Our New Chapter

A week ago we returned to Cancer Treatment Centers of America in Phoenix, so that Dempsey could be tested and the status of his disease evaluated. I’m happy to report the news is good.

At this point, Dempsey is cancer-free. The testing was comprehensive. He had CAT scans and PET scans of his body from the base of his skull to his knees.

Because he has been eating by mouth for the past six weeks, Dempsey was able to have his PEG tube removed (the tube that was surgically implanted into his stomach before radiation). He’s pretty excited about that.  In a couple of weeks he will have the chemotherapy port in his chest removed.

From here on, I should warn you, this post gets a bit technical. Dempsey and I decided to include some specific research because it may be helpful to anyone else facing cancer. Feel free to skim over any parts you don’t find fascinating.

CAT scans (computerized axial tomography) use x-rays and a computer to provide a picture of the structures within the body, and they showed no tumors. PET scans (positron emission tomography) are used in cancer to detect whether a malignancy is present and whether it has metastasized. The patient is injected with glucose (sugar) solution with radioactive tracers attached.

The PET results show which tissues have absorbed the sugar and to what degree. The absorption is measured in units called SUVs, or standarized uptake values. Malignant tissues absorb a high degree of sugar; for example, the tumor in Dempsey’s neck had an SUV of 15. Last week the site of the tumor (which had been surgically removed) displayed an SUV of 3.66.

The area at the back of the tongue (which doctors guessed was the original site) displayed a value of 4.2 on each side. Doctors look closely at any value higher than 3, but Dempsey’s oncologist, radiologist and surgeon all agreed his SUVs were slightly elevated only because of residual tissue damage from the intense radiation he underwent just three months ago.

All three physicians proclaimed themselves thrilled with the results. We will go back for another PET scan in October, then return quarterly for checkups for the first year or more. After that, there will be checkups every six months.

This first 3-month checkup is important. Because Dempsey showed no signs of remaining cancer, the statistical likelihood of a recurrence in the first year has dropped. If he remains cancer-free at a year post-treatment, and then at two years, the likelihood of a recurrence drops still further. When he reaches the 3-year post-treatment mark with no recurrence, he will be considered cured.

As I’ve written before, Dempsey’s type of cancer, HPV+ oropharyngeal squamous cell carcinoma, has a very high cure rate (about 82%). That fact, supported by his recent test results, leaves us enormously encouraged and grateful.

We expect the very best outcome: Dempsey’s cancer will not return.

We all know, of course, that cancers of all types do sometimes recur, either at the original site, or in another part of the body. Why does that happen? Much remains unknown, but one answer is CTCs, circulating tumor cells.

Even as a malignant tumor is being treated, it may throw off cells called circulating tumor cells. These cells move through the bloodstream or, less frequently, the lymphatic system, looking for a new home. In time, they leave the blood vessels, “adapt to the new microenvironment, and eventually seed, proliferate, and colonize to form metastases.” Scientists believe some CTCs are also Cancer Stem Cells, which are self-renewing, highly motile and invasive, and resistant to apoptosis (cell death).

Research on Circulating Tumor Cells is underway in the United States. There is even a new test to find CTCs in the blood of patients with some breast, prostate and colon cancers. However, few American patients receiving conventional treatment now have access to testing for CTCs.

When I raised the subject with Dempsey’s doctors, asking whether he might be at increased risk of CTC activity because of the aggressive nature of his tumor, they were reluctant to discuss it. I think most oncologists are aware of the concept, but since they have nothing helpful to offer, they don’t want to worry their patients.

There is a test developed in Europe, called the Greek Test, which is available through some clinics in the U.S. The test identifies CTCs in the blood, and tests them to determine which of a number of low-dose chemotherapy agents will be effective against them. The test itself costs approximately $2,800 to $4,000 – not an impossible amount – but neither it, nor the various treatments, are FDA-approved. Thus, they are not covered by insurance.

Having utilized all the available conventional treatment options, Dempsey and I are now concentrating on affordable non-traditional treatments. There are numerous anecdotal accounts of people who have recovered from cancer using diet, non-conventional therapies such as IV Vitamin C and hyperbaric oxygen treatments, certain supplements, and increasingly, medical cannabis.

