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Re: Beginning TIL Therapy at NIH Next Week

Posted: Wed Sep 21, 2022 3:08 pm
by claudine
It is so hard to live with uncertainty! We all want to know what will happen and when, but unfortunately with cancer one has to do their best to live with a lot of uncertainty...

When you say
they will not perform the infusion/procedure unless the cancer is progressing
, is it something new to you? That wasn't discussed before? Seems like a pretty huge omission if that's the case!

Wishing you strength for the upcoming two weeks - it's so hard to enjoy life when so much hinges on a future event.

Take care XXXXX

Re: Beginning TIL Therapy at NIH Next Week

Posted: Wed Sep 21, 2022 3:28 pm
by beach sunrise
Goodness! Not sure what it all means but seems like you still have an option if the other doesn't work?

Re: Beginning TIL Therapy at NIH Next Week

Posted: Wed Sep 21, 2022 3:45 pm
by claudine
Really messed up situation now.


Why? If I understand correctly:
* Current treatment works, no need for TIL -> cured
* Current treatment does not work, TIL possible and works -> cured

Of course there are all the "in between", which may not lead to a cure NOW but if QoL is good under current treatment, there's always the possibility of new cures in the future, even though I know you're not interested in pursuing treatment unless with curative intent available now. But that bridge isn't ready to be crossed, you will know a lot more in a couple of weeks. How long before the docs decide if the current treatment is working?

Re: Beginning TIL Therapy at NIH Next Week

Posted: Wed Sep 21, 2022 3:59 pm
by claudine
I hope you manage to enjoy life in the meantime (easier said than done, I know...). How's the FL weather now? Are you still swimming daily?

Re: Beginning TIL Therapy at NIH Next Week

Posted: Wed Sep 21, 2022 4:32 pm
by roadrunner
I’m going to echo Claudine and argue for “the glass is (at least) half-full” here. I totally get that your TILs need to make the grade, so clearly we’re all rooting for that. Beyond that, though, the other options all seem to hold promise. If the immunotherapy works, you’ve got at least regression and more time (for curative therapy and just in general). Plus the TILs are on ice, so nothing is lost. If not, you go right to the TILs, which is a promising new approach that may yield real benefits, either in terms of cure or time. As Claudine pointed out, time isn’t just time, it’s also progress, and the potential for curative progress or more life extensions.

I definitely understand the way emotions get buffeted around on this journey, and your has heavy wind right now, for sure. But a lot of these look favorable at the moment. The one caution I’d propose: If you supplement your program with alternative therapies, I’d suggest making sure they don’t interact poorly with the immunotherapy or—if it comes to that—the TILs. I expect you’ve got that covered, but just noting in case you haven’t thought of it. I recall that your alternative approaches had some immunosuppressive effects in the past, so it’s something to be mindful of, perhaps. Anyway, good luck with this, whether it’s the immunotherapy coming through for you, the TILs, both, or even an abscopal effect!

Re: Beginning TIL Therapy at NIH Next Week

Posted: Fri Sep 30, 2022 5:58 pm
by MadMed
Stay strong ccr, you’re due some good news. I’m praying for you.

Re: Beginning TIL Therapy at NIH Next Week

Posted: Tue Oct 11, 2022 9:26 pm
by MadMed
Excellent news, get those little soldiers in there and fight on!
Good news ccr!

Re: Beginning TIL Therapy at NIH Next Week

Posted: Wed Oct 12, 2022 9:29 am
by claudine
Great news :D
Now you have several very promising options!

Re: Beginning TIL Therapy at NIH Next Week

Posted: Wed Oct 12, 2022 7:13 pm
by roadrunner
This does sound quite promising. Not just clearing a big hurdle, but also sounds like you are doing at least decently as to reactivity. I hope this good fortune continues for you!

Re: Beginning TIL Therapy at NIH Next Week

Posted: Wed Oct 19, 2022 9:24 am
by beach sunrise
How are you feeling on this protocol?

Re: Beginning TIL Therapy at NIH Next Week

Posted: Wed Oct 19, 2022 11:22 am
by MadMed
It seems that immonotherapy for MSS (Including KRAS) is at the cutting edge of research right now, so i think it's reasonable that we don't have much data. Although there's signs that it's not for naught:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8353537/

I hope you get great results, you still have options too which is good.

Re: Beginning TIL Therapy at NIH Next Week

Posted: Wed Oct 19, 2022 12:00 pm
by MadMed
I think (and I believe you were the first one I saw mention this) the SBRT causes and abscopal effect, is an immune reaction. I'm not a Dr, but this would seem like CTLA-4 and PD-1 inhibitors + immune reaction is goodness. No?

Re: Beginning TIL Therapy at NIH Next Week

Posted: Wed Oct 19, 2022 9:23 pm
by beach sunrise
A little itchy isn't a bad side effect. How are your blood panel counts? liver, ect?
Appt with lung surgeon is 10/31
Onc appt on Monday. I will go over things with him and dig out of him some important questions I should ask surgeon.

Re: Beginning TIL Therapy at NIH Next Week

Posted: Tue Nov 08, 2022 1:52 pm
by claudine
I'm so sorry to read this! But you are not out of options yet, "it's not over until it's over"... My husband had laparoscopic adrenalectomy which was very successful, that's maybe something to look into as a TIL complement (i.e., TIL systemic, complemented with local ablations).
Try not to lose hope XXXXX

Re: Beginning TIL Therapy at NIH Next Week

Posted: Thu Nov 10, 2022 7:36 pm
by claudine
We’re all rooting for you, pfccr. I hope you are able to get some enjoyment out of the upcoming Thanksgiving holiday, even though I am sure it will not be easy...