Treatment Options
Due to my scans showing that I had Melanoma cells that were inoperable, it was time to look at other treatment options. I was lucky to have my care transferred to the Royal Marsden in Chelsea as it meant that I had I didn’t have to travel far, and this made more options viable to me. In September 2011 there were 3 treatments available for Melanoma patients – Vemurafenib (a biotherapy that targets the BRAF mutantancy in genes), chemotherapy (only successful in 10% of Melanoma cases) and Ipilimumab (incredibly expensive and therefore only offered as a last line of treatment). There was also a trial open to those with the BRAF mutation so I was offered the chance to take part. I decided pretty quickly that I should grab the opportunity to add an extra line of treatment to my arsenal and I signed up for the MEK-Inhibitor trial (MEK is the next DNA rung to BRAF and works in virtually the same way). It meant that I had to have 10 different baseline tests over the space of about a week so I had to go here, there and everywhere to get the necessary ones. Fortunately I worked for a big company and they were very understanding over this whole time. I had PET scans, blood tests, eye tests… the most memorable was one where drops were added to dilate my pupils then I was sent back out into the wilds of Sutton on my own, struggling to see very clearly – let alone being able to see my phone screen in order to call a cab to get back to the station! When reporting back to my CNS’s, I suggested that future patients be warned to take dark sunglasses with them as the sunlight bouncing up from the rain soaked road was pretty blinding and made it even harder to see where I was going (not great when crossing roads or standing on train platforms alone!)
Starting The Medication
I had a very busy week at the end of September – I completed on the purchase of a flat and I was to start on the trial 2 days later. I had to arrive at the hospital early on the Thursday morning to start taking my medication. Obviously the traffic was at a standstill and I ended up being 20 minutes later than planned, despite having set off in plenty of time. I finally arrived and was given my first dose – 2 tablets totaling 7.5mg of the trial drug (it just had a reference number as it was too early for it to have a name). I was also given a ‘drug diary’ where I was to note down that I had taken the tablets twice a day and any side effects. I was then sent on my way. To be honest, it felt like quite an anti-climax as I was only there for a few minutes and had just taken 2 tablets that were smaller than paracetamol caplets. So I carried on with my day and took the tablets again in the evening. I had to pay close attention each time I took the tablets as they both looked the same but as one was 7mg and the other was 0.5mg, I would either overdose or under-dose if not being totally sure that I had one of each. I did have to throw a few away as I wasn’t concentrating and couldn’t be totally sure if I had the correct dose. The main problem with the tablets was that I had to take them at around 12 hourly intervals, either and hour before or 2 hours after eating. It did make it quite tricky to figure out when I could eat and I settled on mostly taking the tablets at 9am, eating breakfast at 10am then dinner around 7pm and tablets at 9:30pm. One advantage was that I could no longer eat snacks late at night, so with every cloud… I was also not allowed to eat grapefruit as it could increase the level of medication in my blood. This was rather easy, but I had to remember to decline breakfast juices unless I knew that they were pure orange or apple.
The next day I woke up and lay there deciding that I felt fine and all seemed good. I picked up my phone and stared blearily at the screen. Then I realised that it was more blearly than I expected. I had developed the side effect described as the ‘fuzzy doughnut’ which meant that there was a blurred thick oval in my field of vision – the outside and inside of which were clear. I called my Clinical Nurse Specialist and she told me that I needed to come in to see the Ophthalmologist. I returned to the hospital and had several tests which showed that everything was otherwise fine, so I left with instructions to keep my team informed of any changes. I headed out for dinner with a friend – reading the menu involved a lot of head tilting so that I could figure out how to read each item! Fortunately I could see the humour in this but I really hoped that it was just a temporary issue as it would be incredibly hard to get used to living with. I washed my food down with a couple of glasses of wine and I looked at the menu again to decide about dessert. Amazingly I could read the menu clearly! I wondered if it was a temporary improvement in a kind of reverse to the usual effects of alcohol but it lasted all night. In the morning I was again concerned that the dreaded doughnut would be back, so I took out my phone and everything was still clear! I was so relieved! On the Monday, I called my CNS and told her the good news. After telling her that I attributed my recovery to a couple of glasses of wine, she decided that she would probably keep that information out of the report ;o)
How Things Went At First
For several months I had to report to clinic every Thursday. They checked my blood levels, blood pressure and weight. At one point I was taking 20 tablets each day in order to pre-empt some side effects and to combat others (some were to improve the side effects of other tablets). At first I had a few blood levels and my blood pressure rise, but not go past the acceptable range. It was quite nerve-wracking every time I went in for an appointment as I felt fine but I knew that if these continued to rise then I would be pulled off the trial. I had a PET scan after 2 weeks and the result was quite astounding – the disease had shrunk by about half! It was utterly amazing and I was so excited! I had to try to keep my emotions in check though as I knew that it was still very early days and anything could happen. I continued to have CT scans every 2 months and everything was looking good.
