Showing posts with label TIL trial. Show all posts
Showing posts with label TIL trial. Show all posts

Wednesday, September 27, 2023

Follow-Up #19

Greetings, readers. I am late to update.

In October last year, I suffered a compression fracture to my spine. When I could bear the thought of riding in a car, I saw my G.P., who Rx prednisone, which was a problem. After undergoing TIL treatment, we patients are to avoid steroids in perpetuity (and I have the Medic-Alert bracelet to prove it...I'm not actually wearing it anymore, however. Shhh...).

Me: I can't take steroids.

G.P.: You can't? Why not?

Me: Because of the clinical trial. They told me "no steroids, forever because they are bad for lymphocytes."

G.P.: I am more concerned with your spine right now than with your immune system. Here's the Rx. Have a nice day.

What to do? Usually, I trust this G.P., but I wasn't keen to contradict the instruction given by The Guy at NIH. I sent my immunotherapy fellow an email. His response:

Steroids are an immunosuppressant and could therefore interfere with the key mediator behind your amazing response. For that reason we kindly ask that you continue to avoid steroids...

And so I didn't take the steroids. Instead, I lived with an ice pack pressed to my spine almost constantly for weeks. I swallowed lots of Advil and Tylenol and it was no fun! No fun at all. To date, this pain was worse than even the accidental spleen biopsy of 2014. Thank God for the numbing effect of ice, or I may have lost my mind. 

In the spring I was feeling much, much better and took the annual trip to NIH for follow-up nineteen. I met the new attending doc, and had a little chat about the news regarding my former Lab Guru and the success he had when using my T-Cell receptors to treat a patient with pancreatic cancer. 

Me: It seems they're being very careful not to tie this case to mine, or even to the NIH. Why do you suppose that is the case?

Doc: Well, there are a lot of rules about what they can and can't say. I mean, it's not like you're Melinda Bacchini. Her case was written up in the New York Times! Anyone can talk about her! 

Me: << confused silence because, hello: NYT Article >>

That conversation ended right there. The doctor went on to say, "Maybe it's time we stopped your follow-ups. You're doing so well. I will look into that."

A week or so later, after not hearing from the attending doc on this point, I reached out again to my fellow. As I suspected, NIH is not stopping my follow-ups yet. I will return in the spring for another one. I have to say, I'm feeling invisible to this new attending doc!

The good news is: I am still NED! and still very, very thankful to be. This month marks ten years since my initial diagnosis. All glory to God, and thanks to the NIH and the amazing people who worked on my cells, and who took care of me so well.


Friday, April 9, 2021

Follow Up 17

I'm happy to report that my scans were clear!

This visit was a little different, due to COVID-19 restrictions. First off, my longsuffering husband was not allowed in the building with me.

The building seemed quite empty with no visitors. COVID screening and mask-donning happened just inside the entrance. I imagine these precautions will continue for quite some time.

You might think that after six years of visits to Building 10 that I'd know the place like the back of my hand. Well. That is not at all the case. I am a person who could get lost on her own doorstep. Thankfully, I did make it everywhere I had to be. Most people will be able to use NIH's "Take Me There" app (found here) to navigate inside Building 10. However, I am not most people. My ancient Tracfone cannot accommodate such new-fangled wizardry.

Another change from standard protocol is that I was not required to drink oral contrast prior to my CT scan. Oh frabjous day! It was music to my ears. Instead of drinking a liter of iohexol, I was treated to four cups of refreshingly cool, clear water. I was instructed to drink it with a straw, leaving my mask in place as much as possible.

I will return in one year's time, God-willing.

The Five Year NED mark was reached on Wednesday.
Five years of good health. Five Christmases. Five Birthdays. Twenty-Five kid-years--so much happens in a year. I am so thankful to still be here, and a part of it all.

To God be the glory!

Thursday, June 11, 2015

More Screening

With apheresis and the MRI behind me, a new set of tests was scheduled for the next day.  I had a lung function test in the morning, which was not very exciting.  I merely had to inhale in one quick, deep breath, and then exhale while the tech kept saying, "Go…go…go!go!go!" to the point that I was sure I was exhaling nothing but dust particles from the very bottom of my lungs.  Expiration testing happened twice.  Next came a test which I think is called, "Hold Your Breath Until You See Stars."  That test was repeated once, but then I was done!  Easy peasy.  No fasting; no radiation.  My favorite.

