19. Cancer Treatments: Fighting the Enemy

1. "A Full Time Job" 

Having cancer is like having a job. I am not quite sure who it was who said it and where I read it, but I sure know it is true. Today it was 5pm when I was done with all cancer-related tasks and chores for the day. Taking into account the fatigue that most cancer patients suffer from, and hence the extra time we need to allow for resting during the day, there is very little time left. Here is where my day has gone today: this morning I left my apartment at 10am to go to my counselling session (something I started after my cancer diagnosis). All transport by taxi unfortunately as my mobility and strength are both limited theses days. Arranging and waiting for taxis and being stuck in traffic are not things I enjoy, believe it or not I so miss public transport and the tube! When I came back home I had to deal with some admin in relation to 'home support’, a benefit under my health insurance policy. Basically there is a company which provides support at home to people with diseases or disabilities who cannot provide for themselves for their daily personal or household necessities. I am making limited used of this service as I am lucky enough to have masses of help around me already from my loved ones, however I am using them when I need. I have learnt not to say no to help when it is on offer. They had sent me an agreement form with some wrong information which I had to amend and send back. That sorted, I had some lunch (courtesy of my mum, as my parents are currently staying with me and looking after me). Then by the time I finished lunch (and my body was already begging for a nap) I received a home visit from Rosy.

Rosy is my wonderful MacMillan nurse. We usually schedule a meeting every four weeks or so or as needed.  This is an invaluable NHS resource, she looks after me in all kinds of practical ways, from sorting out my prescriptions so I can just pick up the medicines at the local pharmacy to providing invaluable advice on how to improve my well-being. Rosy is always cheerful and kind and a nice presence in my life. She also loves cats so we must always be careful not to be sidetracked and end up having cat conversations and support each other in the crazy idea of adopting another one (we are both tempted!). Rosy’s visit lasted about one hour today and we talked a lot about mental health and complementary therapies.

As soon as Rosy left I received a call from my hospital to say that my MRI and CT scans had been brought forward (following the Doctor’s request) from next week to this week. However in my last conversation with my support nurse I had gathered that we were not moving the scans after all, so I had to say to hold on and that I wanted to double check with my nurse. I called her, she confirmed it was good to bring the scans to this week, so I called the imaging department back to confirm the new scan times. I noted the new times down. By the time these back-and-forth phone calls were over I was pretty much ready to collapse in bed, and so I did and slept until 730pm.

So please don’t think I am exaggerating if I say that I haven't had a lot of time to keep writing the Blog. To be totally honest since the last post, I have also spent a fair amount of time playing Ruzzle (in Italian, Spanish and English, just to keep my brain working!), spent several hours in the company of one of my best friends, Mr Nextflix, been engaged in endless whatsapp conversations, and published the odd photo on Instagram. But these are all things I have to do to keep my mind a little off the topic of cancer. If I were writing my Blog during most of the time free from medical appointments and admin, then my life would be 100% focused on my disease, and I need to avoid that. However here I am continuing my writing.

2. How melanoma can be treated

In this post I want to talk about the cancer treatments I have received from December 2014 to the current time of August 2015. This way I will also finally bring my story to the present time, then I’ll be able to keep writing on specific topics and continue the story as it evolves. Cancer treatment is heavy stuff. It’s a lifeline for a cancer patient, but it can also make you sick. It makes you sick in so many ways that it sometimes becomes difficult to know whether some of the symptoms are attributable to the cancer itself or the treatment. For me this is in fact one of the upsetting aspects of dealing with this horrendous disease and its consequences: the fact that I can no longer understand what’s going on with my body, after everything it has gone through. 

