I first went public with my use of this alternative treatment for my cancer last December, in a post titled, "Tiny Popsicles." If you haven't read that, and you're unfamiliar with Cannabis Oil treatment for cancer, I highly recommend that you read that post before you read this one. It's very informative, and it's one of my all time most viewed posts. Also one of my funniest.
But I didn't tell the whole story in that post. In this one, I want to give you my entire history with this treatment, and elaborate on the experiment my oncologist and I are conducting for the next month, which I mentioned briefly in my last post, The Path Forward.
I'm not going to try to defend this treatment against any detractors or doubters. If you have a problem with the use of medical marijuana for cancer, it's your problem. And if your bone scan looked like mine, your reservations might disappear in a hurry.
In Colorado, we use a "caregiver" system in which, to get your medical marijuana card, you find someone who is registered with the state as a caregiver. If they decide to take you on, you become listed with the state as caregiver and patient. The caregiver is allowed to grow a certain number of plants per year for you, and is responsible for getting you your medicine.
Shortly after I was diagnosed, a friend who is a medical marijuana user asked his caregiver if he could take me on as a patient. His caregiver was not set up to make the concentrated form that's needed for cancer, but he knew someone who was. The caregiver he knew had started making Rick Simpson Oil, a treatment for cancer that's well known and has had great success in curing many people. But he didn't have a true cancer patient yet. My friend's caregiver introduced me to him, and he's been my caregiver ever since.
As I explained in Tiny Popsicles, the "therapeutic level" to kill cancer cells is 1,000 milligrams per day of THC. THC is the chemical in marijuana that makes you high. It's also the part of the plant that's been shown to kill cancer. That is way too much THC for anyone to try to ingest in one day. You have to ramp up to it to be able to tolerate it, which is what I did. I started with just a small drop about the size of a grain of rice, and worked my way up.
After a few weeks, I was taking five 200 milligram capsules of it per day. 9:00 AM, noon, 3:00 PM, 6:00 PM, and 9:00 PM. I called it "dosing." And boy, was I stupid. I enjoyed myself, but I was not much good for anything except writing and crying. I certainly didn't get work done. Between being overwhelmed by what was happening to me and the Rick Simpson Oil, I was useless. But I had an inoperable, incurable, aggressive cancer, so I was doing what I thought I needed to do.
This stuff was not free, by the way. It's pretty expensive, though nothing like pharmaceutical drugs. The treatment period was for 120 days. It went from October of 2015 to January of 2016. I think I paid $2400 total for the whole treatment. One Lupron shot costs $10,000.
Once I went on the program, my PSA fell, from 15.8 to 4.00, then to 1.42. But that was also early in my Lupron treatment, so there was no way to tell which was working, or if it was a combination of the two.
After four months, we ran out of money for it, and I ramped down and stopped taking it. Between getting off of the oil and seeing a therapist, my head cleared up, and I could work again. But soon thereafter, my PSA started to climb. Was it because Lupron wasn't working anymore, or because I'd gone off of the oil? Or both? There was no way to know for sure.
I never revealed that information in my CaringBridge journal while it was going on. I told no one except close friends about the Rick Simpson Oil treatment. I was afraid that people would judge me. Well, I don't really care about that anymore. So there it is. The treatment program I revealed in Tiny Popsicles was my second time around with cannabis oil, not my first. And now, I'm starting my third.
The second time around, I didn't want to be impaired like I was when I took it orally. I read up on it, and found out that the recommended way of taking it for prostate cancer is also the least impairing way; as a suppository. It releases right next to the prostate. If it's done the right way, there is little or no sensation of feeling high. It feels very relaxing and calming, and helps with pain and sleep.
When I told my caregiver I wanted to try the suppository method, he had moved on to a new, more refined type of cannabis oil, Full Extract Cannabis Oil, or FECO. It's not dark and sludgy like Rick Simpson Oil, it's a beautiful clear gold color. Unlike Rick Simpson Oil, it has no smell. I fill molds I buy from Amazon with the oil, which is a 25% solution with coconut oil as a carrier. Almost 100% THC.
Because FECO and coconut oil mixed together are not solid at room temperature, the molds have to be frozen. Hence the name, "Tiny Popsicles." Or as my friends Christopher and Lori call them, "butt rockets." You can make up your own jokes. There are plenty of them in the Tiny Popsicles post. I can't top them here.
With metastatic cancer, however, it is important to get some THC into the bloodstream, since that's how the cells travel. So I do also take trace amounts orally to keep some THC in my system. The suppositories give me a very high tolerance, so the small amount I ingest doesn't impair me.
That program began in December of 2016, and ended in January of 2017. While I was taking it, my PSA fell again, from 4.77 to .16, then .06. But I had also just started on Xtandi, so there was no way to tell which of them was responsible for the good numbers. After 90 days, I ramped down again and went on a low "maintenance" dose. When I started ramping down, my PSA started climbing again. But Xtandi also became ineffective at the same time, or so it seemed.
Leading up to this last PSA test, I was thinking that, if the next result and subsequent scans showed that hormone treatment was no longer effective for me, I wanted to try going back on full dosing of the suppositories for 30 days to see if it made a difference. Now there would be no other factors, and we'd have a true test.
But how would I pay for it? The amount of oil I'd need would cost about $900. I'd had help from a friend the last time, and money from our GoFundMe campaign to pay for the first, but neither of those are available to me right now. I didn't feel like there was anyone I could ask for that much money for an experiment. And if it worked, then what? Do I have to stay on it for the rest of my life? Not that I'd mind doing that. But again, I'd have no way to pay for it.
When it was apparent that my cancer was growing again, I talked to my caregiver. I told him what I had in mind, and about our financial state. Without hesitation, he volunteered to supply my oil for free. Long term, if I stay on it, he's looking into a funding mechanism for patients like me who can't pay out of pocket for treatment. What a blessing.
As I said in my last post, my oncologist was enthusiastic about this experiment when I told him what I had in mind. He thinks it's a perfect time to test it for real. So much so that, when I met with him last Thursday, we were originally going to use my previous PSA result from two weeks prior as our benchmark. But the next morning, his office called me and said the doctor wanted me to come in for a new test to set a more recent benchmark. That's how seriously he's taking this. Another blessing that's hard to quantify. A doctor who is curious rather than dismissive, and approaches this in a scientific way.
And it's a good thing he called me in for that blood draw. Two weeks ago, my PSA was .98. You all saw what my bone scan looked like with that number. I just got the result from the blood draw on Friday, and it's 1.41. It's a good thing we did that last test. Our data would have been flawed if we hadn't.
When I thanked my caregiver for his generosity, he said that I had enabled him to have "all of this." Meaning the successful practice he now has treating cancer patients like me. I was his first, and having a cancer patient with an illness as advanced and aggressive as mine gave him credibility to build his practice. All because a friend of mine knew a guy who knew a guy. I don't believe that was a coincidence.
So as always, I feel very blessed, no matter how this turns out. From the cooperative attitude of my oncologist to the kindness of my caregiver, I feel like I receive blessing upon blessing. But I do want to know how this turns out. Has this been playing a major role in my cancer treatment or not? Is it keeping my cancer under control when I take it, or just making me feel good and helping me sleep? That's what this experiment is meant to show.
My next blood draw is August 2nd. Then I'll see my oncologist and we'll discuss where we are. If this doesn't work, and there are no clinical trials for me, it will be time to make some hard, final decisions. Of course, I'll tell you all about it when the time comes.
Thanks for your support, even though you may have doubts about this form of treatment. I hope you're at least curious to see if it works or not. I know I am. #waroncancer #bearingwitness