At the time of the last blog post on August 21 (https://greg-vs-multiple-myeloma.blogspot.com/)
I still had a feeding tube and I was just starting 8 weeks of Daratumumab. The feeding tube was removed September 11,
and while I recognize the vital role it played in my Whipple surgery recovery,
I certainly do not miss it!
Unfortunately, treatment for Multiple Myeloma was totally suspended from
the first appearance of the Ampullary Adenoma on Memorial Day, through the
surgery and recovery. As a result, the
disease came back with a fury. They
chose Daratumumab, an infusion of antibodies, as the first approach to
address the disease, to allow for continued healing from the surgery. It was successful at first, cutting my Free
Lambda in half. But then it just stayed
at that level, not getting any better.
In fact, toward the end of the Dara treatment, the Free Lambda went up
again. Clearly the stubborn disease had
found a way to evade that treatment.
During September I felt better and better. I was able to join Barbie in her walks over
Cow Island to Big Sandy Beach and back.
I was slow, but I felt I was gaining strength. And there were no new Emergency Room
visits. I was told my bones were still
vulnerable, so I should not lift anything over 4 pounds. I
adapted, and put any heavy things in garden carts so that I wouldn’t have to
carry their weight. We closed up Cow
Island Columbus Day weekend, hiring a fellow in his 20’s to get all the things
we put into the waterfront shack there and positioned for the winter. I had the role of saying which things went
where and how to tie the boats to the rafters, but I didn’t lift anything
heavier than the ropes involved. Did I
ever feel useless.
In spite of being careful, by Monday I was feeling much
worse. My back and torso had significant
bone pain, and my lower back made standing up straight impossible. No longer was I tempted to join Barbie on her
walks. I would understand if I had cheated
that weekend in terms of lifting things, but I hadn’t. By the end of the week, I felt I was falling
apart. Not only was I hurting, but
simple things like walking up a flight of stairs got me winded.
Ultimately my condition resulted in a change of treatment. The Dara was abandoned, and a combination of
Carfilzomib, Dexamethasone, and Pomalyst was initiated. Carfilzomib is a proteasome inhibitor, much
like the Velcade in my original treatment combination. Proteasome inhibitors disable a key part of the
cell that processes wastes. So the cells
die of their own excrement, so to speak.
Somehow they know which cells to attack, but I don’t know how. Carfilzomib was approved by the FDA in 2012 for patients with
relapsed and refractory MM. The meaning
of relapsed is obvious: it came back after the initial treatment. The meaning of refractory is that the patient
has received at least 2 prior therapies and the disease is still active. Not a state you want to be in. Carfilzomib is derived from some work done at
Yale starting in 1998. Small world.
Dex was part of my original treatment
plan. A steroid, it increases the
effectiveness of the other drugs.
Pomalyst
acts to enhance the immune system’s response to Myeloma cells. It is a relative of Thalidomide, so I have to
pledge every month not to have unprotected sex with a fertile female. [I’m willing (but not by forcing myself on
anybody!).] It is also much like
Revlimid, the third element in the original treatment. So we are back to a combination that
resembles what they gave me in 2012, just different versions. Different enough, I hope to evade the Myeloma
cells’ adaption to the original versions.
I no longer feel like I am falling apart, but I am not back
to where I was at the end of September.
I still have a pretty major scar on my stomach, but I feel like I have fully recovered from the summer surgery.
Clearly having two major medical events (Multiple Myeloma and the Ampullary
Adenoma/Whipple surgery) hit you at the
same time has been more than my systems can handle. I am hopeful that the new treatments can beat
back the MM, but I doubt I will ever actually stand up straight again. Especially with bone damage, there is a
ratchet effect. You get to a new state,
you get better, but the structural changes don’t go away. I haven’t written a blog post for a while
because I was hoping for a conclusion to the drama. No conclusion yet, but I thought I’d send out
an update, as many of you have very kindly inquired about how things are going.
Here’s what the most recent numbers look like:
The spike up to the right is the Dara losing
effectiveness. The only 2 readings since
the new treatment plan show the number coming down, but still in a harmful
range. I can’t wait for the next
reading.
Thank you all for your concern and good wishes. I hope the next blog post reflects some positive
changes.
