In October 2019, after a golf trip to Monterey, I noticed some knots on the right side of my neck. Since I hadn’t played golf in a while, I figured it was a strained muscle that would get better in a few days. Over the next few weeks, the knots shrunk, so I assumed the strained muscle theory was right. In February 2020, I visited my doctor for ongoing cold-like symptoms and while I was there, I thought I would ask about the knots that still lingered. She thought they were likely just cysts but encouraged me to get an ultrasound to confirm. My ultrasound was scheduled for the third week in March 2020, but by March 16th the entire country had been shut down due to the Coronavirus pandemic and my appointment was cancelled.
Toward the end of March, I began to experience pneumonia-like symptoms: shortness of breath, crackling in my throat and chest, and poor to no sleep. After two video appointments with no real relief, I said enough was enough and I saw my doctor in person on 4/11/2020. She listened to my lungs and quickly diagnosed me with pneumonia. She prescribed an antibiotic and told me to come back for a checkup in two days. At my follow up appointment, the doctor was encouraged by my progress but wanted some additional blood work just to be safe. She called that evening to tell me my D-Dimer test results had come back high, which was common for pneumonia and Covid-19, but also could indicate a blood clot. Wanting to rule out blood clots, she ordered a CT scan at our local hospital and told me to go to the ER right away. I checked into the hospital that evening. The scans didn’t show any bloods clots, but my lungs were very similar to a Covid-19 patient. After (3) negative Covid-19 tests and various other test results for infections came back negative, they tried a “shotgun approach” to figure out what was causing the inflammation in my lungs. On 4/20/2020, results from a lymph node biopsy came in and confirmed Stage 4 lung cancer. My life flashed in front of me. I have never been a smoker, had no family history of lung cancer, was only 35 years old, and lived a fairly healthy lifestyle. I have a wife, 2-year-old son, and my whole life ahead of me. This could not be possible!! This is not real! I was quickly transferred to UCSF where they ran additional blood work and scans. They confirmed the diagnosis. The knots in my neck turned out to be cancerous lymph nodes. When asked how I got this, they simply said it is random and could happen to anyone. It was a random cell mutation that occurred and caused the cancer to start growing. To confirm this suspicion, they would perform a Molecular blood test to determine if there was a genetic mutation that had caused my cancer. If this test confirmed the mutation, they had a target therapy in mind that would block and reduce the cancer cells, while having minimal side effects on treatment. Our prayers were answered the end of April 2020 as the results found that I had non-small-cell lung cancer with an ALK-positive genetic mutation. This is a rare type of lung cancer (5% of lung cancer patients) typically found among younger, non-smokers – go figure.
While there is no cure for cancer, research and development of treatments for this type of cancer have gained steam in recent years. Just 15 years ago, molecular blood tests didn’t even exist. UCSF prescribed a treatment called Alectinib which I take in pill-form daily. Studies show that Alectinib (and most target treatments) typically last for +/- 3 years before the cancer becomes resistant to the drug and it’s on to the next treatment. I have not asked nor do I want to find out what the “prognosis” is, but I have read that lung cancer claims more lives per year than any other types of cancer, and over 50% of patients who are diagnosed with lung cancer do not have any symptoms until their cancer has already progressed to Stage 4 . In my last doctor’s appointment, my oncologist said that prognosis has doubled in just the last 5 years due to tremendous momentum in research. My wife and I have done everything in our power to do our part in fighting this disease as we’ve also been following an integrative medicine approach; specifically, an anti-inflammatory diet, no alcohol, exercising 6-7 days/week, mindfulness exercises, staying positive, etc. It feels great to do our part and the next step in that is raising money for research. For me and many others, Research = Life. The more I read and listen to my doctors, the more I realize how much there is still to learn about this disease. There are currently studies about combination therapies, therapies to create resistance against the cancer’s resistance, development of new longer-lasting target treatments, possible immunotherapies, etc. The goal is to make ALK-positive lung cancer a manageable, chronic condition. I know what a strong community I am a part of, so I am reaching out to you all. Any donation would be greatly appreciated, and you know it will go to a great cause. All donations go direct to the ALK Positive/LUNGevity Research Fund. Just last year, this fund secured a two-year research project with Vanderbilt-Ingram Cancer Center and UCSF Helen Diller Comprehensive Cancer Center to develop new combination treatments involving existing ALK-targeted therapies with the goal of extending the progression-free survival of those with ALK-positive lung cancer. The goal for 2020 is to fund similar research projects that will lead to a clinical trial.
For more information on this type of cancer, please visit:
https://www.alkpositive.org/what-is-alk
November 2020: I was interviewed on the Top Gun Show, https://www.youtube.com/watch?v=_bLc2CR7qCg
I never thought I’d be here, but I am a strong advocate that everything happens for a reason. I am not entirely sure what that is yet, but maybe it is to bring awareness to this rare type of cancer that can afflict anyone. Already, this cancer has taught me to prioritize time with my family, live a healthier lifestyle, think twice about rescheduling doctor appointments, and take a step back and ask myself what is really important.
I am blessed to have such a strong support team and community. I look forward to contributing every way I can to help people in my situation and bring overall awareness to this disease I had no clue existed 5 months ago.
Thank you all!
Love,
Ryan
June 2024: The past year has been a little rocky. UCSF discovered potential cancer in my brain in June 2023, and I needed to have gamma knife performed where I wore a frame screwed to my head. Four months later in October, I had a similar radiation performed after they found another potential spot in a different location; luckily I wore a mask and not a frame! I got a break in January 2024. Most recently in May 2024, they found another spot in the same vicinity as the October 2023 spot. They used a different radiation machine to radiate a bit of a larger area to try and zap any cancerous cells that wouldn’t show up on the imaging. In June 2024, I got scan results from that radiation and everyone was shocked. Turns out the cancerous cells spread a lot and now there are multiple spots in the spinal fluid on the surface of the brain. I now await a spinal MRI. If cancerous cells are in the spine then I will need to travel to a hospital in San Diego as they have a special machine for full brain radiation and the spine area. I am also switching from Alectinib (was strong on it for about 4 years) to Lorlatinib because Lorlatinib has stronger efficacy in the blood/brain barrier which is where all of my progression came from.
It has been a few years since I made a strong push to raise money for ALK-Positive research. June is ALK-Positive awareness month. ALK-Positive has partnered with Break Through Cancer to fundraise $500K and currently we are about $120K short of our goal. Break Through Cancer has some amazing therapies in the pipeline that could actually cure ALK Positive. https://secure.qgiv.com/event/alkpositiveinc/page/1797928/
I am excited to start fundraising again and seeing the progress in research and development. Already this year, FDA approved a Nuvalent drug NVL-655 which is prescribed to patients who have seen progression on first and second line treatments; here is more information on that. https://www.cancernetwork.com/view/nvl-655-receives-fda-breakthrough-therapy-designation-in-alk-nsclc
Thank you all for being in my corner, and I look forward to many more years of fighting this disease and hopefully making a difference for many others.