Sunday, 20 January 2019

Current supplement protocol for prostate cancer

Local artist Russ
I should start by saying supplements support healing and can be an important part but (for me) they need to be part of a wider approach that includes for example nutrition, exercise and mindfulness - and possibly other treatments depending on circumstances.

This whole area of supplementation is a minefield and it is only recently I feel I am starting to get to grips with some of it. I’m very happy to have folk comment or question this as I’m still very much learning. There are so many issues to be aware of, not least;
  • lots of hard sell with many websites suggesting that a particular supplement is the answer,
  • lots of poor quality supplements which can be synthetic, deficient and not readily absorbed,(Update 1/03/20: fraud and supplements article here)
  • some supplements can be dangerous with some conditions, like iron (and possibly in some case oral Vitamin C) that may help cancer thrive,
  • some that affect other drugs,
  • some with considerable side-effects,
  • some that will be dangerous to some folks,
  • some ‘food state’ or supplements with good bioavailability that lead to increased absorption ,
  • lots of supplements that show promise in tests but haven’t yet been fully trialled

 

How on earth can we choose?


In this blog I have been asked to share which supplements I am taking. This is certainly not a recommendation for others to follow but could be a guide for folks to research more. For me, it has been interesting writing and reminding myself of why I am taking certain supplements - it is a very personal account with some of the research but by no means all.

As with much of cancer you can find very varying reports - go to sites like Cancer Research UK for a very conservative, cautious view about complimentary/alternative treatments and to other sites like the Life Extension Magazine or Canceractive for a more hopeful view about possible benefits. A huge part of the challenge is that it is very expensive and difficult to do trials; there are so many factors to take into account and clearly checking out supplements would not make financial sense to pharmaceuticals who want to find drugs that can make money.

The list changes regularly and is not a complete list of supplements I’ve used and I want to stress that I am not taking all of these at once. Indeed I just did a rough check and found that if I had been taking all these supplements below it would be costing me up to £200.00 per month! I have tried to keep expenses to £40.00 but this has gone up and down over the last eighteen months since diagnosis. The protocol has also been influenced strongly by advice from a naturopath, an Integrative Health Doctor and my own research.

I should also perhaps note that there is some evidence that it is useful to change the herbal supplements you are using as they can become less effective and cancer cells learn to adapt and get around any attack on them. This advice doesn’t include tonic herbs like ashwagandha nor is this about vitamin supplements which are filling a gap. Although my gut feeling is that if we are eating really well we should not have the need for much vitamin supplementation. See more here about taking a break or not from supplements: https://www.drweil.com/vitamins-supplements-herbs/supplements-remedies/taking-a-break-from-supplements/

I can see that in some cases it will be important to have tests to see whether we are absorbing nutrients - more about that from me another time - and I wont cover food in this blog post which of course is key in terms of getting nutrition right, nor will I look at CBD, probiotics or oils in this blog - those can also all be for another time. So here are the supplements I will talk about below:

Vitamin D
Boron
Curcumin
Milk Thistle
Echineacea
Boswellia
Ashwaganda
Selenium
Magnesium
Zinc
Green tea
Berberine
Chromium
Holy Basil
Iodine
Indole 3 Carbinol
Other supplements


The supplements



1. Vitamin D

Chris Woollams writes (i): “The number 1 supplement. If you cannot get a couple of hours in the sunshine every day, you should consider supplementation of 5000IUs, as recommended by Harvard medical School. This vitamin is actually a hormone and has been shown to activate the immune system, reduce the risk of cancer and even correct cancer cells in research studies.”

There is evidence in the medical literature to suggest low levels may be associated with getting certain cancers, including prostate. There is also one study of 44 men that showed vitamin D might have an impact on progression of prostate cancer; some benefit may be attained from vitamin D supplementation in men with prostate cancer, but a larger randomized, double-blind clinical trial would be required to confirm these results (ii).

I had a series of blood tests done recently and they showed I was very low in Vitamin D, so much so that it has been recommended I take 10,000IUs. I am aware that Magnesium is also important for D3 absorption. Magnesium deficiency shuts down the vitamin D synthesis and metabolism pathway (iii). Interestingly I was low in that as well. It is worth noting Vitamin D3 is probably much more effective than vitamin D2. Also Vitamin D is fat-soluble so many practitioners recommend that you buy it in an oil or spray for better absorption.

See also 45min film from 2015 showing the benefits of Vitamin D and prostate cancer: https://youtu.be/QrU1yrmNIqc

Update 26/04/19: Michael Gregor on latest research re Vit D supplementation here.
Update 3/06/19: Chris Woollams on Vitamin D: https://chriswoollamshealthwatch.com/blog/the-truth-about-vitamin-d-15-years-late/ 
Update 20/08/19: How to test for Vit D levels and improve intake: https://www.anhinternational.org/news/let-s-beat-the-vitamin-d-pandemic-before-it-beats-us/ 
Update 29/2/20: See response to Sunday Times attack on Vit D: https://www.anhinternational.org/news/sunday-times-late-winter-attack-on-high-dose-vitamin-d/ 
Update 16.5.22: Some herbs and supplements maybe estrogenic: https://anticancer360.com/do-you-have-hormone-sensitive-cancer-use-these-supplements-with-caution/

2. Boron

This one was recommended by my German doctors along with Green tea and Selenium. A number of studies have concluded that boron could have specific therapeutic potential in the treatment of prostate cancer and protect bones. Bone is the initial and main site for about 80% of all prostate cancer metastases so any extra support is most welcomed!

A useful paper on the Life Extension Magazine website concludes: “In addition to its potent support for healthy bones and joints, boron is emerging as a highly targeted inhibitor of prostate cancer cells and their metastases. It can kill these cancerous cells without harming healthy prostate cells. Scientists have demonstrated that boron lowers prostate-specific antigen, or PSA—and may help prevent or control the spread of prostate cancer. Other evidence links boron to reduced cognitive decline. Boron levels in foods are low, but supplementing with this trace mineral may be the little-known missing link for those seeking a mechanism of defense against prostate cancer, bone loss—as well as overall support for optimum health (iv)”.

