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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!

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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!

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You are so encouraging. Thank you.

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

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@freespirit60

I found this from the Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362#:~:text=Experts%20don't%20know%20what,By%20Mayo%20Clinic%20Staff
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?

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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.

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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.

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

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@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. 😉

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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?

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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.

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