Happy New Year!
My tenth (Ten?!? I can hardly believe this) follow-up after TIL therapy was last week. My scans are clear; I'm still NED!
Dr. Rosenberg and I were approached by NBC to do an interview together for the Today show, and the NBC Nightly News. We each agreed, and so Joan Lunden interviewed us at the NIH last week. This show will air in early February (exact date TBD).
Cameras followed me and my docs around the NIH for two days. My participation ended at Thursday's interview, but Ms. Lunden spent more time w/Dr. Rosenberg. She put a photo on her FB wall here
, of the two of them looking at my lung CT. The whole experience was pretty stressful for me (the chicken!), but overall a very positive experience.
During the interview, Dr. Rosenberg repeated several times that patients should call the NCI/NIH if they're interested in finding out more about this trial. If YOU are interested in it, and chemo with either oxaliplatin OR irinotecan has failed you I encourage you to call (866) 820-4505 BEFORE the story airs.
Consider this post "insider information"
I think the phone lines are going to be very busy, soon after it airs.
You have to be relatively healthy to join this trial. ECOG of 0 or 1. You must be stage IV with at least 2 tumors (one to harvest, and one to track). See details on the clinicalTrials.gov website (link in sig).I am always asked:
Q: Do I have to have your same mutation to be considered?
A: No! They try to develop a treatment based on YOUR mutation(s)
Q: Do I need to have genetic testing done before I apply?
A: No! NCI/NIH will do all of the genetic tests required.
Q: Do I need my oncologist's OK to participate?
A: No! You may self-refer (this is what I did) if you are interested in applying. You WILL need your oncologist's support to gather the required medical records.
Q: I am afraid to go off chemo for this. Do I have to?
A: NIH requires a 4 week "wash out" from chemo prior to harvest surgery, and another 4 week "wash out" prior to TIL therapy. After TIL therapy, you remain OFF chemo unless progression is found upon follow-up. BETWEEN harvest surgery and TIL therapy is a waiting period for you (and a very busy time for the researchers). If needed, patients can receive chemo while they are waiting for their treatment to be developed. This will be discussed with you at your screening visit.
Q: Does it matter if I am MSS or MSI ?
A: No! Whatever YOU bring them is what they use to try to develop a treatment.
Q: Can they use tumors from [ fill in a body part ]
A: Probably! I know they've developed treatments for patients w/TIL from tumors in liver, lymph nodes, lungs, omentum...
Q: Is anyone else offering this treatment?
A: Not at this time. Bethesda, Maryland is the one and only trial location. You would travel there for 1) screening, 2) harvest, 3) treatment, and then (we hope!) for many follow-up appointments afterward. Patient travel is reimbursed by the trial sponsor.
MORE INFO can be found at the links in my sig.