TIL Immunotherapy at NCI

[Lee]

sdino,

AWESOME news!!

Lee

[Sleen]

I was MSS too, Claudine!
Don't brush it off.
When "they" say immunotherapy doesn't work for MSS, they are talking about infused agents like Keytruda, and Yervoy, etc.

Celine

[Gravelyguy]

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.

That is great news. Thanks for the update!

Dave

[claudine]

I was MSS too, Claudine!
Don't brush it off.
When "they" say immunotherapy doesn't work for MSS, they are talking about infused agents like Keytruda, and Yervoy, etc.

Celine

SO GOOD to know that there are still many options out there! Thank you and I hope you stay NED forever

[Sleen]

Checking in to say Follow-Up 16 happened at the beginning of March.
Still NED! I requested annual visits going forward, and they said "OK." woot!

I hope you all are staying safe and sheltered.

Celine

[CRguy]

THAT is mega spectacular news my friend !!!!!!!

Thank you so much for staying on forum to keep us updated AND to help new members.

Harmony on the Journey
CRguy

Hunker down
Shelter in place
keep on keepin'
Covid SAFE ! - CRguy

[DAS43]

Was seen at NIH 5/27 and 5/28/20. The tumor is still growing it is almost at 1cm. The good news is that there continues to be no new matastises. The plan is for me.to go back in Sept and they will do test for surgery and I will meet with surgeon. I am not happy about waiting that long but with covid 19 they feel it would be safer waiting till lower cases. I continue to worry about this tumor creating new matastises, butt the doctors dont believe this will happen. They seem perplexed as to why it shrank 75% then started growing again. Hopefully when it is removed they will be able to get the answer.

[Cured]

Thanks for sharing this.
I asked my Onc if I can join this trial.
Not that I wanted to be old and metastatic

[Jack&KatiesMommy]

I was MSS too, Claudine!
Don't brush it off.
When "they" say immunotherapy doesn't work for MSS, they are talking about infused agents like Keytruda, and Yervoy, etc.

Celine

I am MSS with a moderate tumor burden identified in my tumor. My local oncologist had seen some new research that indicated that tumors with high tumor burden responded to Keytruda and Yervoy and got approval to ty it with me when chemo stopped working for me and the cancer was spreading in the lymph nodes near my lungs. I started Keytruda in May 2017. That was over 2 years ago. I have been NED since my third Keytruda infusion. So actually infused agents like Keytruda can work for some MSS patients too! (And I have been fortunate enough to have almost no side effects other than some fatigue.)

Cynthia

[sdino]

UPDATE 6/18/20 on my Wife: NCT01174121 TIL infusion 9/20/19. Brain resection one met 3/13/20. Two liver lesions destroyed by TILs in early 2020. Brain and Abdomen MRI's at UPMC on 5/27/20 reveal no metasis in either Brain or Liver. CT scan chest on 5/27/20 By Dr. Rosenberg’s measurements her target lung lesions were smaller by 34.91%, which qualifies her as a partial responder (PR).

[Cured]

Sdino- Good to hear that your wife responded to the treatments. Hope she continues to do better.

My Onc hated me asking about the trials(he can’t offer them) and doesn’t want to talk about TIL.
I copied Cynthia’s successful use of Keytruda and likewise: as if I have no business putting my nose into investigating options. So I am assigned to a different Onc at the same cancer center. Fortunately I am checking back with MSK for their insight on Immunotherapy; which makes my wife feel better.

Hopefully I get good news on my next scans: and discover that the second-line treatment I’ve been doing has worked. Then don’t need the third-line treatment.
Theoretically there is a Plan for each patient and the patient should know what that looks like .....and more than 1 or 2 weeks ahead.

[Sleen]

Follow-up #18 happened yesterday at NIH.
I am still NED!
My former lab guru is continuing his work with TIL, now at Providence in Portland, OR.
NIH now has a dedicated lab, in a separate facility on the NIH campus--no more contamination shut-downs!!!

Celine

[MadMed]

Wow, this is really awesome. Thank you!

[CRguy]

Hey homie GREAT news
Keep kickin' colorectal BUTT

Cheers and Harmony
CRguy

[claudine]

That’s fantastic
I’m surprised that given the good results, it’s not a more common treatment. Trial was 7 years ago now! Is it only offered in very specific, limited cases?