Mm/Mgus

Hi,

I’m 44, father of one (with another on the way) and was
diagnosed last September with MM borderline Mgus
(found completely by chance, thankfully, when I had a
full physical with blood tests). My levels have
remained stable over the past nine months and I’m
fortunate to have one of the world's leading specialists
at St. Vincent’s Cancer Center here in NYC as my
doctor. I also participate in a research program at
another hospital/university, also in New York. As far as
bad situations go, mine could be a lot worse. But, with
no real cure in sight, I do worry a great deal about the
future. I have experienced a weird phenomena - I’ve
had close friends, and members of my own family as
well, shut down with knowing about my cancer. I
understand it's a lot to consume. In fact, I think in some
ways it's harder on those around us than it is us
ourselves - and I’ve since stopped telling anyone
about my disease. Nonetheless, the feeling of isolation
can be intense. There is only so much a spouse can
say or offer, I understand. This is why I’m writing here. If
anyone else has had an experience similar to mine,
please feel free to write.

Best,
md

Hi....MM borderline Mgus?
Does that mean you have smoldering myeloma?
Did you have a BMB and what were the results?

I have had MGUS for the past 10 years. The first time a BMB was done my IgG was 4500. The next month...it went to normal....and then it goes up and down. My IgA and Igm were both low but now....for the first time in 10 years... they are in the normal range.

I have no anemia, kidney problems nor letic lesions. Do you?

I do have the Bence protein, M spike and protein in the blood and urine. My Igg averages in the high 3000's.

So why are they telling you MM/MGUS? I don't understand. MGUS is NOT cancer....and only a small percentage actually get MM.

I am also in a study in the Bronx, NY...my entire family had sent their blood over because my Dad's three brothers died from MM...his sister had breast cancer, my first cousin had hodkins and on my Mom's side, my grandmother and first cousin both passed from Waldenstroms.

People do react strangely when dealing with someone who has been diagnosed with illness- I never can figure that out!
I'm sorry that has happened to you but try to stick with those who know how to be kind and hope the others grow up!
If no one else, come back to the message board & I'll be there for you.
My brother is 51 and just diagnosed with MM. We have much to learn.
My thoughts are with you.
Julie

I'm new to this message group but would like to ask what your m-protein level was at when you were dianosed with mgus!


Thanks Phil