It started with
“smoldering myeloma,” where the myeloma is there but not advancing very
quickly. They didn't treat smoldering myeloma in 2009, but that seems to be changing now. The thing is, there has been a lot
of trial and error in treating myeloma in the last decade or so, because that’s
when the first effective drugs started to be available. Up until that time, if
you were diagnosed with multiple myeloma, there were no effective drugs, and you
had about a 2 to 3 year life expectancy. The new drugs like the ones I’m
getting, Revlimid and Velcade, gave evidence of working, but then the question
was,” How should they best be used?” Should everyone get them? When should they
be started? How long would they work? What dosage would be most effective? Even
today, clinical trials focus on the best way to use these drugs. Doctors are
still learning how the drugs work with all the variables: things like the kind
of myeloma a person has, the age of the person and how long a drug could or should
be given.
My myeloma started
ramping up at the beginning of 2013, and I began treatment in the spring of
2013 with the Revlimid chemo pills. By the beginning of this year, the
effectiveness of the Revlimid was beginning to fade, and this spring, we went to
a combination of Revlimid and Velcade. The Velcade is given as a weekly
injection into the stomach area. It has slowly brought me up to the best blood
test results I have had since I was first diagnosed. A lot - but not all- of
the myeloma cells have been killed off.
To show you how
things slowly change, Velcade used to be given as an infusion twice a week.
Only lately have doctors learned that it can be given much more simply as an
injection. Even better, trial and error testing shows now that it can be given
once per week rather than twice, and still be effective. This has helped many
people avoid the big side effect of Velcade: neuropathy. Unfortunately for me,
even the smaller dose of Velcade has brought on neuropathy. This means that
there is numbness and sometimes tingling in my feet, and sometimes pain. At
times it feels as though there are lumps on the bottom of my feet, making it
uncomfortable to walk. There are medicines that lessen this somewhat, but it is
always there. Still, I’m able to get around pretty well so far. Martha and I have been logging a mile or so up and down the aisles of the Home Depot lately.... she goes a little faster than me! My Akron
But an even bigger
decision is coming up. My Cleveland Clinic doc says that, with my better blood
numbers and my age, now is the time to consider a stem cell transplant. Lots of
myeloma patients have one or more stem cell transplants. In January, we are
meeting with the Cleveland Clinic doctor who would harvest my stem cells, then
kill off my bone marrow and then reintroduce the harvested cells. If everything
goes according to plan, it involves 3 weeks in the hospital, a couple of months
confined to your home while rebuilding your immune system, and perhaps longer
to get back to feeling normal. Neither of my doctors is pushing me to do this,
but they think I should consider it. I must say, it will take a lot of convincing
to make me want to do it.
The good news is
that researchers seem to be aiming at this disease from every direction. Maybe
you heard about the researcher who had some early success at the Mayo Clinic
using measles vaccine against myeloma. Another researcher has found a way to
boost the immune system of mice so that their cells went on a rampage seeking out
and killing myeloma cells. Clinical trials are beginning in humans. Big name
people have helped bring our disease to the front: Tom Brokaw is sharing his
myeloma story. Matt Damon recently talked about his dad’s battle with multiple
myeloma. The Multiple Myeloma Research Foundation’s Kathy Giusti has shared her
own journey with the disease, now going on for almost 20 years, and has been
honored over and over for leading the way in getting new myeloma drugs to
patients.
It’s hard to
believe that I've been at this for five years, and that I’m feeling as good as
I am. Yes, there is fatigue and endless doctors’ appointments and treatments.
You’re in danger of becoming best friends with the medical personnel, which is
never a good idea! The future is always a question mark, but maybe all of us
should be a little more aware of that. It’s a good life that I am able to share
with my family and friends, and I am still able to witness to my faith and
serve our loving God. Thanks for all your support and prayers. They are
precious to me! I will do the same for you as I am able.
.
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