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Beginning TIL Therapy at NIH Next Week

Posted: Sat Jul 30, 2022 12:42 pm
by prayingforccr
I will undergo a VATS procedure to harvest a tumor(s) from my lungs Tuesday, and leukapherisis Thursday to remove as many of my white blood cells as they can.

They will attempt to extract lymphocytes currently within and fighting the harvested tumor and grow them in the billions in the laboratory for four to five weeks, after which time I will undergo Keytruda to stimulate the immune system pre infusion, then followed by interleuken 2 post infusion.

The time in the hospital for the keytruda/TIL infusion/interleukin 2 is anticipated to begin in mid to late September, to be four to five weeks in duration and is not without risk (primarily from the interleukin 2).

I will continue to update as things, hopefully, progress.

Re: Beginning TIL Therapy at NIH Next Week

Posted: Sat Jul 30, 2022 7:10 pm
by MadMed
Outstanding pccr, good luck, this is a good plan. I hope for you and all of us this works. Please let us know how it goes, we’re all rooting for you.

Re: Beginning TIL Therapy at NIH Next Week

Posted: Tue Aug 02, 2022 5:51 pm
by prayingforccr
VATS wedge tumor harvest completed today.

Leukapheresis scheduled for Thursday.

Then home for six to eight weeks while the TIL are grown in the lab (hopefully).

Then back here for four to five weeks for infusion etc etc.

Re: Beginning TIL Therapy at NIH Next Week

Posted: Tue Aug 02, 2022 6:11 pm
by prayingforccr
MadMed wrote:Outstanding pccr, good luck, this is a good plan. I hope for you and all of us this works. Please let us know how it goes, we’re all rooting for you.


Thank you, MadMed.

Re: Beginning TIL Therapy at NIH Next Week

Posted: Tue Aug 02, 2022 6:29 pm
by Markdale
Hope you’re recovering well from the surgery. Treatment sounds very interesting, really hope it works

Re: Beginning TIL Therapy at NIH Next Week

Posted: Fri Aug 05, 2022 5:58 pm
by prayingforccr
prayingforccr wrote:VATS wedge tumor harvest completed today.

Leukapheresis scheduled for Thursday.

Then home for six to eight weeks while the TIL are grown in the lab (hopefully).

Then back here for four to five weeks for infusion etc etc.


Looks like the TILs will take 2-4 months to grow in the lab.

I need to do treatment up until one month before the infusion at nih, and am looking to do the sbrt/opdivo/yervoy until such time looking to get that abscopal effect going before the TILs are introduced.

Re: Beginning TIL Therapy at NIH Next Week

Posted: Sat Aug 06, 2022 7:59 am
by DarknessEmbraced
I hope all goes well for you. *hugs*

Re: Beginning TIL Therapy at NIH Next Week

Posted: Sat Aug 06, 2022 4:56 pm
by MadMed
Good to see things progressing pccr. This is a good plan.

Re: Beginning TIL Therapy at NIH Next Week

Posted: Sat Aug 06, 2022 6:23 pm
by prayingforccr
MadMed wrote:Good to see things progressing pccr. This is a good plan.


Thank you, MadMed.

I recognize how extraordinarily “lucky” I am to have all the stars align and afford me these treatments.

I think it’s the Holy Grail.

If I had listened to mskcc/mda/local oncologist, I would be almost a year into FOLFIRI/Avastin with no hope of cure or remission.

I refused the treatment and would do so again today and tomorrow.

Re: Beginning TIL Therapy at NIH Next Week

Posted: Mon Aug 08, 2022 8:35 pm
by Thedruid
I am really interested on knowing more about this treatment, PrayingforCCR. As it uses keytruda during the treatment, should I understand this treatment is valid only for MSI people ?

Thanks,

theDruid

Re: Beginning TIL Therapy at NIH Next Week

Posted: Mon Aug 08, 2022 9:08 pm
by beach sunrise
Been thinking about you pccr!

Re: Beginning TIL Therapy at NIH Next Week

Posted: Wed Aug 10, 2022 8:36 pm
by prayingforccr
Thedruid wrote:I am really interested on knowing more about this treatment, PrayingforCCR. As it uses keytruda during the treatment, should I understand this treatment is valid only for MSI people ?

Thanks,

theDruid


Keytruda is ancillary to the treatment, really.

The crux is that lymphocytes that are currently within and fighting my mets/lesions will be extracted and grown in the lab by the billions with the intention of infusing them back into my body via the bloodstream in the hope/expectation that they will seek out any cancerous cells in my body and kill them.

It’s personalized immunotherapy, basically.

Dr Rosenberg wrote a paper in the nejm on this in 1988, he is the father of immunotherapy, and is the head of nih where I am being treated.

Re: Beginning TIL Therapy at NIH Next Week

Posted: Wed Aug 10, 2022 8:37 pm
by prayingforccr
beach sunrise wrote:Been thinking about you pccr!


Thank you, beachsunrise.

I am going to push hard the next four months, and am expecting the best outcome.

I’m going to be doing the sbrt/opdivo+yervoy treatment prior to the TIL.

Re: Beginning TIL Therapy at NIH Next Week

Posted: Fri Aug 12, 2022 5:19 pm
by ginabeewell
I hadn’t realized immunotherapy was available for patients who weren’t MSI, unless they had a high tumor mutation rate.

Really interested to follow this and hoping for all the best for you!!

Re: Beginning TIL Therapy at NIH Next Week

Posted: Sat Aug 13, 2022 10:51 am
by prayingforccr
ginabeewell wrote:I hadn’t realized immunotherapy was available for patients who weren’t MSI, unless they had a high tumor mutation rate.

Really interested to follow this and hoping for all the best for you!!


Mass Gen is doing a clinical trial using sbrt/opdivo/yervoy for mss

https://clinicaltrials.gov/ct2/show/NCT ... w=2&rank=1

Will it work? Who knows?

I think between the two treatments (first one at nyu/weill beginning in two weeks, and the other at nih later in the fall) that I have a real shot at remission.