6. Kicking Cancer is a Full-Time Job
It has been a very good week. First, a big, big win. Amazingly, my brain MRI came back clear! If you recall, the MRI last October at NIH had found minute spots on my left frontal lobe, which had negated me from participating in the immunotherapy trial. When I received the “no cancer visible” text from my oncologist (with a red balloon emoticon), I burst into tears and sobbed for two whole minutes, then had a good long belly laugh -- that kind of laugh that’s contagious, especially to yourself. What an awesome relief! Hands down, this is the best news I’ve received since diagnosis.
Over the last few weeks, I’d been starting to mentally prepare for the possibility of radiation on my brain, and simultaneously, not wanting that eventuality to become reality. I’d been holding onto some low-level anxiety that I’d just need to have it, trying to reconcile it. All this completely dissipated with my crying and laughing. The tension leaving my body was palpable. I am incredibly glad that brain radiation is not something on my horizon. I was elated the rest of the day, which also happened to be Australia Day.
The other fantastic news is that our fundraising effort has far exceeded our expectations and we met our target in just 17 days. It’s unbelievably unimaginably incredible! I’m not sure that I can adequately impart the gravity of exactly what this means for Dave and I, and for our families… although I do think it will help if I spend some time explaining exactly how it will impact my care moving forward. A simple thank you just doesn’t seem adequate. Know that what you’ve given us is the freedom to explore lengthening the runway using every available resource. From the bottom of my heart -- in that quiet, dark and very safe place -- thank you.
Overall, the goal of the fundraiser was to open up options for integrative and complementary options to traditional cancer treatments that are not approved by the FDA, and therefore, not covered by insurance. Many integrative options are standard protocol for cancer care in Europe and Asia, but as they haven’t been tested and approved for use in the US, you’re mostly on your own paying for it if you want to use them.
So, with three things to celebrate, I had a small glass of a very nice Australian red wine with my dinner that night. I’ve probably only had three glasses of wine total in the 6+ months since diagnosis. It was a dietary extravagance that I wholeheartedly enjoyed, paired with my new favorite chocolate. You just had to click on the link and see what the chocolate was, didn’t you?!
A friend recently asked me how I typically spend my days. Please hold onto your hat, we’re going for a ride on the Cass cancer information highway. Prepare to be overloaded.
Easy answer: 100% self-care first, and then see what else there’s time and energy for. My non-negotiables every day are eating a good healthy vegan diet (I’ll write more on this later); taking the required medications; supplements and tinctures; meditation; exercise; lymphatic massage; soaking in a very hot bath with epsom salts right before bed; and, getting good sleep.
With my current chemo schedule, my life is divided into two-week blocks. The week of chemo is pretty much a write-off, during the three days of treatment I don’t have energy for much else other than my non-negotiables, the couple of days afterwards I’m catching up on the things I push off during treatment. I usually bounce-back pretty well, although I’ve noticed a cumulative effect on my short-term memory the more chemotherapy I have. Apparently, it’s a known entity, called Chemo Brain. Charming! Most notable and slightly humorous example was when I called a pelican a penguin, and stood firmly by my observation. Kinda the same, but not really? They both have seven letters and start with “pe.” Subtle, but startling. When I walk into a room to do something, often I forget what I was going to do. Dave sometimes asks me what I’m up to when he finds me standing still, trying to remember, and I just say “waiting.” I have to have humor about it, and give myself a wide berth where this is concerned. Being frustrated or angry just makes the remembering part harder. On the upside, it’s the perfect excuse for lots of things, I’m only limited by my chemo brain imagination!
In the weeks between traditional treatment, I go to work on my integrative care. Here’s a list of all the resources I currently engage in for symptom management and support:
Integrative oncology: The goal is to optimize cellular health, and works in conjunction with traditional oncology care. Runs over $1,000 every time I go, 3-4 times a month. It takes 6-7 hours and is up in the city, a whole day affair when you build in my non-negotiables. It includes supportive IVs that change depending on my blood work, most often amino acids and ozone therapy, and Pulsed Electromagnetic Field (PEMF) therapy
Acupuncture: calms nervous system, resets digestion after chemotherapy, aids in appetite stimulation and sleep. Close to home and covered by insurance, although my provider is out-of-network. I go twice a month
Chiropractic: ensures that the nervous system is not encumbered by structural misalignment and able to optimally support your immune system. Especially important if you’re trying to heal your body. Close to home and covered by insurance, although my provider is out-of-network. I go twice a month
Swedish Massage: helps remove toxins from your body after chemotherapy. Not covered by insurance, I go twice a month, $150 total
One Brain® Kinesiology: I experienced this therapy at Hippocrates and have continued with the same therapist via Skype, each session is $135. I do it once a month
Research, research, research
This is in addition to the supplements and tinctures that I’ve been taking, which are collectively about $300 a month. My medications are $50 a month and are covered by insurance. Cancer care is expensive!!! All this, in addition to only eating organic food. Whole Paycheck, anyone? There are also things on my list I haven’t yet been able to accommodate, such as ozone or far-red infrared sauna therapy, hyperthermic therapy, sound vibrational therapy, etc. I need to spend a bit more time researching these.
