As previously indicated, the surgery went very well. There were no complications in the OR, and two tumor masses about 1.3 mm each were sent off to the TIL lab for extraction, and eventually, a great deal of expansion growth. With respect to thoracic surgery team, they were able to successfully complete my surgery with the VATS procedure. This has made my post-operative recovery much less brutal than previous procedures. Even the GI restart has gone better, presumably because of the lower levels of anesthetic required for the procedure. I am very happy with that outcome.
The TIL cell growth
Though it’s early days yet, we have received strong positive reports from the TIL cell lab. The target cells are present in the hoped-for quantities within my extracted tumor tissue, and process of enticing them out for further growth is going quite well so far. This doesn’t have any particular predictive clinical significance, but is something nice to note.
Whole Genome Sequencing (WGS) and TIL cell selection
Dr.s Klebanoff and Klemen, who are managing my participation in the study, inform me that they are making good use of of the WGS data. Having a map of my mutations is allowing them to filter the TIL cells by affinity, producing a truly personalized immunotherapy poocess here. Again, my thanks to everyone who supported that fundraiser last year. It continues to pay dividends.
Post-operative complications and getting out of the hospital
We had a couple of minor-but-annoying post-operative complications. For a while I was running a fever which climbed into the danger zone, but climbed back down again. We also had issues with lung drainage and my O2 saturation. The O2 sat dropped below 80, which caused much excitement in certain quarters. I seem to have since recovered. Based on eventual post-operative healing, I should have 95-97% of my original lung capacity. Subtract from this whatever effect the dozen or so tumors in my lungs are having and I should still be oky.
All of which is to say, I’m probably fit to be discharged today, but they’ll want to recheck my lung function, recheck my infection status, and go over the state of my surgical wounds and any requirements for wound care.
Having the chest drain pulled out
This is the second time I’ve had a chest drain pulled out, and I remain convinced that is is my least favorite somatic experience, ever. The doctor was patient and let me take a dose of Lorazepam to chill out before he came in and did the deed. My dad watched, and tried for some photos without getting in the way.
Telling healthcare professionals things they don’t want to hear
I’m a “hard stick”. To a phlebotomist or to an IV or chemo nurse, that means someone with difficult to reach veins that don’t cooperate well. Unfortunately, a great many patients with perfectly normal veins consider themselves “hard sticks”, because of bad past experiences, a dislike of needles, a desire to be treated more carefully than average, or some other reason. So when you tell someone you’re a “hard stick”, they tend to smile and nod and go about their business, because they’ve heard it all before.
Some years ago, an exasperated phlebotomist ignored my declaration that I was a “hard stick”, then poked about five dry holes in me before telling me with some surprise that I was indeed a “hard stick”. This was not news to me, I pointed out. They coached me how to explain to a phlebotomist in very specific terms that I was in fact a “hard stick”, truly a patient with difficult veins, and by-pass the natural cynicism that declaration engenders. It’s been useful.
I’ve since found another medical issues where so many people call it out to clinicians that clinicians essentially ignore that as background noise until the evidence presents itself. One is that I experience profound constipation from even relatively minimal dosages of opiates. Everybody gets constipated from opiates, so this statement from me tends to be ignored with a patronizing smile. No, really, I say, my personal best is nine days post-operative with no bowel movements, followed by a bounceback admission to the hospital to be treated for pathological constipation. That sometimes, but not always, gets their attention.
This time at NIH, I hammered on this point so frequently and so hard that I eventually got a low-opiate anesthesia and pain management plan for both surgery and post-operative recovery. When they finally took me off the epidural yesterday, the nurse told me she had my hydromorphone ready. I refused her, which startled her so much I wondered how many other patients had ever refused hydromorphone. Instead, we managed pain control with Toradol, gabapentin and Tylenol.
Meanwhile, we were pouring quite a few laxatives down me, and I was eating meals that typically cause me to have heavy, loose bowel movements. Yesterday afternoon, that dam broke with a vengeance, producing a truly astonishing amount of stool. There have been sufficient encores for us to conclude this is the real thing and my GI is back on line.
Next steps at NIH
I’ll probably be discharged from the inpatient facility today. I would expect a follow or two over the next couple of days. Our next formal involvement is coming back in a week ahead of the completed growth of my personalized TIL cells. The WGS-driven selection process may add some time, as in effect, they’ll be designed a new section of the protocol for that. I’m the first patient who’s ever com through the door with that much data.
We have asked for a tour of the TIL cell lab this week, so I can write about it here. That seems to be in train, but with no dates yet.
The earliest I’ll be back here for the next phases of treatment is a little less than two weeks. It could be three or more.
The fundraiser carries on even in the face of success
The Science Fiction Author on Trial (NIH trial, that is!) fundraiser made goal. Thank you! The expenses are what they are, now and later in the year. To respond to the interest from you guys, we are working on some stretch goals. Keep an eye out.