There are several ways in which melanoma (and other types of cancer) can be treated. These include surgery, radiotherapy, chemotherapy, biological therapies (including targeted therapies and immunotherapy), bisphosphonates, bone marrow and stem cell transplants and tumour infiltrating lymphocytes (TILs). There is then then huge world of complementary (or alternative) therapies, on which several books have been written and on which there is huge ongoing scientific research. Some people are against complementary therapies as they feel that (not having been tested enough) they could cause more damage than benefits. Most cancer patients however will resolve to some form of complementary therapies as we are human and we will try everything which can give us a hope to live, it’s our survival instinct. Unfortunately there is no cure for advanced melanoma, so it is only natural that I should have looked into complementary therapies. I started researching complementary therapies when I realised (pretty early in my journey) that oncologists tell you nothing about it; they will generally give you no advice whatsoever on nutrition or lifestyle. This is because they will state that there is not ENOUGH evidence that A, B or C provide any benefits. However, I certainly will try something that can give me potential benefits, as long as it does not interfere with the oncology treatment plan I have in place. Note that I am purposely using the word ‘complementary’ rather than ‘alternative' therapies as my opinion is that such treatments should complement and be used in addition to conventional-medicine treatments (as long as they don't interfere with them) and not replace conventional medicine. However every opinion should be respected. There are few cancer patients who refuse conventional medicine treatments, e.g. chemotherapy, and decide to only try and heal their bodies with alternative (in this case) therapies, such as cannabis oil, hyperthermia or very high doses of vitamin C. I will separately talk about complementary therapies as the topic certainly merits undivided attention, but I now want to talk about the treatments I have personally been through: surgery, radiotherapy and immunotherapy.

3. Treatment plan: the patient's lifeline 

Having a treatment plan in place is fundamental to any cancer patient, it represents his or her hope of living. Some of the worst days I can recall in my cancer journey are the days after my stage 4 diagnosis and before my treatment plan was in place. There was about a two weeks's wait as I needed to see my oncologist, I had to have all the required scans done, the multidisciplinary team had to review my case (including a spinal neurosurgeon due to the location of some bone metastases, and a radiotherapist) .  Two weeks is probably as efficiently as it could have been but those days seemed like an eternity, and the toughest to live through. Before starting the treatment plan, you know you have a vicious enemy attacking you but you are being passive and letting them destroy your body. Having a treatment plans means that it has been decided what the best strategy to fight back is. December 2014. My initial plan involved radiotherapy for my back and my neck and immunotherapy. Radiotherapy can be very effective especially for bone cancer. However it can only treat localised tumours, so the key weapon for me was the immunotherapy or SYSTEMIC treatment, which was going to attack cancer cells anywhere they could be found in my body. They did not plan any more surgical interventions as my tumours were not operable, however I ended up having extensive back surgery in February 2015 as the result of damage caused by the cancer to my bones. 

4. Radiotherapy

Radiotherapy is the use of radiation, usually X-rays, to treat cancer. Radiotherapy destroys the cancer cells in the treated area by damaging their DNA. Normal cells are also affected by radiation, however they are better at repairing themselves than the cancer cells. I will not dwell on radiotherapy with information which is generally known or can be easily gathered, I only wanted to spend a few words on how I have lived through it.

I had three separate courses of radiotherapy. First in December 2014 with my first treatment plan, which managed to stop the cancer growing, for some time. Then in June 2015 to treat a tumour growing against my spinal cord in the middle of my back, and in July 2015 to treat cancer in my left hip. My feeling is that radiotherapy is generally a lot more traumatic for the patient, both physically and mentally, than people without cancer may perceive. Since it is not intrusive, it’s generally pain-free and has limited and transient side effects, people tend to come to the conclusion that it’s relatively easy for the patient to deal with. And this may be true to some extent. Nevertheless it is actually quite heavy in many ways. First of all, you need to go to hospital every day for the duration of your treatment. I had treatments on 5 consecutive days, but sometimes a course of radiotherapy can be delivered over weeks of daily attendance. This is exhausting in itself. Travelling back and forth every day, for someone who is not very well to start with, is extremely tiring. On the top of the burden of this commuting time, you are left with a sense of fatigue which can last for weeks. This is because healthy cells are also destroyed by the radiations (as we said above), so in the following weeks the body will be busy using its energy to regenerate those tissues, leaving little energy for anything else.

