Relapsed and Refractory

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.