This post is copied from Brad's personal blog, The Road Taken.
Many may recall: on October 27, I started the surgery process with my arms raised; ready to fight. The surgery decision came briskly, just 2 weeks following my initial diagnosis on October 12.
At the time, I was told to anticipate 6 weeks of recovery, which would align well with the next phase of treatment: systemic immunotherapy to help eliminate, shrink, or stall my cancer.
We never could have anticipated what would follow.
Week after week, we were flooded with bad news: the cancer spread to my spine; fracturing a vertebrae; it spread to abdomen lymph nodes, and maybe my skull. The tumor in my liver had grown at a terrifying rate–4x it’s original size. Newer tumors popped up in my lungs and liver. I developed double vision due to a weakened cranial nerve and, to boot, two small hematomas on my brain. I’ve now lost over 50lbs.
All that disease progression took place in less than 6 weeks.
Before learning of the spread, we were given a real glimmer of hope on a “cure” treatment because my pathology report finally exhausted other Renal Cell Carcinoma types, putting my cells in the category of ‘clear cell’ Kidney cancer. This is, relatively speaking, a more common and better known type to treat.
Just a week later, my progression rate caused gasps among the tumor board that reviewed it–and it would drastically changed my treatment path.
Now, whether ‘clear cell’ or not, this pace of progression made the option of a known curable treatment, Interluekin 2 (IL2) at this stage virtually impossible because of my poor–and declining–physical condition.
This alone was a major blow: although IL2 gives 5 years cure to just 6-10% of its recipients; it is the only known treatment to provide that path. IL2 is also effective at achieving some other progression free goals for up to 40-50% of patients. But, IL2 is known as a brutal treatment itself; no picnic; requiring ICU like care and often leading to very challenging and long-term side effects. So, some saw it as a blessing in disguise for me not to potentially endure such a toxic and low chance of success.
Even still, if it were on the table, i would likely have taken the shot – there was a specific IL2 treatment trial in Dallas i found that seemed like a good fit based on the metastatic state of my first scans in October.
But, new information leads to new decisions.
I would add: every stone of 'alternative treatments’ is being concurrently researched, considered and evaluated. Cannabis oils; infrared saunas; dendritic vaccine therapies; stem cells; supplements; hyperthermia; Low dose chemo; tumor genomes; vitamin C IVs, Accupuncture, essential oils, fasting…you name it. I’ve asked anyone with suggestions to make them and be specific. And, as I’ve intended from the beginning, we’re continuously closing in on some hybridization of these strategies in concert with cutting edge medical treatments, comprehensive nutrition and cancer related supplemental supports.
I hasten to add: I’ve been told I’m on prayer lists all across the country. I’m aware of a continuous stream of loving thoughts, prayers and well wishes, And, with every text, note, FB like – it all adds up to a profound and sincere expressions of love that lifts me up everyday.
I know I’m not alone.
Further, friends brings books, food, games, gags. We’ve raised thousands of dollars over night–multiple times. It’s a truly awesome and incredible array of love. These acts of kindness and love reveal to me an enormous degree of our collective spirit: showcasing such beautiful human decency and undeniable agency is inspiring.
And, I’m doubling down with my daily (yet feeble) attempts to practice mindfulness, meditate, eat gluten free, dairy free, sugar free. To be vulnerable – brutally honest even – about what we’re up against without giving up hope.
So, I’m asking everyone for an ounce more: please move confidently with us as we sift through the days and weeks ahead. It’s a tough sell: confidence in this approach given how the disease has spread so far: I know I’ve tried to sell it before, but didn’t respond quickly enough to the horrifying pain I was in the week of Thanksgiving, Then, I was then holding on fast to my potential cure. Hoping that I could just turn the corner on my own. I was wrong.
This it’s my most important marker in the next 4-12 weeks. If we can do it, it will allow this avalanche of love and the 'complete treatment’ approach to get the real shot it deserves at seizing the day. And–I truly believe–then a path to adding years on my horizon instead of months.
On Saturday, November 26, I was admitted to the hospital for a whole week.
After completing 2.5 hrs of MRIs straight on my fractured back, drenched in sweat, we set a path for the near term: largely to avoid risk of spinal cord injury. With the St. Joe’s team, we negotiated to accelerate 15 doses worth of radiation in 5 days so I could as swiftly as possible commence the systemic immunotherapy I desperately need to halt this progression.
But, I also have to own the reality, and face up to the fact that my time here may be viciously short. All of this has come so fast and in dizzying degrees of urgency, I finally podcasted openly and directly about my mortality. Up until that point, I’d been trying to compartmentalize all of these complications from the cancer itself – trying, desperately, to outflank the disease and the threat of death.
If there was one ounce then of good news, it was this: my mission got crystal clear: get in line for systemic therapy that will reduce the rate of progression. Then, continue to do everything within my humble power to be healthy, be connected, and be alive through this process so I can fight for the next stage all the way through.
Unbelievably, just weeks before all this transpired in my case, a new study provided unusual clarity: One of RCCs front line therapy, called Cabozantinib, saw dramatically better results than its peers at reducing rapid disease progression.
For once, I felt this was unquestionably my best path right now. My doctors rushed an order–there are maybe 200 patients in the country on this pill–which costs an astonishing $100,000 per month. But, hey, I’m worth it! And, this is my best shot.
Everyone out there: this is heavy and wildly intense. But you see me in this next photo: arms raised, ready to fight.
This photo was taken December 8, 2016: It was my first dose of Cabozantinib, which arrived by mail the afternoon before. We have a 30 day supply.
It will be arduous: most of all in the uncertainty of whether its working until our next scans in 4-6 weeks. And, desperately, I’m hoping to be as boring as possible during this time: no emergency visits. Side effects to a minimum.
So far, so good. My pain management is better and the treatment isn’t having any major effects. I’ve had three similar days – a level of predictability I’ve not had in months.
So, day zero was Thursday, December 8 at 7am.
Despite all the ups and downs to date, we must measure all future disease progression from my state now; not from October. It’s a new beginning; a steeper climb, but still filled with hope and promise.
Day zero: I started the systemic treatment yesterday. Day 1, I’m up. I’m working. I’m turning the corner.
Now, we all have to see how it proceeds. Your patience and support is vital to me more than ever. I’m confident this is the right thing and am so grateful for everyone’s faith, support and encouragement.
Stay with us. Let’s fight.
8/27/2021 02:53:33 pm
Nice post thanks for shaaring
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