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Overview from J Hansbrough as of February 2019:
As you probably know, I was diagnosed in August 2018 with metastatic renal cell carcinoma. Renal cell means kidney, carcinoma means cancer, and metastatic means spreading. The cancer is Stage IV, which indicates that it has spread beyond its original neighborhood and into distant lymph nodes and organs in other parts of the body. Like me, it is virile and aggressive, but unlike me, it shows no signs of slowing down.
The past six months have been unreal. Not imaginary, unfortunately, but very much unlike anything resembling my prior experience of reality. My continued sanity is a testament to the exceptional decency of my friends and loved ones. As a friend put it, I've got some real good people in my corner.
Anyway, I'm not sure exactly what's been shared or who it's been shared with, so this may be old news for some of you. I've been told that Mike Reed and Andrew Carlberg in particular have been helping people stay up to date, which I am deeply grateful for. Anyway, for the uninitiated and the veterans alike, here's a not-so-brief rundown of what's going on with me, starting from the beginning. Apologies for all the detail--you can find the upshot in the last few grafs, so please feel free to TL;DR as much as you like.
The cancer first started in my right kidney. I've been told that cancer tends to follow the flow of blood, so another tumor subsequently formed in my inferior vena cava (a major blood vessel that sends filtered blood from the kidney to the heart). The disease also infiltrated my lymphatic system, which is a complex web of organs and tissue that filters toxins and transports white blood cells. The primary hubs of this system are called lymph nodes, which exist in clusters throughout the body. Upon diagnosis, tumors had already popped up in eight to 10 lymph nodes in my abdomen and chest.
Surgeons removed my right kidney in October, along with the tumor thrombus in my vena cava and a handful of lymph nodes in my abdomen. I was told that surgery to remove all of the affected lymph nodes would be too dangerous and extensive, and wouldn't cure the cancer anyway, so those were left in. It turned out to be a good call: the surgery was a tricky bit of business, and I nearly bled out on several occasions, requiring two blood transfusions in four hours, which is apparently two more than one would ideally want. On the bright side, I now have a wicked cool scar that runs from my groin to my sternum.
After recovering from surgery, I began a kind of systemic drug treatment called immunotherapy. Immunotherapy is an intravenous drug designed to supercharge your white blood cells. These cells are part of your immune system, and attack the viruses, bacteria, microbes, and other foreign invaders that make you sick.
The immune system doesn't always recognize cancer as something it should be worried about. These drugs are supposed to alter some of your white blood cells in such a way so they recognize that cancer is bad. Ideally, they will then attack and try to kill the cancer cells. Patients with renal cell carcinoma have shown excellent results with immunotherapy in recent years including significantly prolonged survival.
Unfortunately, based on recent MRI and CT scans, it appears that my cancer is not immuno-responsive, which is to say that the immunotherapy did not work and the cancer has continued to grow and spread, quite rapidly in some areas. At present, there are a handful of rather large tumors in my chest and at least one in my lungs. This type of cancer often spreads to the brain, but in a small bit of good news, does not appear to have done so at this time.
Because the tumors are large and getting larger, they are starting to push up against things they shouldn't, such as my arteries, lungs, and trachea, thereby causing certain symptoms such as coughing, shortness of breath, and headaches.
The symptoms are currently tolerable, but my oncologist wants to act fast before they become worse and/or life threatening. I am expected to undergo two treatments to address this stuff in the next few weeks: radiation therapy and targeted drug therapy.
Radiation therapy is a procedure. A doctor uses a machine to shoot a beam of concentrated radiation at your tumors, which is supposed to cause them to shrink, or at the very least stop growing. Side effects include fatigue and nausea, as well as skin irritation and hair loss in the areas where the beam is focused. Don't worry, the hair loss should not effect my scalp or beard at this time.
Targeted therapy will follow, in the form of a drug called Cabozantinib, which is not technically chemotherapy but has similar effects. I'll take it once a day in pill form. It's supposed to prevent tumors from forming blood vessels (or something along those lines), which stops them from getting the nutrients they need to grow. Again, this treatment will hopefully cause the tumors to shrink or at least not grow any larger. Our good friends nausea and fatigue will be back, along with diarrhea and something called hand-foot syndrome, which sounds made-up but is apparently a real thing. I don't like the idea of being afflicted by something so fake-sounding, so I haven't looked it up and refuse to learn what it means. Anyway, I've tolerated all of the treatments very well so far, so hopefully side effects will continue to be on the milder side.
Unfortunately, the effectiveness of both treatments (should they work at all, which is not guaranteed) will be temporary. Cancer is a sneaky bitch, and the malignant cells will eventually mutate and stop responding to treatments. Among RCC patients who showed disease response, the median length of time that Cabozantinib has proven effective is around 9 months.