New options keep the HOPE alive.

It’s been quite a while since I blogged but feeling the need to express some thoughts – all the feels….sadness, frustration, gratitude, happiness, hopefulness and love.

Last week I had scans. Right now I am on an every 8 ish week cadence.

There are 4 main markers we are tracking – 2 in my liver and 2 outside.

The outside my liver brought tons of sadness previously because welp – this cancer is no longer contained to my liver and means I have to operate with the mindset of full systematic therapy.

The good news is – (1) for several months there has been nothing new found and what I have is stable (with question marks and unsolved craziness), (2) My TIL infusion from February 2023 is still circulating throughout my body and (3) my best TIL is in my tumors and (4) I feel great. I am fully living, working, exercising and laughing!

BUT

(1) The question marks and unsolved craziness is my liver lesions mainly – they have been growing this fluffiness around them. My doc believes it’s inflammation and not sure if good or bad. But we assume not good since my tumors are not shrinking.

(2) Why are the Tcells not shrinking my tumors? The Tcells are strong and exactly where they need to be but being blocked still and not working as designed.

I’ve know this for a while so the first thought was wake them up and do another round of IL-2. Six dosages. I was the first patient in my trial to try this option and completed it in Jan 2024. I shared that journey in my January 2024 post.

Although we were really hopeful during my February 2024 scans it had worked and I broke the mystery – we’ve now learned that it didn’t hurt me but it didn’t help as we hoped.

So what now….each stable scan buys me time. Each scan buys me more time for more research and more options.

So luckily my doc and team is so amazing, so research driven, so willing and passionate to solve my mystery so they went back to the drawing board. What we know is ‘something’ is still is blocking my tcells from working properly.

Luckily a new study / research article was just published (a few weeks ago) about prostaglandins inhibiting the function of TIL in tumors. After my doctor and team reviewed all the aspects of my case again my tumors have higher prostaglandins compared to other OM patients who have seen success on TIL. So maybe – this is the missing link, maybe this is the key to my puzzle. There is a common drug called Celebrex. Celebrex is known to decrease inflammation and that may decrease these prostaglandins.

Here is a link to the new article

https://www.nature.com/articles/s41586-024-07352-w#citeas (https://www.nature.com/articles/s41586-024-07352-w#citeas)

So what we pray for now – Celebrex will decrease the inflammation around and inside my tumors and the tcells will be able to fight and kill my cancer.

For a baseball metaphor – I am rounding third base about to slide into the home plate but I just keep getting stopped – I am in all out pickle running back and forth between 3rd base and home. We pray this is what helps me slide into HOME safely.

Assuming I can tolerate the drug, I will be on this in some capacity until my next scans in 8 weeks and we will see what’s going on then.

Thank you for those that continue to support my family on this journey.

Always an adventure!

Love and HOPE always

PS – May is Melanoma awareness month SO get your skin checked (including your mucus membranes) and get your eyes checked.