After reviewing all the promising protocols we could find, and using a combination of scientific data and our own intuition, we’ve designed a program Dempsey is now using. We are eating a very clean, mostly vegan diet. As mentioned above, cancer thrives on sugar, so we are avoiding all sugars, including simple carbohydrates like white flour, which is converted into sugar. He’s drinking lots of carrot and beet juice. This diet also reduces inflammation in the body, which is helpful in regaining and maintaining health.

He is also taking bitter apricot seeds. The seeds contain a compound known as laetrile (sometimes called vitamin B-17), which was a popular cancer treatment in the past. Current thinking is that it can be useful as an adjunct treatment in low doses (high doses can be dangerous, because the seeds contain arsenic). He takes 3 seeds a day, ground into powder and placed in capsules. Here is a reference to the pros and cons, along with some citations of relevant studies.

His daily supplement regimen includes one gram of beta-glucan, a powerful immune system support; a multi-vitamin; one gram of vitamin C; one gram of magnesium; a high-quality fish oil for omega-3s; and CoQ10 (always recommended if you take a statin drug).  He is taking Black Seed Oil, also known as oil of southwest Asia Nigella sativa.

Medical cannabis has long been known to reduce nausea and pain in cancer patients, but a number of studies have shown it also kills cancer cells. Here is one list of existing research.

Because we stayed for some months in Arizona and then in New Mexico (both among the 29 states, along with the District of Columbia, in which medical marijuana is legal), we have been able to incorporate cannabis into his treatment regimen.  The original protocol, desiged by a cancer patient named Rick Simpson, was 60 grams of THC-rich marijuana oil to be ingested over 90 days, but many experts now recommend much smaller doses.

The cannabis plant contains at least 113 separate cannabinoids, which behave differently and provide different benefits. We are working with a certified cannabis consultant (an oncology nurse based in Oregon) who put Dempsey on a 60-day daily regimen of 200 milligrams of CBD tincture, 100 milligrams of THCA, and 200 milligrams of high-THC oil diluted in a carrier oil to increase its bioavailability in the body. The doses are spread out over 4-hour intervals. He is tolerating this well, with minimal psychoactive effects.

Now that Dempsey’s feeding tube is gone, we can soak in the local mineral-rich hot springs, a centuries old source of healing.  There are also good massage therapists in town; lymphatic drainage massage is useful after radiation. As we have since the beginning, we recognize the importance of a healthy mindset and spiritual tools, prayer, meditation, and visualization.

I take a yoga class several times a week; Dempsey is not yet strong enough for that, but he may be in a few weeks. When we return to Austin, he will need more physical therapy to strengthen the right side of his body. The cancer surgery removed muscle in his neck and left him with some weakness and diminished range of motion.

All of this is our natural “extra insurance.” Our goal is to support Dempsey’s overall health and immune system, while eliminating any traces of malignant cells that may remain in his body.

Dempsey’s weight has stabilized at just over 200 pounds. That’s the least he has weighed in his adult life, but it’s not unhealthy. He may regain a bit once his sense of taste returns. The pain in his throat is almost gone.

He remains exhausted much of the time, which is generally expected for up to a year after radiation therapy.  He sleeps ten to twelve hours a day, a big improvement from the 20 hours he was sleeping just a couple of months ago. I do see him regaining some strength day by day. He takes very short walks down to the river. He hopes to return to work in mid-September.

We both feel an enormous sense of relief. In May he was so sick, I was scared I’d go into a room and find him gone.  He doesn’t even remember much of that period. Today the future looks promising.  At the beginning of this journey, Dempsey asked for 20 more years together. Now it seems a realistic hope that we may have that, or more.

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3 thoughts on “Our New Chapter

  1. So much vital information. Thank you for sharing this. One never knows when one might need it. You are fighting the big fight. I’m so impressed by you and Dempsey.

  2. Jillian, thank you for sharing all of this important information that you have so diligently documented while going through this very difficult time. Bravo to both of you.

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