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Re: TIL Immunotherapy at NCI

Posted: Thu Dec 08, 2016 6:48 am
by Maia
Love the pic on the Houston Chronicle too.

This is a link to the full version of The Wall Street Journal, with pic of Dr Rosenberg :) https://drive.google.com/open?id=0Bwc5k ... VNDZ0ZBWG8

Re: TIL Immunotherapy at NCI

Posted: Thu Dec 08, 2016 8:54 am
by Wonderfullymade
Wow! What a nice article! Thank you for all you've done for us!

Re: TIL Immunotherapy at NCI

Posted: Thu Dec 08, 2016 2:11 pm
by dudette
Loved the read and the photo!

Thank you for being one of the courageous trail blazers and bringing hope to the rest of us.

t/

Re: TIL Immunotherapy at NCI

Posted: Sat Dec 10, 2016 2:35 pm
by Lee
CONGRATULATIONS Celine,

Wonderful article and such great hope for others.

So happy for you,

Lee

Re: TIL Immunotherapy at NCI

Posted: Mon Dec 12, 2016 6:28 pm
by Sleen
Thank you all for your kind words in this thread!
A snippet from my life recently:
Me: Good morning, daughter! [to 17 y.o. dd as she gathered breakfast items]
dd: << staring at me >>
Me: Hello?
dd: << still staring >>
Me: You ok?
dd: The New York Times, Mom?
Me: Yes. Cool, huh?
dd: The New York TIMES...MOM!
Me: Yes...
dd: You never told us you were THAT SICK.
Me: Oh. Really?...SUCCESS!!!
dd: << eye roll >>

ha ha.
Latest blog post is up (see sig.) THE ONE HUNDREDTH.

Re: TIL Immunotherapy at NCI

Posted: Tue Dec 13, 2016 2:41 am
by plastikos
How difficult is it to get into this trial? Is it open for Kras wild type, MSI-H patients?

Re: TIL Immunotherapy at NCI

Posted: Tue Dec 13, 2016 7:38 am
by DH2Sleen
plastikos wrote:How difficult is it to get into this trial? Is it open for Kras wild type, MSI-H patients?


Now that is a good question that we (Sleen and I) want everyone to understand. This trial is open to every CRC type!

We have been trying to stress this fact ever since the NYT article came out. The trial is not just for MSS, not just for Kras mutated, you do not need to have genetic testing or HLA testing before applying.

The trial has been hard to get into for many people. The actual criteria is listed here: https://clinicaltrials.gov/ct2/show/record/NCT01174121. In simple terms, you must be younger than 70, have gone through primary chemo with oxaliplatin or irinotecan, have a life expectancy of at least 3 months, 3 or fewer brain mets, and have a tumor that they can easily remove that is bigger than 1.5cm (longest diameter). They also require a chemo break before tumor "harvest" surgery and before treatment with the cells.

Ironically, people who have been told they are not candidates for surgery because they have too many tumors in a given organ, or in multiple organs, may be ideal candidates for this surgery. Normally, a cancer surgeon is looking to remove most or all of the disease with the surgery, and won't put a patient through the ordeal of surgery if the surgery alone can't be expected to significantly increase life expectance. In this trial, they intend to leave significant disease behind to watch for remission. They will operate to remove only enough cancer cells to do their testing and lymphocyte growth. But they will not do high risk procedures and need about 2 cubic centimeters of tumor tissue, so they like to see tumors that are at least 1.5 cm diameter and prefer tumors greater than 2.0 cm.

I would love to see the NIH hospital overrun with CRC patients. The more patients they treat, the more mutation/HLA combinations they will find that work. The future is NOW and progress will only be made through treating more people.

I hope you apply and find the same success we did. Call this number to talk to the admissions nurse: (866) 820-4505

Re: TIL Immunotherapy at NCI

Posted: Tue Dec 13, 2016 5:35 pm
by stu
Sleen ,
I am just over the moon for you . You deserve mum of the year award for being able to keep things normal around your kids. I love the conversation with your daughter.
Kind regards,
Stu

Re: TIL Immunotherapy at NCI

Posted: Tue Dec 13, 2016 7:27 pm
by teri3
Oh Celine that conversation with your daughter got me....mine are older but I don't let them know how bad this is. Right now they don't need to know because I intend to beat this. Mothering done right!
Hugs
Teri

Re: TIL Immunotherapy at NCI

Posted: Sun Dec 18, 2016 10:20 am
by AngelaN
Hi everyone,
Time to post an update on my husband's progress in the trial...It's been a crazy month....
So he had his harvest surgery on Oct 20. Did great, home in 3 days (4 days earlier than they expected). In mid Nov we heard that his cells were not growing and they suggested we find another option. We used THE SPREADSHEET (as I fondly call it) to research other options, and landed on a trial at JHU. Interestingly, I didn't get a warm and fuzzy from them, and I started thinking we should treat his largest lung met instead. Our oncologist didn't think the science was strong, and he did some of the studies with head/neck cancer with the drug, and he agreed with me. As we were back and forth about the treatment plan (6 phone calls from the oncologist in 12 hrs - that man is amazing....) NIH sent us an email to tell us they now have cell growth! So we are moving forward with radiation for his large lung met, and are waiting another update next week for John's cells. I am a physician, so I feel sometimes that I have a faster path to pushing docs into what I think is best, but that's a blessing and a curse. We are praying every minute of every day that the cells continue to grow and we have activity against his tumor.
In the meantime we moved into a new house the week before Tgiving and are finishing up our construction of my gym this week. I don't want to delude anyone...this has been extremely stressful. Seeing the articles about the trial in the New England Journal, NY Times and the Philadelphia Inquirer have been great. We had several people forward them to me and ask if I heard of this trial and would it be good for John. I was proud to say - already enrolled, and cells are in the lab! Thanks to Celine for putting this study out there. I followed her blog for well over a year before I even told my husband there could be another option.
For those of you contemplating the trial, the process is easy and NIH is the hospital in the Garden of Eden. Feel free to PM me if you have questions or my email is angleamnicholas@gmail.com.

Re: TIL Immunotherapy at NCI

Posted: Sun Dec 18, 2016 9:23 pm
by Sleen
Happy to see this update, AngelaN! Hoping for more (and more and more) good news :)

Celine

Re: TIL Immunotherapy at NCI

Posted: Sun Jan 08, 2017 12:01 pm
by Sleen
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.

Celine

Re: TIL Immunotherapy at NCI

Posted: Sun Jan 08, 2017 12:21 pm
by teri3
Thank you some much for sharing this. It was very timely for me , I see my oncologist Tuesday to see if Folfiri worked for me. Again thank you
Hugs
Teri

Re: TIL Immunotherapy at NCI

Posted: Sun Jan 08, 2017 1:27 pm
by Lee
Celine,

That is so AWESOME and congratulations. Please keep us updated when it will air.

Again CONGRATULATIION!

Lee

Re: TIL Immunotherapy at NCI

Posted: Sun Jan 08, 2017 3:23 pm
by Pita
Thanks for the info and Congrats on your treatment and success!!! and now becoming a TV star 8)

Have been thinking a lot about this trial since you posted about it here. Probably sounds ridiculous but I'm struggling with where it's at, across the country from me. Happy to have a time limit now, will help me with the decision to call or not.
There is a trial here close to me which I've applied for and if it falls through I now I see a few in Denver that look interesting and think I might fit where my daughter lives, that would be a much easier decision.