I was originally taking 2x3mg per day, but now I have been recommended 3x3mg per day. I have heard two stories (and I so know we can’t take this for evidence) of men with prostate cancer significantly reducing their PSA after introducing boron. I’m keeping fingers crossed on that!


3. Curcumin

Curcumin is anti-inflammatory and has antibiotic properties - it is the polyphenol that gives the yellow color to turmeric and apparently makes up about 3% of the tumeric. Over 4,500 published studies describe the anti-cancer effects of curcumin. Basically researchers have found curcumin selectively starves tumor cells to death. Wow, wow, wow! Why on earth are doctors not telling us to take this stuff?

Life Extension Magazine website writes: “Curcumin has multiple actions against prostate cancer. It defends prostate cells against the dysfunctional proteins produced during cancer progression. It also slows invasion of nearby healthy tissue by the cancer, which helps to keep the tumor at a lower grade (meaning it grows more slowly and has a better prognosis) (vi)”.

It appears most research studies utilize a dose of 500-1000mg of curcumin per day. However I have recently seen recommendations for much higher doses like 3.2 gms. See also for example the Tumeric for Health website where they recommend 8 intensive weeks; building up to 8 gms per day in the first 4 weeks then continuing with 8gms for the next 4 weeks (vii). I’ve not tried this but have recently increased dosage to 2 gms per day.

It is worth noting to check curcumin supplements; they need to have piperine or other compounds to improve their bioavailability. If not, then you can take the capsules just after taking fats such as olive oil mixed with grounded black pepper.

Update 3/2/19: Reading Michael Greger's excellent book 'How Not To Die' I see there is a section on tumeric. In that, he argues that while curcumin is the active ingredient of tumeric, it maybe only an active ingredient. He quotes research that shows components otherthan curcumin contribute to anticancer activities and maybe even more effective. He argues everyone should be taking daily a quarter of a teaspoon of tumeric, powdered or root (well actually those with gallbladder problems and some others should avoid). In his words "Tumeric is potent stuff."

Update 15/04/19: The downside of curcumin supplements; this reinforces what Gregor says in his book about taking tumeric: https://nutritionfacts.org/2019/04/09/the-downside-of-curcumin-supplements/

Update 15/04/19: Great article on how curcumin targets stem cells:
https://www.canceractive.com/article/how-curcumin%20targets%20cancer%20stem%20cells%20while%20drugs%20make%20matters%20worse

4. Milk Thistle

This herb is good for your liver and has proven epigenetic properties and has been known for over 2,000 years as a liver protector. Research shows that silymarin, the active substance in milk thistle, works on cancer in 7 different ways (viii). Milk thistle has been shown in some studies to suppress the growth and runaway proliferation of human prostate cancer cells (ix).

I’ve used it on and off over the years when in need of a detox but have had a couple of stints with it again to hopefully help tackle the cancer.

5. Echineacea


Where poss I prefer to use local herbalists for tinctures

Cancer Research UK says ‘there is no evidence that echinacea can help with cancer’, however some studies in mice have indicated it might be helpful possibly with Melatonin (xi). Certainly there is no robust evidence to support re cancer. However I have used this herb many times to ward off colds and infections; whether this is placebo effect or not I consider, like many others, that it does have abilities to boost my immune system. My main use now is still for giving that extra boost to my immunes system when needed.

6. Boswellia

Frankincense is a sap derived from the tree Boswellia Sacra and has been sold in Oman for nearly 10,000 years. But it is the boswellic acid that contains the antitumoral ingredient; lab studies have shown it can separate the nucleus of a cancer cell from its surrounding cytoplasm. This basically stops the cancer cell reproducing and dividing but has no effect on a healthy cell. Some people have misunderstood the differences and take the frankincense oil instead - which may have some benefits but these are not tested yet (xii). Boswellia serrata is widely used in Ayurvedic medicine and readily available as a supplement.

7. Ashwaganda

Ashwagandha is another Ayurvedic medicine and has been found to balance or lower cortisol and lower inflammation in the body (xiii). I like this as cortisol is the stress hormone and there is no doubt that at times living with cancer is very stressful - let alone other stuff in life!

Research has also shown it can give rise to renewed energy in people possibly as it rebalances thyroid hormone - another reason for me to take it after the 6 months of hormones I took following my treatment in Germany. They certainly messed with lots of me so anything that can help balance, is most welcomed. It is likely also to be very beneficial after operations due to it’s anti-inflammatory properties.

Lastly it has been hypothesized that the flavonoids, alkaloids, and lactones in Ashwagandha could make it an anti-carcinogen. One study also has shown that Ashwagandha treatment “significantly inhibited cell proliferation in a dose-dependent manner.”

I take this in powder form - much cheaper but certainly an acquired taste! Update 20/4/19: see great article by Canceractive: https://www.canceractive.com/article/ashwagandha-reduces-cortisol-and-chronic-inflammation-in-the-body

Update 17/10/20: Just listened to Nasha Winters on the Your Life and Cancer conference and she says: "No on red clover, ashwaganda and maca and google ashwaganda and prostate cancer—a GREAT big no there…VERY associated with driving cancer cell proliferation in that population". This is another example of how we need to keep updating our knowledge - I've taken ashwaganda regularly and am sure it helped with cortisol but clearly I will be stopping now. Nasha added re reducing cortisol: "there are better ways to do this.  Other adaptogens, like Reishi, Tulsi, Eleuthro, Rhodiola, lowering sugar intake, meditation, etc."  I note the Memorial Sloan Kettering Cancer Center say "not to take if you have hormone-sensitive prostate cancer: Ashwagandha may increase testosterone levels". Yet others like Curejoy quote (a) research saying ashwaganda can act as "a chemopreventive agent relevant to prostate cancer progression." Other research on mice agrees (b). It does seem ashwaganda can raise testosterone but it also seems to downregulate oestrogen receptor. We also know the evidence around testostorone and prostate cancer is confused; some linking low testosterone with a higher risk of cancer. A 2016 meta analysis of research found no relationship between a man’s testosterone level and his risk of developing prostate cancer (c). So where does that leave us?

