[lonely artist]

Victoria, newly diagnosed with MGUS

by lonely artist on Tue Jul 18, 2017 4:01 pm

My name is Victoria, and I'm an artist in Massachusetts.

A relatively routine visit to my spine doctor for an old neck issue found me at a neurologist for some new symptoms. After blood work and some truly funky nerve tests, I assumed I'd be getting a call telling me I have multiple sclerosis, but was shocked into silence (which for me is rare) when I was told I may have a bone / blood cancer. It's been ten weeks since that call, and after a few weird hiccups – including a(n incorrect) diagnosis of a fractured spine – I received a definitive diagnosis of MGUS last week.

I've gone from never having heard of multiple myeloma to being a veritable fountain of information, sometimes shared through fear and tears, with those nearest and dearest to me. After having gotten through the initial hysteria of endless what ifs (as well as a very nerve wracking ten weeks of waiting to find out if this was active multiple myeloma), I have again found my equilibrium.

Having lurked here for almost three months I've decided it's time to join the community, ask my questions, and perhaps be able to offer advice of my own.

Take care,

Victoria

[bodumene]

Re: Victoria, newly diagnosed with MGUS

by bodumene on Wed Jul 19, 2017 6:52 pm

Victoria,

I assume that you know that MGUS does not require treatment, and that only a small percent (I think 1 to 2%) becomes multiple myeloma each year. I had MGUS for at least 3 years, and it really never got to the point where we would start treatment, except that I had a compression fracture in my spine. So we decided to begin treatment to avoid any further bone problems. After only 3 to 4 months, the cancer was knocked down to virtually zero.

What I am saying is that this really may not be a major problem for you, especially since you are catching it so early, before it has done any real damage. And it could stay as MGUS forever for you.

Anyway, best of luck to you.

bodumene

[lonely artist]

Re: Victoria, newly diagnosed with MGUS

by lonely artist on Thu Jul 20, 2017 12:19 pm

Thank you, Bodumene! I'm sorry to hear about your spinal issues but am glad to hear you're doing well.

Yes, I do know that MGUS is a treatment-free watch-and-wait period. My stress came from my own spine issue muddling my diagnosis. Initially my oncologist felt this was straightforward MGUS, but then a spinal x-ray showed a fracture and possible 15 millimeter lytic lesion at T7 as well as an 8 millimeter lesion on my left wrist. I spent ten long weeks waiting through tests and trying not to worry until I finally had my follow-up appointment that cleared me back to MGUS as an MRI showed a clear spine after all.

I still have a possible lesion on my wrist that has me somewhat concerned, but my doctor feels a watch and wait on that will be okay. (I posted about this in more detail in the MGUS forum).

All in all I feel very lucky at this point.

Take care!


Victoria