Working to Save My Life (and Ending Up With a Full Hour Interview on The Charlie Rose Show!)
What an incredible week it has been… I am tearing up now just thinking about it as I fly home from New York City (NYC) to my home and my family in San Diego.
A lot of people have been wondering how I have been doing since the last medical update (In Case of Emergency Break Glass). It is hard to believe that it has been almost a month since that post!
In Short: I haven’t been doing too great – but I am doing a lot better than I was!!
It is interesting… yes the new, explosive disease in my liver was a surprise to me and my medical team about a month ago via CT-scan. But symptoms started up basically at the exact same time the scan was received, so I would have known something serious was wrong within days of the scan anyway, even without it. My appetite plunged to zero, I started to vomit every day, I felt narcoleptic level fatigue, my pain intensified.
If you remember – the same day I discussed the CT-scan results with my oncologist, I started immediately on FOLFIRI chemo + Avastin + within a few days off-label Maraviroc. Why did I immediately throw the kitchen sink at my liver tumors including an off-label AIDS-drug that may be a CRC immunotherapy? Frankly because my life was threatened. Near-term threatened. That week was very rough. I was very sick and frankly I was starting to get nervous…
And then about a week later? All the symptoms (except the pain) got better! A lot better. We don’t know yet if my liver disease is responding to the treatment – but based upon those clinical signs, I am optimistic that it is. I should start getting a series of CEA tests soon and a CT-scan in April but until then I am optimistic and very thankful to be back in the world of the living instead of the world of the largely bedridden. The pain is still there… but it is being controlled with pain medications from the excellent palliative care team at my Cancer Center.
Once the Debilitating Symptoms Receded I Got to Work
The key problem I have is my liver disease. All my disease everywhere else is slow growing and casual. I have had cancer for many years now after all… The liver disease is fast growing and aggressive. I won’t die from my lung tumors anytime soon. My liver disease? Well… I need to be very aggressive – to match its aggressiveness!
Hopefully it responds to chemo but what if it doesn’t? I am feeling a lot better (potentially due to the chemo working) but what if that is a false signal? When you are dealing with literally life and death – I don’t know about you but I’m not a fan of playing Russian roulette – I want to get that liver disease gun away from my forehead ASAP thank you very much!
There is a very specialized type of treatment for liver disease in colorectal cancer (CRC) called a HAI Pump. What is it? It is an implantable pump that feeds medications directly into the liver. Technically you can load it with anything but the most common drug loaded into it for CRC treatment is FUDR (Floxuridine). FUDR is a specialized form of chemotherapy that is very quickly metabolized in the liver before it reaches the bloodstream. So… if it is pumped directly into the liver it is a perfect form of liver-directed chemotherapy. This is because very high concentrations of FUDR can be pumped into liver tumor cells, aggresively killing them and never reach anywhere else in the body. If your life-threatening disease is liver tumors – it is a wonderful way to aggressively hit those tumors as hard as possible. It can work miracles in some patients. The downside: it requires an invasive surgery (with those risks) and a 4-5 day stay in the hospital.
New York Here I Come
My cancer center offers the HAI pump but it is a major decision/undertaking and I wanted to speak to the doctor I consider the #1 HAI pump oncologist in the world, Dr. Nancy Kemeny. The problem is: She is at the famous Memorial Sloan-Kettering Cancer Center in New York City. I live in San Diego. The solution: When your life is on the line… New York City here I come!
I quickly set up a medical consult with her. It took some convincing… HAI pumps are not often used for patients with wide-spread disease like I have. BUT… remember my disease is kind of weird. VERY slow growing everywhere in my body – except for the liver. Five years’ worth of CT-scans and medical records later – the point was proven. Nowhere else in my body looks like it wants to kill me anytime soon – except for the liver. Combating it hard & specifically with liver-directed therapy could make a big difference on my prognosis. Since my personalized immunotherapy project and immunotherapy trial possibilities continue – getting my liver disease under control & prognosis improved could have huge impacts on my life. Literally!