Backing up a little, when I first met with my integrative doctor in late November, I already had my FOLFIRI chemo protocol set up by my regular oncologists to start the day after this appointment. At the integrative appointment, I had a blood biopsy test done, called RGCC. It’s a German company that does its testing in Greece, so my blood was taken late afternoon on Friday, and sent on ice via Fedex. The test runs about $3500, depending on the Euro exchange and is not currently covered by insurance. It produces “an individual profile of chemotherapeutic drugs and natural substances that can be used to achieve the best treatment outcomes,” by testing circulating tumor cells (CTCs).
It’s very helpful if you have an uber smart integrative doctor who can employ this information to help create an overall treatment plan. It informs what chemotherapy drugs you should use in combination to cause cancer cell death, called apoptosis, along with those natural substances (e.g. tumeric or cinnamon) that we know are generally effective against cancer. It also tests what immunotherapy drugs look effective, as well as options for specific types of targeted “vaccines,” or drug combinations that might teach your body how to search and destroy cancer cells. None of these are a guaranteed slam dunk, but are tools to help limit the options to explore. For example, since having this test done, while starting my FOLFIRI regimen, I’ve also been taking artecin, fucoidan and tumeric in high doses to try to also affect cancer apoptosis. You switch the natural substances up each month to keep the cancer cells guessing, these are pulled from three separate test categories that don’t have any contraindications to each other, or to chemotherapy or immunotherapy drugs.
The analogy I’ll use for my overall plan for kicking cancer is this: Picture a small plot of land that has some trees and shrubs, but is totally overgrown and choked with noxious weeds. This is representative of me at time of diagnosis. Chemotherapy is the “weed-wacker” to knock the cancer back so that we can plant some immunotherapy seeds. The seeds take a while to grow, and also need good air, water, nutrients and sunlight to grow. Some seeds will grow, some will not. Immunotherapy works in approximately 20% of patients, but there are many options, we just need to find the right combination. This is where I think my “cure” will come, my body needs to be able to figure out how to holistically find and eliminate cancer cells on its own. Chemotherapy is a tool to lengthen the runway to enable the space and time to explore the immunotherapy route.
From my RGCC test results, the chemotherapy drugs that look to be most effective against my type of cancer is Cisplatin and Etoposide (EP/PE), with Paclitaxel or Abraxane. Do those first two sound familiar? Those are the drugs recommended by NIH when I was denied entry into the trial. I’ve had Cisplatin before, and I know from the oncology doctors and nurses that I’ve asked about EP/PE patient tolerance, that it is a difficult regimen and very toxic if given the FDA-approved way. As I had an incredibly difficult time with the GemCis chemo protocol, it is safe to assume that I’d have a harder time tolerating EP/PE. Enter Insulin Potentiated Therapy (IPT), a low-dose chemotherapy alternative, which has been shown to have a similar level of success as it’s high-dose counterpart, but with significantly reduced symptoms like nausea, digestive ails, hair loss (not too worried about this, I’ve already lost about two-thirds of my hair) and liver damage. We know that cancer cells have 20-50 times the metabolic rate of healthy cells, and use sugar instead of oxygen to survive. Insulin is used before the chemotherapy infusion as a messenger to alert the cancer cells that there is glucose available to consume, and then they’re hit with a low-dose chemotherapy that’s administered over days instead of hours. There again, this isn’t a sure bet, but something that has a good chance of success, making it a highly desirable first option. I can keep the high-dose EP/PE option in my back pocket as a last resort. At $30,000 a cycle for IPT without much coverage from health insurance, I might need two or three cycles. To compare, I already had four cycles of GemCis, and five cycles of FOLFIRI.
The most interesting distinction between traditional and integrative oncology is the mindset regarding the end goal, and the subsequent quality of the conversation and language used around that mindset. My oncologist is and has been a perfect oncologist, very smart and adept at navigating my traditional care. He describes my treatment as a tool to ensure quality of life for what time I have left, which is a very important thing. My integrative doctor talks about me being tumor free, switching things up as necessary to ensure quality of life while on the road to full remission. The end goal is different, which makes the thought process on how to get there dramatically different. Both are important to have on my team, to use each for their specific areas of expertise.
Our appointment with our integrative doctor on Tuesday was so very empowering. He was thrilled with my progress so far, and I do feel that it is remarkable. And, for the first time, our conversation was not limited by cost. We discussed all the options on the table and made a plan. This is exactly what I hoped that our fundraiser would help us accomplish -- it is a very big deal to be able to be in this position. There are great solid options to explore to be able to kick it entirely. I told Dave afterwards what this appointment represented and what it meant to me. How lucky am I to be so very excited about treatment after a doctor’s appointment?! Many others in situations similar to mine are not so fortunate.
Here’s our plan: Given my lovely quality of life right now, along with the response to my current chemo protocol, I will complete another three cycles of FOLFIRI before switching to IPT. Five cycles isn’t quite enough time for the total result to be fully realized. My oncologist is going to add in another drug to target a specific cell mutation, which we’ll do for the next three treatments. The growth of the cancer in my left iliac shows that it isn’t a good long-term plan, but the gains in the rest of my body make it a good short-term plan. Another six weeks of FOLFIRI, followed by IPT should help lengthen the runway. I’ve realized that I need to feel relaxed to become an immunotherapy explorer, and this will give me the best chance of being exactly that. And yes, I will be wearing a safari hat.
Intuitively, this plan is what makes most sense to me. After IPT, I should be ready to re-engage with NIH and the immunotherapy trial. Interestingly, my RGCC test results list one of the drugs in that trial as being effective against my cancer. Maybe less of a crap shoot?
Thanks for riding the rollercoaster information highway with me. You can now release the grip on your hat.