The Colon Club

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. They have now moved me out to 6 months before I need to go back.

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

Celine

Yay sleen great news

DAS43 wrote: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. They have now moved me out to 6 months before I need to go back.

Most excellent news DAS !

Wow! So happy for you, DAS!!!

Celine

I can't believe it but it's TRUE. It's been 2 years since I received my cells!. My follow up was today and praise the lord everything remains the same. I will follow up in 6 months.

Lovely news .
Stu

You guys are pioneers in this treatment which I hope gets developed for far more mutations.

Best news ever! Keep it up.
Teri

DAS43 wrote:I can't believe it but it's TRUE. It's been 2 years since I received my cells!. My follow up was today and praise the lord everything remains the same. I will follow up in 6 months.

So Happy for you DAS
Thank you for updating us.
Big Congratulations !!!

I was at NHI Wednesday and Thursday. Unfortunately I don't have great news it's not bad news but it's not great either it seems that the tumor that they are following has changed it still has the same dimensions .9 cm by .4 cm but instead of being a light gray smudge on the CT scan it is now starting to turn white again although it hasn't really changed its dimensions. Also my cea which has been steady at 0.8 is now a 1. At this point the team seems to think that we should just watch it for the next few months. I will go back in 4months and have a CT scan.they may possibly take it out if it does any more changing. It's been kind of hard for me to digest. I've gone two and a half years with no chemo feeling great and now here I am again facing having more surgeries and more cancer treatments but I'm going to have faith the Lord will protect me and heal me .

Hi all -

And congratulations to those of you who have been pioneering this therapy. It seems quite promising. So promising,in fact, that I wonder why more of us aren't on it.

I see a new phase of the trial began last year. Do you know if they are still accepting patients? Also, my research suggests that BRAF mutations are not excluded.

Have read all your prior posts. Any new stories about experience with this, including not to it?

Thanks,

DAS43,

Was thinking the other day that no one has updated this thread in quite awhile, then "poof" here you are. That is a bit "unsettling" news for you, disappointing to be sure, but the details you provided are certainly curious.
Thanks for the update & hope you come back after your next CT w/another update.
Hang in there.

Best Wishes,

BS

Hello DAS,

Sorry to read about that tumor--hopefully you will have surgery and then NO WORRIES.
You might remember that I also had a non-responding tumor. It was concerning to watch it get bigger every time they scanned, but they did ultimately remove it, and I think that's what they'll do for you, too.

Wishing you ALL THE LUCK!

Celine

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 sometimes expected from Older Grandma tumors). No new metasis and no new growth. The Brain tumor has shrunk 95% = almost GONE ! and one liver lesion is Gone and the other liver lesion previously 1.0 cm shows a 90% reduction. So…. the TILs are being systemic meaning they are not confined to only one organ.

This is really interesting, and fantastic news about your wife! I've always brushed off immunotherapy since DH is MSS. But so is your wife, so this is promising