23. Nutrition: Love your Body

As I continue to write my Blog about my fight with melanoma I realise I am slightly falling into dangerous territory. I don't want to move too much away from telling my story and start providing advice to others who have been sadly hit by the same awful disease as me. First of all because this was never what I set up to do, but also because there are plenty of informative sources out there already. And not least because I am not in any way qualified to provide medical advice to anyone. So when in this post I talk about dietary supplements and changes to diet, I am really talking about my choices, and foods which in my opinion should at least be considered by cancer patients. However one general piece of advice for fellow patients I do have, and after more than two years of pain and suffering and fighting melanoma I take the liberty of giving it: do not limit your resources to what your doctors say. Do your own research. Consider complementary treatments and have a valid reason to reject them. When they tell you that there are no more options for you, do not believe them. Believe in yourself.

I mentioned sources of information on cancer treatments. This is how I would loosely list them (the list is not exhaustive) according to the decreasing order of trustworthiness I personally attach to them:

1. Outcome of medical trials;
2. Scientific publications in peer-reviewed credited journals;
3. What your body tells you (how you feel);
4. What your instinct tells you (when making decisions);
5. What your oncologist tells you;
6. What other doctors tell you;
7. Information on credited websites;
8. Other patients' experiences;
9. Patients Blogs (such as this one!)

When it comes to nutrition, what I feel very strongly about is that everyone should do what they feel most comfortable doing. And one certainly needs to be aware of quackery and false promises, which can easily be found on the Internet. Certainly to be avoided are any products that claim to be “miracle cures” or are based on a “secret ingredient” or method. Such claims are likely to be fraudulent, and the product may be harmful.

Do your research and complement or change your diet as you feel is appropriate to you. As a cancer patient I find it hard to understand why other patients would dismiss any complementary foods. My survival instinct tells me to try remedies that with little effort may help me, where there is no downside (other than the effort to ensure that you consume certain foods).

When doing my research, I always focus on studies published in peer-reviewed medical journals or other credited published sources. The findings of these studies are often sadly ignored by oncologists as they have been conducted in vitro or on animals, or on small populations of patients, they are however credited pieces of work.

As for myself, items that I have added to my diet (not necessarily all at the same time) are:

• Food supplements: vitamin C, D (very important for mm patients who are unlikely to spend enough time in the sun), zinc, omega 3 oil and multivitamin;
• Apricot kernels;
• Flax seed oil;
• Green tea;
• Curcuma;
• Dietary sulphur: Methyl Sulphonyl Methane (MSM);
• Bicarbonate of Soda;
• Probiotics;
• Milk thistle;
• My daily smoothie: 250g carrots, 40g ginger, a piece of fruit, chamomile and calendula flowers, the juice of 1 lemon, 1 teaspoon of honey and 1 spoon of flax seed oil (NB you need to get used to the taste!!).

Ginger, curcuma, chamomile flowers, calendula flowers, milk thistle and omega 3 (NB not omega 6!!) are wonderful natural anti-inflammatory foods. Cancer relies on inflammatory mechanisms to recruit blood vessels (angiogenesis), which are required to feed tumours, so without inflammation cancer is in trouble! I would stock up on anti-inflammatory foods. I also eat several portions of fruits and vegetables every day. By the same token, I believe it is a good idea to stay away from foods which are pro-inflammatory for the body, such as too much red meat, and processed foods in general.

Probiotics are fundamental to keep a healthy and strong immune system, and there are recent studies that show their synergies with immunotherapies (including drugs such as ipilimumab and pembrolizumab). (www.ascopost.com/issues/december-10-2015/gut-bacteria-may-facilitate-efficacy-of-anti-pd-l1-agents).

MSM has been shown to revert malignancy in melanoma cells, in vitro and on mice models (http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0011788). It has extremely low toxicity (similar to water) and low probabilities of mild side effects. Of course the chances of having a medical trial on an inexpensive product are close to none, as what pharmaceutical company would fund such trial?

It really upsets me that the oncologists who are administering the hugely expensive and potentially deadly immunotherapies, would not even talk to their patients about nutrients such as MSM and probiotics which are inexpensive and safe to take. Again I am not saying that MSM or Probiotics would save the patient's life without the use of the expensive drugs, however according to recent research there is a good probability that they can make a difference to the efficacy of the standard treatment, so why not take them?! 

One thing which is fundamental for natural treatments to work is the constancy of use. You must consume the product daily (or several times a day) with dedication. An occasional or discontinued use of any natural food is unlikely to provide any real benefits. Natural foods are not chemicals or medicines, they are not concentrated, so they can only have a material impact if you feed your body continuously with substantial amounts of that substance, so that it has time to build up and start to work.

22. Looking outside the Box where your Oncologist Has Put You

Having cancer is like being at war. It is a constant relentless fight against the enemy. And I have learnt pretty soon that as much as I may have access to the best medical care currently available for melanoma (and unfortunately not every patient does), no one cares about my life as much as I do. I am the one who has the most interest in my own long-term survival, and I will not stop where others tell me to stop.

1. I will not stop at what conventional/mainstream medicine says. How can I accept that nutrition and lifestyle have zero impact on survival (this is what most oncologists will tell you)? How can I deny the potential benefits of homeopathy? Especially bearing in mind that conventional medicine too can only offer you ‘potential’ benefits, based on probabilities of success. If there was a cure then everyone would be happy, but as there is not, why should one not try other remedies? 
2. I will not stop at what the (current) protocol for melanoma says. Everyone’s cancer is different, just like we are all genetically different, hence I will not accept that there are limitations imposed by standard protocols to the ways I can fight my cancer. A couple of weeks ago I have been pretty much told that I have run out of treatment options; well, I am not going to sit down and cry, I am actually going to disagree and say that I do not believe that. 

