Two Weeks on Hold

I was hoping to be writing this blog post from the hospital while receiving a new (larger) dose of CAR-T cells.  Alas, no, not yet.  My treatment has been postponed for 2 weeks.  Instead of going into Beth Israel on 9/5 for lympho-depleting chemo and receiving the CAR-T cells on 9/10, I hope to do the treatment on 9/19.  It turns out there are complicated rules that govern how you can participate in the clinical trial, and I tripped up on one of them.

For much of the summer I had a growth on my skin at the base of my throat that bothered me.  I called for an appointment at my dermatologist, but the best they could do was give me an appointment 2 months out on August 20^th.  I called a few times to see if I could move it up because of cancellations, but no luck.  They cut it off and sent it for a biopsy.  It turned out to be a squamous cell in situ carcinoma.  To verify that they had removed it completely they scheduled a “scrape and burn” procedure in a week.  I thought that was OK because that was 9/4, just before I was to start the CAR-T treatment. 

But no, it turns out that you are not allowed to start the procedure if you have any open wounds.  The first 3 days they give you lympho-depleting chemo which will reduce your immune system so that the CAR-T cells can more easily take up residence in your body.  But meanwhile you are more open to infection than normal.  Well, should I have started the CAR-Ts first, before dealing with the squamous cells?  No, because you are not allowed to start the treatment if you have any cancerous growth (other than multiple myeloma) bothering you.  So the solution was to have expedited the dermatology appointment in the first place.  Barbie attended the scrape-and-burn session, and she let the dermatologist know her opinion of them not having an appointment for someone with a real problem for 2 months.

The real problem is that life was going to be on hold for the 19 days I was in the hospital.  The net result is that I have nothing going on for the next 2 weeks.  Yes, it is not as boring as sitting in the hospital, but still one's life is on hold.  I just pray that there isn’t something else that comes up to delay the start of the treatment again.  Ideally, the next post will be from the hospital.