TIL Immunotherapy at NCI

[Sleen]

I asked the attending, but he only said that it's "really hard to pin down."
I knew that already

Celine

[deebashari]

Hi Celine, hope all is well. I am eagerly looking for a promising treatment for my mom. I’m a student and try actively looking for solution day and night researching. I actually cane across your story regarding your treatment at NIH. How was your experience? What was the response rate? Was it remission response for all patients that showed a response? Any inside on the gene mutations that could potentially benefit from this treatment? My mom is non msi-high stage iv with kras g12v mutation. Any suggestions would be helpful. It’s very hard juggling school while actively researching and taking control of this for my mom. I would also being willing to meet with you and or speak with you regarding your experience. Thank you again.

[NHMike]

I'm back to report on Follow-up #13. Lucky 13

My scans show no signs of cancer! Bloodwork is good. Still NED.

They asked me to consent to a new study where they will do research on my T-cells. They'd like to figure out how to "turn back the clock" and revert them to a previous state, when they were stem cells. They want to know how/why my cells are behaving differently than some other patients' cells. I signed the papers--Patrick (DH2Sleen) signed as witness. I was assured that no apheresis would be necessary!

I got to meet another mCRC patient who will be starting the trial this week! Not sure if this person posts here or not.

The attending told us that they're working on changing the trial to use "young TIL" from the patients. They hope the young TIL will be more reactive. My understanding is that they'd use the patient's own T-cell receptors for this. I don't know the timeline for when this change is going to happen.

I'm due back in six months for follow-up 14.

Pro Tip: If you haven't yet tried Crystal Light powder in your iohexol, I highly recommend it. A very kind fellow-patient saved me from tossing my cookies in the CT waiting area on Monday by adding some flavor to my final cup of "juice". I know that some institutions use flavored slurries for their contrast, but NIH uses a clear, nasty-tasting (to me) watery contrast instead. It gets more and more difficult for me to swallow each time. I'll be packing Crystal Light from now on!

Celine

Thanks for the update. I went through the normal treatment but it's nice to know that this is a possibility if I get a recurrence.

I'd really like to know if I have one of the Alleles that this stuff works with.

[Sleen]

... I am eagerly looking for a promising treatment for my mom. ...How was your experience? What was the response rate? Was it remission response for all patients that showed a response? Any inside on the gene mutations that could potentially benefit from this treatment? My mom is non msi-high stage iv with kras g12v mutation. Any suggestions would be helpful...

Hello!
Very briefly: My experience is all on my blog (see link in sig.) there were many ups and downs.
Response Rate: They have not published the results yet, since it is an ongoing trial. I have heard of four patients who are experiencing a durable response. There may be more that I don't know of, however.
Gene Mutations: They expect to find a variety of mutations that will work. They're still learning. They attempt to create a treatment with whatever mutations and HLA the patient brings them.
Dr. Yang (who works with Dr. Rosenberg at NIH) has a trial specifically for G12V mutations, if the patient has a particular HLA. That trial info is here.
The trial that I did is listed in my sig.

If you'd like to learn about other trials, check out the Clinical Trial Finder.
Another great resource is colontown.

Celine

[Sleen]

...it's nice to know that this is a possibility if I get a recurrence.

I agree! There is a lot more hope today than ever before! I think you're smart to keep reading and learning in case you might need the info some day. I'm hoping you won't need it though

Celine

[NHMike]

...it's nice to know that this is a possibility if I get a recurrence.

I agree! There is a lot more hope today than ever before! I think you're smart to keep reading and learning in case you might need the info some day. I'm hoping you won't need it though

Celine

The Adjuvant chemo has been brutal too. I suspect that the TIL would have been easier than Neo-Adjuvant Chemo + Radiaion + Surgery + Adjuvant Chemo and I would have been left without loss of functionality. In ten years, I suspect that this will be the routine care if you have the right mutation + alleles and it will be far easier on patients.

[deebashari]

Hi sleen my mom is going for a consult for til trial. How long do you have to be in the hospital? Can she be at a hotel or does she have to be there for 4-weeks?

[Sleen]

For consult patients are not normally inpatient.
Harvest surgery and apheresis will require a 2-to-4 day hospital stay.
If all goes well, the treatment visit will require 3 to 4 weeks inpatient. Sometimes patients stay elsewhere at the beginning of this stretch, but once nutropenia sets in, they're safest in the hospital.

Celine

[deebashari]

I'm on my way back from Bethesda after an NIH TIL trial follow up. The first scan wasn't very good, so I expected to be dropped from the trial today, but the second scan was mixed: some lesions slightly larger, some slightly smaller, so I may be getting some benefit after all. I'm scheduled to rinse & repeat the scan in a month. Wishing DAS43 & all others the very best. /jdepp

What mutation, stage, and micro satiliete status do you have?

[deebashari]

My Wife had lung wedge resection surgery this week 1/8/18 at NCI/NIH to harvest her TILs. Everything went well and today we will go home after she completes Aspheresis. Now we wait and see for 3 months if the harvested cells grow with the proper mutations. Incredible stuff going on down here in Bethesda, MD.

Hello my mom is doing the this trial and we are waiting. How was your result? Was the response immediate? Are you in remission??

[sdino]

Hi Sharijohn - We are still awaiting word from NCI/NIH if her TIL cells are reactive in the lab. Should know something within the next 2 weeks or so...

Steps and timelines after TIL harvest Surgery:
1. After TIL Harvest Surgery = 2 to 3 weeks if cells are growing by the billions.
2. After TIL Harvest Surgery = 2 to 3 months in lab to see if TILs are reactive. - This is where we are at.
3. TIL infusion @ NCI = 4 to 6 week stay in hospital.

[DH2Sleen]

Steps and timelines after TIL harvest Surgery:
1. After TIL Harvest Surgery = 2 to 3 weeks if cells are growing by the billions.
2. After TIL Harvest Surgery = 2 to 3 months in lab to see if TILs are reactive. - This is where we are at.
3. TIL infusion @ NCI = 4 to 6 week stay in hospital.

I just wanted to add that the process doesn't end with release from the NIH hospital. After release, the patient is seen for follow-up every 4 to 6 weeks. The first follow-up doesn't typically show remission, but, if it is working, it may show some haziness around the tumors on the CT scans. The second or third follow-up may show some shrinkage, but they will not consider the patient to have responded until they have 2 consecutive scans that show at least 30% reduction in targeted-tumor major-axis total length. So, my point is that this process takes a lot of time. But, if it works, it is well worth it.

[DAS43]

Just returned home from my 3 Month check-up at NIH. good news nothing has changed. The tumors they are monitoring in my left lung has remain the same size although they still think it is fading. I will go again in 3 months which will be June for another CT scan and MRI brain scan. I asked while I was there what the current success rate is and I was told it's around 25% . That number is for all cancers except the melanoma the melanoma is much higher. I was also asked to participate in another study. They will be using samples from the tumor they took that they have left over to make stem cells with the hope of being able to program those stem cells into tumor infiltrating lymphocytes. Very exciting things happening at NIH.

[Sleen]

wooHOO! So glad to see this update
I signed the same consent. Exciting stuff!

Congratulations!!!

Celine

[mariane]

Congratulations!!!#
This 25% is very very exciting number!
Such a good, good news!
Thank you! And best wishes!