It is my life at stake. This is my war.

1. Beyond Conventional Medicine

I firmly believe that conventional (also called western or mainstream) medicine does not provide the whole answer to cancer treatment. There are so many other types of approaches that may be considered, depending on the circumstances, including:

• Nutrition ('love your body');
• Aromatherapy, reflexology, acupuncture ('love your mind');
• From Meditation to Yoga, from Reiki to Shamanism ('love your soul');
• Homeopathic medicine;
• Anthroposophic medicine.

Some of the above practices do not find wide support and have been harshly criticized by mainstream medicine. However, some people found huge benefits from them. Thankfully at the end of the day, whether or not to try any specific treatment is left to individual’s believes and choices. However when we talk about nutrition, I think there is less controversy; in fact I really do not see any valid reasons for someone affected by cancer not to change their dietary habits and introduce well known anti-cancer foods. This can be done with little effort and no downside, only potential upside.

In the next posts I will write about the many changes I have introduced to my diet and the complementary therapies I have tried and I am trying. I have to warn you, there is very little I would say no to! In the end I am fighting for my life. I will try everything given that conventional medicine alone cannot cure me.

I want to clarify, as I have already stated elsewhere in this blog, that I am not talking here about anything ‘alternative’ to mainstream medicine, which of course is fundamental. But I am talking about so many things that can be done IN ADDITION TO conventional treatments. Such COMPLEMENTARY treatments, as long as they do not interfere with your conventional treatment, are things that I find only obvious and rational to want to try. A benefit that cannot be exactly quantified due to lack of sufficient scientific testing (this being the argument of most oncologists against complementary treatments) does not mean no benefit.

Of course we should also be aware of quackery, which unfortunately fills up the internet. Quackery is the promotion of methods that claim to prevent, diagnose, or cure cancers that are either already known to be false, or that are unproven and most likely false. There are a lot of these around and unfortunately there is no miracle cure for cancer, as some of them may claim. Again everyone can use their common sense, do their research and make their choices.

2. Beyond Current Protocols

Over the past few months, I have talked a lot to fellow melanoma patients on social networks and sadly I have had to say goodbye to some of them. And some of the stories I have witnessed have horrified me. Basically, generally speaking (and there are of course exceptions to this rule and a minority of doctors who will fight until the end for and with their patients), if you have not responded to the drugs protocol, they stop any further treatments and only provide palliative care. They tell you how long they think you have to live, usually weeks, and then it’s just a waiting game. How can this be the right thing? There are often more treatment options that could be tried. Yet they are not tried as they are not part of the protocol, which really 'only' means that no expensive medical trials have been carried out and therefore there is no sufficient statistical data to tell how likely anything is to help (for that particular type of cancer). Not ideal of course, but the question is, do you care at that stage? Of course you will try anything. Not to mention that even after treatments are established and become part of the protocol, they may or may not work and carry the risk of serious side effects. Things that are not part of the current mm protocol but I believe should be considered include:

• A ‘re-challenge’ of immunotherapy drugs. This is usually not done due to lack of trials, which will never be a valid reason to me. If someone is dying a doctor should try anything to try and prolong the patient’s life.
• Innovative/experimental treatments which the NHS will not fund, hence these are only available to the insured patients or the rich ones. How can this be right? I am referring in particular to the very promising Tumours Infiltrating Lymphocytes (TILs) treatment. This is an amazing option and should be ideally available to all mm patients who have failed current protocols (where possible), but it is only available privately and costs approximately £70,000. Hopefully one day in the not distant future this will be funded by the NHS. Everyone deserves the chance to live.
• Further complementary medical treatments which could be used alongside standard protocols. Very promising for mm patients is CT guided tumour ablation, already successfully used for other types of cancer. In summer last year, I went for a consultation with a top London professor and he was adamant he could treat with this technique my bone metastases, which are very painful and the main source of my active mm at the moment. This would have not impacted the rest of my treatment plan, in fact it has synergisms with immunotherapy drugs. I remember leaving the consultation feeling finally happier and with some good news after months of bad news. When I spoke to my oncologist about it however my hopes were broken. He told me I could not receive this treatment, in his opinion, because it is not the current standard treatment for mm. He said it could ‘harm’ me, but was not able to define harm any more clearly. He also told me he would not treat me any more as his patient if I pursued this opportunity. This left me heartbroken. In any case I had to accept this blackmail, for the time being, as I could not risk delays in my ongoing immunotherapy treatment.
• Psycho-neuro-endocrino-immunology. This is I believe a very interesting area of work which demonstrates how our mind and emotions can have a significant impact on the endocrine system, which in turns activates and strengthens the immune system against the disease. I am eternally grateful to my amazing friend Francesca for introducing me to this concept. She is the most open-minded doctor ever. I have become a strong believer of this theory (I will spare you from having to read its name again!) and this is now one of my strongest weapons in my fight against cancer. 

I hope I have not bored you too much with this rather serious post. I really wanted to make the point that melanoma is such a complex disease that it needs to be fought at several levels and there are many complementary treatments out there to help. On the other hand, I also wanted to say that we should constantly challenge the current protocol and make sure that the treatment the patient receives is really tailored to the way the disease is behaving in their particular case.