 and shows M -spike. I would love to just go every 6 months, but oncologist is not recommending that at this time. I thought after 1yr diagnosis they evaluate every 6-12 months? Do you know anything about that?

Mitten