Jun. 13, 2019
TOPIC: Patient Stories
Posted by Lisa Sencen
The following story was submitted by Jenny Malec in honor of June’s Rare Spotlight, Appendix Cancer and Pseudomyxoma Peritonei (ACPMP). In this story, Jenny reflects on her life-changing experience after undergoing a clinical trial for ACPMP. A special thanks to NORD’s Member Organization, the ACPMP Foundation for sharing this story!
In 2014, I was diagnosed with Appendix Cancer and Pseudomyxoma Peritonei (ACPMP), a disease characterized by appendiceal tumors that spread and cause a buildup of mucin in the abdominal cavity. I underwent numerous surgeries, medical procedures, immunotherapies and chemotherapy, only to be told in 2017 that I was no longer a candidate for HIPEC surgery. Since that is currently the main standard of care for ACPMP, being told I could no longer be operated on was a huge blow. It was then that I decided to get involved with clinical trials.
In early 2019 I learned about a new trial in Australia that was the first and only one in the entire world designed specifically for my type of cancer. It was the brainchild of Professor David Morris, a surgical academic treating my type of cancer for over 30 years. “Prof,” as he is commonly known, came up with a novel compound designed to dissolve the mucin produced by my specific type of tumor. While not designed to be curative, this treatment—if proven safe and effective—could provide patients with an extension of life, and allow some patients considered inoperable to become candidates for surgery. Prof and his research assistant, Sarah Valle, have been working tirelessly to get this Phase I investigational trial up and running, and so far, they have treated around 25 patients. I am quite proud to say that I was Patient 20!
Prof was the recipient of a research grant in 2016, funded by the ACPMP Research Foundation. NORD has been facilitating research grants on behalf of ACPMP since 2009, and together they have issued $1,200,000 in the form of 25 research grants to study appendix cancer and PMP through this program. Prof has said that without the grant from ACPMP and NORD in 2016, this trial would not have been possible.
In April 2019, I traveled from my home in Ohio to Sydney, Australia to participate in Prof’s trial. I stayed there for 3 weeks while Prof and Sarah worked tirelessly to help me. I also have an incredibly complicated situation due to my tumor placements, and they needed to think of outside-the-box solutions to treat me.
Now, because of them and their trial, I am elated to say that as of my most recent CT Scan, my biggest tumor has been reduced by about 50%! That is an incredible outcome for me – especially when my future was starting to look bleak. Before I left Australia, I tried not to cry as I thanked them for working so hard to help our little group of patients. For being not just excellent medical professionals, but for being excellent people – they truly cared for me and do care for all their patients personally. They take it to heart if they have a patient in pain or are unable to help one of us. They take it to heart by pioneering a successful, unusual approach to treating our cancer when no one else would.
I am so grateful for Prof Morris, Nurse Sarah and to the ACPMP Research Foundation. The grant that the Foundation gave to fund Prof’s vision has personally impacted me. I could never utter enough thank you’s to show my gratitude. If this trial had not come to fruition, I would be looking at rapidly declining quality of life in the near future.
I am still considered incurable. But because of them, I have been given the gift of more time with my loved ones.