Up next, a renogram.  This is a test that determines whether or not the kidneys are doing their job.  This one isn't standard for the TIL trial, but since I had had surgery on both kidneys shortly before I was diagnosed, the medical team wanted to make sure that my kidneys were going to be able to withstand the drugs required for the trial.

As I've mentioned in previous posts, no female under the age of 55 gets near the imaging equipment without a negative pregnancy test.  Once again, my admittance to the scanning area was postponed while we waited for the results of a "STAT" pregnancy test.  After almost an hour, I was escorted into a room that felt about as large as my dishwasher.  The scanner took up the majority of the space.  The poor technician had no room to maneuver at all.  He positioned me on the narrow table, face up.  The beam-generator was underneath me embedded into the table and aimed at my lower back.  When the tech needed to move to the opposite side of the table, the only option was for him to duck under the table!  There was no room to walk around.

The poor technician (tPT) lugged a locked, leaden case into the room and removed a vial of the radioactive element technetium.

Me:  What's in the box?

the Poor Technician:  Technetium.

Me:  That sounds like a made-up name.

Patrick:  What isotope?

Me [in my head]: Wait, what? That's a real thing?

the Poor Technician:  Ninety-nine.  It's one of the daughters of molybdenum.

Me, unspoken:  [One of the what?  These two are going to hit it off famously...]

My husband and tPT then yammered on and on about the Periodic Table of Elements, isotopes, and half-lifes (lives?) as tPT arranged the equipment. I only rolled my eyes and marveled at just how geeky my husband is. Twenty-five years of marriage had not--until now--revealed (to me, at any rate) the depth of his knowledge of chemistry. It was a little disturbing.

FYI, technetium is number 43 on the Periodic Table of Elements.  I won't hold it against you if you don't care.

tPT injected the radioactive technetium into my vein via the I.V. that remained in my left hand from the previous day's apheresis procedure.  (Thanks again, Vein Lady!)  He then ducked under the table and popped up on the other side to adjust the computer monitor so that we could watch as a grainy black and white image became visible there. "Those are your kidneys," he explained, pointing to the screen.  "Now lie still.  This will take forty minutes."

The images on the monitor brought to mind an hourglass with technetium playing the role of the timer's sand.  Instead of the typical hourglass upper chamber, this timer had two—two kidneys filling up with radioactive "sand", and slowly emptying into a lower chamber, the bladder.  tPT injected what I think was saline into the I.V. numerous times during the course of the test, ducking under the table each time.  He probably would have preferred it much better had the I.V. been placed in my right hand instead of the (far) left hand.  It would've meant a lot less exercise for him.

Minute after slowly-slogging minute passed as we watched grainy specks of light on the screen move from the kidneys into the the bladder.  At one point a man in a khaki uniform came in to check on our progress.  (I found out later that he was a member of the National Health Service.  Their uniforms are remarkably similar to those of the Navy.)  Finally, the forty minutes expired and I was released with the instruction, "Drink lots of fluids."  Later, my immunotherapy fellow would report that my kidneys were in good shape.  It was another hurdle cleared on the way to the clinical trial.

Next up was an interview with some anesthesiology people—first a nurse, then a doctor.  They pretty much repeated each of the many, many questions that other people had already asked.  Each one double-checked that the information stored in my electronic file matched my responses.  No one could accuse NIH of not being thorough enough.

The anesthesiologist shared this helpful bit of insider-intel:  the food service menus in the rooms are "merely suggestions".  She explained, "You can order anything you want.  Go, have a milkshake!  You have surgery coming up…but nothing after midnight.  Not even water!"  Though I was tempted to, I didn't order a milkshake that night.  I discovered later that this bit of intel was not entirely accurate.  Though in theory, I suppose I could "order anything I want", that didn't mean that it was available.  Oh well.  It doesn't get any easier than merely dialing "3"...

Not-so-pleasant was sharing a room with another patient.  My roommate on 3NW was a lovely woman who happened to snore like a chainsaw.  Surgery to remove a lung tumor for use in the clinical trial would happen the next day; "first of the morning".  Listening to the snoring, I reminded myself of what seems to be the over-arching principle concerning my ability to find rest in a hospital--any hospital:  "No sleep for you."  Though it was past 11:00 PM, I ventured out of the room in search of a place to read. 

Four hours later, I returned to the ward on the wrong side of a locked door...