In addition to the physical exhaustion, there is a visible impact on your skin, from initial redness to permanent white patches, to hair loss. Whilst this is all relatively minor if not trivial in the scheme of things, seeing your skin change will remind you of your disease every time you look at your body in the mirror. This was particularly evident for me following my recent radiotherapy on my back. Whilst they made me sign the usual consent form with plenty of pretty unluckily side effects (nausea, vomit, etc.) of which I experienced none, they failed to mention what would have been the most obvious and ‘real’ side effect for me, that i would lose the hair on my chest. This is in the area where the rays hit my body from the back, and came out from the front, and by doing so left a perfectly shaped rectangular area of hairless skin in the middle of my chest, I can tell you, not a good beach look!!! Not that I am going on holiday any time soon unfortunately, however it really felt extremely weird to find out this strange change in my body appearance. Obviously I shaved off the rest of my chest hair. I believe that the hair should regrow in about 2-3 months (my own research) but we shall see, for now, my brand new look is the one in the first picture below! Again, I appreciate this is trivial stuff and I am partially laughing about it, but it does make me think how this disease has affected and changed my body in so many ways. Also, on a more serious note, I believe that doctors should know better what to tell patients to expect, as this was not something that had occurred to me (as the rays were directed at my back not my front), but surely they should have pointed out hair loss on my front as a side effect and I would have shaven my chest before to avoid the unpleasant surprise of seeing the body hair fall out. Also it really makes you wonder, given that they have been superficial in communication, can I really fully trust them?

Finally I would like to mention that for some types of radiotherapy, when it is fundamental that during treatment you don’t move your body not even by a millimetre, they mould a plastic mask on your face, which is then used to pin it to the treatment table to keep you in place. The mask is like a plastic net, so that you can breathe through it, which covers your entire head. Anyone even slightly claustrophobic will have great trouble to have to go through this procedure. I had a mask fitted for my first course of radiotherapy, for my neck. It was one of the most surreal experiences of my life. The moulding of the mask, the cold water on your face, you can only close your eyes whilst you hear the technicians working around you, it’s like a dreamy situation, so surreal that I lost somewhat touch with what was going on, I started following my own evolving thoughts away from the treatment table on which I was lying, guided only by my stream of consciousness, if I may borrow a literally term… being attached to the table via that mask for each treatment was a feeling of complete powerlessness which is hard to put into words.

Lastly, just to add that when I am lying on the treatment table, completely still and powerless for those few minutes, all I do is pray, pray and bless those rays going through my body and welcome them as rays of life...

5. Immunotherapy

Immunotherapy is a treatment that uses certain parts of a person’s immune system to fight cancer. Unfortunately the problem with cancer is that unlike other diseases, the immune system doesn’t see the cancer cells as ‘bad' because the cells aren’t different enough from normal cells, and hence does not attack them. Sometimes the immune system recognises the cancer cells, but the response might not be strong enough to destroy the cancer. To overcome this, researchers have found ways to help the immune system recognise cancer cells and/or strengthen its response so that it will destroy them. Immumotherapy is now the first line of defence for metastatic melanoma as unfortunately this type of cancer is very resistant to chemotherapy. Immunotherapy is given as an intravenous infusion (a drip into a vein) at the hospital where you go as an out-patient for the day (the second picture below is me receiving treatment in June). I received the first dose of immunotherapy on 8 December 2014, a medicine called Ipilimubab. Usually four doses of this drug would be given at intervals of three weeks. However they decided to change my treatment and on 29 December 2014 I received a dose of another immunotherapy drug called Pembrolizumab. This is because my blood tests (including some cancer markers) were showing no improvement, in other words it looked like I was ‘failing’ the ipilimubab. Also the oncologists had already agreed that my melanoma was very aggressive (did I hear this before?) so it was not likely to respond to 'Ipi' and they were keen to move me to 'Pembro' as soon as possible, as this is now deemed a more effective drug.

