Closer to Free (to steal a phrase)

Everything keeps moving in the right direction. The last time I needed a transfusion was March 19th. So when I went to Dana Farber two weeks ago on March 25th I had my central line removed! This was huge for my day-to-day. The three lumens on the line had to be flushed daily (by me, if I didn’t have an appointment at Smilow). I had to wrap it up to take a shower and never stand full on in the front in the shower. An inconvenience for sure.

With my hemoglobin and platelets continuing to rise it was just my ANC that was lagging and needing a boost from time to time (shots of filgrastim that I administer). The last time I needed a boost was March 29th and yesterday I asked Dana Farber if I could go to once a week blood draws instead of twice a week – and they agreed!

And most importantly my multiple myeloma numbers continue to go down. I go back to Dana Farber on April 22nd for another check in. When I went in March I had three questions all ending in -ine:

  • Central line ✓ (removed)
  • Vaccine ✓ (I can get it at 3 months, however they don’t know if I will develop an immune response or not)
  • Wine ✓ (in moderation)

And I am back to doing toe lifts and squats when I diffuse my hair. Full workouts coming soon. I feel better and better every day. (The new puppy is definitely contributing to my activity and fitness!)

Cutting Edge

“Cutting edge”, it sounds so hip, so cool, so in the know. And on the cutting edge is where I now find myself.

My current treatment of Krypolis (carfilzomib), Cytoxan (cyclophosphamide), and dexamethasone has stalled, a small uptick, an inch downward, but staying right about where it has been. To the layperson (aka me) this doesn’t seem so bad, especially considering where the numbers were. But to an oncologist, this is a failure of the treatment and a need to move on to something else.

I met with Dr. Seropian on November 11th, a little more than a week before I was already scheduled to see Dr. Munshi at Dana Farber. Seropian mentioned some clinical trials at Smilow, I wrote them down to take to Munshi. I told him I knew that Dana Farber had put me on a list for a CAR-T cell therapy trials at Dana Farber.

And then that Friday night (November 13), at almost 6 p.m., I got a call from a Dana Farber (DF) research nurse. There was an opening in a CAR-T cell clinical trial for December 8th. They had reviewed all the candidates and I was the perfect one (apparently the right combination of enough cancer, and enough health). She gave me a quick rundown and I agreed to participate. I was hoping that this would be coming up soon, so I wasn’t that surprised. December 8th sounded sort of far away, but it really isn’t.

The DF research team managed to schedule all of my screening appointments for Monday, the 23rd:

  • Vein check (to see if I need a port/line for the leukapheresis
  • “Consenting” with Dr. Munshi
  • “Teaching” with the research nurse
  • Pulmonary function test
  • Transthoracic echocardiogram
  • Bloodwork
  • Electrocardiogram
  • And then back home that night.

    It sounds like I might get a 2 week chemotherapy break between now and December 8th.

    After December 8th things are a bit up in the air, this is what I know:

    • I will receive some sort of bridge therapy after the 8th and before I am admitted.
    • It takes 4-6 weeks for them to modify my blood cells.
    • About 2 weeks before they are ready to start the process of returning them to me I go back to DF for more tests including a bone marrow biopsy (boo!)
    • 5 days before they return the cells I will get 3 days in a row of lymphodepleting chemotherapy (fludarabine and cyclophosphamide), the first 2 days are 8 hour days, and the third is a 4 hour day). This is followed by one day off, the following day I am admitted, and the next day I get the cells, Day 0.
    • From Day 0 I will have a minimum hospital stay of 7 days, depending upon the severity of the side effects.
    • For 21 days from Day 0 I need to be within one hour of Dana Farber.
    • For 30 days from Day 0 I need to have a caregiver with me 24/7.

    When I ask the nurse how I will feel after this part or that part (I never ask about the week in the hospital, I should do that) she always says it’s not that bad, I can drive myself, etc.

    Speaking of driving myself, this pandemic and no visitors and quarantining, etc. is really throwing a wrench into my planning. No visitors at all at DF for outpatient visits. One visitor for inpatient. But with travel restrictions it is complicated.

    The possible risks/side effects of the treatment sound pretty horrific, but they have found that myeloma patients are faring better than the lymphoma patients (CAR-T is already approved for lymphoma). In the studies (there are multiple companies vying coproduce this therapy for myeloma), myeloma patients have not reached the highest degree/level (3) of side effects. That said they are: cytokine-release syndrome (CRS), neurological events and brain swelling, and tumor lysis syndrome (TLS). So fingers crossed!