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Anyone else have Symptomatic MGUS?

Blood Cancers & Disorders | Last Active: Nov 28, 2023 | Replies (73)

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@leslie2121

I have been diagnosed with MGUS for a couple years now. Asymptomatic so far. My initial thought was shock and wanted to treat it to get rid of it!
However my understanding is that the drugs we have available can cause more harm than good- and once we start chemo there’s usually never a break for the rest of your life.

But there are lots of studies out there on MGUS with the idea of treating it at the early stages so it never progresses. Maybe you could look into that?
I did a lot of research initially and found Dr. Joseph Mikhael with Honor Health in AZ. He does consultations for $300 and is involved with research, some with MGUS. He was also the chief (?) of International Myeloma Institute until recently.
Might be worth a look.
I sent my records & had a virtual appointment.
Good luck!

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Replies to "I have been diagnosed with MGUS for a couple years now. Asymptomatic so far. My initial..."

Hey there Leslie2121, I’m sorry to hear of your MGUS diagnosis, however it is very pleasing to hear that you are asymptomatic 😀🌺 Would you mind please sharing - if you feel comfortable to do so - your type? I’m IgG Lambda (low IgA).
I would agree that the meds directed at treating plasma cell monoclonal gammopathy aren’t ideal for a range of reasons, when it comes to approaching symptomatic MGUS, considering the volume of plasma cells to be targeted and that end up being effectively treated do not outweigh the side effects (both long and short term).
Having said that, it would be a pleasant approach to have some proactive care in terms of symptoms when they are causing some damage; for instance, in my situation I’m having high calcium levels, Bence-Jones proteins in urine, and peripheral neuropathy (amongst other MGUS effects), and so to have some help regarding these would be very much something to smile about 🙂
From what I’ve read (and I admit I’ve been a little lax on research review these last couple months due to another project), the research isn’t definitive or at the stage of general population application in terms of treating MGUS proactively to prevent progression (however, if this is not correct, please do feel free to correct me on that).
I’m very pleased to hear you found someone to review your case: may I kindly ask how it went with Dr Mikhael? I hope there were some helpful things that came from your appointment 🙂
I’m in Australia, and with our systems here it can be challenging to get a second opinion, and I’ve personally found it a challenge to access medical professionals outside of Au (however I’d like to say that to date I haven’t tried to contact Dr Mikhael, who may or may not see international patients🙂).
Thank you for your message, I really appreciate your kind suggestions.