8. Selenium

Increased levels of blood selenium lower cancer risk. Chris Woollams at Canceractive writes: ‘Selenium is a trace element, nutritionally essential for humans. Selenium deficiency causes serious problems. It is a constituent of more than two dozen selenoproteins that play critical roles in reproduction, thyroid hormone metabolism, DNA synthesis, and protection from oxidative damage and infection (Sundee et al Modern nutrition in Health and Disease 11th Ed. Philadelphia PA Lippincott, Williams and Wilkins 2012:225-37). In an often mis-quoted meta-review by the Nordic Cochrane Institute in 2011, the conclusions were clear: "Epidemiological studies have suggested an inverse association between selenium status and the risk of colorectal, prostate, lung, bladder, skin, esophageal, and gastric cancer.’

It seems that selenium doesn’t just help prevent cancers, it also possesses the ability to fight them. A key cancer trial was undertaken by the Nutritional Prevention of Cancer Study Group using high-selenium brewers yeast tablet providing 200 mcg of selenium per day with 1312 patients. This study showed reductions in cancer mortality rates, with in terms of prostate cancer a whopping 63 per cent reduction in incidence.

The official Recommended Daily Dose is about 55 micrograms; but I am on 200 micrograms which is thought to be beneficial; above that there is concern. It’s worth noting that the inorganic forms of selenium are less bioavailable than organic forms; selenium yeast maybe an option for some if not concerned by yeast overgrowth.

9. Magnesium



I had thought magnesium was to help with hearts and our bones, but I have learnt it plays many roles, not least as an electrolyte helping to balance he body’s functions. It also helps with muscle strength; something I need to build up after having 6 months of hormone treatments that impact so negatively on muscles.

Low blood Magnesium levels and a high Calcium/Magnesium ratio have been shown to be significantly associated with high-grade prostate cancer. This suggests Magnesium affects prostate cancer risk perhaps through interacting with Calcium (x). I understand some 60% of Americans (and no doubt many Brits) are deficient in magnesium and epidemiologic studies suggest that magnesium intake may reduce the risk of certain cancers like colorectal and pancreatic cancer (xi).

I was very low in magnesium in recent blood tests despite lots of leafy veg, nuts and other stuff high in magnesium.  I am taking supplementation and also the occasional Epsom salt bath (more of that another time). Baths can be with 2 cups of epsom salts and apparently are a great way to increase intake of Magnesium as it absorbs well through the skin. There are also magnesium sprays which I have never got on so well with as they cause my skin to itch/sting.

10. Zinc

Prostate cells accumulate more zinc than do cells in any other human tissue and it has been shown that the presence of zinc in the body helps suppress tumor growth, especially in the prostate. There are also strong indications that zinc protects against prostate cancer. However it is hard to consider this aspect as blood levels of zinc may not accurately reflect the levels of zinc in prostate tissue.

One study showed that men who supplemented daily with over 15 mg of zinc had a 66% reduction in the risk of having advanced prostate cancer. Another study showed that higher dietary zinc intake was associated with a 36% reduction in the risk of dying from prostate cancer; the degree of protection was even stronger, a 76% risk reduction in men with localized/earlier tumors. Amazingly low-zinc geographic areas of the country often have higher-than-average rates of prostate cancer  (xii).

My own blood tests showed low zinc; this was again despite a diet of zinc rich foods. However bearing all this in mind I’m supplementing with zinc.

11. Green tea

When I had treatment in Germany, Green Tea was one of there supplements they recommended. Chris Woollams of Canceractive writes: ‘Green tea has a large number of research studies behind it supporting claims that it can prevent cancer. And increasingly there is a growing volume of research showing it can help fight cancer too. Studies show it can reduce the spread of cancer; and it also seems to have benefits specifically against leukaemia, prostate cancer, breast cancer and others….There is no doubt in my mind that green tea affords a real plus in the fight against cancer.’ (xiii).

There are over 1,000 studies relating to green tea and cancer. In two key trials on men with a high risk of prostate cancer, those taking green tea developed significantly less disease than those on the placebo (ix). There are all sorts of other benefits like such as the polyphenols, called catechins are known to be up to five times more potent as antioxidants than Vitamin E and can stop the uptake of glucose by fat cells. In other words play a small role in starving cancer. Indeed clinical trials show clear benefits, not just for prevention, but in terms of stopping growth and spread of cancer.

The suggestion is 5 or 6 cups per day would be great but the more the better! Even one cup a day was shown to reduce prostate cancer risk by 33 per cent. I drink green tea but am also taking a green tea supplement.

12. Berberine

This is a part of many medicinal herbs and seems quite extraordinary. I would strongly urge reading Chris Woollams’ article at Canceractive (xx) where he sets out the many benefits including how it is stronger than some antibiotics, increases immune response, is as powerful as the drugs metformin and glibenclamide, reduces blood sugar levels and inhibits cancer growth. It can also increase effectiveness of radiation therapy and chemo.

There are over 500 studies of berberine, a number look specifically at the benefits to prostate cancer (xxi). I only came across this supplement after reading Jane McLelland book ‘How to Starve Cancer’ last year and started taking it just before Christmas. It is important to note that because Berberine is as powerful as pharmaceutical drugs there are concerns about long-term usage causing metabolic changes; some suggest 8 weeks at a time. It can also lower blood pressure so again caution (particularly for me who has low blood pressure). I have also read (but only on one website) that it can, in low micro-doses possibly add to cancer (xxii). It is also worth mentioning as some brands, like the one I bought first, have missed guidelines that suggest taking it 15 minutes before food will maximise the impact re glucose levels. These are just some of the warnings; do your research!

Update 10/04/19: See Canceractive article: https://www.canceractive.com/article/Berberine-as-a-cancer-treatment 

Update 26/04/19: See article re warnings if you have lung cancer and another reason to really research everything! See here

Update 15/06/20: a couple more useful articles - one about lowering blood-glucose: https://www.nutriadvanced.co.uk/news/the-benefits-of-berberine-for-blood-glucose-lowering/ 
and more on how it supports microbiome: https://www.nutriadvanced.co.uk/news/berberine-a-hero-of-the-microbiome-and-beyond/


My supplement mandela!
13. Chromium

This one is controversial. It has been used, by many as a protection against Type 2 diabetes; nick-named the ‘sugar balance’ pill. Research (not with animals or people), a couple of years ago suggest it could over the long term be a cancer causing chemical (xxiii).  However others suggest that cancer has access to sugars because we don’t have the chromium necessary to bind it and help deliver it so the cancer cells can’t get it (xxiv). More research is needed to see if it can alter cancer risk.

