1. < Blood Cancers & Disorders

Does anyone else have MGUS?

Posted by mjlandin @mjlandin, Jun 4, 2022

I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?

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lynne756 | @lynne756 | Dec 17, 2022
In reply to @raye "Hi, MGUS and Beyond, friends. @Lynne756, welcome! Glad you mentioned Ferritin. Mine is currently 11 and..." + (show)
@raye

Hi, MGUS and Beyond, friends.
@lynne756, welcome! Glad you mentioned Ferritin. Mine is currently 11 and I don’t understand why it’s low, yet other iron-related scores, Hematicrit and Hemoglobin, are often elevated. Just made a list of the declining ferritin scores in their consecutive dates in my contact list, then made an edited screen shot of this to send to my hematologist.

He advises seeing me every six months but I make appointments with him every three months. My decision due to concerns about risk factors. I’ll see him Tuesday when I hope to get greater understanding of the whole gestalt of various out of range blood test results. Googling each just feels like being in a dark room with a sleeping elephant while only being able to touch its isolated parts. What are the implications of this IgM Kappa MGUS diagnosis with its odd other blood tests? Hope to learn more about it this time while being glad it has been fairly stable but slowly elevating since 2015.
Ginger, your commentary is always helpful. Grateful hugs!

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My CBC was normal....but only if my ferritin was checked....a year had passed....a long time to be living w/low ferritin. I don't understand why my ferritin was so low and I'd like to know more. I'm glad you've been "fairly stable". Thanks for your response. Wishing you all the best.

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1 reply
red7 | @red7 | Dec 18, 2022
In reply to @mommatracy5 "Hi, I’m 49 years old and just got an Mgus diagnosis. I’ve been trying to find..." + (show)
@mommatracy5

Hi, I’m 49 years old and just got an Mgus diagnosis. I’ve been trying to find out all I can and have so many questions. I’d like to connect with other Mgus people with more experience and knowledge. Thank you!

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To lynne76 I know how you feel. My MGUS was found in 2020. My nephrologist actually sent me to a hematologist since my blood work for him was questionable. Am seeing my hematologist every 6 months now. Was very hard to deal with all this in the beginning but with more knowledge about MGUS and confident in my hematologist and faith I put it in the back of my mind and enjoy life and thank God for every day. Worry will get you no where. Good luck and God Bless.

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Mentor
Patty, Volunteer Mentor | @pmm | Dec 19, 2022
In reply to @tallyteresa "It gets easier as time passes to deal with the diagnosis, to understand the plusses in..." + (show)
@tallyteresa

It gets easier as time passes to deal with the diagnosis, to understand the plusses in knowing. We live longer being actively monitored.
Any other cancers are caught earlier as well as myeloma if we ever progress to that point which is a huge positive. Early treatment helps!!

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Teresa you hit the nail on the head for expressing my perspective. I’m grateful that I get quarterly blood analysis both to monitor the MGUS, but also my overall health. Who gets that kind of information quarterly?
The trick for me has been to relax and have confidence that my medical providers are paying attention.
Additionally, my doc keeps me appraised of treatment advances in the event my MGUS progresses. That inspires both hope and confidence. The statistics are on our side. Data rocks.
Have a happy holiday.
Patty

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1 reply
mariko572 | @mariko572 | Dec 20, 2022
In reply to @becky1024 "Hi Mitten, sorry to hear your diagnosis, my brother died from MM he developed from being..." + (show)
@becky1024

Hi Mitten, sorry to hear your diagnosis, my brother died from MM he developed from being exposed to Agent Orange in Vietnam. Because of that, my Oncologist naturally zeroed in on MM when we discovered I had. MGUS. My precancerous cells fooled her and are progressing into a rare form of Non Hodgkin’s Lymphoma called Waldenstrom Macroglobulemia. My platelet count is also low but still in low normal range, so I looked for foods that can increase them. I also looked for foods to avoid that reduces platelets. Because of other blood issues “I’m damned if I do and damned if I don’t” as the saying goes. You see, I tend to throw clots because to many platelets stick together. I’ve thrown clots that have almost killed me in fact. So my options are to either bleed to death from lack of platelets or throw a clot big enough to kill me because they’re to sticky. It’s a delicate balance, my last count was 170,000, low level is 140,000, 50,000 is a disaster waiting to happen. So as the saying goes, “Be carefully what you wish for, you just may get it”!!!

