TIL Immunotherapy at NCI

[DH2Sleen]

They want me to come in for scans and resection on the seventh this happens pretty quick. Decision time.

That is great news Kenny. But I would expect that this visit will not include resection. They have to get all of the scans and meet to decide; those meetings typically happen the following Monday. Then they schedule the resection a couple of weeks later. Good luck!

[lilacbreastedroller]

Jeopardy music: https://www.youtube.com/watch?v=73tGe3JE5IU

[KWT]

Haha Karin. I need a little more than thirty seconds not much more mind you.DOH

DH2, yes that may be the case but they want me to talk to onc and stop chemo so that they can make this a one trip deal. They did say I may have to come back but they're trying to eliminate a trip.

[DH2Sleen]

That would be better. Two trips take a lot of time, especially from Oregon, and they don't pay for the screening trip if they don't do surgery.

[Sleen]

KT, that's awesome!!!

Celine

[KWT]

KT, that's awesome!!!

Celine

Yeah, I think they're trying to fit me in in one trip. That's was actually their suggestion, but a lot depends on thoracic surgeons schedule.

I figure why am I fighting with some greedy friggin insurance company over RFA therapy???? When I can get in on some cutting edge stuff?

[Sleen]

Now you're talkin'

Celine

[KWT]

Celine or Karin, I'm getting slight cold feet, I heard that out of 17 only one patient had a response and had to go back for more treatment. Is that accurate to your knowledge?

[lilacbreastedroller]

Might be right. This is not a cure... yet. Even the star patient, Melinda Bachini (cholangiocarcinoma) is not NED as of today, after two separate treatments. Yeah.

Rosenberg and his team keep tweaking the treatment, as a result of us mice. At first, they just harvested T-cells (TILs), grew them in a lab, and then shot them back into some patients. That did not produce stellar results (except in melanoma patients, I believe) until Melinda B. After her good response, I *think* they figured out what the T-cells were attacking and isolated her tumor's mutations. Her second treatment were TILs that were especially grown to attack the mutations they found. Then, it really worked, but she still isn't NED - she has stable disease, no new growth, and slow shrinkage (she posts to a cholangiocarcinoma board like this one). She still goes back to NCI for checkups, and who knows, she may receive a third treatment if they develop something better.

Since her second treatment, I believe Rosenberg and his team have changed the whole experiment to now test for mutations first, and only inject mutation-reactive T-cells back into the patients. So I"m not sure how that phase of the experiment is going, for people with solid tumors, since it's relatively new. This is what Sleen and I are doing. I think the article in Science last May just reported on the first phase. Sleen? DH of Sleen?

To me it's worth the risk because I've exhausted all other options. This is my last year on the planet if this trial doesn't do anything for me, or if it isn't, I"m hobbling around suffering from the effects of Stivarga which really really suck...

You're healthier and have less cancer (than I do) so maybe you can wait a year and try for it again, or not... If you wait, likely the treatment will better because of us mice who came before you! It's a gamble for sure, but I think it's worth trying for because it is personalized medicine. your t-cells attacking your mutations.

Karin

[janderson]

I am actually looking into this as well now. I filled out an application with NCI this morning. Just preliminary, they didn't even ask for what trial. I studied the trial. It does sound brutal being in the hospital for 4 weeks and I guess also receiving a cocktail of 3 chemotherapies as well if I am reading trial info correctly.

[Sleen]

...I'm getting slight cold feet, I heard that out of 17 only one patient had a response and had to go back for more treatment. Is that accurate to your knowledge?

Kenny, I went through a similar phase when I realized just how new this protocol is.
Your mileage may vary, but I decided that:
a) it won't kill me
b) chemo is not going to cure me...heck, chemo might kill me faster than cancer does
c) participating in this trial won't exclude me from trying other stuff later if it doesn't work
d) it's free
e) my participation might benefit others
f) this protocol gives me hope for a cure, or at least long-term stable disease
g) I've got nothing to lose except my hair, and 3 to 4 weeks away from my family

The docs at NIH will address all of your concerns. In retrospect, I wish we would've recorded the conversation with the attending physician--there was a lot to absorb. Take time to consider what they say. You are not obligated at any point during treatment to proceed with it, but I would wait to make that decision until you speak to one of the researchers directly (maybe you already have, but I didn't until I was there for the initial screening).

Celine

[DH2Sleen]

I would just like to add a couple of things:
1. Besides being free, they will do a complete genome study on you and your tumor. That info could be used for other targeted treatments later if you need it.
2. Karin is right about the protocol changing; they are now making Antigen Producing Cells containing tandem mini-genes specific to your mutations to refine the TILs like patient 3737s second treatment.
3. The most significant down-side I see (besides the month in the hospital) is the weeks off chemo you need before tumor removal surgery. And... if you are having surgery May 9, shouldn't that be... now?

I believe in this trial and the doctors at NIH. I think you will all do well.

[lilacbreastedroller]

yeah... what he said!!!

Kenny - what are you having reservations about?

John - super. IMO you'd be a good candidate b/c you've lived so long.

atb
Karin

[KWT]

yeah... what he said!!!

Kenny - what are you having reservations about?

John - super. IMO you'd be a good candidate b/c you've lived so long.

atb
Karin

Hey Karin, I guess this just happened very fast. I'm just worried that I'm rushing into this. I'm going to get the results from my petscan Monday and go from there. Hopefully with the RFA approved now I can play a little whack o mole. And as another member called it "tread water for a bit".

[lilacbreastedroller]

Good luck with the rfa.

my cells reacted!!!! This is great news. Means they attacked the mutations in my tumor, ie my t-cells are not dumb as a box of rocks.

Next step is a final checkup and then hopefully I'll receive the treatment.

Karin