I have taken this supplement in liquid form as in the early days of my no sugar diet I would get sugar cravings. I think it helped balance and I may well use it again, but I also try and maximise my dietary chromium; whole grains, nuts, broccoli, and green beans are all good.

14. Holy Basil

This was strongly recommended by Chris Woollams who writes on the Canceractive website: ‘Various studies have shown their epigenetic effects with cancers like lung, pancreatic, breast, prostate, oral and skin cancer. They have been shown to perform a variety of anti-cancer functions – for example, they increase antioxidant activity, alter gene expression, induce apoptosis, and inhibit angiogenesis and metastasis…..there is research that suggests Holy Basil could be a really effective agent in protecting healthy cells during chemo- and radiotherapy’ (xxv)

I’ve not started taking this yet but plan to make it part of my regime.

15. Iodine

Correct iodine levels are important and it is well documented that a shortage can lead to fatigue and poor thyroid function. Breast cancer, prostate cancer and colorectal cancer patients have clear and recorded benefits from the supplementation of iodine but there are also some risks if deficiency is not proved first (xxvi). Update 7/08/19: one of the folks that has written lots on iodine is Dr. David Brownstein, he argues it is key to our health: https://youtu.be/c8Y800-xEXU

Research has been shown that prostate cancer cells take up iodine easily and it can cause apoptosis.  There also seems to be a particularly large amount of stories online claiming iodine cures cancer but much less in the way of actual evidence. Chris Woollams from Canceractive says: ‘Iodine deficiency, thyroid performance and cancer -  there is something here, definitely. But quality research is often circumstantial, and mainly with animals and/or in vitro.’

One surprise in my recent tests was that I have a very low iodine level. There are very clear disagreements among scientists about what are correct levels. I have been advised and am now taking Lugol’s solution; this has the two types of iodine that the body uses and it was used with people around Chernobyl after the disaster. Of course this supplementation will need careful reviewing and the thyroid monitored. I could also look at the foods I’m eating; a wee sprinkle of kelp for example can be wonderful in soups.

Another factor is that many consider it important to take other nutrients like selenium and unrefined salt alongside the iodine. One doctor, Michael B. Schachter, says, “Iodine may be needed in individualized doses to improve thyroid function, immune function, and the optimal functioning of all the cells in the body; several associated nutrients need to be given including vitamin C, selenium, magnesium, unrefined salt, and sufficient water; these help to prevent strong detoxification reactions as a result of the release of bromine from the tissues when iodine is given in milligram quantities. These higher milligram doses rather than microgram doses help to enhance anti-cancer functions in most if not all cancers, but certainly in cancers of the thyroid, breast, ovary, and prostate.”

16. Indole 3 Carbinol


Indole 3 Carbinol (I3C) is found in cruciferous vegetables (cabbage family) but actually that is Indole 3 glucosinolate (I3G). I3G isn’t really so much anti-cancer but when you cut, chew or cook lightly, an enzyme is released and this changes the I3G into I3C - and there is lots re it’s anti-cancer properties - indeed over 120 peer-reviewed scientific studies.

I understand that I3C is pretty unstable and most of it converts in the intestine to its metabolites Diindolymethane (DIM) and indole carbazole (ICZ). Chris Woollams writes (xxvii): ‘I3C, DIM and ICZ are all absorbed into the bloodstream and any or all could be active, separately or in conjunction, in the real world….Most of the current research data is linked to the prevention and even treatment of hormonally-driven cancers, like prostate and breast cancer, but there is research with other cancers and the lowering of cardiovascular, diabetes and obesity risk.’

It has been shown to be so effective that some have dubbed it a ‘safer Tamoxifen’. So there is loads of evidence to support eating lots of cruciferous vegetables. Chris Woollams comments that we should ‘also take probiotics or your body will be unable to fully release the bioactive natural goodness, especially if you have been taking drugs, antibiotics or had recent surgery’. Update 17.05.19: Article re support for I3C: https://news.harvard.edu/gazette/story/2019/05/beth-israel-researchers-uncover-anti-cancer-drug-mechanism-in-broccoli/?fbclid=IwAR2Hw1OZBrbURI9RKxA1Znnk2O_7pLjXW-bszzHMK2kTzdFX2plAOejaf64


Well I’m doing well with kale, broccoli and all but am also currently supplementing with I3C. This is in part because I understand that IC3 has been helpful to lower estrogen levels - my levels are too high - no doubt a result of taking those hormones for 6 months. Interestingly as I write this I hear about a newer Chinese herb called Myomin that is apparently even more beneficial because it lowers estrogen further up the pathway.

17. Other supplements

Oh my the list is endless but others I’ve used or will consider include PomiT, Beta Glucan, Artemisinin, Melatonin, Colloidal Silver, Laetrile, Horsetail and Modified Citrus Pectin.

The charity Yes to Life have kindly posted this blog on their website here.

