Cancer clinical trials save lives, drive innovation, and improve the quality of care for future generations. But for patients and caregivers going through cancer, they can also be yet another frightening unknown. In recognition of Clinical Trials Day, we’re sharing stories of hope from our volunteers who have been through it.
Meet Mohamed C. Shahenkari, a CHN volunteer mentor based in New Jersey. Since joining our community in September 2021, he has matched with and provided support to nine mentees.
*The opinions expressed in this blog are those of the author and do not necessarily reflect the views of Cancer Hope Network.*
I was awoken from sleep one morning in 2019 by a phone call I had been waiting for. My doctor called to give me the results of my PET scan. I barely remember the call but I do remember the main point: my cancer had spread from my head and neck to both of my lungs. I hung up and couldn’t go back to sleep. I was too shaken up as my mind raced with different scenarios about my future. I had been all but assured that my cancer was gone, only to find that this was not the case. In fact, I was in a very dangerous situation that was equal to or worse than my initial diagnosis.
Initial Treatment
I was diagnosed with squamous cell Head and Neck carcinoma a year earlier in 2018. There was a large tumor under the left side of my tongue. I underwent a nine-hour surgery to replace half of my tongue with a muscle flap from my left wrist. My course of treatment would not be an easy one. I had a feeding tube inserted. After two rounds of chemo and seven weeks of radiation, I was left to recuperate, believing I had put that part of my life behind. Everyone was quite happy with my progress, and I had my stomach tube removed since I could eat on my own again. I thought I had cancer beat.
Once I received that call, I did not know where to go, as my treatment was to be curative. Though my cancer center and oncologist had provided the best treatment they could, they did not have access to many clinical trials. My physicians recommended I go to Memorial Sloan Kettering (MSK) in New York City for a clinical trial. It was a difficult time for me as I moved my care to a new facility and there were no guarantees on what would happen with my treatment. I didn’t have a set plan; I just had the hope MSK would have something to offer me.
Putting Faith in the Clinical Trial
My first consultation with the MSK oncologist was a blur. I’m so glad I brought people with me for support and to also remember what was said. The doctor was straightforward and bluntly told me that the treatment regimen the smaller cancer center was going to offer me “will not cure your cancer.” His recommendation was to try a clinical trial that was aimed at my type of cancer and targeted cancer expressing the specific protein that my cancer expressed. I signed up for the clinical trial during the same consultation and started receiving the intravenous treatments the following visit.
I was placed on an immunotherapy clinical trial combination that included an FDA-approved drug and an unnamed clinical trial drug that boosted the efficacy of the first drug. My clinical trial was odd because of the way the drug worked; my cancer appeared to get worse before it got better. In something called “pseudoprogression,” it appears the tumors were getting larger. There were several CT scans that made us fearful that the trial wasn’t working, and we were wasting precious time. My doctor assured us this was the normal progression of my kind of cancer responding to this drug and to give it time. I put my trust in him and kept going.
After several weeks of treatment, the tumors started to disappear. During the treatment process, there was one tumor on the top lobe of my left lung that did not respond to treatment, and I had to have it removed. A clinical trial doesn’t mean it’s the last chance, in my case, it was the fighting chance. My treatment didn’t follow a perfectly straight line, but it did move forward, and the drug continued to work.
After over two years on immunotherapy, the clinical trial closed. This was another stressful time because I had been on a treatment that was working, why did I need to stop it? What would happen once I was no longer receiving the combined treatment? Would the cancer return? I again put my faith in my doctors but also advocated for myself at the same time. After discussions with my doctors, I decided to stay on the FDA-approved portion of the treatment for several more months.
After a year on that drug, my CT scans came back clear with only scar tissue remaining. These clean scans continue until present day with vigilance from my doctors.
Takeaways From My Journey
I would strongly urge cancer patients to advocate for themselves in all situations. You are your own best advocate and you have the final say in your treatments. I would also urge them to seek out a second opinion if their case changes, gets more complicated, or they do not feel comfortable with their providers.
It was quite beneficial for me to keep a positive attitude during the entire journey. My wife, family, and friends all helped me a great deal by keeping my spirits up and helping me during the down times.
I also found it healthy to not shy away from the darker, more negative thoughts and emotions. It’s quite normal for cancer patients to think about a lot of “what if” scenarios, feel sad or frightened, or even contemplate their own mortality. I found suppressing emotion to be one of the worst things I’ve ever done because it always finds a way to come out eventually. It is much better to experience whatever you are feeling and then move on from it.
Lastly, although cancer can be one of the most challenging things you’ll ever face in your life, it doesn’t have to be the last, and it may even turn into a time of reflection, strength, and learning. I rediscovered personal spirituality through this journey while also embracing philosophy. I am a different person with much more gratitude, patience, kindness, and perspective now.
Are you or someone you know considering or currently participating in a clinical trial? Learn more about Cancer Hope Network’s Talking About Clinical Trials (TACT) Peer Mentors who are specially trained to share their experiences and to answer questions about the process of participating in a clinical trial.
About Cancer Hope Network
Cancer Hope Network provides free and confidential 1:1 peer support for cancer patients, survivors, and those who love them. Our trained survivor and caregiver volunteer mentors provide support from diagnosis, through treatment and into survivorship. They have faced more than 98% of the cancers that will be diagnosed in 2023, speak 15 languages, and are prepared to offer hope and guidance through a wide variety of challenges that accompany a cancer diagnosis.
All volunteer and client matches are overseen and supported from beginning to end by a team of healthcare and social work professionals. For more information about Cancer Hope Network and its mission, please visit https://cancerhopenetwork.org/
