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.