TIL Immunotherapy at NCI

[EverySunriseCounts]

That is an awesome story, Sleen! Love that you now have the evil beast in a freezer in case you ever need treatments against it again. Please keep us posted on the findings. So happy you've reached the land of NED.....

[vilca11]

Fantastic, incredible, unbelievable - no words!!!! Congratulations, dear Celine, this is an inspiration for the whole forum crowd, heal, be well and LIVE.... Hugs and mucho amor, Vilca

[jortego128]

Incredible news, simply miraculous. It sounds like they are on top of this thing and have the gun loaded and ready to shoot should it rear its ugly head again. Im so glad for you. I thank God for the incredible response you've had.

Josh

[spinka]

I am so glad to have found this thread and thankful for the information Celine has shared with everyone. I have been following this trial since last summer (as I waited to progress on first line therapy, CAPOX-Bev, which happened just recently). Unfortunately, as I was about to go in for eligibility screening I was informed all trials were being halted because of this:
http://www.npr.org/sections/health-shot ... h-hospital
After I could not find out much, my oncologist called them and was told there was a fungal contamination, which is not something we don't know from the publicized info already. Generally, they are not releasing a ton of detail. I am wondering if anyone is also affected by this and / or may have heard about the timeline that they are working with to resume trials etc. Thank you!

[Sleen]

I just got back from NIH yesterday, and this is the info I was told:

The initial (fungal) contamination was found in the pharmacy--not any of the labs.
As a result of that, NIH voluntarily had all of the labs tested for any problems. Upgrades are now underway that affect only the labs which are involved with any patient-infused materials.

They hope to be up-and-running four weeks from now, however, this timeline is heavily dependent on whether or not equipment gets delivered on schedule.

Enrollment of new patients has been halted until the changes have been implemented and tested.

Celine

[spinka]

Thank you, Celine! This is the most complete information I got from anyone. Fingers crossed. I hope your surgery recovery goes smoothly and the tumors keep shrinking. Your positive attitude is awe inspiring.

[ronswife]

I am FASCINATED by this info! I wonder if my husband could qualify for this?

[saffa]

I chatted to Ellen from the immunotherapy section at the NIH today and she was really great

The trial was still not open for recruitment but she said although they couldn't give me a time frame, I should check back in in two weeks or and with a bit of luck we would be up and running again.

She also mentioned that as I am only on my second line of chemo they would only consider my case as soon as I had progression on this chemo and not before then (understandable since the procedure is experimental).

She asked me if to my knowledge I had any easily respectable sites - mentioning that a lymph node nearest to surface would be ideal, with liver or lung coming second to that. Since I have had HAI my liver would not be an option for getting a tumour sample.

She also confirmed that prior immunotherapy use (PD-1 or MEK inhibitors) would not be exclusion criteria from the trial even with the Keytruda being added into the trial currently. So although I think this a fantastic trial this would almost steer me towards trying an immunotherapy combo out before heading to the trial, although the fact you need to be quite healthy for this trial is something I need to bare in mind.

She mentioned to me that extensive liver involvement was a basis for exclusion from the trial owing to time off chemo that it would require (pre tumour sample extraction and pre infusion - 30 days in each case).

I am still really keen for this trial but there are definitely certain aspects that scare me a bit!

[ronswife]

Well, my hubby does NOT qualify for this trial since he has very heavy liver involvement!

[saffa]

Ronswife,

It can't hurt to send scans anyway and try! I have pretty extensive involvement as well!

[spinka]

Hi Saffa,

Thank you for sharing the update regarding the lab closure. That is more or less consistent with what Celine said a little while back. I have been on pins and needles about this a little bit, since I have not had any IV chemo since January, only Xeloda and things are slowly starting to grow. I will be calling them next week, just to see if I need to skip the upcoming Avastin, which would be wise, if the reopening of the trial is pending.

Do you mind me asking who is Ellen? I have been in touch with Jessica and when I inquired about the lymph nodes, she said they tend to not do those (although she did not say why). I will press her on it a bit more next time we talk. I wonder if size is an issue?

Thanks!

[Sleen]

Not Saffa, but
This is contact info for the current referral nurses at NIH:
Jessica Yingling: yinglingj@mail.nih.gov <-- if this email bounces, try: ncisbirc@mail.nih.gov
Ellen Bodurian: ellen.bodurian@nih.gov...

I emailed my fellow, and the research fellow last week, hoping for some "scoop" about when the trial might re-open. They both estimated "July", but of course that is just their guess. If you're interested in the trial DO CALL or email to see whether any preliminary data-gathering can be done on the patient end of things.

They can (and have) used tumors from lymph nodes, lungs, liver, etc. it is a matter of size and location. They want to do the least-invasive surgery possible, to ensure the patients' safety and readiness to undergo the trial.

Celine

[ronswife]

Thanks Sleen for the email addresses!

[Sleen]

Got an email from my NIH fellow yesterday. The TIL trial has re-opened, finally. Here's a quote from my doc: "A practice run is going on in the cell lab. If it goes well, we are tentatively planning to start the first patient treatment the first week of July."

The link to the trial is in my sig.

Celine

[crazylife]

Hi!

Anyone get an undeliverable message?