[cancer] Some details on my NIH schedule

I fly back to DC next Tuesday, and check into the NIH inpatient facility that evening.

Wednesday I’m getting a CT, a brain MRI and an abdominal MRI. I’ve asked for an Ativan to help me be still for two hours inside the MRI tube.

Thursday I’m getting my chest catheter put in.

Friday (3/7), the chemotherapy starts. It will be in two phases. The first phase will last 48 hours, with twice daily infusions of about two hours each. This phase will require me to be awoken and have my urine output monitored every two hours during that entire period. I have been told not to expect to get a lot of sleep those two days.

The second phase will last five days with twice daily infusions of an hour or so each. During that period, I will be allowed to go out on a pass if I want to lunch with family or friends, or just be out of the hospital.

The cellular infusion will occur on 3/14, and it’s a one-time event. The variable days after that are the number of times I can tolerate the thrice-daily infusion of the helper drugs intended to activate the TIL cells. Those occur at 7 am, 3 pm and 11 pm. Very few patients have lasted all five days, to maximum dosage.

I’ll then be in recovering until my immune system is sufficiently robust for me to be released. That can be as little as seven days, but that patients with a lot of chemotherapy history usually take longer. I pointed out to the nurse I was speaking with that I’d had 1,600 hours of IV chemotherapy over the past five years, which seemed to surprise them. They said, “That’s a lot.” Figure at least ten days for me, possibly two weeks.

I can have visitors whenever I’m willing to tolerate them, but while I’m neutropenic I won’t be allowed flowers in my room.

So there’s two points of variability in my stay length, but if I had to guess, I’d say three-and-a-half to four week inpatient experience.

Return followups will be on a monthly basis for at least the first two months.

7 thoughts on “[cancer] Some details on my NIH schedule

  1. Barbara F. Smoody says:

    so, TIL for Pi Day. a unique concoction while the rest of us have to settle for cherries, sugar and maybe ice cream if we plan that far ahead. for you, a whopping serving of Big Science–with a lot of planning ahead. thanks for the update.

  2. Terry says:

    You know we’re all wishing you smooth sailing, however that’s defined in this situation. *hugs*

  3. Jay, I’m hoping, hoping, hoping that this works. Connie Crooker’s story is still fresh in my mind. A last-ditch, way-long-shot try at interleukin-2 to beat back inoperable tumors made her incredibly sick and didn’t work. Then they zapped the tumors with radiation and bingo! The amazing shrinking tumors. She’s not cured, but she’s still dancing and tent camping 5 years later. I so wish the same for you.

  4. Jay, You will be in my thoughts as you go down this adventurous path. I’ll put some good thoughts out there in the universe for you. I hope it’s not too difficult for you, but at the same time I know you will face it with your sense of humor intact.

    We’ve never met, but you matter, to me and a lot of other folks.

    Wishing only the very best for you.

    Jules

  5. Julie Nordeen says:

    Will be thinking of you. I know from my dad’s experience the risks involved with the next phase of your treatment and I think it’s hearbreaking and amazing that you’re choosing to undertake the path. I’m glad you have confidence in your NIH team and I’ll be pulling for you all. Big Hugs.

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