December 12, 2019
Melanoma survivor: An immunotherapy clinical trial was my best option
BY Michael Potthoff
I was diagnosed with stage IV acral lentiginous melanoma in August 2014. The year before, I had bumped my thumb against the side of a pool. When the injury didn’t heal with antibiotics, my doctor scheduled a tissue biopsy.
After I found out I had melanoma, my biggest worry was what life would be like for my wife and four sons if I were not around. The thought of my wife raising our 15-year-old son and 13-year-old triplets alone worried me more than death itself.
Choosing MD Anderson for melanoma treatment
My friends and neighbors told me to seek treatment at MD Anderson. I knew it was the No. 1 cancer center in the nation and had leading experts in melanoma. I wanted the best chance to survive, so I traveled to Houston from St. Louis.
Once I got to MD Anderson and met Patrick Hwu, M.D., in November 2014, I quickly knew I was in the right place.
Dr. Hwu worked with my local doctor so I could stay close to home and my family while I began a combination immunotherapy using ipilimumab and nivolumab.
If that didn’t work, Dr. Hwu would have me try a different type of immunotherapy. And if that didn’t work, I could enroll in a T-cell therapy clinical trial that he recommended. I appreciated his expertise.
The path to the right melanoma treatment
When the tumors continued to grow in my lungs after the initial immunotherapy, Dr. Ara Vaporciyan surgically removed them in January 2016. During the surgery, I had my T cells harvested in case I enrolled in that clinical trial.
Eleven months and another recurrence later, I had a larger portion of my right lung removed in a second surgery. In 2017, I had an additional surgery to remove tumors in my stomach, intestines and trapezius after my doctors found more nodules in my abdomen.
After that surgery, I received two cycles of the immunotherapy drug pembrolizumab. But the melanoma became more aggressive, and surgery was no longer an option. Dr. Hwu recommended I enroll in the T-cell therapy clinical trial.
I thought that this clinical trial might be risky since I’d be one of the first patients on it. But Dr. Hwu’s confidence reassured me.
Moving forward with an immunotherapy clinical trial
I am very thankful that Dr. Hwu had thought ahead and had my T cells harvested the year before.
On Oct. 10, 2017, I started the clinical trial. I received 35 billion T cells and more than 5 billion NGRF-positive and TGFBDNRII-positive cells. Basically, Dr. Hwu’s team inserted a gene into my T cells before the transfusion so they could better fight the tumors. After my T cell injections, I went through 17 rounds of interleukin (IL-2), which supercharged the T cells and helped them attack the cancer.
Immunotherapy clinical trial made my tumors undetectable
The clinical trial was the most grueling experience in my life. I lost more than 40 pounds and all of my hair.
However, I got through it with my wife by my side in the hospital and the support of family, friends and my MD Anderson care team.
The T cells gave me a new immune system to fight the melanoma. I now return to MD Anderson for brain MRIs, as well as PET and CT scans, every four months. Since November 2017, most of my tumors have been undetectable.
Though I’d been hesitant to enroll initially, I know now that the clinical trial was my best option. I’m satisfied knowing that my experience will help doctors treat other melanoma patients in the future.
My family is the most important
It’s been two years since I enrolled in the T-cell therapy clinical trial, and my treatment has been successful.
The clinical trial -- along with faith, diet, exercise and daily gratitude -- has been my recipe for survival. It’s the reason I’m here to see my four boys grow up.
I’ve made deeper commitments to attend their games and performances. I make sure I don’t work too late so I can enjoy more time with my wife.
I prayed to stay alive and get my oldest son through high school. When we got there, I prayed to see my triplets graduate.
This past August, my wife and I dropped all four boys off to college. And I have MD Anderson, Dr. Hwu, Dr. Vaporciyan and a clinical trial to thank for that.
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TopicsMelanoma Clinical Trials Immunotherapy
I know now that the clinical trial was my best option.