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Re: Beginning TIL Therapy at NIH Next Week

Posted: Fri Oct 13, 2023 6:48 pm
by IDF108
Rooting and praying for you!

Re: Beginning TIL Therapy at NIH Next Week

Posted: Fri Oct 13, 2023 7:27 pm
by roadrunner
Good luck, brother!

Re: Beginning TIL Therapy at NIH Next Week

Posted: Sat Oct 14, 2023 10:35 am
by utahgal7
Wishing you the best of luck, Chrissy!

Re: Beginning TIL Therapy at NIH Next Week

Posted: Mon Oct 16, 2023 7:58 am
by Bpaint
Thinking of you!

Re: Beginning TIL Therapy at NIH Next Week

Posted: Mon Oct 16, 2023 10:27 am
by claudine
Hope all goes well, keep us posted, you've been a real fighter!

Re: Beginning TIL Therapy at NIH Next Week

Posted: Mon Oct 16, 2023 2:41 pm
by Thedruid
Hello, PrayingforCCR

Having 4 lesions (that will become 2 soon) compared to the ammount of leasions you had before is an outstanding improvement and puts you back on the fighting arena. News surely could be better, but could be way worse too!
One step at a time. Hopefully you will having nothing new to fight and then there will be only the 2 left to worry about!
My best wishes for you !!!
TheDruid

Re: Beginning TIL Therapy at NIH Next Week

Posted: Wed Oct 18, 2023 9:58 am
by claudine
This is great news!!! Cancer battle is almost never a "one time done deal", it's more of a "guerre d'usure" where you have to keep hammering at it until it finally disappears. You seem to be on a good path!

Re: Beginning TIL Therapy at NIH Next Week

Posted: Wed Oct 18, 2023 11:56 am
by utahgal7
Glad that you aren't in a lot of pain. Did you get PCA (patient controlled anesthesia)? If so, wonderful! Hope the chest tube isn't causing you too much distress. When I had VATS, I asked for a little something something before they pulled the chest tube.

You are a tough guy. I am sure that you are going to recover in no time. You got this, Chrissy!

Take care!

Re: Beginning TIL Therapy at NIH Next Week

Posted: Wed Oct 18, 2023 2:43 pm
by utahgal7
How long do you have to stay in the hospital this time? Hospital stays are no bueno. In no way am I trying to diminish what you are going through, because I can't even imagine how difficult it is. Plus, I don't want to be a shitty friend like that.

However, I have a male friend with colon cancer and he has literally been in the hospital at least 9 months out of the last year. He has experienced one setback after another. Unfortunately, he is ineligible for any trials because of multiple mets in various organs and he has accumulated over 1 million in medical bills.

I know your situation sucks but it could be much much worse, my friend.

Re: Beginning TIL Therapy at NIH Next Week

Posted: Thu Oct 19, 2023 5:42 am
by beach sunrise
Well, its out of there, YAY! Now let the answers be revealed for next step.
It's just amazing you found this therapy and was accepted! This could open the door for so many more of us.
Of course the long days in isolation during treatment would suck but who cares really.

Re: Beginning TIL Therapy at NIH Next Week

Posted: Fri Oct 20, 2023 11:15 am
by roadrunner
Does this change their approach at all? Is there a surgical
option for the 2.2cm nodule?

Re: Beginning TIL Therapy at NIH Next Week

Posted: Fri Oct 20, 2023 12:53 pm
by Thedruid
roadrunner wrote:Does this change their approach at all? Is there a surgical
option for the 2.2cm nodule?


Hello, PrayingforCCR,

If we are talking only about this nodule, there are options for it. Options range from surgical ones (but you are just leaving a VATS session) to simpler ones, like ablation. Of course, the usage any procedure needs to be carefully evaluated due to the location of the met, the possible presence of large blood vessels, etc...

Take a look at the link below:

https://www.annalsofoncology.org/article/S0923-7534(19)31500-5/fulltext#:~:text=Conclusion-,Radiofrequency%20is%20an%20option%20for%20treatment%20of%20small%20size%20lung,ones%20below%202%E2%80%933%20cm

Regarding radio ablation... I believe 2.2cm is on the limit of the acceptance size for radio ablation, but if needed theoretically you can just use larger caliber ammo, which, in this case is microwave ablation.

I am personally not a huge fan of SBRT, since it could make futures surgeries on the site more difficult due to tissue damage. On top of the "hot" ablations above there is also crio ablation, etc...

So, if the question was only about the 2.2cm nodule I believe the answer would be "there surely are treatments". The tricky part is not about the "surgical option", but the "approach" you mentioned above.

For any kind of surgery, surgeons are always looking for the big picture before giving green light to execute any procedure. Their main concern is to use a procedure to remove the 2.2cm nodule, which will surely also damage part of the surrounding lung tissue and then have more nodules in the near future to also remove, which will damage more tissue, etc... For everything I could read between the lines on papers for lung met removal, surgeons are always trying to use their procedures as a silver bullet, so, it will damage a little, but if there are no big probability of more mets on the long run, then it is ok.

I believe you need to discuss with a good surgeon that is aware of the treatment you are doing and the real possibility to have no more mets in the future, since your treatment could kill all the new small ones.

Re: Beginning TIL Therapy at NIH Next Week

Posted: Fri Oct 20, 2023 1:10 pm
by Thedruid
roadrunner wrote:Does this change their approach at all? Is there a surgical
option for the 2.2cm nodule?


PrayingforCCR, I have one question for you I forgot to ask on my previous post: Regarding this 2.2cm "mass" found on your last exam.... was it the first time people saw it or was it present before and now they are just reporting its new size ?

Re: Beginning TIL Therapy at NIH Next Week

Posted: Fri Oct 20, 2023 2:21 pm
by utahgal7
Sorry I am having a "blonde" moment, lol. I just want to make sure I understand you correctly, Chris. So you have 6 remaining lesions, am I correct? In line with Thedruid's previous posts, could these remaining 6 lesions be ablated? If so, could you possibly have lesions ablated first and then do the TIL therapy to kill any lingering micro metastases?

Re: Beginning TIL Therapy at NIH Next Week

Posted: Mon Oct 23, 2023 10:17 am
by roadrunner
This situation seems pretty complex, and given your prior success with the TIL approach, that certainly seems to be your best option, at least from a distance. It sounds like you have 3 growing lesions (including the 2.2cm nodule), and 4 that are “stable or shrinking.” If that’s right, there may well be a point down the road where you may have a legit surgical option (though of course if the TILs clean it all out that’s best). I’d keep an eye on that possibility, e.g., all remaining problematic lesions are in one lobe, or nearly so, because at such a point a segmentectomy or lobectomy might be a good option. As I’ve related elsewhere, my LUL lobectomy was a bit of a challenge at first, but now (slightly over three months out) I have no effects on my life except that my runs are slower, and my max post-surgery is 2.75 miles (as opposed to 3-4 pre-surgery, but I’m still improving). So it may be no big deal if you have to go that way. I think you’re pretty fit and active from your prior accounts, so the only real long-term downside there would be loss of margin for any recurrence.

But all in all, that may be an option down the road. I think you’re in a very promising place, and while I get the “5 yrs.!” thing (I’m at 4 yrs./3 months), I hope it’s some comfort that—as your trial Doc said—you’re WAY better off than you were, and you’re an outlier and an inspiration to all of us.