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TIL. What do we know now?

TIL. What do we know now?

Posted By
ErinATC
4/18/2019 6:02pm
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Replies: 9

Hey all.

The doctor proposed looking into TIL therapy in Toronto. Currently my friend is doing really well on his Braf/Mek drugs after having a partial response to IPI/NIVO. His cancer progressed in his bones after ipi/nivo while everything else shrank. Now he’s on to targeted where he’s feeling pretty good. Strong. Working out almost daily. He is stage 4, with tumors just about everywhere you can list, and they weren’t small. 

Brain tumors have completely cleared up with no surgery/radiation.

I can’t find much on TIL studies that are recent. He is 42 years old, and was in excellent health before this. 

It would mean relocating to Toronto for him, which is a big move. Can anyone tell me what timeline is on average? what about current success rates, and via what method? I see lots about high vs low dose. 

 

Any, and all info or personal experiences are appreciated.

 

Thank you in advance,

I was watching a video about TIL from MD Anderson just yesterday.  It's pretty informative, but not hugely in depth.

https://www.facebook.com/MDAMelanomaMedicalOncology/videos/t-cell-therap...

mrsaxde - (4/19/2019 - 9:54am)

I did the TIL trial at NIH last year. Not counting the few days I was in hospital for the surgery, it was about 4 weeks from beginning to end. Week 1 was scans and such. Week 2 was chemo. Week 3 was getting my cells back along with IL-2. And the rest of the time was recovery and waiting until my blood counts returned to something close to normal. There were some rough parts, mainly the nausea and vomiting from the Cytoxan, and the fluid build up from the IL-2. But overall it was tolerable.

I don't know if there has been any change in response rates as they tweak things, but I was told I had about a 50-50 chance. It didn't last long for me. I was sent home on April 14, 2018 and by November 29 I was removed from the trial because of progression.

I received high dose IL-2. I haven't met or talked with anyone who has participated in a low dose trial. I do know that the docs told me that they had not found any correlation between the number of doses of IL-2 you receive and response rate. I was supposed to have 12. I could only tolerate 4.

I hope that info is of some help.

-Bill

ed williams - (4/19/2019 - 12:06pm)

I was hoping that Bill would share his experience with TIL's, if I could just to add a little Canadian perspective and what Toronto might offer that is different to what Bill did. First, a former member here, David McCaw did the trial in fall of 2017 in Toronto and at that time the TIL's trial was the same as what Bill did except after finishing the IL-2 David then moved onto Pembro monotherapy. In David's case he did progress with brain mets (treated in Ottawa with SRS) and in March of last year he died. David had run through all the other options of immunotherapy and targeted therapy first before signing up for the TiL's program, run by a Dr. Butler if my memory is accurate. Wishing you the best!!!Ed 

ed williams - (4/19/2019 - 12:13pm)

Here is a link to David's page on the forum with the medical history of treatment. https://www.melanoma.org/community/profiles/david-mccaw

ErinATC - (4/19/2019 - 12:23pm)

These stories are what I’m afraid of. It’s the same doctor (Marcus Butler) doing the trial. I do not doubt his expertise, but I wish there had been a bit more positivity coming from results.

Thank you for all the info, and the link to David’s page. 

ed williams - (4/19/2019 - 12:36pm)

Hi Erin, how we look at melanoma options is an interesting thing. ipi= around 22% of patients doing well for a long time. Pd-1 drugs some where between 30 to 40 % long term (4 to 5 years data) success, combination of ipi+nivo has 4 year reported data from checkmate 067 trial with 52% of combination patients still here and kicking. With the stats come perspective, I am here almost 6 years from stage 4 brain and lung mets, but why me? I know one thing for sure if I didn't sign up for the SRS radiation and the following checkmate 067 trial then I wouldn't be writing this response to you. TiL's is an option and there will be winner's and loser based on the stats but the only way to find out which group you will be in is to try. Dr. Butler will have data that he can share based on his research, there are many factors from how many cells they can develop to how well a person can tolerate the IL-2. I look at options as buying time until the research can develop the next option in this fight against melanoma!!Best Wishes!!!Ed 

ErinATC - (4/19/2019 - 12:35pm)

Bill,

Thank you so much for your reply. This board, and it’s people are incredible. I’m sorry to hear that your treatment didn’t bring the miracle we all hope for.

Can I ask what forms of treatment you had gone through before you switched to TIL, and why the switch was made? Are you BRAF positive? 

The trial he’d be going on also includes pembro afterwards. Was that the case for you?

Also, what’s next for you? 

 

Thanks,

Erin

mrsaxde - (4/19/2019 - 2:08pm)

Hi again Erin, 

The pembro following the TIL treatment was another treatment arm. I was not put in that one because I had previously progressed on pembro and the docs at NIH didn't think I'd get any benefit from it.

I am BRAF negative. In a nutshell, here is my journey to the TIL trial:

I was diagnosed in January 2013. Went through the usual surgical procedures. After 23 lymph nodes were removed I was declared cancer free. That lasted a little more than a year. Had another wide area excision in Sept. 2014. More skin spots were found almost immediately afterward.

I started ipi in November 2014. It stopped growth while I was receiving it, but then things started growing again. At that point I had several small spots in my right lung as well as the visible skin spots. Because some people have a delayed response to ipi both my local oncologist and Dr. Sharfman at Johns Hopkins recommended a little patience. When new spots kept popping up I started pembro.

I received pembro for almost a year and a half. At first the results were remarkable. Three spots on my back, and several nodules in one lung began to slowly dissolve after only one pembro infusion. Then, in April of 2017 a CT showed a small spot on my right hilum. My local oncologist didn't think it was anything of concern, but to be on the safe side she ordered a PET. Several lymph nodes in my chest lit up.

The initial plan was to do radiation plus more pembro. I went back to Dr. Sharfman and he thought I stood a better chance in a trial. He enrolled me in the LAG-3 trial at Johns Hopkins. I was in it for 6 months and it did nothing (or at least very little) for me. That was when he told me that my only choices at that point were to try to get into the TIL trial at NIH or to take temodar. I opted for the TIL trial.

So that's what got me to TILs. Feel free to ask me anything else you'd like to know.

-Bill

Hi Erin,

I don't have mel (my sister is a stage 4 NED victor!!) so please know that I am very humbly offering a different perspective. From what you describe, your friend is responding to and tolerating his current targeted therapy >> feeling good, strong, working out and clearing brain mets without surgery or radiation  - all of that is pretty miraculous (IMHO)!!!  

In my sister's case, we wanted to ride out, to the fullest extent, whatever treatment worked for her but always made sure we knew what the "back up" plan would be. Would this approach help your friend >> perhaps explore TIL in TO as much as possible and keep it open as a future treatment course .. while closely monitoring his ongoing current response to the BRAF drugs?

Just thoughts out loud ... but I wish you both the very best!!

Barb