The Colon Club

DAS43, hope all goes well with the induction!

I have a question on the TIL trials. How long does it take to actually get into the trials once you apply? Are there any steep fees? A lot of red tape?

I really believe Ron should be in one, since his cancer GREW again after good results on FOLFIRI. They put him on maintenance chemo in the summer and his 10/18 CT scan showed increased growth in his liver and his lung! Now his onc wants to try FOLFOX. Do you think this will do him any good?

For the whole past week that he took NO chemo at all, he is feeling weak and tired every day! Is this a sign of liver failure?

Thanks SO much!!

ronswife wrote:I have a question on the TIL trials. How long does it take to actually get into the trials once you apply? Are there any steep fees? A lot of red tape?

I can tell you that the TIL trial at NIH will cost almost nothing for the patient, but travel for caregivers is not reimbursed. Any of the TIL trials will take several months. First step is to send all of your medical records and recent scans. They will be looking for a large (bigger than 1.5cm), easily resectable tumor. We had good results with two taken from the lung, but they can get them from other places as long as the surgery isn’t difficult. If they want to see you, they will invite you for a screening within a couple of weeks (they don’t normally pay travel for this visit). Then schedule surgery a couple weeks later. Then the waiting starts. If everything goes well, about 3 months after surgery, they will call you back for a month of in-patient treatment. The treatment includes a week of chemotherapy, the cell infusion, and a day or two of cytokine infusions, followed by a couple of weeks of waiting for your immune system to recover. After they let you go, they will want you to return every 6 weeks or so to check the shrinkage of the tumors. If everything shrinks and continues shrinking, they will reduce the visits to quarterly after about six months.

Also affecting timing, they require a 4 week chemo wash-out period before surgery and before cell infusion, so you need to consider whether that will be too long off chemo for him.

I think that M.D. Anderson plans a similar trial, but I don’t know anything about criteria, timing, or costs.

ronswife wrote:For the whole past week that he took NO chemo at all, he is feeling weak and tired every day! Is this a sign of liver failure?

There is no way to know w/o testing. Have you looked at his bloodwork? Low hemoglobin (Hg or Hgb on lab reports) would make him feel that way. Reports are usually on an institution's patient portal. This is a question for the medical oncologist.

Regarding timing of events:
For reference, my initial screening visit was March 19, 2015.
Harvest surgery was April 1.
Cell Day was July 1.

A lot of data and some biologicals will be requested prior to an in-person screening visit. Is that what you mean by red tape?

Celine

Just a quick heads up for patients, who are not based in the US:

I received an email saying that NCI does "off site registration" for overseas patients. However, they require their guinea pigs to remain in the US for 3-4 months after treatment.

Can any of you locals recommend a budget friendly area for flat-sharing? Doesn't have to be in Bethesda but needs access to public transport (anywhere up to 6 hours on bus or train is fine). Don't know how I would make this happen but doesn't hurt doing my research before going through the elaborate screening process.

dudette wrote:I received an email saying that NCI does "off site registration" for overseas patients. However, they require their guinea pigs to remain in the US for 3-4 months after treatment.

This is great news! Were you asking specifically about the TIL trial? I had different information when it came up a few months ago. At that time, they said that enrolling overseas patients was not possible, due to the nature of the follow-up appointments with this particular trial. It would be wonderful if they've reversed their opinion on this!!!

Celine

I asked about whether they know of any researchers in Germany or somewhere other in Europe who are doing TIL "stuff". While they couldn't help me with my question, the research nurse mentioned that they would screen me overseas for the following TIL trial: https://clinicaltrials.gov/ct2/show/NCT01174121?term=10-C-0166&rank=1

That's pretty big news because it never occurred to me that I might be able to participate in a clinical trial in the US. Hopefully it's good news for others on here, too.

HOLY BEANS!
Thank you for sharing this news. The link you posted is the same one we're talking about on this thread. Not sure if you're aware of that?
Fantastic! Please keep us posted on your screening process.

What country are you in?

Celine

I'm in Germany. Apologies for creating confusion by re-posting the link.

Thanks to this thread I became aware of the TIL trial.

dudette wrote:I'm in Germany. Apologies for creating confusion by re-posting the link. Thanks to this thread I became aware of the TIL trial.

I'm so glad that you did post it! Thank you!!!

Celine

I am back from follow-up #9. Seems they want to keep scanning me every three months or so.
This set of scans showed that ALL IS WELL, still.

Exciting news this time is that Dr. Rosenberg met with me in the clinic. He informed me that the NEJM will be publishing the story of my case in a few weeks. It was surreal.

I asked my fellow specifically, "How many responders have there been?" and he said, "2 of 11". He said that my case is included in those figures.

More news: The first patient to be treated after the shut down will receive cells very soon! The shut down of the NIH labs this past summer is part of the reason they've only got eleven cases to report. Given the fact that I was told that I was one of "7 or 8" that got treated on cohort 2, they must not have treated more than four patients on cohort 3 so far.

An update is on my blog. See link in sig.

Celine

Dearest Celine,
I'm so happy for you, so happy. What other words I could use. Thank you for sharing this with us : ))

(Now I'll go and brag about knowing online "an historic figure in medicine" )
Celebrate with the family!!!!!!!!!
much love

So happy to hear your good news! Exciting to be "published" isn't it!? Thank you for helping find a cure for this nastiness!
Wonderfullymade

DH2Sleen wrote:
I think that M.D. Anderson plans a similar trial, but I don’t know anything about criteria, timing, or costs.

I've been lurking following all the posts from this thread, and just first wanted to thank you for keeping us informed on this important trial, and congratulations on your success. I've been hanging on to my application but I'm not ready to apply yet.
I did want to share since I saw you mention other trial locations that I have some information that the Trial could come to University of Nebraska Medical Center in Omaha.
I happened to end up sitting next to a prestigious pancreatic cancer reasarcher, Dr. Hollingsworth on a flight home to omaha about 8 months ago. He had just left Baltimore after meeting with Dr Rosenberg and others about bringing the trial to Omaha. He suggested it would be within 2 years if it went through. It was funny because I had a copy of the time magazine which featured the article about Dr Rosenberg'so trial and was explaining to my son about the trial and my desire to try to get in and Dr Hollingsworth overheard.
I'm just very hopeful for something like this to come to the Midwest.

Sleen wrote:I am back from follow-up #9. Seems they want to keep scanning me every three months or so.
This set of scans showed that ALL IS WELL, still.

Exciting news this time is that Dr. Rosenberg met with me in the clinic. He informed me that the NEJM will be publishing the story of my case in a few weeks. It was surreal.

Celine

Happy Dance, Happy News . So very happy for you.

Congratulations, keep up the AWESOME job!

Love this thread. Thank you for all the info and the people that you have helped..

Lee