Notes

(i) https://www.canceractive.com/article/the-12-best-supplements-to-fight-cancer
(ii) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4747876/
(iii) https://www.chrisbeatcancer.com/vitamin-d-the-1-anti-cancer-vitamin/
(iv) https://www.lifeextension.com/Magazine/2015/11/Boron-Reduces-Prostate-Cancer-Risk/Page-01
(v) https://www.ncbi.nlm.nih.gov/pubmed/?term=curcumin+and+cancer
(vi) https://www.lifeextension.com/Magazine/2018/SS/Curcumin-Starves-Cancer-Cells-to-Death/Page-01
(vii) https://www.turmericforhealth.com/general-info/turmeric-curcumin-dosage-for-cancer-a-scientific-plan
And https://www.canceractive.com/article/curcumin-or-turmeric-as-a-natural-cancer-treatment
(viii) https://www.cancer.gov/about-cancer/treatment/cam/hp/milk-thistle-pdq
(ix) https://www.lifeextension.com/Magazine/2005/11/report_prostate/Page-01
(x) https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/complementary-alternative-therapies/individual-therapies/echinacea
(xi) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1193558/
(xii) https://tisserandinstitute.org/frankincense-oil-and-cancer-in-perspective/
(xiii) https://www.canceractive.com/article/ashwagandha-reduces-cortisol-and-chronic-inflammation-in-the-body Genomic Analysis Highlights the Role of the JAK-STAT Signaling in the Anti-proliferative Effects of Dietary Flavonoid—‘Ashwagandha’ in Prostate Cancer Cells https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2862933/
(xiv) https://www.canceractive.com/article/selenium-and-cancer
(x) https://www.ncbi.nlm.nih.gov/pubmed/21541018
(xi) https://www.cancertherapyadvisor.com/fact-sheets/magnesium-cancer-fact-sheet/article/683990/
(xii) https://www.lifeextension.com/Magazine/2015/5/New-Studies-Reveal-Importance-of-Zinc-In-Maintaining-Prostate-Health/Page-01
(xiii) https://www.canceractive.com/article/green-tea-chronic-illness-and-cancer
(ixx) https://www.cancer.gov/about-cancer/treatment/cam/patient/prostate-supplements-pdq#section/_175 And https://www.lifeextension.com/Magazine/2017/7/As-We-See-It/Page-01
(xx) https://www.canceractive.com/article/Berberine-as-a-cancer-treatment
(xxi) https://www.ncbi.nlm.nih.gov/pubmed/19704371
(xxii) https://www.mygenefood.com/micro-dosing-berberine-good-idea-bad-idea/
(xxiii) https://www.abc.net.au/news/2016-01-11/chromium-could-cause-cancer:-study/7081730
(xxiv) https://thetruthaboutcancer.com/video-six-super-foods-nutrient-deficiency/
(xxv) https://www.canceractive.com/article/holy-basil-ursolic-acid-and-cancer
(xxvi) https://www.canceractive.com/article/iodine-and-cancer and https://thetruthaboutcancer.com/low-iodine-cancer/
(xxvii) https://www.canceractive.com/article/Indole-3-Carbinol---the-safer,-natural-Tamoxifen
https://www.ncbi.nlm.nih.gov/pubmed/15570059
https://www.lifeextension.com/Magazine/2006/1/report_i3c/Page-01

(a)  https://www.curejoy.com/content/ashwagandha-for-cancer-treatment/

(b) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5288218/

(c) https://pubmed.ncbi.nlm.nih.gov/26779889/

Sunday, 6 January 2019

Stroud Wigwam launched!

Wigwam is a cancer support group with a difference. It is a community of people living with cancer coming together to explore and share information and experiences. It is about exploring orthodox, complimentary and alternative approaches, and about empowering ourselves and gaining more control over our lives.

Wigwams are supported by Yes to Life, the UK’s integrative cancer care charity - and it looks like Stroud is amongst one of the first places in the UK to establish a group. We’ve met a couple of times - but really we are just starting out - and there is room for more Wigwamers!

Some of our Wigwamers are happy to share some of their knowledge and skills about fermenting or infrared saunas. What ideas have you? Understanding nutrition? Ways to relax? A walk? Sharing a book?

Join us for a chat 2pm on the first Friday of the month. For details and more info contact Philip on 01453 755451 or Sharon on 07887 487050. Update 07/02/2020: we have changed the times wemeet but give me a call and I can let you know.

See also great downloadable description of Wigwams on yes to Life website: https://yestolife.org.uk/wigwam-the-restorative-learning-hub/

Saturday, 5 January 2019

Dangers of a single story

One of my favourite TEDx talks is by the Novelist Chimamanda Adichie, who beautifully shared how, if we only hear a single story about another person, community or country, we risk a critical misunderstanding (i). One example she gives is of Africa being seen as only about poverty, HIV/AIDS and wild animals. Even when we know there are many more perspectives, many of us welcome a single story rather than embrace and explore complex, muddy, grey areas.


We see this 'single story' occurring in many aspects of our lives and not least in the world of cancer. Since Richard Nixon declared ‘war on cancer’ in 1971 we have seen the language around cancer become consumed by the language of war; 'she is bravely battling her cancer’, ‘he lost his fight with cancer’, ‘one day we will beat cancer' and ’she conquered cancer’. The implications are that in order to ‘win’ the battle with cancer we have to fight hard enough, smart enough and for long enough. This is a nasty implication that suggests if we die, we didn’t fight enough - not that our scientific understanding, genetics or even finances and access to treatments can play a role.

Here's a quote from Senator Lister Hill, who said of cancer at the time: "We are at war with an insidious , relentless foe. (We) rightly demand clear decisive action - not endless committee meetings, interminable reviews and tird justifications of the status quo." And an advert from campaigners in 1969 said: "Why don't we try to conquer cancer by America's 200th birthday? What a holiday that would be!'

This military language is in our media, charities and everyday life - and indeed may help some, but it can also hide different ways of seeing this disease.

I am not sure I am a warrior! Like many I do what I think is right to heal - and make mistakes along the way. So much of it is unknowable. Will this treatment work? How fast is the cancer growing? What else should I do? I don’t see any of this as being brave. In contrast someone who risks their life for another is brave.

The military language and its expectations to fight can be more than hard to live with. It doesn’t feel like a fight to me. I live with it - and at times it seems to get the upper hand and I’m filled with fear - but at other times I am thriving on it. As I’ve noted before cancer has become a ‘guide’, alongside me, prodding me this way and that as I learn to prod it back. The people I am meeting, the learning about healing, my improved diet, the increased immediacy of life and more, are all part of that thriving.

I've mentioned before that I am grateful for the insights in Sophie Sabbage's inspiring book, ‘The Cancer Whisperer’, with the wonderful subtitle 'Finding Courage, Direction and the Unlikely Gifts of Cancer’.  She wrote about how she had cancer, but cancer did not have her; how cancer brings us an invitation to look within ourselves and decide who we are and how we wish to live. So rather than seeing cancer as the enemy we can see it as a teacher or a guide. 

Cancer has come out of my own cells; to fight it feels like going to war with myself. Cancer is in us - and rather than a war, it is a chance to work at putting things right. Sophie Sabbage asks: ‘What if cancer is the body’s last attempt to save its own life? What if its purpose is not to extinguish us but to heal?’ If this is so, and it feels intuitively right for me, then cancer can be a guide to our healing.

