Looks like TIL therapy for someone who has been heavily pre treated doesn’t look like the way to go. Response rates drop significantly. Taf Mek it is for now until I can figure out the best route. Relatlimab and Nivo looks promising. My head is spinning in 1,000 directions will try and update as we make decisions. So many clinical trials I’m looking at. I would love to reference the NTC numbers when I get a chance!
Love you all xoxo
Hi Kelly, I can imagine that after so many lines of treatment , some options become less attractive . About the relatlimab/nivo option, that is the trial my husband was on and reacted wonderfully well to. And that would make sense because it is a new route, Lag-3 with PD-1 inhibitors. So I amhopeful Ryan will respond to Taf Mek again, and that while that is going on , you have the new combo in your back pocket. Always look at the bright side!
Love to you both ❤️
Thanks for adding in your real world experience to share with Kelly and Ryan.How long has it been since your husband completed that trial?
peace,
missy
He was on the trial the first months of 2019 and stayed NED until feb 2021. He was eventually taken off of the trial because of a blood disease he developed, cold agglutinin disease. All his AE’s have been blood related and July 2020 we found out he also has stage 3 marginal node lymphoma. So it kind of made sense then. We feel that if he had been able to receive a couple more infusions, he may not have recurred or at least would have been NED for longer. But that is just a gut feeling. He is on nivo mono now, was on Ipi/Nivo before that. I need to write an update because it has been an interesting ride 😜Back to the trial, we do not know if he was in the relatlimab arm, it was double blinded and there has never been a reason to unblind. But our oncologist is extremely exited about the trial results and looking forward to approval.
Kelly,There is a lot on ya'll's shoulders. Do you and Ryan have a position on any prefernces or barriers philosophically to trying all available treatment options? That can be a difficult conversation, expecially for folks as young as you both are, and it's ok to say no matter what the odds, I choose to exercise my right to try.
It was one of the palliative care questions that Wayne and I wrestled with.
Missy
Endoscopy results and more tests to come
My daughter has passed