Is it time to change the name of this blog? I think it might be a jinx!

I am literally losing track of time. So rather than a detailed timeline I’m just going to explain where we’re at and why.

I am currently in a holding pattern in Boston waiting on an application for expanded access application from the FDA. On Friday the sponsor determined that my platelets did not meet the criteria for the clinical trial (required:50; mine:15). However, they did approve me for compassionate use pending the FDA/IRB approval.

The vast team at Dana Farber including my oncologist, Dr. Munshi, and Dr. Jacob Laubach, principal investigator on the trial have written a protocol for the use of the CAR-T cell therapies already engineered for me.

Timing: The application was sent late afternoon on Friday, now it’s the weekend, and Tuesday is MLK national holiday.

On Friday I received fluids, a unit of blood, and a unit of platelets. Today was an off day. Tomorrow I go for lab work and possibly more blood products. Sunday is also an off day.

Assuming I get approval from the FDA on Tuesday I will be admitted and get the lymphodepletion chemotherapy inpatient as there is concern that my low counts will go even lower.

I’ll update again as soon as I hear from the FDA.

Thanks for all the well wishes and checking in.

Lots of fasting

Lots of tests/procedures = lots of fasting.

Tuesday: drove to Boston while fasting since the morning. Had bone marrow biopsy with conscious sedation. Highly recommend the conscious sedation for this procedure.

Wednesday: fasted in the morning for a PET scan. In the waiting room for the PET scan received a call from the research nurse that neither the study nor my insurance would pay for the PET. A few hours later, they called and said insurance would pay for a full body MRI that afternoon. Later that afternoon they canceled the MRI and got the approval from the study for the PET.

Thursday (tomorrow): I have my line placed at 12:00 and the PET scan at 3:30. No food for me! I have to fast from 6 am to 6 pm.

The schedule has been changing minute by minute since I arrived. Hard to complain, they’re doing the best they can, and having several people calling to keep me updated.

All that said, the working title for this post was SNAFU – Situation Normal: All Fucked Up.

Tomorrow is a new (fasting) day!

Limping to the Goal Line

O.k., perhaps that is a little over dramatic. However, these last few weeks have not been great. Mostly manifesting itself in my blood counts being too high or too low, depending.

Calcium too high (headaches, and possible confusion), solution = zometa and fluids. Possible cause, myeloma attacking my bones causing calcium to leach into my blood stream.

Low hemoglobin, aka anemia. I am apparently sensitive to anemia, throughout Christmas and afterwards the slightest activity (moving things in the refrigerator, washing my face in the shower, etc.) caused me to be terribly out of breath, solution = blood transfusion. Causes are either from the treatment I’ve been getting (but am done now until right before I go inpatient at Dana Farber/Brigham and Women’s Hospital) or from the multiple myeloma.

Very low platelets.

Low ANC, again very low, causes me to be immunosuppressed. They have been giving me Neupogen shots and this week added an antibiotic to be on the safe side.

Bone pain, this is definitely the myeloma. I am most comfortable standing or sitting up very straight in a chair, which makes resting a bit difficult. I did finally ask for something for the pain and they prescribed oxycodone (5 mg, take one or two every 6 hours). I feel like they hardly work, therefore I haven only tried them a couple of times. For now I am sticking with Tylenol.

Some nausea (helped by anti-nausea meds), and some serious fatigue (short cat naps help). I actually took some hours off of work a week ago, I simply passed out on the couch in the morning and then again in the afternoon. This is the first time throughout this entire illness (starting in 2014) that I have needed some hours off of work.

I am also trying to plan and get my act together for being away from home for 4 weeks (at least). I booked the hotels (the pharmaceutical sponsor is paying – yay!). Started planning some food/eats with Alison and Lisa. Thinking about packing clothes and everything else I will need. Continuing the count down – as of this evening I have 6 more work days and 2 weekend days to be fully prepared.

I’ve also put together my calendar:

Now, that most of the planning is done, it’s just thinking about the unknown of what the medical procedure will be like.

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!