Kate Granger writing in The Guardian said in 2014 (ii): "As a cancer patient who will die in the relatively near future, I believe rather that instead of reaching for the traditional battle language, [life] is about living as well as possible, coping, acceptance, gentle positivity, setting short-term, achievable goals, and drawing on support from those closest to you".

So it seems to me, and indeed a growing number of others, that medicine, media and public should be careful in choosing their language, particularly around cancer. It is great to see that both Marie Curie and MacMillan are beginning to question this language, but we all need to go further. There are many ways of talking about cancer. As Adichie says when we reject the single story, when we realise that there is never a single story, 'we regain a kind of paradise’.

To finish here is a short draft film looking at narrative around cancer; my cousin and I had a fun evening throwing it together. How can we make it better? Update 20/04/20: just seen this research confirming battle metaphors are not so helpful: https://psyarxiv.com/a6bvd/


Update 14/05/21: Article looking at mood and impact on cancer: http://www.lgwalker.com/inaugural.htm

Notes:

(i) See: https://www.ted.com/talks/chimamanda_adichie_the_danger_of_a_single_story

(ii) See: https://www.theguardian.com/society/2014/apr/25/having-cancer-not-fight-or-battle

Sunday, 23 December 2018

Talking to the Cancer Journeyman

Nick Parker
A journeyman is a skilled worker who has successfully completed an official apprenticeship qualification in a building trade or craft; they are allowed to work as employees but not yet as a self-employed 'master craftsman'. 'The Cancer Journeyman’ is the title of a blog by Nick Parker and describes well the ‘journey’ many of us go on with cancer; the huge amount of knowledge we gain about our ‘craft’ of wellness. In my own current ‘research’ about my next steps, I was fortunate to have a long phone call with him.

Nick was clear that what had worked for him, with his terminal diagnosis, may not work for everyone; it is about finding your own way. He also talked about how he filled himself with hope, had lots of set backs but found ways forward, solutions that worked for him. I loved a line he said, when thinking about treatments, that he sought all avenues that were kindest to the body. Our bodies are at dis-ease with themselves, we can find a way to bring more balance and health.

A lot of what Nick writes about on his website is about how we can change our attitudes, beliefs and actions and 'live the best years of our life'. His website shares his journey and some of his treatment protocol including nutrition and exercise. One of his tentative questions to me was about why I had cancer. I have had a number of thoughts around that and have been working on a blog on that very topic for a while (ready soon). When I started to share my answers with Nick, it was when I got to talking about the impacts of stress and life purpose, that Nick warmed more. Indeed, like him, I consider that a key route to our health is through the mind. 

Nick shared some of his own work around redefining his life purpose, using visualisations and meditations - the latter he credited for having a significant impact on reducing his PSA. On his website he writes: "I am no different to anyone: my minds tells me constantly that it is tough; that I don't want to do it. My mind questions me as to whether I really want to sacrifice other short-term pleasures in order to devote time to my long-term health.  However, i have realised that there is no other way. My history tells me that I have been a lazy & shortsighted fool. There is nothing more important than my health. I have learnt that, how ever hard, I have to control my mind, or else be a victim of it."

All this is a powerful reminder to me about what I wrote in an earlier blog about how changing thoughts can change behaviours, which change your biochemistry. There is lots more to wellness than following NHS treatments - and lots of it is not so easy! In the ‘About this blog’ section, when I started this blog, I quoted Sophie Sabbage talking about how cancer brings us an invitation to look within ourselves and decide who we are and how we wish to live. This feels even more true now and I can start to see, like Nick, that this cancer journey can be a gift - and part of that gift for me has been to connect with inspirational people like Nick (click on tag below for more inspiring people).

See more about Nick at: https://thecancerjourneyman.co.uk/

Saturday, 22 December 2018

Next steps: conventional, complimentary or alternative?



Another NHS letter

Time for an update (see here for background info)….it’s been a busy year learning to live with cancer and my father being ill then dying. My PSA does seem to have responded to the transurethral hyperthermia, hormone treatment and significant lifestyle changes; it was originally 18.96 ng/ml and is now 5.5. However this, as my oncologist warned me two weeks ago, is still in the ‘red zone’ (and could lead to metastasis if it has not already done so). He made an ‘urgent’ referral to the surgeon for me to consider an operation. It seems, Glos NHS though is stretched, so already my 20th Dec appointment has been cancelled twice and is now on 14th January. 

It is strangely unnerving when one of those NHS letters arrive, not being quite sure what it contains. Certainly at the moment I am swinging from hope to despair and back again. I am weighing what course of action to take. It is so hard with such little info (or is that too much information?) and so many questions... 


Jo Lawrance cartoon

PSA is notoriously unreliable as a test; how much do I rely on this and my previous tests and scans from well over a year ago to make a decision?

Other tests/scans all have their challenges regarding what they can show about cancer; MRI for example has no ionising radiation but can’t tell if the growth is cancerous. What would be the best test/scan to gain a clearer picture?

 
What are the risks of metastasis?


Radical prostatectomy or radiation treatment are standard NHS treatments with what they say are the 'best outcomes’ for prostate cancer, but they often come with some dire side-effects and are not full proof in terms of tackling cancer. How can I try and reduce such side effects if I go down this route?


There are many other possible treatments, but many of these have less long term research regarding their outcomes; that goes for both the newer conventional treatments like proton beam and the complimentary ones. What choices are realistic?


Conventional, complimentary or alternative medicine?

One area I have been exploring is around the evidence for different approaches. There is a paucity of evidence regarding whether the use of complementary and alternative medicine (CAM) compared to conventional therapy has an adverse effect on cancer survival. However, many folk have strong views. For example David Gorski writing in the Science-Based Medicine website (2017) (i), known for it’s challenges to alternative approaches to medicine, concludes: "Use of alternative medicine alone to treat cancer is likely to be a death sentence, or at least to cause delays that make ultimate cancer treatment with conventional medicine more difficult and less likely to be successful”. 

However, it seems to me that little of use can be gleaned from a lot of this comparison research as the label ‘alternative medicine’ includes too many approaches to enable a study to come up with much that is meaningful. There are also different views about what constitutes complimentary and what is alternative - and for that matter there can also be wide differences between countries about what treatments are common. For example Mistletoe injections are rare in this country and not recognised by UK or US for cancer treatment yet they are common in Germany. Indeed The Ecologist reported in 2006 (ii) that: "More than 50 per cent of cancer patients in Germany are given 'mistletoe therapy' during their treatment and it is often considered a part of the oncologist's repertoire."

