Stability until I wasn’t, F

The past few months have been simply amazing. I am running the fastest, rowing the hardest and lifting the heaviest I have in years. My mind and body are aligned and was really enjoying life, the fall and football season with my family. My August scans showed stability and my TIL continued to be circulating at very high potency. This is best case news and my family and I celebrated.

Once again Paul and I supported the Denver MRF gala with so many family members and friends and shared an update to our story at the gala. The message was full of hope and our future and had a wonderful evening.

My two TIL inspirations were in attendance, Katie Doble (OM) and Chris White (Mucosal) and are thriving since their TIL treatments. I feel so fortunate to have these two as cancer inspirations and friends.

Paul and I also had the honor and privilege to introduce Stacey Sepp with the first MRF advocacy award. I am forever grateful to Stacey for her work on Capitol Hill advocating and securing research funds for Melanoma.

The end of October, I surprised my daughter and we flew off to NYC to attend the MRF gala as my TIL doctor, Dr Kammula was being recognized with the Humanitarian Award and I just had to be there to celebrate him. OM Katie (my OM inspiration) and my family made a video introducing him and my daughter, mom, grandma and I had a blast in attendance. 4 generations – such a special night. Also being honored was Chris White (Mucosal TIL thriver and friend/inspiration) and we even got to meet Teddi Mellencamp (Courage Awardee) and Andy Cohen (MC).

Dr Kammula’s speech – a true humanitarian hero! The three lessons he shares in his video make him the hero he is.

On 10/30/23 I had my 3 month scans. Expecting stability but didn’t get the stability news I exactly wanted. Although still stable (ish) one of my tumors grew a little and a lymph node had grown enough to question what was going on. Not knowing if there was active cancer, TIL in the lesions and lymph nodes or what – Paul and I flew back to Pittsburgh for some biopsies. Although hoping to not return to Pittsburgh in 2023 or for a long while – we made the most of it as we always do. Walked our favorite street (Walnut Street) near the Shadeyside Hospital and ate at some of our favorites places, even ventured out a tried a few new ones. It’s nice in moments of fear of the unknown to have a good latte, slice of pizza or belly up to the bar and some local places to have found peace and comfort in.

The biopsy process was surprisingly a piece of cake and headed home for Thanksgiving.

Shortly after, I learned there was active melanoma in not only my liver lesion (which I expected) but also in the lymph node (which was devastating). Luckily Dr K quickly did his own research which he always does and called me with a possible plan and options.

If there are options there is hope and so far I still have options – many of them BUT it was hard to hear and process as I was finally in such a good spot, feeling so good and able to focus on so much more than me – it felt amazing.

The option we agreed on is 6 more rounds of IL-2. Thinking of this plan gives me extreme anxiety and truly PTSD but I said if it gives me hope – I’ll do it. What I also learned with the biopsies is my really potent Tcells have gone to sleep. This was not expected several months out and we have no idea what or why but they need to be woken up. The plan is for the IL-2 to again serve as an activation to the tcells – wake them up and go back to fighting.

More emotions and hard to process.

My UPMC team was putting the plan together and had to amend the trial because guess what….I am going to be the first to go down this path. Lovely, right? Dr K and the team are super excited and hopeful as my potency was so high and hopefully another jump start will get them moving again. The research behind all of this is truly baffling.

Here’s to waking up sleepy Tcells really soon.

FUOM