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I also recently receive a diagnosis of Walderstrom’s. I am monitoring my lab work but you seem to be more advanced in your analysis. Can we chat?

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1 reply
michelle151 | @michelle151 | Dec 26, 2022
In reply to @mommatracy5 "Hi, I’m 49 years old and just got an Mgus diagnosis. I’ve been trying to find..." + (show)
@mommatracy5

Hi, I’m 49 years old and just got an Mgus diagnosis. I’ve been trying to find out all I can and have so many questions. I’d like to connect with other Mgus people with more experience and knowledge. Thank you!

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Hi, Everyone. First I'd like to say Merry Christmas and Happy New Year.
I'm new to this forum, I was diagnosed with MGUS 2017 Light chain kappa IGA I kept telling the dr's that there was something wrong with me other than the usual, I have many things wrong with me 28 altogether ranges from really stiff joints from birth to diabetes to fibromyalgia to osteoarthritis. Although Mgus is the most worrying of them all I had to learn to live with it and now i feel it's just melted into all the other's, as many of them cross over each other for example i ache all the time feels like flu when i'm really bad, my bones ache don't even have the energy to get out of bed but i make myself as my fur babies need feeding. Since diagnoses i have learnt that i can no longer do anything whenever i like i have had to slow down, sometimes to a snails pace it can be disheartening at times but you have to focus on the positive and what's good in your life, and do things in small chunks (if that makes sense). I have been kept a close eye on by my specialist over the covid because my kappa and kappa/lambda ratio is going up all the time, my next app is 12th January 2023 i usually start worrying about know, anyways i hope my post will help someone xx

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2 replies
Mentor
Ginger, Volunteer Mentor | @gingerw | Dec 26, 2022
In reply to @michelle151 "Hi, Everyone. First I'd like to say Merry Christmas and Happy New Year. I'm new to..." + (show)
@michelle151

Hi, Everyone. First I'd like to say Merry Christmas and Happy New Year.
I'm new to this forum, I was diagnosed with MGUS 2017 Light chain kappa IGA I kept telling the dr's that there was something wrong with me other than the usual, I have many things wrong with me 28 altogether ranges from really stiff joints from birth to diabetes to fibromyalgia to osteoarthritis. Although Mgus is the most worrying of them all I had to learn to live with it and now i feel it's just melted into all the other's, as many of them cross over each other for example i ache all the time feels like flu when i'm really bad, my bones ache don't even have the energy to get out of bed but i make myself as my fur babies need feeding. Since diagnoses i have learnt that i can no longer do anything whenever i like i have had to slow down, sometimes to a snails pace it can be disheartening at times but you have to focus on the positive and what's good in your life, and do things in small chunks (if that makes sense). I have been kept a close eye on by my specialist over the covid because my kappa and kappa/lambda ratio is going up all the time, my next app is 12th January 2023 i usually start worrying about know, anyways i hope my post will help someone xx

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@michelle151 Welcome to Mayo Clinic Connect. It is always an interesting journey when we have health issues. Having multiple concerns sure can feel like we are climbing a steep mountain with little help along the way, right? Getting through day by day, we learn what will be best for us at any particular time. I appreciate you sharing your experiences on what is working for you. It's not an easy thing to accept slowing down and modifying our life, but giving up is not an option.

As you have proven, getting a diagnosis of MGUS, we can go many years without significant progression. The watch-and-wait approach is the most common to do, and I'm glad you have a specialist you trust; that's so important!

Good luck on that appointment in a few weeks. Will you come back and let us know what you find out, please?
Ginger

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 29, 2022
In reply to @mariko572 "I also recently receive a diagnosis of Walderstrom’s. I am monitoring my lab work but you..." + (show)
@mariko572

I also recently receive a diagnosis of Walderstrom’s. I am monitoring my lab work but you seem to be more advanced in your analysis. Can we chat?