One recent study by Skyler et al (2017)(iii), concluded; 'we found that cancer patients who initially chose treatment with alternative medicine without conventional cancer treatment were more likely to die’. Scary for those choosing alternative treatments alone, but when you start unpicking this it is not so straightforward. For example they found no statistically significant association between alternative medicine use and survival for patients with prostate cancer.

It seems to me that different approaches have much to learn from each other. Certainly there is far too much nonsense and over-sell in some alternative medicine approaches. The number of wacky treatments available is huge and growing. It seems to me we need to be better able to assess ourselves whether they might be useful. There is a useful TED talk (iv) that looks at this - in particular explores confirmation bias - that is the tendency to only accept information that supports your personal beliefs. Such bias can lead us astray on social media, in politics and indeed in treatment choices and the way we look at our health. The talk offers three practical tools for finding evidence you can actually trust.

I don’t agree with the approach by Pinterest to websites discussing alternative treatments - they have just shut down accounts for Mercola.com, GreenMedInfo.com, the Truth About Cancer, Health Impact News, ChrisBeatCancer.com, and many more for “violating community guidelines” (v). Earlier this year Google were also found to be suppressing medical information and other content that the company deems unfit for readers (vi). This is surely limiting free speech and will just confirm views of anyone who thinks Big Pharma and others don’t want us to get well without buying their treatments? 


Quote from presentation by Grant Hatch
And what of the nonsense in conventional medicine like doctors who do not give advice about the importance of exercise, or dismiss healthier diets as 'not necessary' or 'useful’? Or ignore the impact the mind can have on the body? And why in the UK are treatments like high-intensity focused ultrasound (HIFU) for prostate cancer (that has been around mainland Europe for over fifteen years), only just seeing clinical trials in the UK? And conventional seems way too wedded to big Pharma and completely ignoring approaches like using curcumin (turmeric) - there is loads of research about its benefits to those of us with cancer.

Anyway I should conclude this blog….this is certainly not the end of this discussion...lots of food for thought as I plan my next steps on my journey to wellness. Seasonal greetings to all readers and here’s to a healthy 2019!

Update 17.05.19: Blog looking at research by Yale, 'The Danger of Complementary and Alternative Medicine':
https://pcnrv.blogspot.com/2018/07/the-danger-of-complementary-and.html

Notes:


Sunday, 16 December 2018

To biopsy or not?

Quick drawing made on a train; inspired pic on Prostate Cancer UK
When I had my biopsy last year there was little talk of any side-effects or possible impacts other than the standard list I consider below. Would I have the biopsy with what I know now? I’m not sure, but hey this is all so individual that we all have to come to our own conclusions for what is right at that time. I’m also aware that a little knowledge can be dangerous so treat carefully blog readers!

What is it?

Well a 'TRUS prostate biopsy' is basically 10-12 thin needles that are guided by ultrasound and used to take small samples of tissue from the prostate; these are then studied and give us a Gleason score. Some people - hopefully all now - will also have had a special type of magnetic resonance imaging (MRI) scan, before having a biopsy; this can help see if there is any cancer inside your prostate and also help with guiding the needles (although after news this month I would be wary of MRI’s using contrast dyes) (i). I have to say it is not so great to have a probe up the back passage and what feels like a gun being ‘fired’ 12 times into the prostate - but also not terrible! However, it is possibly better than the other type of biopsy, a template (transperineal) biopsy, where the needle goes through the skin between the testicles and the back passage?


What is Gleason?

The score is named after Donald Gleason, a pathologist at the Minneapolis Veterans Affairs Hospital, who developed it with colleagues in the 1960s. Our prostate cells are looked at under a microscope for the different patterns and speed that they are likely to grow. I think prostate cancer is the only cancer measured looking at the ‘architectural’ patterns. Anyhow these patterns are graded from 1 to 5 with only 3, 4 and 5 being cancer; the higher the grade, the more likely the cancer will spread beyond the prostate. The samples from the biopsy may vary so an overall score is calculated by taking the most common grade in all the samples and then the highest grade of what’s left. These two grades are then added together to give the Gleason score. In my case that was 3+4 totally 7; this is better than a 4+3. Yes a weird way of measuring that is not so clear to many of us! 


Why do it?

Well, a biopsy is the only way to find out for certain if you have prostate cancer. It may also be able to give some indication of how aggressive the cancer is and likely to spread; this can lead to earlier treatment and potentially stopping the cancer spread.


What are the possible problems with it?

1. Accuracy? The biopsy can only show whether there was cancer in the samples taken, so it’s possible that cancer might be missed. It is hard to assess from the research online how accurate biopsy results are today…certainly lots saying how inaccurate, but more recently by combining with MRI the results are improved very significantly.

Professor Emberton talking on the BBC’s Inside Health (ii) a year ago says of the 2015 PROMIS trial (iii) that it showed; "that our standard of care is really very poor so that our standard biopsy, which we’d been relying on for about 40 years, misses over half of all the clinically important cancers. So half the men who were told they were all clear were indeed harbouring clinically significant disease. MRI was about twice as good, it had a sensitivity so its ability to detect clinically significant disease is present in excess of 90%.  And so the majority of patients that had clinically significant disease were successfully detected”.

Local artist Russ cartoon
The MRI will also hopefully put an end to as many as 25% of biopsies and some over diagnosis of prostate cancer. This can only be good news as most of us have some negative reactions to a cancer diagnosis! In the book, with a rather scary title, “Invasion of the Prostate Snatchers: No More Unnecessary Biopsies, Radical Treatment or Loss of Sexual Potency“ by Dr Mark Scholz and Ralph Blum they note that during the first two weeks after diagnosis the risk of suicide goes up twenty-two fold and heart attacks are ten times more likely (iv).


