Does anyone else have MGUS?

Good morning, Shawnnyce. @shabbalv55 It’s been a few months since we chatted. I know you weren’t getting very much help or information from you current doctors. I was wondering if you made the call to switch hematologists? ☺️

A fellow-Aussie! Although I was born in Canada, I lived in Melbourne in my younger years and have always considered it home. I'm so sorry that you find yourself in the same predicament as me. I wouldn't wish this on my worst enemy. I, too, am noticing that there are more and more areas that now hurt. Going private would cost another $10,000 a year which I don't have, but might have to come up with so that I can be put out of my misery (not in the final type of way...at least not yet!). I have started losing weight. Don't know if it's thyroid related as my GP thinks (he blames everything on my thyroid, nothing on myeloma, thus why nothing is moving). I guess time will tell. I wish you good luck as well cobba. Hang in there. I'm always here if you need to chat!

Sorry to hear that nathangolden, sounds like the Aussie system where patients are solely a cog in the huge mechanism for the medical industrial complex to make money from our suffering. I can really empathise with your situation, having been stuck in the Au public health system for some years now. Going private, and paying around $300-$600 per 15 mins consult here is out of my reach, but I know without a doubt that if I had money I would be genuinely helped by the private system. My haematologist was just so outwardly ignorant at the last appointment I’ve ditched him for his colleague - hopefully she will want to help (I’ve gone into stage 3a kidney disease rapidly, with increase in paraproteins of 25% since last visit (7 months ago), as well as feeling bone pain in a lot more areas, and fatigue. I personally think in my case a repeat BMB (last one done Aug 2021) and nephrologist review would be the minimum to do to be responsible towards genuine patient centred care. So that’s what I’m now pushing for - hopefully it happens.
Good luck to you in finding an unbiased professional in the medical field, who is prepared to put your best interests above those of the system and their pockets 🙂

Nope, she didn’t indicate a follow-up. At first, my GP agreed with me and was going to refer me to Proncess Margaret in Toronto, but he has since changed his discourse and now says that he agrees with her report. In Canada, in a public system, they all have each other’s back. I would need to go completely private, and this is what I’m trying to figure out right now. I’m pretty tolerant of pain, but this is at a whole other level.

@nathangolden. Quite frankly, I think it’s time to find another hematologist oncologist. 😳 Do you have any followup appointments with this doctor??

You are very lucky to have someone who is interested enough to follow-up. My oncologist just sent me on my way and told me I’d get my chemo when I break a bone. She didn’t even ask about any of my symptoms either. I’m so glad that everything seems to be under control for you.

Diagnosed with MGUS December 2022. I'm very low on the light chains and ratio between the 2 is good so seeing my hematologist every 2 months and blood work I feel it is under control. I am 72.

Saw gyn and am now back on estradiol creme twice a week. Seems to be working. Not thrilled with being on hormonal creme again, but it's better than the constant uti's! We'll see!

Hey Rick, thanks for your service. I also served in Viet Nam ‘66-67. I’m currently dealing with prostate cancer and receiving treatment for MGUS that has stepped up to Waldenstrom disease. Both on the presumptive list issued by the VA.
Never say never just keep on fighting.
Best to all!

Hello Harley,
I’m glad you joined the discussion. I’m learning a lot about MGUS from our fellow travelers.
It sounds like your medical provider is confident that your MGUS is stable and therefore he or she is seeing you twice a year. Did you find a good hematologist in whom you have confidence and are all your questions answered about MGUS? I find that having a provider who is an expert in Multiple/Smoldering MM is essential. It took me a bit to find mine.
Thanks for sharing your participation.
Patty