From Mark. (new poster)
Stage IIIB, 18 months NED.
Yes, in the absence of many treatment options, are there other things that we can do? Perhaps, with a critical eye and sorting out scientific opinion from Internet hype, it is possible to add a few things to our arsenal? At a basic level, nobody would disagree that keeping fit and eating well are beneficial to our health, and may have a positive effect on the immune system. We are talking here about reducing the risk of recurrence, not the fighting of active disease. If I get a recurrence 6 months post diagnosis maybe lifestyle changes don’t have time to do anything, but what if I am still going after 10 years (which is what we all want)? Can things like those I list below give me a few percentage points advantage. What do you think?
THINGS I HAVE DONE – AS FOLLOWS:
Vitamin D supplement. Tested for vitamin D levels. Mine were above average so no action required. Apparently a sub-set of melanoma sufferers have abnormally low vitamin D levels, and if your vitamin D is low, you can modify your diet or take supplements. For general good health, and remembering that for some patients melanoma may be somehow linked with very low vitamin D levels.
BCG vaccination. To boost immune system. This had some popularity in the past in melanoma treatment but remains controversial. I had a PPD skin test which was totally negative (I had no active reaction remaining from the BCG tuberculosis vaccination I had in my youth), indicating that I could benefit from the boost to my immune system that a new BCG vaccine would give. I had the dose split below each armpit and had red swelling at the sites for weeks, so my immune system certainly reacted. No guarantee that it did me any good, but it was cheap and as a bonus I am presumably re-immunised against TB.
Low-dose Aspirin. There are medical trails going on these days investigating long-term use of Aspirin in reducing cancer occurrence generally, and scientific papers suggesting pathways by which Aspirin might interact more specifically with melanoma. None of my doctors suggested this to me directly, but after I mentioned it they all said that low-dose Aspirin has many health benefits and taking it was all to the good (there can be some side effects and for general health low-dose Aspirin is not usually recommended until you pass 50, but I am 48 so nearly there). In the on-going UK “Add Aspirin” trial the three treatment groups are 300mg/day, 100mg/day and 0mg/day. I take 200mg/day, averaging the two trail doses.
Exercise. We all know that exercise keeps us healthy, and that keeping fit is part of fighting melanoma. I try to run every day before work and usually fit in 3 or 4 times a week. I work at a desk, so probably could do more on this front.
Diet. I changed this a lot after my diagnosis. My doctors did not suggest any dietary changes but did not discourage me. The usual list comes into play - of foods that may help to reduce the incidence of cancers, and also foods to avoid which may increase risk. But not listening too much to superfood crazes. As a bonus I should be fitter and less likely to get a stroke or heart-attack, and who-knows I could end up living longer. I bend the rules a bit to be practical and stay happy, but certainly avoiding the junk food, processed meats and refined carbohydrates that encourage inflammation. No red meat, occasional oily fish (like salmon) a good thing, a bit of chicken allowed. Very little dairy, bread, potatoes, rice. But quinoa and sweet potatoes are good. No refined sugar (no cake!). Plenty of vegetables, especially cruciferous stuff like broccoli, cauliflower and kale. Cooked breakfast is a one-pot of tomatoes, asparagus, shitake/oyster mushrooms, turmeric + black pepper, chilli, rosemary, ginger and garlic cooked in olive oil. Salad for lunch with everything in it, including (depending what I can get) greens (such as baby kale mix), broccoli, parsley, mint, basil, watercress, peppers (aka capsicum), celery, carrots, tomatoes, beetroot, garlic, avocado, blueberries, pomegranate, walnuts, tossed with flax oil and apple cider vinegar. Lots of green tea, occasional (not every day) small glass of red wine with food and black coffee. Brazil nuts. Almonds. Raspberries. Sage. Rehydrated seaweed mixed in to main meals.
Also I try to avoid too much citrus fruits (like orange juice) because they contain chemicals which increase skin sensitivity to sunlight and may increase the risk of getting new primary melanomas. Grapefruit and Mexican limes seem particularly high. One catch-22 is that I take my green tea with lemon because it is supposed to help take-up of the active ingredients (and it tastes better). Concentration of the sun sensitising chemicals in ordinary lemons seems not so high, so I am making the trade-off and risking it.
THINGS I HAVE NOT DONE – AS FOLLOWS:
Meditation, Yoga, etc. I have an open mind about this. I think it can really influence people’s mental and physical wellbeing in a positive way – contributing to good health and a strong immune system. Just I haven’t gone that way myself so far.
On the other hand, things which some people “On The Internet” are talking about but I found no scientific support for, and could probably even be harmful.
Melatonin supplement. I saw on message boards that some people with melanoma were self-medicating with melatonin because of its anti-oxidant (and purportedly anti-cancer) properties. Depending where you live melatonin can be sold over-the-counter as anti-jetlag medication. Melatonin is produced by the body when we sleep at night. Individuals with disrupted sleep patterns, like shift workers, have higher incidence of diseases, including cancers, so people work the logic backwards. Melatonin does seem to play an important role in long-term health, and there is some interesting research looking at its anti-cancer benefits, but I don't think it is something to play around with without medical supervision. The fact that melatonin is a hormone means there can be feedback in the body regulating it – so if you take supplementary melatonin, your body might compensate by producing less itself. The best way to make sure your body has the correct level of melatonin is to have sufficient nightly sleep in a dark room. This is the thing that I fail on most often - not giving myself enough sleep. I should add "A good night’s sleep" to the list of positive things.
Antioxidants & vitamin supplements. I was surprised that there isn’t really any clear scientific evidence showing that antioxidants are good for you, and there isn’t really a clear mechanism for how they would fight cancer in the body. Foods that CONTAIN antioxidants ARE good for your health (back to good diet – see above) but extracting antioxidants and taking them as supplements doesn’t seem to help. Searching for the latest / greatest anti-oxidant food is a bit pointless. Likewise eating fresh foods with vitamins in IS good for you, but taking vitamin pills doesn’t add anything.
Vitamin C. Some expansive claims are made for vitamin C but the more extreme seem unfounded. If there is some lesser underlying benefit in vitamin C, then my healthy diet (see above) should already be giving me a high natural intake. I don’t see good enough evidence to change diet further or supplement.
Alkaline diet. Nope.
Possible to find other diets and regimes, but all debunked as quackery, so I stop there before this post gets even longer. Thanks for reading to the end.