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!

    Published by

    Heather

    I never thought I’d be writing a blog, and certainly not one that is all about me, and yet, here I am. For me life has always been interesting, not mundane, not always exciting per se, but hardly ever the norm. When I say “It’s always something…” I don’t hear it as my life is a mess, it;s always something. It’s more of life is challenging and evolving and messy and inspiring and wondrous, it’s always something. I grew up in suburbia, buy my grandfather was the head of the Communist Party in the U.S. I was raised keeping that a secret, so that was something. I am tall, always have been, really tall (6’1″), I was taller than every human being in my elementary school when I was in 6th grade, that is still something. My parents divorced in my teens. I got a full basketball scholarship to Duke University. I married my high school basketball coach, 18 years my senior. I raised a stepson. I had two amazing kids of my own. We had a multicultural household, secular christian (I guess that’s what I would call it, you know Santa and the Easter Bunny) and Judaism, I used to say if it was a holiday – we celebrated it! We were uber involved in our community, mostly through youth athletics, coaching, managing and spectating. Our kids grew up, I started a photography business on the side (I hope to share some photos here) and we planned to travel a bit together, went to Portugal for our 25th anniversary and then my husband was diagnosed with stage 4 prostate cancer, initially they gave him 5 years, but he only survived for a little over two. I was going to say lived, but really, it was more like surviving. That, indeed, was something. I became a widow at 49. It was the worst thing that ever happened to me. But, then it was something in another way. I relearned who I was. You don’t realize how much of you becomes a combination of you and another person in a relationship. And not in a bad way, it is essential, and you don’t lose yourself, you just evolve. And I found myself suddenly alone, and learning about myself and who I had become over the years, what was just me, and what was part of who we were together. Which in retrospect, was probably hardest on those around me who had gotten used to the old me, or never even knew the original me. A year later I found love again. Sold my home of 31 years and moved closer to work. I became more fit, ate more healthfully and was amazed that I could be happy, truly happy, in the wake, no not wake, but the shadow of such profound grief. And that is truly something, something amazing and unexpected. And then, through some routine blood work in April 2014, and a visit to a hematologist and bone marrow biopsy in May, I was diagnosed with multiple myeloma. And so, yes, for me right now it’s multiple myeloma, but that is not all, there are still highs and joys, and the mundane and the rest, but something like cancer does cast a pretty long shadow.

    14 thoughts on “Cutting Edge”

    1. Hi Heather. I wish you the very best with this new treatment. I think you are the bravest person I have ever known. To go through all you have and now to move forward with a new trial!
      My best friends husband found out in September he has multiple myeloma and is doing well. He is 81 and was in Viet Nam and had contact with Agent Orange. No bone marrow transplant for him since he is too old.
      Best wishes and prayers for you. Have a save and Happy Thanksgiving. peace, prayers and blessing. Carol

      Like

    2. Such an immense ordeal. And,, yes, you are extraordinarily courageous. But maybe mostly you are unbelievable optimistic. I’m cheering for you all the way and in my heart every day.

      Liked by 1 person

    3. I don’t want you on the cutting edge. And, if this is what needs to happen -then alrighty, I’m grateful doctors are looking out for you and keeping you on their mind and the cutting edge. I love you dear friend and wish I could be your 0-30 day care giver. Laura

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    4. I admire your strength and courage Heather! I bet on you to beat this cancer down!! I’m sending you lots of love and good wishes. You’ll be in my thoughts every day my friend 🙏🕯❤️

      Liked by 1 person

    5. Heather,
      Your West coast family wishes you the very best outcome in your quest for a long and healthy future. We are so impressed with your courageous and forthright response to a situation that would overwhelm a lesser soul. While we’re too far away for big hugs, we feel very close to you and Scot, and hail your resolve to succeed. Our love and thoughts are with you , every step of the way.
      Nancy and Rod

      Liked by 2 people

    6. Hi Heather, Thank you for giving us the information about the next step. You are a lovely, amazing person and I wish like h*ll your life was boring without all this medical stuff. Although you never live a boring life anyway! Wishing you all the best always. Hugs and smooches, Denise W.

      Liked by 1 person

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