1. < Blood Cancers & Disorders
Profile picture for sandramgus

Diagnosed: MGUS

Posted by sandramgus @sandramgus, Jul 29, 2024

Hello everyone, I was diagnosed with MGUS after a routine physical, and my doctor made it sound like it wasn't that serious, but my (favorite) aunt died of multiple myeloma about 20 years ago. So, while I'm glad we caught it early, I have so much to learn. I'm still grieving the death of my mother (from a year ago) and it's a bit much to get this diagnosis after watching her die (she died from ALS.) I'm hoping to find some resources and advice here. Thank you all!

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

Profile picture for freespirit60
freespirit60 | @freespirit60 | Aug 4 2:53pm
In reply to @kathygrentzenberg70 "I was diagnosed with MGUS at 47. I am now 72. My numbers remain fairly consistent..." + (show)
Profile picture for kathygrentzenberg70 @kathygrentzenberg70

I was diagnosed with MGUS at 47. I am now 72. My numbers remain fairly consistent with some fluctuation. Just saw my oncologist. He said I'm doing great. I don't take supplements but have tried to reduce the pesticides in my food (since some research sees a correlation between pesticide exposure and MGUS). So I filter my water and buy only organic fruits and veggies. I go to a market that also has organic meats, milk and coffee. I eat no red meat. Helpful to check which foods have the most pesticides (i.e. apples). As you can see I've had it for a very long time. Of course, I have no idea if it helps but I like supporting local farmers and trying to keep my pesticide intake to a minimum. Nice have this space to share!

Jump to this post

You are so encouraging. Thank you.

REPLY
Profile picture for Patty, Volunteer Mentor
Mentor
Patty, Volunteer Mentor | @pmm | Aug 4 4:13pm
In reply to @freespirit60 "How does pesticides affect MGUS?" + (show)
Profile picture for freespirit60 @freespirit60

How does pesticides affect MGUS?

Jump to this post

@freespirit60

I found this from the Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
And a couple of other sources.
https://pmc.ncbi.nlm.nih.gov/articles/PMC2710931/
https://ashpublications.org/blood/article/144/Supplement%201/7593/527088/Impact-of-Pesticide-Exposure-on-the-
Pesticide exposure is problematic for a multitude of reasons.
Can you tell me a little bit more about why you are asking about pesticides and MGUS?

REPLY
1 reply
Profile picture for dtrgran59
dtrgran59 | @dtrgran59 | Aug 8 2:46pm
In reply to @maddogstormy "Hello. I am new to SMM since march 25 and have my first follow up appointment..." + (show)
Profile picture for maddogstormy @maddogstormy

Hello. I am new to SMM since march 25 and have my first follow up appointment with the doctor next week. MRI marrow scan was negative thankfully. I am having increased burning neuropathy in both hands and some thing new that feels like a very low level deep ache throughout my body. As though my bones were swollen. And I am extremely fatigued. I have been offered a clinical trial for Linvoseltamab to begin treatment. The MGUS is now “significant”. Smoldering is a strange word and I can’t help but imagine I am slowly falling deeper into this new kind of hell. I have so much and so many supporting me. Great doctors. Loving family and friends. Getting educated and maintaining balance is super challenging. I did have a great conversation yesterday with someone at MMRF about beginning treatment so early. It is really helpful to read all of these threads. I remember the years I had MGUS and sure wish I was still there and I remember one thought I had. Enjoy this while it lasts. Just in case it does progress. I can tell my self the same thing now. Enjoy this while it lasts. Just in case things change.

Jump to this post

I’m an 84 yr old widow & just been diagnosed with MGUS ~ I’m in process of trying to “educate” myself & understand this diagnosis & all that’s involved.

I cannot say I have many supporting me as I have not shared this with any of my children or other family members~ my reasoning may be incorrect but at this point I feel like all they’ll do is think of all the bad ~ just automatically think cancer, which I know is not now!

I’m compiling a list of questions for the hematologist/oncologist & try to understand the test results he has ordered.

I look forward to being able to share & learn from others.

REPLY
Profile picture for Patty, Volunteer Mentor
Mentor
Patty, Volunteer Mentor | @pmm | Aug 10 8:19am
In reply to @freespirit60 "Because I have someone that comes and spread pesticide around my house. Should I stop?" + (show)
Profile picture for freespirit60 @freespirit60

Because I have someone that comes and spread pesticide around my house. Should I stop?

