24. Another year of war against the same enemy

I last wrote and published something in this Blog a long time ago, almost one year. Unfortunately during the last twelve months my life has continued to be a relentless fight against the same enemy, call it cancer, call it malignant melanoma in my case. Same difference. There are tents of different types of cancer and melanoma is one of them. Make no mistake, whilst melanoma is a cancer of the skin, it is only so because of the cells from which it originates, the melanocytes. Melanoma is extremely aggressive and can spread and metastasise internally to your organs, as it did with me. And again make no mistake and drop any residual judgement, anyone can get melanoma, even someone who never burnt in the sun or sunbathed, just like someone who never smoked can get lung cancer.

I certainly had a fair share of summer holidays and sunbathing and I am almost certain I burnt as a child more than once during the long, hot, sun-drenched Mediterranean summers in southern Italy which formed such a big part of my childhood and youth. However never once in my life did I use a sun-bed, and especially in more recent last years, certainly since my twenties, I had become a heavy user of sun creams with high SPF (replacing for good the factor-zero tanning coconut oil of my silly teenage years!). I certainly have no remorse for fully enjoying the sun in the past and in any case by moving to London aged 23 I certainly reduced my overall yearly sun exposure. Also, it has to be said that 20 or 30 years ago there was nowhere near the information and knowledge that everyone is nowadays given about the link between sun exposure and skin cancer. It's impossible in any case to know whether excessive sun exposure caused my melanoma. I developed malignant melanoma when I was 37. I know people now in their fifties and sixties who sunbathed (and burned) heavily all their lives, used sun beds in winter to top-up their tans (horror to my ears), and they now look leather brown - and some of them pretty ragged to be honest with you (whist I have to say that at 40 I am still wrinkle-free) - but they didn't develop skin cancer. And God willing they never will. It really is like everything else: a genetic as well as a good or bad luck lottery. That is not to mean we can afford to be irresponsible. Sunbathing even a little and even with SPF50 on will increase your chances of developing skin cancer, and believe me, it's not worth it. It is your life we are taking about. [please refer to Post number 3 for information on how to be safe in the sun].

When my battle with melanoma began I was keen on sharing my story with others, for the reasons I explained at the beginning of this blog. I took on writing the events that took place, as well as some of my thoughts and emotions, from December 2013 to the beginning of 2016. Two years which I was sure would remain as the toughest of my life. I was wrong: the hardest time was still to come. During the last year I continued to undergo more and more specialised and advanced treatments in the hope to control the disease. In the hope that the vast advances in research and treatment of the last years (which have been amazing, bringing new hope to melanoma patients) would bring, if not a cure, something that could control my disease in the long term. I was determined to learn to live with melanoma as a chronic condition rather than a terminal disease. I only had to hold on long enough till the next treatment came along. However, at the moment, it looks like my cancer is growing faster than science. Too bad. 

It has been a year full of struggle, of short lived spans of relief and hope, always to be promptly destroyed by the following scan results, providing always the same message dressed in different words: the melanoma is growing in spite of treatment. In March 2016, I underwent the most state-of-the-art treatment for melanoma, something called Tumours Infiltrating Lynphocytes or simply TILs. TILS is a very exciting treatment that involves removing some of a patient’s own immune-system cells, growing them in the laboratory, and then infusing the cultured cells (t-cells) back into the patient. The idea is to provide an invading force of immune cells that can attack tumours in a way that the immune system was incapable of doing on its own. 

This is however a very heavy treatment which entails at least two weeks in hospital where you are treated with an extremely punishing and dangerous regime of chemotherapy and other drugs in order to first deplete completely the body of the current immune system, and then 'reprogramme' the immune system to recognise and fight the tumours. High doses of interleukin-2 are used along with the infusion of t-cells, as IL-2 helps regulate the activity of the immune system. The effects of each dose are monitored closely as this drugs makes you very very ill. And the worst thing I found (as it does sound a little cruel!) is that they try to make you better in between doses only so you are well enough to manage another IL-2 dose, which will make you a lot more ill each time. I don't know how I managed nine doses. I ended up gaining 12 kg in body fluids, which invaded my lungs preventing me from breathing, and consequently I almost died, but at least they stopped the IL-2 after that! 

The choice of whether or not to go ahead with TILs was not an easy one at first as (besides accepting to subject yourself to the punishing regime mentioned above) the treatment is still experimental with considerable side effects (possibly lethal, as they have sadly been for two people I knew) and uncertain chances of 'success' (one out of three at best). Where success is measured as the control of the disease over a given period of time (say a year). I decided to go for TILs as, with a growing disease, the alternative of doing nothing was not an option for me. 

On the whole, I am happy to have gone through TILs and I would recommend it to other patients (in fact it should be done a lot sooner than it is usually the case, it should almost be 'first line' rather than 'last resort'. Big subject to be debated!). It is, after all, the treatment that most helped me amongst all the immunotherapy I have done. It gave me three months (April-June 2016) in which my bone tumours were shrinking considerably and I was consequently feeling a lot better. Shame that it didn't last longer as I had really hoped. By the end of summer 2016 the cancer was growing again. I also have to say that I have been 'lucky' (if I could ever possibly even use that word) with side effects of TILs as with most treatments I underwent. My body somehow has managed extremely well to go through very punishing drugs almost unharmed; it's only the cancer that my body is being defeated by.

From August 2016 till the end of the year I started back on immunotherapy treatments in the hope that they would help and support the newly deployed lymphocytes in their fight against melanoma. They didn't. All subsequent scan results were disheartening, until the final blow last week (January 2017).

I thought I had gone through the most emotionally painful time for me when (in November 2014) I was told the cancer was in my liver and bones: I had progressed to stage 4. I thought that after going through the grieving time following that news I was prepared for the rest. And I think I dealt quite well in the following 2 years, trying to keep positive in spite of constantly being ill and fatigued, under treatment, in hospital, having surgery, and by now a wheel chair user due to the extensive damage done by melanoma to my hip joint. I was surely ready to take on and deal with anything else. Well, almost anything. 

Then one day they tell you that now you have a brain tumour too. Now this is the one thing I was not ready to manage. when I was told I felt burning all inside my throat first and then my whole insides were on fire and shaking, and all I could do was to collapse to an almost foetal position, as if to almost wanting to start life again from there, or possibly end in the same way as my life had started. I cried to the oncologist to go away from me. The comforting arms of my other half, as crucified as me by those words, and of the palliative care specialist called to join before the news was delivered to me, supported me. 

After this devastating news, for the first time in my cancer fight I was faced with the potential decision of when to stop fighting this monster. When the pain inflicted and the impact on your quality of life become so unmanageable that it is more humane to ask doctors to stop giving you drugs that only make you more sick (and are not destroying the monster anyway), and only try to make you as well as possible so that you can enjoy as much quality of life as possible with your loved ones for as long as you have left, be it weeks or months. 

As it happens I have been offered more treatment, which once more I have decided to face in order to have a chance to control the progression of the disease: stereotactic radiotherapy to the brain, which is delivered through a very sophisticated robotic machine called cyber knife. This should take care of my brain tumour. Then I can possibly move to chemotherapy to deal with the rest of the disease elsewhere in my body (mainly bones and lymphnodes). Sounds scary and it sure is, but it's once again the only way forward so I'll take it. As far as I am concerned the fight is still on. I have not given up yet as I still have life and strength in me.