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.