Always run down with MGUS

Posted by dazlin @dazlin, Feb 13, 2020

Not really sure if its related, but I get super wiped out after a couple hours of chores, or just shopping, my entire body aches badly. I have so much drive, and love getting everything done, love cleaning, cooking, gardening, and simply enjoying everything in order and organized. Seems lately, more so than the last 2 years since I was diagnosed with MGUS, once I get tired doing whatever, I'll come down with cold sores by next day, usually in my nose, sometimes on my lips. I now have meds for it. Then I'm wiped out for a few days. I dont let it stop me, but I'll admit I'm uncomfortable doing my usual. Drs continue to monitor my labs, and nothing really has progressed. I'm not anemic, and most bloodwork is within normal range. My IGM'S are very low, said to be crowded out by the abnormal cells. The IGM'S are the main white blood cells to fight infection, so I'm at risk, but I never get sick, or run fever, thank God. Just ALWAYS run down. I'm disappointed, and I always feel like even a trip to see my new baby grandson about an hour and 20 minutes drive, will leave me very tired, and run down next day. I actually plan to keep my outings short. I had a bone marrow biopsy done last june...cells are 4% IGG KAPPA...no treatment at this level. Does anyone here experience anything similar to me, with MGUS, and if so, does anything help? I think I'm starting to feel bit disheartened because I'm so active and enjoy doing alot, but my body quits, how sad.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Ginger, Volunteer Mentor | @gingerw | Feb 14, 2020

In reply to @dazlin "@gingerw ...also, I was wondering if you had a bone marrow biopsy...only if you don't mind..." + (show)

@dazlin Yes, I have had two bone marrow biopsies. One was in October 2017, one in October 2019 by two different doctors. In the 1st one they diagnosed the MGUS, but the fine print said it was considered low level of Non-Hodgkin's lymphoma, which the doctor said was MGUS. I had the 2nd done by a Mayo Clinic trained oncologist here in my new state. I also had a kidney biopsy done because we had to make sure my kidneys were not being affected by the multiple myeloma at this point. I had no issues with bone marrow biopsies, no complications at all. If you have questions on that I know there is another discussion that talked about bone marrow biopsies, and I can look it up tomorrow when I'm on my big computer.

dazlin | @dazlin | Feb 15, 2020

In reply to @gingerw "@dazlin Yes, I have had two bone marrow biopsies. One was in October 2017, one in..." + (show)

@gingerw , good your in Mayo Clinic. I am too, here in Florida. I'm very pleased with the care, and I really like my oncologist. Seems they assign a nurse, or P.A to discuss labs with me, so I don't always see my dr. I could always ask to see him afterwards. Last time, everything was well explained, so I glad to leave and didn't ask to see him. My next visit in April again will be with another P.A...I really don't like it, but I'll most likely ask to see my Dr to let him know how I'm feeling.
I've had a bone marrow biopsy done in June, so no questions about that, I gave some details in my original post here, but thank you.
I did pretty ok...not a very pleasant experience, but bearable. Only thing, I probably wasn't completely healed when I decided to give my 70 lb Lab a bath...I lifted him into the tub, and that night I was in pain that lasted for 2 more weeks. My fault.
Keep me posted on next visit to dr...I hope for best for you!

mitten | @mitten | Apr 1, 2022

In reply to @gingerw "@dazlin My MGUS advanced into smoldering multiple myeloma officially in Nov 2019, so I am on..." + (show)

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

Ginger, Volunteer Mentor | @gingerw | Apr 1, 2022

In reply to @mitten "Hi Ginger, Sorry to hear about the progression to SMM. I was curious do they consider..." + (show)

@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

mitten | @mitten | Apr 1, 2022

In reply to @gingerw "@mitten Good afternoon, and welcome to Mayo Clinic Connect! I'm glad you found us, and look..." + (show)

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

Ginger, Volunteer Mentor | @gingerw | Apr 1, 2022

In reply to @mitten "Hi Ginger, Wow, SMM morphed into MM in less than a year. Thank you for your..." + (show)

@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

mitten | @mitten | Apr 10, 2022

In reply to @gingerw "@mitten Please understand that less than 10% of SMM patients evolve in to multiple myeloma in..." + (show)

Thank you - much appreciated!
Mitten

mitten | @mitten | Jul 17, 2022

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

Amanda Burnett | @amandaa | Jul 18, 2022

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?

mitten | @mitten | Jul 18, 2022

In reply to @amandaa "Hi @mitten, I wanted you to be able to connect with others so they could help..." + (show)

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