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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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Mentor
Patty, Volunteer Mentor | @pmm | Feb 28 9:43am
In reply to @carlabaz "@kayabbott I haven't learnt to read my numbers yet. I appreciate your blood stats and will..." + (show)
Profile picture for carlabaz @carlabaz

@kayabbott I haven't learnt to read my numbers yet. I appreciate your blood stats and will compare to mine with notes, this will help me learn. I am having the 24 hour hour urine test in April. I've been easily agitated the last few months and she was thinking maybe she would start my treatments early. She decided on seeing how I got along for another 3 months since I was doctoring with MD too. I don't have the CRAB symptoms yet either. Those scare me. I'll let you know what my numbers are, if thats okay? Hugs

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@carlabaz hi there. I have not yet learned to read my lab results beyond the basics and I was diagnosed several years ago with MGUS. I rely on the professionals because I often look at an abnormal result and catastrosize when my oncologist explains that it’s not a big deal.
There are members on Connect who are good at it, and I have used this link, but I encourage you to call your provider to get information related to your test results. There are so many variables such as coexisting conditions, medication side effects and even diet and exercise that are specific to you. You want a provider who looks at all of that and can help you navigate your healthcare needs. Sometimes it takes a few swing and miss attempts to find just the right provider. They may not have the best “bedside manner,” but if they are thorough, take the time to know your whole healthcare needs and take the time you need to understand the complexities, you will know you have found the right match.
https://www.myelomacentral.com/livingwithmm/multiple-myeloma-treatment-monitoring/understanding-multiple-myeloma-lab-test-results
I hope this helps you a bit.
I’m interested in your journey. Will you let me know how it’s going for you?

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carlabaz | @carlabaz | Feb 28 12:27pm
In reply to @pmm "@carlabaz hi there. I have not yet learned to read my lab results beyond the basics..." + (show)
Profile picture for Patty, Volunteer Mentor @pmm

@carlabaz hi there. I have not yet learned to read my lab results beyond the basics and I was diagnosed several years ago with MGUS. I rely on the professionals because I often look at an abnormal result and catastrosize when my oncologist explains that it’s not a big deal.
There are members on Connect who are good at it, and I have used this link, but I encourage you to call your provider to get information related to your test results. There are so many variables such as coexisting conditions, medication side effects and even diet and exercise that are specific to you. You want a provider who looks at all of that and can help you navigate your healthcare needs. Sometimes it takes a few swing and miss attempts to find just the right provider. They may not have the best “bedside manner,” but if they are thorough, take the time to know your whole healthcare needs and take the time you need to understand the complexities, you will know you have found the right match.
https://www.myelomacentral.com/livingwithmm/multiple-myeloma-treatment-monitoring/understanding-multiple-myeloma-lab-test-results
I hope this helps you a bit.
I’m interested in your journey. Will you let me know how it’s going for you?

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@pmm Absolutely I will let you know. I appreciate your information so much. I agree I do have a good relationship with my Dr. I am so thankful for that. Thank you so much for the link, I'm going there today. I will keep you informed. I appreciate you asking. I love to hear your update too.

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mikxtr | @mikxtr | Mar 2 8:19pm
In reply to @sunsetchris "Yes I have MGUS and obsess about it. Information is very limited on severity and what..." + (show)
Profile picture for sunsetchris @sunsetchris

Yes I have MGUS and obsess about it. Information is very limited on severity and what it means. If u had a skin leision your dermatologist would biopsy it and determine whether it was malignant or progressing. MGUS has no standard of care and u just have to wait for any treatment until in turns to MM. Every other cancer has preventative steps I.E skin cancer or breast. But here we have a definite precursor to a deadly cancer and yet the medical community just says wait until it turns. Is that the most ridiculous thing you have ever heard.? Anyone feel the same?

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@sunsetchris I did read that there is concern within the medical community that MGUS/SMM/MM is the only pre-cancer situation that isn't treated at its earliest signs. I was told that this is because the treatments can do more harm than good when the diagnosis hasn't progressed to SMM/MM. But there are studies out there to see if there *is* something that can be done in the MGUS stage. I think that is part of the IMF or iStopMM study, but don't quote me on it.

So, unfortunately, the best course of action available to us now is wait and see. Hopefully one day they will have figured out how to be more proactive.

You are definitely not the only one who thinks the way you do.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 3 5:40pm
In reply to @nondipoo "I have had it since 1996. I have recently had low platelets and my immunoglobulins are..." + (show)
Profile picture for nondipoo @nondipoo

I have had it since 1996. I have recently had low platelets and my immunoglobulins are very low. The lab results show ‘observation’. It is very worrying.

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@nondipoo, is the indication of "observation" new for your lab results? Have you met with your hematologist to discuss? How are you doing?

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