It’s not over unTIL it’s over!

The story of Chris

My story
I am a big believer that everyone is a survivor whether you were recently diagnosed or have been fighting it a long time, but no matter where you are in your journey, you’re a survivor.

I’m 41 years old and live in North Texas in the United States. Almost 5 1/2 years ago in the summer of July 2018 I was diagnosed with Anorectal Mucosal Melanoma.
I knew very little about cancer let alone any specific type of cancer, or that you could get melanoma where the sun don’t shine.
I had a lump that grow in my rectum and ignored it and shortly after I had a another lump grow in my groin. I went to get it checked out and had a biopsy on the groin because they thought it was a hernia and that’s when I got the pathology that it’s cancer. I was immediately referred to a specialist and had my original mass of my rectum removed as well.
The specialist had me do a groin lymph node dissection surgery where they were able to get out all the cancer that was still detected in my body. I followed that up by targeted radiation to my primary on my rectum and didn’t did a pet scan for restaging. That pet scan showed that I had metastasized from stage 3 to stage 4 and it was in my internal organs and lymph nodes.
The plan then was to go straight into combination immunotherapy, and after two rounds we saw that the cancer was still advancing very rapidly so we had to slow it down so I ended up doing single dose, immunotherapy along with radiation and chemotherapy.
After we were able to slow it down and stabilize it, I went back to the combination immunotherapy for 4 more doses, which made it total of 6, but it gave me full-blown colitis. I fought the colitis for over three months on high-dose steroids until I was able to come off of it. At that point options were running thin so I did some more chemo until I was offered to get into a clinical trial for TIL therapy.
This is a one time therapy where they extract a tumor and send it to a lab to grow it into the billions and then they give it back to you. Before they give it back to you, you do one week of chemotherapy to bring your immune system and white cell count down to zero as a blank slate. Then they give you back your TIL from an IV, and then follow it up with up to 6 doses of IL-2 a.k.a. interleukin, an old-school hard-core chemotherapy, which acts essentially like an activator that jumpstarts it and get the TIL moving throughout the body. The way I describe it is the TIL are like Pac-Man and there’s so many of them in your body that they Rome around and eat up all the dots and cherries until they’re gone and then they just stay there Forever. If the cancer tries to come back the TIL eats it before it has a chance to grow.

I went and signed my consent, and then had my tumor extraction surgery, and while I was waiting for that, I was clinically declined greatly. I was due to enter the hospital for a few weeks for this treatment but my baseline scans had showed a brain metastasis and a kicked me out of the trial. At that point they said I should look into calling hospice and settling my affairs because the odds were not good but I still wanted to pursue whatever I could. They said the only chance to get back in the trial was to stabilize the brain metastasis and so I had to get radiation done, and then scan and prove that it was stable or in reduction, but the problem was the trial was closing, and I had a very minimal timeline to scan and prove that the radiation worked.

A long story short, I was able to get 5 radiation sessions in 4 days to my occipital lobe and then I scanned on Christmas Eve in 2019. I spent the holidays worried and filling out my end of life Last Will and then immediately after the first of the year I went to the doctors to find out if it worked and it did and so they let me back in the trial.

I was admitted to the hospital on January 8, 2020 and did my one week of chemo depletion and then given back my TIL on January 15, 2020 followed by all 6 doses of IL-2 and then released five days later on January 20, 2020. That was the last piece of treatment I ever did and within less than a year I had a complete metabolic response.

I continue to scan every 3 months as part of the trial and I’m still clear. About a year ago, towards the 2nd half of 2022, I started doing more advocacy and sharing my story. I started a webpage and an LLC and I’m active as an inspirational speaker in networking with different charities and pharmaceutical companies as I travel and tell my story as a career. I provide inspiration and hope to patients and caregivers, and also to the medical community that is making these types of treatments.

All of my social media profiles are public, and I have a Linktree link on my profiles that link all the social media accounts, different feature publications about my story, podcast and webinars, etc.

Mucosal Melanoma Survivor 2023 year in review