Question to ask about MGUS Diagnosis

Posted by bens @bens, Apr 10, 2022

Two months ago I was diagnosis with MGUS, with the fracture of left hip and blood tests. I have met once with a doctor in hematology. Next month will be three months after my first meeting. This is all new and over whelming. I feel fine so my next meeting what questions do I ask and whats next.

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

tsch | @tsch | Jul 27 7:33pm

In reply to @gingerw "@tsch You have had good responses from @wesleym and @pmm2001 For myself, noone else in my..." + (show)

I agree wesleym had a good response. I am sorry that you have MM. There are some possible genetic components I have read, specifically parts of BRCA 1 and BRCA2.
Your progression seems a fast one. My main concern is for my niece who was just diagnosed with MM.

Ginger, Volunteer Mentor | @gingerw | Jul 27 6:39pm

In reply to @tsch "I have just been found to have MGUS, after asking my PCP for recommendations after 60..." + (show)

@tsch You have had good responses from @wesleym and @pmm2001

For myself, noone else in my family has a similar diagnosis. In 2017 I was diagnosed with MGUS, that advanced into SMM [smoldering multiple myeloma] in 2018, that advanced into MM in 2019. Yep, I am an overachiever! I have been on treatment since August 2021.
Ginger

Patty, Volunteer Mentor | @pmm | Jul 27 1:02pm

@wesleym good information! I thank you for those and would add that I found this informative.
https://www.mayoclinic.org/diseases-conditions/multiple-myeloma/symptoms-causes/syc-20353378
Patty

wesleym | @wesleym | Jul 27 9:11am

The causes of multiple myeloma are not known, but many risk factors are. (A risk factor is not necessarily a cause.) So the picture is a little more complex than just "non-hereditary". It's more accurate to say it isn't known to what extent genetics cause MM, but that it is a known risk factor. See, for example (there are many others) https://pubmed.ncbi.nlm.nih.gov/26596855/ If you really want to get into the genetic weeds, see https://pubmed.ncbi.nlm.nih.gov/34888494/

tsch | @tsch | Jul 26 7:16pm

I have just been found to have MGUS, after asking my PCP for recommendations after 60 year old niece diagnosed with multiple myeloma and my sister having had it in 1991 and dying 3 years later (which was the norm then.) My question is do any of you with MGUS or MM have other family members who have been similarly diagnosed? Supposedly both are non-hereditary, but I am questioning that. We are all female and white, not what supposedly typical patient with MM is.

Patty, Volunteer Mentor | @pmm | Jul 10, 2022

In reply to @pmm "Tuesday! They drew blood yesterday. Looking forward to getting that over with for another three months...." + (show)

My Kappa/Lambda ratio advanced a bit but was not alarming to my hem/onc doc because my Kappa was slightly higher but my Lambda went down.
It made me laugh as I was typing this because it’s all Greek to me… Which is okay because it is Greek. 🙂
So all is good with the old wait and see game for three more months.
Wishing everybody peace and may all your health news be good.

omemee | @omemee | Jul 9, 2022

In reply to @gingerw "@omemee There can be several causes of foamy urine. If you have a full bladder, and..." + (show)

Ginger, thank you so much. I truly appreciate your response. This is a
pretty consistent thing. I have to get my pelvis mri on the 22nd. after the
skeletal X-ray found something. I will keep in touch. Take care.

Ginger, Volunteer Mentor | @gingerw | Jul 9, 2022

In reply to @omemee "Do any of you have foamy urine? Would someone explain. ? Have had mgus since 2016" + (show)

@omemee There can be several causes of foamy urine. If you have a full bladder, and the urine is expelled forcefully, this can cause a foamy appearance. Dehydration can be another cause. To experience foamy urine from time to time is normal. But if you have it consistently, you may be seeing the appearance of protein in the urine. This can be caused by kidney issues, as noted in this article from WebMD https://www.webmd.com/a-to-z-guides/proteinuria-protein-in-urine

In the interest of not putting the cart before the horse, I like to look at all possible factors. While I deal with multiple myeloma, I also have kidney issues not related to the myeloma. Some people do indeed have kidney involvement from MGUS/myeloma situations; for me, the drs tested and found they are separate situations.

Reach out to your medical team and get their thoughts on what you are experiencing, based on what you see and the labwork for your particular case. Painting with a broad brush is not a good thing, that is, assuming it must be related to the MGUS.

Let me know what you find out, okay? And feel free to ask away, or reach out for support. I'm only a keyboard away!
Ginger

omemee | @omemee | Jul 9, 2022

Do any of you have foamy urine? Would someone explain. ? Have had mgus since 2016

Colleen Young, Connect Director | @colleenyoung | Jul 8, 2022

In reply to @bens "I feel better reading these post from people that are in the same situation with this..." + (show)

@bens, Mayo Clinic experts often work with local physicians and oncologists for continued cancer care. This may require an initial visit to Mayo Clinic, followed by treatment administered locally. Virtual visits may also be an option.

Here is more information about multiple myeloma care at Mayo Clinic https://www.mayoclinic.org/diseases-conditions/multiple-myeloma/outcomes/gnc-20514923

To inquire about options available to you, I suggest you start by contacting Mayo Clinic appointments for a phone interview with a scheduler. Here's more information on how to get started: http://mayocl.in/1mtmR63

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