Jump to this post

Hi @mariko572, you may wish to connect with other members living with Waldenstrom’s in this discussions:
- Waldenstrom macroglobulinemia Recently diagnosed https://connect.mayoclinic.org/discussion/waldenstrom-macroglobulinemia-recently-diagnosed
- Waldenstrom macroglobulinemia: What to expect during watch & wait? https://connect.mayoclinic.org/discussion/waldenstrom/

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1 reply
mariko572 | @mariko572 | Dec 29, 2022
In reply to @colleenyoung "Hi @mariko572, you may wish to connect with other members living with Waldenstrom’s in this discussions:..." + (show)
@colleenyoung

Hi @mariko572, you may wish to connect with other members living with Waldenstrom’s in this discussions:
- Waldenstrom macroglobulinemia Recently diagnosed https://connect.mayoclinic.org/discussion/waldenstrom-macroglobulinemia-recently-diagnosed
- Waldenstrom macroglobulinemia: What to expect during watch & wait? https://connect.mayoclinic.org/discussion/waldenstrom/

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Thank you !

REPLY
raye | @raye | Dec 29, 2022
In reply to @raye "Hi, MGUS and Beyond, friends. @Lynne756, welcome! Glad you mentioned Ferritin. Mine is currently 11 and..." + (show)
@raye

Hi, MGUS and Beyond, friends.
@lynne756, welcome! Glad you mentioned Ferritin. Mine is currently 11 and I don’t understand why it’s low, yet other iron-related scores, Hematicrit and Hemoglobin, are often elevated. Just made a list of the declining ferritin scores in their consecutive dates in my contact list, then made an edited screen shot of this to send to my hematologist.

He advises seeing me every six months but I make appointments with him every three months. My decision due to concerns about risk factors. I’ll see him Tuesday when I hope to get greater understanding of the whole gestalt of various out of range blood test results. Googling each just feels like being in a dark room with a sleeping elephant while only being able to touch its isolated parts. What are the implications of this IgM Kappa MGUS diagnosis with its odd other blood tests? Hope to learn more about it this time while being glad it has been fairly stable but slowly elevating since 2015.
Ginger, your commentary is always helpful. Grateful hugs!

Jump to this post

Thank you, dear @coleenyoung. I’m glad you liked my December 17 post and found it useful. Though I had a plan of what I hoped to discuss with my hematologist, the goal of better understanding the whole gestalt of the sleeping IgM kappa MGUS elephant was not achieved. He checked my kappa, said most scores were better, then wrote that I feel that I do not have a wholistic understanding of this diagnosis.

My hematologist must have found me a sympathetic listener because he then unloaded on what he has been through lately: rain leaked on their piano, termite droppings were discovered inside their house, the refrigerator died and a new replacement would not be available for a year, the catalytic converter on his Prius was stolen. What a disaster list! A responsive patient, of course I took it all to heart and sent contact info for my mechanic and appliance repair guy.

However I still do not understand why my ferritin is low or whether there is anything to be done about it. Next week I plan to ask my PCP about that.

May we begin this new year counting our blessings. Wishing everyone a happy, healthful and peaceful new year.

REPLY
gilash1965 | @gilash1965 | Jan 6, 2023
In reply to @mommatracy5 "Hi, I’m 49 years old and just got an Mgus diagnosis. I’ve been trying to find..." + (show)
@mommatracy5

Hi, I’m 49 years old and just got an Mgus diagnosis. I’ve been trying to find out all I can and have so many questions. I’d like to connect with other Mgus people with more experience and knowledge. Thank you!

Jump to this post

Greetings
Two and a half years with MGUS, feeling great, in fact all the normal blood tests are very good
The monoclonal protein increased in two and a half years from 1.9 to 2.3 - the hematologist asked to check bone marrow, I did not agree. After consulting with 3 different doctors they claimed that there is no reason to perform this test when the protein is at this level. I will mention that my IGG has been constant for two and a half years at 2700. flc 2.9
your opinion ?

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