10 Years Of Thriving With Cancer Lets Have A Party

If you haven’t met me yet, I’m the older looking guy on the right who might have delivered your board to your house, helped you decide which board to buy or reminded you to “get on your knees” in the name of safety approaching the dock. I’m Cort Larned, co-owner of 101 Surf Sports and I’ve been thriving with Cancer for over ten years. I’m a veteran waterman and grateful to be here to share the magic of the ocean and San Francisco Bay.

101 Surf Sports in conjunction with the Lymphoma and Leukemia Society is hosting the party of all parties at the shop in San Rafael this October. We will raise money to help fund the research that saves lives. This research is not only prolonging life but improves the quality for those fighting the fight.

I’ll get to the party, but since this event is about cancer, and we have all been touched by this cruel disease, I wanted to briefly share my journey which like many began with a series of revelations; discovery, diagnosis, education, treatment, outcome and for me ultimately gratitude.

Discovery 

People always ask me how I found out that I had cancer. At 54, I just felt something was different, I didn’t feel bad, just felt different. I’ve been an athlete my entire life, I still windsurfed regularly, and I was starting to get into stand up paddling, and I felt strong.

I talked with my wife about what I was feeling and she urged me to get it checked out. Despite the fact that I had none of the symptoms usually associated with lymphoma; night sweats, weight loss, or low energy, but that was my diagnosis. The process of diagnosis and identifying the specific type of cancer that you have is a laborious process that sends the patient and their loved ones through anxiety hell...

My first oncologist, briefed me on the various types of lymphoma; with lymphoma light the protocol is something called RCHOP, and that would clear it up, a more aggressive form means a stronger course of Chemo and an analogous transplant is reserved for the worst case scenario. Life expectancy and survivability percentages are attached to all of the above. It truly is terrifying experience.

Diagnosis

I was still quite groggy from the shot of versed intended to sedate me for the bone marrow draw on my pelvis, and as I was headed out the door the doctor calmly informed me that he had gotten the results of my pathology, my particular type of lymphoma is called Mantle Cell Lymphoma and that we would get together soon to discuss treatment options. “Like Mickey Mantle,” I asked, ”No” he said, “like the earth’s mantle or it’s core.” 

Education

So like most people I naturally went home and googled it. It read something like Mantle Cell Lymphoma has a 90% mortality rate at 5 years with most people dying within 18 months. I freaked and I called the smartest doctor I knew, Mark Siegler. I met Mark at the University of Chicago Medical School’s MacLean Institute through my wife’s family. The institute focuses on the study of medical ethics, they help Doctors with bedside manner and with the difficult task of breaking bad news to families and individuals. If there is something Mark doesn’t know he knows who will have the answer. I called Mark and shared my new reality. He advised me to immediately drop the mouse and step away from the keyboard. He told me that I was reading old data, and that he would do some reading and that he would call me in the morning, and to think positive.

Mark called first thing in the morning and had good news, a just completed clinical trial called cal 59099 had made great strides in the battle against MCL and although they couldn’t say that they had cured MCL, that 60% of the people that had gone through the regime had gone 5 years without a recurrence, and that the study was done 10 minutes from my house at UCSF.

Treatment

A few days later I was at UCSF waiting to meet my new Oncologist, I was alone in a room with a very scary and pessimistic oncology coordinator who was threatening me with stories of how I was going to be as weak as a kitten and that I needed to get ready for the worst. Finally, my new oncologist comes into the room and slumped down in his chair, despite his youth he looked tired and somewhat sad. I was naturally a little worried. He finally spoke. He said that I was going to die but it was his job to have it be something other than Mantle Cell Lymphoma that would kill me. His name was Dr. Charalambos Andreadis (Babis) (pictured at top middle) he told me to call him Babis. I liked him immediately.

I asked if I could get started that day and Babis smiled and told me that it wasn’t necessary, and I would begin my treatment soon enough.

They started me off with the new wonder drug Rituximab, I had my first infusion, I saw Babis a couple of days later, I told him I was feeling better, dead pan he looks at me and says that’s the placebo effect… I didn’t argue.