Immunotherapy drugs do not have the same aggressive and immediate side effects as chemotherapy. However they can have potentially very serious side effects, including life threatening ones. This is because by waking up the immune system, they can trigger some auto-immune diseases, where the immune system starts attacking healthy body tissue by mistake. Also as these are all fairly new drugs, no one knows what their long term implications really are.

The immunotherapy drugs I received in December 2014, we don’t know for sure which one of the two drugs, gave me a colitis which kept me in hospital for two weeks (over New Year's Eve too, can’t tell you how much fun that was!). That was one of the most horrible times I can remember. This is also where I learnt that doctors often present you only with the worst case scenario. During those awful days in hospital I was repeatedly told (every day, it was like a torture) that if the colitis did not end naturally they would have had to treat it with steroids (very strong anti-inflammatory drugs) and steroids would depress my immune system, in other words work against the treatment, hence I would die. Fortunately another scenario happened, hardly mentioned by the doctors: the colitis subsided by itself without use of steroids, the immunotherapy in the meantime started to do its job, so I was fine (at least for now).

Scans is February 2015 showed that the disease was stable with reduction in liver metastases, so I stopped any treatment as it looked like my immune system had been activated against cancer and was now recognising it. This continued to be the case until May. Unfortunately in June 2015 the cancer started to grow again (as I sadly was expecting due to increased pain levels) and I was started again on the Pembrolizumab, every 3 weeks, as per protocol, in the hope that this systemic treatment (in conjunction with the radiotherapy) would stop the cancer.

6. Surgery 

Surgery is one of the most important treatments for cancer and it is ideal to treat cancer that is completely contained in one area and has not spread. Surgery is a local treatment i.e. it only treats the part of the body operated on. For melanoma, surgery may be the only treatment needed when the skin tumour is caught and removed early. This is why prevention and early detection are fundamental and can save your life. Once the cancer has spread internally things get very nasty as we have learnt through this Blog. I have already talked about the various surgeries I went through to remove cancer: December 2013, primary tumour removed from my back; February 2014, wide local excision (clear margin of skin removed around the site of the primary tumour); June 2014, cancerous lymph node excised from my neck; July 2014, neck dissection, where 25 more lymph nodes were removed from my neck (all resulted clear of cancer). Whilst I had no more surgeries to remove cancer, unfortunately I ended up needing extensive back surgery in February 2015 as the cancer had damaged some vertebra, especially the ones that support my neck. This was extremely dangerous as if the spinal cord was touched and the nerves damaged I may have lost my mobility and be left paraplegic (that was also not so nice to be told by a doctor, by thankfully this did not happen either, so far). I was admitted urgently to hospital after my scans showed the precarious situation with my bones. Unfortunately they had to stabilise my neck, which means a titanium rod was screwed into the bones supporting the neck and into my skull, so that I have lost almost entirely the mobility of my neck (I cannot look left or right or up, just by moving my neck), but hey I have learnt how to shave now without looking up and I suppose I must learn to live with this (relatively minor) disability. It took me long time to slowly recover from such surgery (the scar in the third picture below) but thankfully it all went well and in the meantime March and April were the months where the cancer was being kept at bay, so I started to feel relatively well (and this is when I also started to write this Blog again).

7. Bad scan results: the fight goes on

As at 31 August 2015, I have had results from my latest MRI and CT scans this week which unfortunately have shown that immunotherapy with Pembro has not worked for me, or not enough. The disease is progressing and the tumours are growing. I am devastated. I just spent the last two days crying my eyes out. But I know I need to pick myself up again and keep fighting. I have an appointment with my oncologist next week and we will discuss where we go from here. As I said above, as soon as I have a new treatment plan, I will be in a better place. I however know that from here on my options are limited and not easy, but I can only move forward and undergo all treatments options still available to me, as well as considering complementary treatments which may help me win my war against cancer.   

My smooth chest after radiotherapy made my hair fall out! (August 2015)

Receiving my immunotherapy on 29 June 2015

Scar from neck surgery in February 2015