Buying time

All along I’ve thought that I need to hang in here for a few years until researchers find a way to manage MM as a chronic disease or there’s a cure. Bob Meyer just posted something on the MM list that is encouraging. There are many of us who have the same optimism and are doing what we can to keep our disease under control with as little damage to ourselves as possible. Bob’s email to the list follows.

—– Original Message —–
From: “Robert H Meyer”
Sent: Saturday, May 24, 2003 9:21 PM
Subject: [MM] A note of serious hope

Hi All,

Having, like so many of us, taken on the very depressing task of mentally
acknowledging the passing of “Aussie Pat” and Violet Kimball’s husband,
Stanley, and then having sent painful and upset emails to both Chris and
Violet, I decided it was well past time to once again prowl about the
internet to see how things are progressing on MM research.

What I found is extremely hopeful and actually goes well beyond what I had
expected to find. Much of the primary mechanism that “makes MM go” has been
unraveled and moves are well underway to develop methods to disrupt the
vicious cycle of MM cell growth and bone resorption that characterizes most
MM. I won’t go into technical details at this point as I want to keep this
post short and to the point. In any event I have posted some of them
several years ago when they were first suspected. The main thing is that
much has been verified and fleshed out in the last three years so now there
is near certainty about much of the way MM escapes natural controls.

If anyone cares about the technical details, I will post a review (hopefully
in nearly plain English) of what is now known and what is being done. If
anyone wants to see the abstracts for themselves, one good way is to use the
PubMed search engine with the key search directives “OPG AND myeloma” and
“RANK-Fc AND myeloma”. What you will find is extremely uplifting (assuming
you can digest the highly technical terminology).

My main message is that what I am getting from the abstracts is the very
definite impression that some of those on this list who can manage to beat
back their MM for just another few years may quite possibly (I want to say
“likely” but am trying hard to be cautious) outlive their disease. Yes,
there can always be some unexpectedly nasty side effects to the treatment
ideas now being pursued and that could of course lead to disappointments and
some delays as treatment details are further refined – but barring all that
I think the medical community is extremely close to being able to halt the
MM growth cycle in most cases. They don’t yet know what triggers MM, I
think, but they do know an awful lot about how it maintains itself once it
gets started.

Just my personal opinion of what I’m reading in the research abstracts, of
course. I try hard not to be a prophet of false hope but I really am very
impressed at what the medical researchers have managed to figure out about
MM and the way the body loses control over MM cell growth. I certainly
believe that we will very shortly be seeing another new generation of very
promising anti-MM drugs entering the clinical trial gates.

Best wishes all,

Bob Meyer in San Diego county
NO formal medical training but former caregiver to wife (Patricia) dx’d rare
extremely aggressive IgG kappa MM with plasmablastomas and M-spike of 1100
in 4/98, died 11/98 at age 52; prev. MS history; also hepatitis, severe mono

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