The Colon Club

prayingforccr wrote:

JulesW wrote:Hi Praying for CCR,
I recently learned of someone else with lots of lung mats and running out of standard of care options. She's asking about trials what was the number of the trial? NCT if you don't mind
Best, JulesW

https://www.clinicaltrials.gov/ct2/show/NCT01174121

Happy to help/answer questions anyway I can.

prayingforccr wrote:... My goal is to climb Camelback Mountain on my birthday in june next year...

prayingforccr wrote:Sent some quick questions today to nih about some issues that had been bothering me/creeping into my everyday:

1) As a responder, what is the % of my response as of my last scans?

2) Understanding the tils do not replicate/reproduce, is it possible/probable/unlikely that they will exhaust themselves/no longer be effective?

3) How many lesions were in my lungs as of last scans (including those showing treatment effect)? Are there fewer than november’s baseline?

4) is it possible/probable/unlikely that the lesions could mutate rendering the tils no longer effective?

Answers:

1) By RECIST 1.0 criteria, you are -52.2% in your target lesions. Remember this only includes a select few of your tumors (5 lung and 1 adrenal). I actually would imaging your % decrease is actually larger if we accounted for ALL of your lesions; by estimates your disease is approaching 75% down.

2) TILs CAN replicate. There are stem-like memory/progenitor TILs that have the sole job of harnessing a "memory" phenotype that can be expanded in population once the target (your cancer) is seen again. This is why TILs work so well to dissolve micro-metastatic disease that we cannot see on scans; it is still possible for all your clones to become exhausted and then no longer be effective, but TILs can indeed divide and expand beyond their initial expansion in the lab and once the patient receives them with IL-2

3) There are probably 10-20 total lesions in your body. Some have disappeared, so yes there are fewer than the November baseline scans.

4) Cancer can always mutate or change, but usually this mutation will have already happened (if it happened/happens at all) when it had settled into wherever it is now (lungs, adrenal, etc...). There are two big evasion mechanisms for cancer with immunotherapy that we have seen.....LOH (loss of heterozygosity, meaning the tumor loses the HLA gene that allows it to present the cancer mutation protein on its surface to the T-cell) or loss/change of antigen (when the original cancer mutation that was targeted by the TIL clone has either been lost/deleted or changed/mutated further). The good news for you is that your TIL infusion bag was HIGHLY heterogeneous with a large diversity of T-cell clones. This allows for a multi-pronged approach where the cancer will still be defeated even if it is able to evade one of those clones/targets.

prayingforccr wrote:...
Can't figure out how to delete dms in full mailbox so as to send more