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by sdino
Fri Jun 19, 2020 8:06 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: TIL Immunotherapy at NCI
Replies: 625
Views: 218299

Re: TIL Immunotherapy at NCI

UPDATE 6/18/20 on my Wife: NCT01174121 TIL infusion 9/20/19. Brain resection one met 3/13/20. Two liver lesions destroyed by TILs in early 2020. Brain and Abdomen MRI's at UPMC on 5/27/20 reveal no metasis in either Brain or Liver. CT scan chest on 5/27/20 By Dr. Rosenberg’s measurements her target ...
by sdino
Fri May 08, 2020 8:05 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lung mets - Coughing up Material ?
Replies: 2
Views: 1014

Lung mets - Coughing up Material ?

Weird thing happened yesterday morning. My Wife got out of bed and coughed up a 1.0cm x 0.5cm little worm rubbery looking thing with alittle light colored blood. She feels great. I don't think its mucuous, it's alittle harder than that. It was off-white colored. Several lung mets are bigger than 2cm...
by sdino
Wed Apr 29, 2020 7:21 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Xeloda dosing and newbie questions. Please help
Replies: 15
Views: 1693

Re: Xeloda dosing and newbie questions. Please help

As JJH said, I believe one driving factor is the weight of the person. My Wife started out with 3500 mg/day. But was reduced to 3000 mg/day due to hand/foot syndrome. She stayed on Xeloda+Avastin from Aug 2018 to Feb 2019 with slight progression. Near Feb 2019, we could tell progression was getting ...
by sdino
Wed Apr 29, 2020 7:21 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Xeloda dosing and newbie questions. Please help
Replies: 15
Views: 1693

Re: Xeloda dosing and newbie questions. Please help

As JJH said, I believe one driving factor is the weight of the person. My Wife started out with 3500 mg/day. But was reduced to 3000 mg/day due to hand/foot syndrome. She stayed on Xeloda+Avastin from Aug 2018 to Feb 2019 with slight progression. Near Feb 2019, we could tell progression was getting ...
by sdino
Wed Mar 18, 2020 11:36 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: TIL
Replies: 11
Views: 1891

Re: TIL

Both these Trials are at National Institute of Health in Bethesda, MD. They do not care what type of HLA you have or Mutations as long as your cells react. You must be MSS. My Wife failed the NCT03412877 trial. Then they did the TIL trial NCT01174121 on her with good response so far. iTCR's Trial NC...
by sdino
Thu Mar 05, 2020 12:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: TIL
Replies: 11
Views: 1891

Re: TIL

MIXED BAG RESULTS Update 3/2/2020 Tumor Infiltrating Lymphocytes (TILs) Clinical Immunology Trial at NIH NCT01174121 : 24 week follow-up - 2 Liver lesions are Gone. Brain Met (3 mm) left side is gone. Targeted lung mets have shrunk by 36%. According to Cancer RECIST 1.1 this is considered by NIH as ...
by sdino
Mon Feb 24, 2020 10:41 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: TIL
Replies: 11
Views: 1891

Re: TIL

TIL Trial NCT01174121 at NIH/NCI is NOT mutation or HLA Specific... The team searches for TILs that you already have in your tumor and that are “reactive” to your tumor mutations – So it doesn’t matter what mutations or HLA you have. Just that you have reactive TILs that they can grow by the billion...
by sdino
Wed Feb 12, 2020 12:03 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: TIL Immunotherapy at NCI
Replies: 625
Views: 218299

Re: TIL Immunotherapy at NCI

Update 1/24/20: 18 week follow-up at Bethesda Trial NCT01174121, Some good news ! It appears the Tumor Inflitrating Lymphocyctes (TILs) are still Marching. My Wife showed SIGNIFICANT Shrinkage in her lung lesions. However several large "older" ones remained unchanged (which they said is so...
by sdino
Wed Jan 29, 2020 6:02 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Exciting immune system research
Replies: 9
Views: 1787

Re: Exciting immune system research

Looks like Dr Rosenberg’s TIL trial at NIH. The TIL trial uses selected T-cells that express reactivity to your specific tumor mutations and are grown in the lab by the billions and replace your T-cells that don’t fight Cancer. This UK trial is same premis, but they appear to use all your T-cells be...
by sdino
Fri Nov 08, 2019 3:12 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone with Kras G12V or G12D, NIH trial needs you
Replies: 24
Views: 7118

Re: Anyone with Kras G12V or G12D, NIH trial needs you

At NIH - For KRAS G12D that expresses ◦HLA-A*11:01 positive. Clinical Trial NCT03745326. Dr Yang is a brilliant Doctor.
by sdino
Tue Sep 03, 2019 11:27 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: New TIL trial NCT03412877 at NCI
Replies: 9
Views: 1036

Re: New TIL trial NCT03412877 at NCI

My Wife did the iTCR TIL trial NCT03412877 at NIH in late April 2019. She was the 5th person to undergo this treatment and the first person that had reactive neoantigens for TP53. However, it did not work. But since she has very highly reactive TILs.... Dr Rosenberg wants to do the Original TIL tria...
by sdino
Thu Aug 22, 2019 10:53 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Cleveland Clinic ?
Replies: 8
Views: 1114

Re: Cleveland Clinic ?

Thanks for the input Mohr and RockR. Yes I can see Cleveland Clinic going by a scripted playbook, that is what Roswell Park does. I DO NOT want a Treatment Facility like that anymore,. Looking for a little bit more out-of-the-box thinking. We shall see what happens with this 2nd go around of TIL inf...
by sdino
Fri Aug 16, 2019 2:43 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Cleveland Clinic ?
Replies: 8
Views: 1114

Re: Cleveland Clinic ?

Thanks for the reply gina - We had the same experience at MSK, they agreed with Roswell Park,,, so nothing innovative from them. We live in Western, NY and Cleveland is about 2 hrs. I read Dr. Burke's reviews/bio's that's about it. I may look into UPMC, Pittsburgh, PA or Strong Memorial in Rochester...
by sdino
Fri Aug 16, 2019 1:22 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Cleveland Clinic ?
Replies: 8
Views: 1114

Cleveland Clinic ?

Quick Question - It appears our Oncologist at Roswell Park, Buffalo, NY is leaving. Im thinking about taking my Wife to Cleveland Clinic Main Campus and possibly trying to see Dr. Carol Burke. Anyone have any thoughts on Cleveland Clinic and Dr Burke ? Thanks,
by sdino
Fri Jan 25, 2019 11:54 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Does anyone have any info on TCR trial at NCI?
Replies: 6
Views: 1096

Re: Does anyone have any info on TCR trial at NCI?

Well we heard back from NIH today, They want my Wife to start next round of Capecitabine (but they may stop it after only one week) they want her to hold off on Bevacizumab (Avastin) next week, So we have to be getting closer to TIL Infusion. No formal schedule has been determined as of yet.

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