Healing + New Clinical Trial

Since my last blog post, both Barbie & I have been healing, undergoing physical therapy (me) or occupational therapy (Barbie).  Except for occasional setbacks when the body part involved gets banged or abused in some way, the progress has been encouraging.  In spite of stubbornly resistant tendons, Barbie is slowly regaining some flexibility in her wrist, and I have evolved from dependence on two crutches, to a single crutch, then a cane, and recently walking short distances without any extra support. My “Cadillac” rollator helps me accomplish longer walks, if smooth surfaces are available.

The other main development since May 30^th is that I have started a new clinical trial of a vaccine for Multiple Myeloma.  Through the spring it was nip and tuck whether I would qualify for the clinical trial.  The interim medicine was working too well, so I was not “sick” enough to qualify.  My fall and broken hip resulted in my skipping a treatment, causing in an increase in my free lambda, which qualified me for the clinical trial.  Another irony is that while I was ill, in a conventional sense, basically from Feb. until the hip-breaking fall, the large doses of meds administered while they were addressing the hip fracture seemed to clear up whatever had been plaguing me.  So breaking my hip resulted in my getting “better” as well as allowing me to qualify to participate in the new vaccine trial.  I am patient #001.

They make the vaccine by taking your multiple myeloma cells via a bone marrow biopsy.  In my case they had to do 2 bone marrow biopsies because the first time they didn’t get the requisite number of cells.  The goal was 10 million cells, and they only got 7.5 million on the first try.  Usually getting that number of cells is easy, as 10 million cells amounts to a very small layer in a test tube.  But they didn’t get the needed amount, so they drilled into my hip bone again.  Lucky me.

Once they had the right number of myeloma cells, they extracted dendridic white blood cells.  This required them hooking me up to a blood centrifuge.  One line in a vein in my right arm fed fresh blood into the machine, and then the “used” blood was returned to another line in my left arm.  Very large bore needles are needed to capture the required volume of blood flow, and the IVs were somewhat temperamental, requiring frequent adjustments.  While this was happening, I got a call from Barbie calling from the ER in Concord, MA announcing that she had broken her wrist.  Suddenly what I was doing seemed less critical.

It took about a month for them to create the vaccine.  The actual clinical trial consists of 12 infusions of Nivolumab, every 2 weeks.  Nivolumab is a monoclonal antibody that acts to prevent the cancer's mechanism that turns off the immune system's T-cells from working.  It is not frequently used for Multiple Myeloma patients, hence the trial.  Then on infusions #1, #3, & #5 I also get a shot of the vaccine followed by booster shots of GM-CSF on that day and the next 3 days.  GM-CSF stands for Granulocyte macrophage colony-stimulating factor.  I have read the Wikipedia entry for GM-CSF as well as several other internet articles on GM-CSF.  Suffice it to say the explanations are way more technical than I can understand.  Net: GM-CSF is supposed to enhance the effect of the vaccine.

The clinical trial has a long document that the patient must sign in multiple places.  It lists the possible side effects of each of the components of the clinical trial.  Many of the side effects are said to happen in more than 50% of the patients.  So far, I have only had one side effect: an itchy rash in the area of the vaccine injection and the GM-CSF injections.  I have no idea whether it is from the vaccine or the GM-CSF.  Luckily if I don’t scratch it, it gets no worse.

So far it is not clear that the vaccine has had any significant effect.  My latest free lambda is 716, up from 630 a month earlier.  It is going in the wrong direction, but not significantly so.  It is always hard to tell what would have happened in the absence of the current treatment.  Would it have spiked up like it did in the spring?  They have certainly taken lots of blood tests as part of the clinical trial.  Maybe one of them can tell us what is going on.

This summer we are splitting our time between Cow Island and Stow.  We have physical/occupational therapy both in New Hampshire and at home.  My clinical trial appointments dictate when we are in Stow.  Generally, we spend 10 days in New Hampshire and 4 days in Stow.  The New Hampshire PT/OT is in Guilford, which is on the southern side of Lake Winnipesaukee.  Sometimes we have arranged to leave from there going back to Stow, as it cuts 45 minutes off the trip. 

One of the joys of our NH island camp is the ability to stay off the roads, to stay put and enjoy living closer to our beautiful natural setting and avoid driving, traffic and other hassles.  This summer, with far more frequent trips to and from MA and hauling ourselves to PT/OT twice a week, we have not had the uninterrupted quiet time up here.  But we are grateful to have found good therapy services in both places, and so far, we have been able to negotiate the more challenging aspects of being on the island on our own – thanks to the help of our sons and their families who did so much of the heavy lifting required to set the place up over the July 4 weekend. We are also very fortunate to have a wonderful carpenter/handyman who has helped with things that we cannot manage ourselves in our compromised states.  So we will enjoy this summer as much as we can, though we miss our sailboat and all the enjoyment it has given us over the years. Hopefully next summer we will both be fit enough to handle it and we can get back to “normal.” Stay tuned….