Kristin’s Survivor Fund

Kristin's Story: I have advanced, stage IV synovial sarcoma. My oncologist at Duke Cancer Center is trying different treatment options with the goal of keeping me stable. Funds raised will help with treatment-related expenses and the frequent travel back and forth from Duke (2.5 hours from home). As well as helping my family with household expenses as I have not been able to work. My cancer is stage IV and considered to be incurable. I have outlived anyone else with disease similar to mine so they can’t give me an idea of life expectancy. My oncologist's goal is just to give me the best quality of life for as long as possible.

Hello, with the outpouring of support I’d like to update my story for y’all and share some of it for my new friends

My cancer journey started when I was a teen. I’ll try to sum it up fairly shortly…

I had severe abdominal pain that went mis/undiagnosed for years until a fender bender and an X-ray from a chiropractor revealed a small mass. It still took months to convince a surgeon to remove it, as everyone thought it was benign. I had surgery in October 2013. After the mass was removed, it was sent off to pathology which revealed it was Synovial Sarcoma. I was sent to Moffitt Cancer Center and began surveillance.

In January 2017 I had a reoccurrence. It was again surgically removed with clean margins and we continued watching it. I was blessed to be disease and pain free long enough to go to nursing school and have my daughter Brielle.

In summer 2020 our family moved to North Carolina when my husband was stationed at Camp Lejeune. Unfortunately the pain returned again and I went to Duke Cancer Center where it was found that the cancer had metastasized. The last 3 years have been filled with chemo, surgeries, radiation and in spring of 2022 I did a Car T-cell clinical trial. The trial was intense but I made it through and the two largest masses shrunk while the numerous little masses went away! I was again pain free and able to get back to doing the things I loved (buying my horse Awsome Faith!!) and spending time with my family. My oldest daughter, Hailee, returned to the dance stage and Brielle rode in her first horse show!

Then in November 2022, the cancer started growing again. A new, large mass started hemorrhaging and sent me to the ER. This was disappointing as it likely means my cancer already worked around the modified T-cell trial. Once stable, the decision was made to start radiation. I completed radiation and was able to enjoy the holidays at home, while the effects of radiation shrunk the mass.

I spent the rest of the winter hospitalized twice with pneumonia, but was as active as I could be in between. The second hospitalization also revealed that the mass was growing again. I followed up with my oncologist and we planned to start a medication called Votrient. The medication takes about a week to be delivered, and the day it was scheduled to arrive I developed severe abdominal pain again. I went to the ER and the mass was again hemorrhaging. By the time I was transferred to Duke, I had lost a lot of blood. I received two blood transfusions and was stabilized again. We started high dose ifosamide at the hospital in hopes of shrinking the mass, but I developed neurotoxicity and it had to be stopped. I had to stay in the hospital a few more days while the effects reversed. I came home, still slightly confused, and dealt with the effects of chemo. Including losing my hair again.

April 2023: Now my blood counts are back to baseline and I am going to start the Votrient now with the goal of keeping the mass from getting any larger. I will have to be monitored very closely while on this treatment. So while I take it at home, there will still be lots of trips to Duke coming up. And the medication can have a lot of undesirable side effects, so we’ll have to wait and see how I feel on it.