Therapies That Work

Last Thursday I had my first CT scan and first oncology appointment since the beginning of the summer, when I started my vacation from chemotherapy. Much to Dr. Holen's surprise and mine, the scan showed remarkably slow growth of tumors in the months since I stopped chemo. (Haven't had oxalyplatin since May, or anything at all since mid-June.) So rather than start the oxalyplatin again, which clearly worked but causes neuropathy, not to mention cold sensitivity, Dr. Holen suggested two possibilities--one, waiting until things change for the worse and then (presumably) going back on oxalyplatin, and two, investigating what clinical trials I may be able to enter. He described three or four new drugs that look very hopeful; of course, whether the trials are open, and whether I'd be eligible for them, are big questions. He seemed to think eligibility was not an impossibility--I'm skeptical, having already been washed out of a couple of trials because of too much prior radiation and/or chemo. Anyway, he's going to check on what's available and get back to me sometime soon. And in fact today I returned from the gym to find phone messages about getting a blood test that made me think maybe the process of figuring out my eligibility for a trial is alread in motion.

Dr. Holen seemed genuinely excited by the results of the scan and the possibility of finding some sort of scientific breakthrough for stomach cancer, and he admitted, "It's odd to say to someone "'your cancer is worse'" (because the tumors are bigger), and yet have the overall picture be good news.

Of course, maybe he was unduly influenced by the little (but very high-end) cupcake I gave him to celebrate two years of survival with metastasis, but I don't think so.

Anyway, all this meant no chemo on Thursday--a big surprise--so they just de-accessed my port and I went to an expensive shop and bought a leather wallet to celebrate, and to replace the wallet lifted Sleazebag Nimblefingers when I was in Chicago.

One of the things Dr. Holen said to me was, "Whatever it is you're doing--exercise, whatever--keep it up!" Which helped me decide to describe, in this blog post, some of the things that I am doing, as well as some of the things that I'm not.

I've often said, in recent months, that I think that the reason I'm still alive has a lot to do with the supplements I take, recommended by Dr. Lu Marchand, the integrative medicine doctor who comes into the oncology clinic to work with cancer patients. Obviously, the chemotherapy I was on all last fall, winter, and spring, has been vitally important. But when I first saw Dr. Marchand last fall, I was losing 5 pounds a month (I went from about 130 to just barely over 100 pounds between June and December 2007) due to diarrhea that I couldn't control. I was extremely weak: I had almost no muscle mass and needed to use those door-opening buttons designed for handicapped access to get into public buildings with heavy entrance doors. Obviously, this situation couldn't go on much longer, and also obviously, chemotherapy wasn't likely to help--in fact, the chemo was partly responsible for the diarrhea.

Dr. Marchand made a lot of recommendations, all based on (the admittedly limited amount of) scientific evidence on "alternative"--or rather, complementary--therapies. She suggested that I make myself smoothies using whey powder (for protein), yogurt, and flax seed oil, with a banana to improve the taste. I don't much like bananas, and I don't find this at all delectable, but I do force myself to eat a certain amount of this glop every day, and the extra protein, plus the strength training I've been doing, has definitely built some muscles.

I also take a lot of supplement pills: milk thistle, melatonin, vitamin D-3, Host Defense (a combination of powdered medicinal mushrooms) and a squirt of another combination of mushroom extracts, as well as a multi-vitamin and calcium (both of which I've taken for years). Most of these, I think, are intended to boost my immune system and help the chemo work against the cancer. To control the diarrhea, I take immodium and, with every meal and snack, pancrecarb, a formulation of pancreatic enzymes that help digestion. I'm still playing with dosages of these, and also with the timing of meals. It's hard enough, because of my surgically-reduced stomach, to get enough calories to sustain life; I hate it when--as often happens when I eat in the evening--the food departs my system before there's time for the nutrients to be absorbed!

Before she recommends any supplement, Dr. Marchand checks it against the chemo I'm taking to be sure there won't be adverse reactions. Very important--and a good reason why no one should just look at the list of supplements above and decide, "Oh, those would be good for me."

All this--thinking about food and digestive problems and having to eat glop and count out pills and make sure I've taken them (and I haven't even listed the various prescription drugs I take daily)--is very tedious. I hate it. But obviously, it has worked. I haven't been able to gain any weight, but I haven't lost any more, and I've definitely built muscle. (Just ask my massage therapist!) And something--my hyped-up immune system working with the chemo, maybe?--has slowed the spread of the cancer.

So there's definitely something to complementary therapies (including acupunture, regular exercise, maybe even massage and Feldenkrais). But--there's also a lot of potential for quackery. Every so often, a very well-meaning acquaintance or even a stranger will tell me about something I definitely should take to fight my cancer. I've had people who read my blog implore me to investigate supplements sold on web sites set up by friends of theirs. A stranger once sat down next to me in an airport waiting room and described an alternative medical clinic in Florida that I should investigate. And recently, a new friend--a tourist visiting Chicago from another country--spent a lot of time trying to convince me to take "Vitamin B-17," found in apricot pit kernels; she based her advocacy of this therapy on the testimony of one man who claimed to have cured himself of leukemia by eating apricot kernels, avoiding caffeine and alcohol, and I don't remember what else. My friend was thrilled to disover that in the U.S., apricot kernels are freely available for purchase in health food stores. In her country, she said, they're banned. Not too surprising. Here are a couple of quotes from the Wikipedia article on amygdalin, aka Vitamin B-17 or laetrile:

"Though it is sometimes sold as "Vitamin B17", it meets none of the criteria of a vitamin. Amygdalin/laetrile was claimed to be a vitamin by Ernst Krebs, Jr in the hope that if classified as a nutritional supplement it would escape the federal legislation regarding the marketing of drugs."

"A 2006 Cochrane review of the evidence concluded that there is no sound evidence that laetrile is an effective cancer treatment^[8] and that there is considerable doubt about its safety.^[8] It has not been approved for this use by the United States' Food and Drug Administration.^[5] The U.S. government's National Institutes of Health evaluated the evidence, including case reports and a clinical trial, and concluded that they showed little effect.^[9] A 1982 trial of 178 patients found that tumor size had increased in all patients. Minimal side effects were seen except in two patients who consumed bitter almonds and suffered from cyanide poisoning."

Cancer is no fun, chemotherapy is often even less fun, and I understand why many cancer patients and their family and friends look for alternatives. I consider myself extremely fortunate to have found a board-certified doctor who is a knowledgeable advocate for tested therapies that supplement and complement chemotherapy--indeed, to have easily available access to her in my oncology clinic. Many oncologists are still very wary of "alternative" therapies, which they seem unable to distinguish from evidence-based complementary therapies, and I have friends and family members with cancer whose university-associated clinics offer nothing by way of integrative medicine.

This is more than a pity. It's as much of a scandal as apricot kernels and other quack remedies.