2. Side effects? I guess if finding more out about your cancer saves your life, these are a minor consideration. However, it is worth noting them as some of us have not had such an easy time! See Prostate Cancer UK’s website for more on side effects and of course talk with your doctors about any/all of this as some symptoms require a quick trip to A&E (v):

Pain or discomfort - Some men will feel pain or discomfort in their back passage (rectum) for a few days or weeks afterwards. Each man is different and while some find the biopsy painful, others have only slight discomfort. My discomfort sadly went on for over three months including making it difficult to sit in the first couple of weeks.

Short-term bleeding - It’s normal to see a small amount of blood in your urine or bowel movements for about two weeks and in the semen for a couple of months. That probably looked more scary than it actually was! A small number of men (less than 1 in 100) may have more serious bleeding in their urine or from their back passage (rectum). 

Infection - Some men get an infection after their biopsy and antibiotics are given prescribed, I think to all, to try to prevent this. 

Acute urine retention - a guy I spoke to had this - it is not at all common but I understand the biopsy causes the prostate to swell making urination difficult.

Sexual problems - some guys have difficulties for example with erections for a couple of months after the biopsy.

3. Spreads cancer? Well, Dr Larry Bans, MD at the Cancer Treatment Centres of America unequivocally writes: “The risk of ’seeding’, or ’tracking’, or ’spreading’ cancer with prostate needle biopsies, if there is a risk at all, has to be exceedingly rare and low.”

There are various analysies supporting this view. For example in 2014 in a paper published by Volanis et al, they showed that the number of prostate biopsies conducted each year has continued to increase, yet there is no apparent proportionate increase in the rate of track seeding resulting from prostate biopsies. They also found that most of the described cases of seeding involve neuroendocrine tumors of the prostate, which are <1% of prostate tumors. This is reassuring to those of us with an adenocarcinoma. Seeding is said to occur more often in some other cancers like pancreatic cancers (vi).

However, while the majority of medics believe there is no or very little evidence for seeding, concerns still persist. The worry is that cancer cells are pulled along the track formed by the needle or worse, spill directly into the lymphatic system or bloodstream. This is more likely when the biopsy punctures the tumour a number of separate times in order to obtain adequate tissue for diagnostic purposes.

The BMJ in July 2018 published G. David Stainsby and Susan Bewley, who write (and I quote nearly in full as it covers some important ground) (vii): "Men should be warned about uncertain safety of multi-needle prostate biopsy. Godlee et al. stress that researchers must accept patients as full partners included in design, conduct and reporting of clinical research, along with presenting and disseminating results to participants and relevant communities. However, patient/research subjects must also take centre stage regarding safety. Population screening for prostate cancer with PSA has failed to improve men’s survival. Treatment outcomes remain disappointing, especially following radical surgery for ‘early intra-capsular disease’. Five recent studies report underestimation of tumour extent on histology of excised prostate glands: in a third of men malignant tissue was outside the capsule; in a quarter tumour tissue was incompletely removed in the unsuccessful operation. Nevertheless, urologists press on, using ever-increasing numbers of biopsy cores in men with only slight elevation of PSA, seemingly indifferent to the possibility of local extension and needle track spread. Thus, this potential adverse event has not been routinely sought. Suggestions that MRI scan post-positive biopsy might accurately assess the extent of malignant tissue before treatment decision-making have been disregarded. Men managed by 'watchful waiting or ‘active surveillance’ may receive repeat interval biopsies with additional risks of local tumour extension each time. Without adequate investigation of potential local effects of multi-needle prostate biopsy, there is uncertainty about harm. Not looking leads to ‘lack of evidence' which should not be accepted as ‘evidence of no harm’."

There is also evidence that inflammation can cause prostate cancer metastasis (viii). Certainly if my biopsy took over three months to feel comfortable I’m guessing there was inflammation a fair bit of that time?

It is also interesting that three different doctors in two Hospitals in Germany also warned against biopsies. My own German doctor said before I had the transurethral hyperthermia that it would be less successful due to me having a biopsy. This was a view shared by a number of doctors I heard speak at Trew Fields and an integrative doctor who I have just seen locally. 

It seems to me that there is enough doubt to conclude "Men should be warned that multi-needle prostate biopsy has the potential to cause extra-capsular tumour spread.” 
So where does that leave us? 

I don’t know! I’ve already written about how inaccurate the PSA test is and now here I am finding biopsies may not be so good? This is perhaps a blog for the future but one possible thought for now came after reading a paper from 2017 (ix) that puts forward the idea of measuring PSA and serum ferritin together. They write: "In conclusion, serum ferritin is significantly associated with prostate cancer and may serve as a non-invasive biomarker to complement the PSA test in the diagnosis and prognostic evaluation of prostate cancer.” Could this, even with a PSA that is not so accurate, help diagnose prostate cancer instead of the invasive biopsy? Update Dec 18: I suspect not great as I have now read that further tests re Serum ferritin have been inconclusive re diagnosis (x). :(

As always, thoughts welcomed.
 
Update 29/08/20: I've just heard about a movement called "Trexit"; a "complete and clean break" from transrectal prostate biopsy in favor of transperineal (TP) approaches for diagnosing or monitoring prostate cancer: https://www.medscape.com/viewarticle/912823

Notes:

(i)  See more: https://www.radiologybusiness.com/topics/care-delivery/gadolinium-actual-offender-or-unwitting-pretender and https://medshadow.org/features/mri-gadolinium-contrast-agent/
(ii) BBC’s excellent Inside Health from a year ago: https://www.bbc.co.uk/programmes/b086s7jr
(iii) See more re PROMIS trial: https://www.ncbi.nlm.nih.gov/pubmed/25749312   
(iv) See: 'Completed Suicides among newly diagnosed prostate cancer patients' (2008) by Inner Valdimarsdottir and 'Cardiovascular events among newly diagnosed prostate patients' (2008) by Fang Fang
(v) See: https://prostatecanceruk.org/prostate-information/prostate-tests/prostate-biopsy
(vi) See: https://sperlingprostatecenter.com/truth-biopsy-track-seeding/
(vii) https://www.bmj.com/content/362/bmj.k3193/rr-10 
(viii) March 19, 2007 in the journal Nature described the findings of University of California San Diego: https://www.ncbi.nlm.nih.gov/pubmed/17377533  

Reduce nightly visits to loo

One of the challenges of prostate problems plus taking hormones can be the many trips to urinate at night. Indeed it is accepted by many tha...