January 19, 2024

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UPDATE FROM TY:  Post surgery recovery proceeding within acceptable parameters.  Feeling stronger every day.   

For immediate next steps, having seen multiple doctors at MSK this week, here is where we are: 

We will hopefully know whether I have been randomized into the MSK clinical trial next week with treatment to begin on Jan 30th. 50/50 chance obviously.  We have both read and heard very positive things about the trial vaccine (designed for my particular tumor similar to the methods implemented so successfully for the Covid-19 vaccines) so getting randomized in would be a very good thing. 

If not randomized in, standard of care chemotherapy (FOLFIRINOX) for 6 months also beginning around Jan 30th.  There has been some "very good results" with this particular drug combination especially for folks like me  whose body's cancer antigens seems to work pretty well (as shown by my AC 19-9 tests).

If randomized into the trial, 6 weeks of vaccine treatment would precede the same chemo treatment above.   

Finally, radiation is also a possibility following chemo with uncertain benefits but no real downside if done properly.  It is not a possibility in the vaccine scenario for various technical reasons but the value of the vaccine far outweighs the potential value of adding radiation since I am having chemo anyway.  In short, likely to add radiation following chemo if I am not randomized into the trial but not if I am.

We have high confidence in the folks at MSK who are now working as an organized team on our behalf.  If I get into the trial,  we  will proceed there, spending as much time in Fla in between treatments as possible.  If I do not get into the trial, I will likely have chemo in Fla likely at the Univ of Miami Sylvester Cancer Center, a top notch cancer center recommended by our MSK Surgeon.  We have an appointment next week with their top chemo doctor who was recommended to us by a couple of folks (including our MSK surgeon).

That's it for now.  Sorry for the long update.  It has been a while but I didn't want to provide an update until at least a certain forward decision path was created, which there is now.

Will advise on the trial once I know.  Keep your figures crossed.

With Love

Ty