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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: 459

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: 574

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: 574

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: 574

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: 732

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.
by sdino
Thu Jan 24, 2019 7:32 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Does anyone have any info on TCR trial at NCI?
Replies: 6
Views: 732

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

Hi Teri3 - we have heard crickets from our Fellow. Last week sent CT scan we had in Buffalo and requested an update. This week sent a email asking if we should or not halt chemo for next week, since we have to mail order our Capecitabine which takes several days. Have not heard back from NIH. Last s...
by sdino
Wed Jan 23, 2019 12:23 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Does anyone have any info on TCR trial at NCI?
Replies: 6
Views: 732

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

Hi Teri3 - I believe this is the new TIL trial. NCT03412877 Im not sure. We were offered this new trial after we were accepted into the original TIL trial NCT01174121.
by sdino
Wed Nov 07, 2018 9:56 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: KRAS G12V - anyone with good news?
Replies: 2
Views: 505

Re: KRAS G12V - anyone with good news?

Possible clinical trial at NIH/NCI - Administering Peripheral Blood Lymphocytes Transduced With a Murine T-Cell Receptor Recognizing the G12V Variant of Mutated RAS in HLA-A*1101 Patients. link to trial here : https://clinicaltrials.gov/ct2/show/NCT03190941
by sdino
Mon Oct 01, 2018 7:05 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: TIL Immunotherapy at NCI
Replies: 611
Views: 186296

Re: TIL Immunotherapy at NCI

I was at NIH on Thursday and receive some great news everything is the same. although they think the tumor in my lung may have once again shrank they definitely believe that it is fading. I was shocked when the doctor told me it was my 18th month since I received my TILs. wow how fast time goes by....
by sdino
Tue Sep 25, 2018 7:46 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: TIL Immunotherapy at NCI
Replies: 611
Views: 186296

Re: TIL Immunotherapy at NCI

Sleen wrote:Checking in to report that follow-up FOURTEEN was all good. I am still NED. :) :) :)
Next follow-up in six months.

Celine


Great News !
by sdino
Wed Aug 22, 2018 2:53 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Math Wizards-Xeloda (pills) vs 5FU (pump)
Replies: 3
Views: 757

Math Wizards-Xeloda (pills) vs 5FU (pump)

Ok so standard care on Xeloda is 2 weeks on and 1 week off. Say if you take Xeloda from Monday and end 2 weeks later on a Monday, How long does it take during the off week that Xeloda vacates your system ? 5FU pump half life is just a few hours, BUT how long is the pill form remain in your system ? ...
by sdino
Wed Aug 22, 2018 1:11 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone with Kras G12V or G12D, NIH trial needs you
Replies: 19
Views: 5453

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

Hi JacknKatieMom - I would still reach out to NCI/NIH and get the ball rolling with inquires and get your name in front of them.
by sdino
Sun Aug 19, 2018 3:10 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Back from NIH good news kind of about TIL trial
Replies: 4
Views: 788

Re: Back from NIH good news kind of about TIL trial

Yes Teri3, I think the longer we can hold out, the better their technology is getting. Proof in April when we went from the original TIL trial to the newer Younger TIL trial and vaccines offered). Of course you/they have to weigh the options as not to put you at risk. Exciting times with Dr Rosenber...
by sdino
Sun Aug 19, 2018 1:35 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Back from NIH good news kind of about TIL trial
Replies: 4
Views: 788

Re: Back from NIH good news kind of about TIL trial

Same here, Til infusion scheduled in April 2018, new TIL trial offered to us then. Stable CT scans in Mar-May-July 2018. On hold, then.... my Wife was offered in June - 4 NIH trials, 2 TILs and 2 Vaccines. We had 2nd infusion of TILs or vaccine's slated for Aug 2018. Then they decided on 2 trials (T...
by sdino
Wed Aug 08, 2018 11:53 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: NIH trial update .. my T cells are growing!!
Replies: 20
Views: 5084

Re: NIH trail update .. my T cells are growing!!

Great news teri3 ! Cells are growing ! Has NCI/NIH determined Reactivity of your cells ? Best wishes !

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