My medical consult went fantastically. She is as smart and an expert in this field as I have heard from many people. Medically I am so glad I made the flight! Under her advice (which my San Diego oncologist agrees with) we’re going to plan for the worst (while of course hoping for the best!) and we have switched up my chemotherapy to facilitate a HAI pump surgery if it is needed. My FOLFIRI chemo & Maraviroc continue but Avastin (bevacizumab) is out (you can’t do surgeries within 6 weeks of avastin) and Erbitux (cetuximab) is in. In 6 weeks we’ll get a CT-scan of my liver to see if the pump is needed – and that will lineup with surgical ability to implant the pump via the Avastin washout period.
I remain terminally optimistic with this plan! It plans for the future in an aggressive and logical fashion – hoping that my liver responds to the current treatment but avoiding an “oh crap!” life-threatening moment if it doesn’t! And once the liver is back under control… additional immunotherapies (Maraviroc is potentially an immunotherapy) here I come!
OK OK… You had a great medical appointment in NYC – Where the heck did The Charlie Rose Show come from? An hour long interview???
My first night in NYC I received an amazing email. It was from the Charlie Rose Show asking me if it would be possible to interview me while I was in NYC anyways!
My jaw dropped. I love the Charlie Rose Show! It is a thoughtful, intelligent interview program where guests can discuss their areas of expertise in a thoughtful, intelligent fashion! I considered it the perfect forum for me to discuss topics that were most important to me: the exciting breakthroughs happening in oncology right now (from both the scientist and patient perspective!) as well as some of my clinical trial advocacy projects such as this blog and the COLONTOWN CLINIC. To a nationwide audience. I was shaking I was so taken aback. I said yes immediately!
Taping the show was an activist’s dream come true! I was nervous ahead of the taping but Katie Couric (she was guest hosting) was wonderful at making me and the other three guests so comfortable that once we were on set – my nervousness melted away. The show’s format is a “discussion around a table” and when the cameras started rolling, that is exactly what it felt like. Just a simple discussion. It was an hour long show featuring me and three other wonderful guests discussing where cancer research and treatment stands today and how clinical trials fit into this. It was a wide ranging discussion – including my personal story in detail, my advocacy, early on-set CRC, clinical trials and immunotherapy science in layperson terms wrapped in HOPE (these should all sound familiar to long time readers of this blog!) – all of my advocacy, activism and scientific passions were covered!
I said it once and I’ll say it again – it was a dream come true!
The other guests were all excellent, the discussion was engaging (the hour flew by – it felt like 15 minutes to me) – and I truly can’t say enough good things about Katie Couric. Both on and off-set it was clear the incredible passion she feels for cancer & CRC advocacy and she is whip smart – she knew her cancer facts and information to an incredibly deep level!
I walked back to the hotel after the show in utter disbelief of what had just happened. 3 years ago I was an introverted simple scientist. Tonight I had been interviewed in depth before a nationwide audience on topics I am passionate about. I was overcome with the sheer magnitude of it all. I was exhausted. I was emotional. (Kids don’t do this at home): I had intentionally not taken my pain medications that afternoon in order to be clear-headed for the interview… I was in serious pain. I started to cry. Luckily I was walking down a NYC sidewalk where people don’t bat an eyelash at something so minor as a dressed up grown man weeping as he slowly walked a couple blocks into the luxury hotel the show booked for me.
I crawled into bed and took my pain pills ASAP. The show aired that night so I quickly put out the word on social media. I enjoyed a giant steak and mashed potatoes room service meal in bed – as the pain pills kicked in and I prepared to watch the show on the hotel TV. The show began to air – it turned out incredibly well. I teared up some more (the pain was gone but the emotions and exhaustion remained…)
So that is how I ended up with an one hour interview on The Charlie Rose Show. All I wanted was a doctor’s appointment to try to save my life. I got that. And then so much more… It’s truly a wonderful life.