I began my treatment in full on November 2nd 2009, it was called Ultra Chemotherapy with stem cell support, basically they try to reboot your body by beating you and your cancer down.

First I would have a round of RCHOP, two weeks later another round and so on until I went into remission. It usually takes between four and six treatments to get the person into initial remission. After the second treatment and subsequent scan it was determined that I was cancer free...I was stoked.

So you get a couple weeks off before they started the Ultra Chemo phase of the treatment. In January of 2010 I started the Ultra Chemotherapy regimen with three high doses of chemo slowly over a five-day period, then you stop producing cell completely, and you go into what's called neutropenia, where you aren’t producing cells, and don’t have an active immune system. Then they bombard you with antibiotics and drugs to keep you protected from disease, and drugs like Neulasta that get your immune system to come charging back. Finally, they draw out your super charged stem cells to be used later. Then you are given four weeks off for bad behavior, than the second phase of the Ultra Chemo is administered with an even more massive doses of chemo in a shorter period of time, this is followed by an infusion of your super charged stem cells, and then they wait for you to get healthy before your released back into the wild. I finished all of my treatment in June of 2010, and that treatment had bought me 6 ½ years of being cancer free.

In early 2017 I felt a lump in my lymph node of my left hip, the same place as where I was initially diagnosed. I knew it was back, so I texted Babis and after an initial exam and scan it was confirmed that it had returned. When I was initially going through my MCL orientation I was told that if and when my cancer returned that they had a drug that was working well on recurrence called Velcade to help prolong your life. Babis said in that in those 6 ½ years they had made great strides in treatment of MCL recurrence and now that there were several new treatment options better than Velcade. I began taking an oral chemo everyday called acalabrutnib, I’d take it first thing in the morning, the side effects were fatigue, nausea, and diarrhea. I figured a new improved strategy, I started taking it before bed, I slept soundly through the night and woke up to a great bowel movement, but eventually I started experiencing a number of annoying side effects so last July I went to see Babis to talk about the side effects and we both agreed to take a Chemo break and see where I was with my MCL.

The scan was negative and amazingly I was cancer free and I continue to be and so for the last 13 months I haven’t taken any form of Chemo. And once again I feel strong.

Outcome

This summer will mark 10 years for me surviving Mantle Cell Lymphoma. I can’t put a price on what those ten years have meant to me, but to put into perspective back in 2009 my three sons were Cortland 13, Maclean 11, and Ian 8, Now they are 23, 21, and 18 respectively. In those 10 years we got to savor 3 giants world series, and 3 Golden State championships. I’ve seen all my kids sporting events, witness their graduations, counseled their maturation, helped them get ready for proms, I got to be there for their successes and their missteps. Most of all I got to experience my kids turning into fine young men and so much more.

In the last eight years, I’ve been grateful to have you, our 101 Surf Sports Community in my life. You race, you train, you tour, you have communion with nature and fellow paddlers, the love you bring to the shop(s) is as powerful as any medicine.

Gratitude

This brings me back to my greatest revelation which is a never ending sense of gratitude to UCSF, to Dr Lloyd Damon who authored cal 59099, Dr Jeff Wolf , Dr Lawrence Kaplan, and all of the unbelievable committed doctors, scientists, technicians, and countless individuals that work tirelessly on a cure for all the diseases that we battle. I also have a special love and gratitude for the nurses that hold your hand and wear hazmat suits to deal with the messy and dangerous side of caring for people going through the battle, They are truly angels on earth...so thanks to you all.

There are two people that I’m most grateful to Babis; not just my doctor but a friend who patiently listens to my questions and clearly explains complex medical information so that even I can understand it, and my business partner Dave Wells who has been the backstop for me and our business. Together we have created a water community that thrives and continues to grow.

I finally I am deeply grateful to all of you who generously donate to LLS. Without your funding and support people like me would not be here today. Everyday progress is made, lives are spared and the quality of those lives are improved.

If you aren’t able to make the event but want to donate to LLS, please visit my page by clicking here, and THANK YOU!

And for the party of all parties… click here and sign up!