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by sdino
Thu Oct 08, 2020 11:13 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Sigmoid colon large tumor
Replies: 6
Views: 1222

Re: Signoid colon large tumor

Hi Lily – My Wife just had a Colonoscopy last week. She has a large sigmoid colon mass located approx. 15cm from her anal verge. Due to the size of tumor and surrounding edema, they were unable to advance the scope pass the tumor. With this all being said, National Institute of Health took out a 5cm...
by sdino
Wed Oct 07, 2020 11:41 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Tumor Surgery and CEA
Replies: 1
Views: 1392

Tumor Surgery and CEA

Quick question, my Wife had a sizable 5cm tumor removed from her left lung. She still has two 2cm tumors in her right lung. Would her CEA go down because of less tumor burden after resection ? Or because CEA is bloodborne, would there not be change in CEA ?
thanks,
by sdino
Thu Sep 17, 2020 2:28 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Xeloda Avastin Maintenance Plan
Replies: 9
Views: 883

Re: Xeloda Avastin Maintenance Plan

My Wife was on Xeloda + Avastin for lung mets from August 2017 to December 2018 where she was stable and CEA remained good. Then, met progression started slowly happening and CEA upticked in January 2019 where NIH hauled her down for a TIL trial in Early April 2019.
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: 219792

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: 1168

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: 1926

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: 1926

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: 1962

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: 1962

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: 1962

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: 219792

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: 2030

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: 7156

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: 1060

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: 1128

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...

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