Jump to this post

@freespirit60 I can’t answer that question as I’m no expert, but I have stopped using pesticides. My decision is based upon worry for the pollinators coupled with my desire to cut out as many chemicals in my life as possible because it seems that every day we learn of new health risks. This decision makes it mosquito alley around my house, but bees and butterflies are bountiful. I even have a little sign in my front yard, informing the city that they are not to spray when they get to my property. They dutifully turn off their fogger until they pass by my border.
I’m sure my neighbors think I’m a little nutty. But that’s OK. Gives them somebody to talk about. 😉

REPLY
Profile picture for amberl99
amberl99 | @amberl99 | Aug 10 10:24am
In reply to @freespirit60 "Because I have someone that comes and spread pesticide around my house. Should I stop?" + (show)
Profile picture for freespirit60 @freespirit60

Because I have someone that comes and spread pesticide around my house. Should I stop?

Jump to this post

Appreciate the question. I just directed my pest company to skip this time while I send the chemical information to my MM specialist (I have SMM). Logic tells me yes, stop. So what if bugs eat up my house if I’m not around to see it? Now you know how my mind works! But I did ask and receive the document listing the chemical the pest company uses and will send it to my specialist. I’m not sure she will know as there’s so much about chemicals we don’t know the long term effects of.

REPLY
1 reply
Profile picture for barbarian1
barbarian1 | @barbarian1 | Nov 7 9:47am
In reply to @lbhayes "Hello, I was diagnosed one year ago. I recently had my blood draw, it is only..." + (show)
Profile picture for lbhayes @lbhayes

Hello, I was diagnosed one year ago. I recently had my blood draw, it is only drawn once a year. My numbers had went up a little, but the doctor did not think it was cause for concern. I’m concerned. I have hip pain that has lasted for over a year. My doctor says I need a new hip. My kidney function is down to 33, and according to my lab work I have anemia. I have type 2 diabetes, and high blood pressure. I have not had an issue with either in over two years or longer. I just don’t think yearly testing is enough. I now have a nephrologist, I can’t wait to see what he thinks about all of this. Is my numbers up because of my low kidney function, or is my kidney function low because of my numbers? I can’t shake this feeling, that I have a reason for concern.

Jump to this post

@lbhayes pray for healing!🙏

REPLY
Profile picture for vivipap20
vivipap20 | @vivipap20 | Nov 12 8:57am
In reply to @sandramgus "Hi Patty, thank you so much for sharing your detailed experience. I don't take it lightly...." + (show)
Profile picture for sandramgus @sandramgus

Hi Patty, thank you so much for sharing your detailed experience. I don't take it lightly. I had to start avoiding google too, and it was just too much information to sift through.

Like everyone else, they found out I had MGUS because of something unrelated; in my case it was just my annual check up. Since I'm at the beginning of this my next appointment is in 3 months. After that I suppose my doctor will have me come every 3-6 months. I don't have a hematologist/oncologist at this point. But I'm trying to get all the information I can so that I can go into this prepared.

Ironically, my longest illness has been migraines, for over 40 years. We *just* got my migraines under control about 2 years ago. I went from having 3-5 migraines a week to 1-2 a month. This is a *huge improvement* because I work full time and I'm always running around with my kids.

Now that MGUS has been diagnosed I'm really hoping that it doesn't become multiply myeloma, because I'm tired of being in pain and tired. I can't imagine my spine and skull having pains. It's scary to me.

Thanks for writing!

Jump to this post

@sandramgus
HI patty hope you are well z
I am recently diagnosed and it is very subtle now they could not even detect M spike . All this is new to me and I am very scared . Can you share for how long do you have this ? The bone spots found in your scan means cancer ? .
Sorry jsut want to understand better .
Thanks so much

REPLY
Profile picture for oneonly
oneonly | @oneonly | Nov 13 9:01pm

Hi... Chin up!! I have also been diagnosed in October 25' with MGUS. I lost my father in January of 2021 to MULTIPLE MYELOMA; this of course is very concerning to me. I have had an "M" spike, and a paraprotein for 9 months. I have had IVIG treatments, to no avail. I also have severe copper deficiency, in which I get copper infusions for weekly. This entire process started with waking up one day, not being able to walk. Legs totally numb, and severe pain. KEEP UP ON WHAT YOUR BODY IS TELLING YOU, ALWAYS GO FURTHER IF YOU BELIEVE SOMETHING IS NOT CORRECT!! Keep up with your appts, and dr's, your body..... Let the BIG MAN HANDLE THE REST THROUGH PRAYER!

REPLY
1 reply
Profile picture for smiles1951
smiles1951 | @smiles1951 | Nov 14 10:09am

Get a second opinion. UW Health, Madison, Wisconsin, has Dr. Natallie Callandar, an Elite doctor and Multiple Myeloma Specialist. You have to not give up but search for answers.

REPLY
View MoreView Less
Please sign in or register to post a reply.