I had yet another PET scan scheduled, again at the Sutton site of the Royal Marsden – I should have at least been glowing or preferably developed a super power due to all of the radiation in my body by now! I arrived and was told that the scanner was being repaired and wouldn’t be recalibrated until late the following day. I was so on edge regarding all of my treatment that I got quite upset. The smallest thing can set you off at times like these. It’s a long way out to Sutton and I’d had to leave home before 7am to get there in time. I also wasn’t able to eat for several hours before the scan so I hadn’t eaten since the night before and hunger probably didn’t help my mood. The Sutton staff called the Chelsea team and it turned out that there had been some miscommunication between the two so I had to come back a couple of days later. The next trip was more successful. It was late in the afternoon so after the radiation injection and letting it filter through my body for 30 minutes, time was getting on. I was strapped into the scanner and drifted off to sleep – there’s very little to do apart from stare at the inside of the machine for what turned out to be just over 90 minutes on this occasion. When I came out it was around 7pm. There was only the radiographer and myself left in the department, most of the lights were off and doors locked. It felt a little like one of those horror movies where everyone suddenly and inexplicably disappears. I made my way back towards home and although I was due to meet a friend for dinner, I had to buy a cake from the railway station shop as my stomach thought my throat had been cut bearing in mind I hadn’t eaten since early morning. I was again under instruction to avoid small children (always good advice!) and pregnant ladies for a few hours. This is quite tricky on public transport and as many of us have experienced, it’s not always easy to tell if a woman is in the early stages of pregnancy or whether she just carries a little weight on her stomach… I didn’t really want to have to ask awkward and potentially hurtful questions so I did the best I could. I was also unsure whether I should change seats or whether I should tell the child / pregnant lady to move away..? I mean, I had just had a medical procedure haha! Anyway, after all of the time taken to get this PET scan completed, it was worth it as the results were again excellent. It was all so incredible.
Ongoing Experiences
There were a few side effects to the treatment which included a potassium deficiency. I was told I should be fine as long as I ate a banana every day. Obviously I enquired whether these would be available on the NHS but I was told that I would have to provide my own. As the drug is a protein inhibitor, I ended up a little low on protein in my blood and with kidneys that leaked too much protein out. It turns out that this can have quite an effect on the body. It started with my skin getting very pale and my body swelling up slightly due to Oedema (I already had Lymphoedema in my left arm due to the lymph node dissection), my hair lost all of it’s colour so I started growing white-blonde roots along with matching eyebrows and eyelashes. My hair also thinned out, not very dramatically but about twice as much as normal would come out in the shower, but the new growth came back white-blonde and very thick. One bonus was that although I had very pale eyelashes, they were incredibly long and thick (and oddly painful if they were caught in the wrong direction). I was frequently asked if I had false eyelashes as they were quite something when I was wearing mascara. I developed a skin rash over my upper chest, neck, lower face (up to my nose) and a tiny bit under my fringe. It was red, rough and sometimes itchy. I was referred to a Dermatologist who gave me creams and antibiotics then I visited Liz Earle to get a natural skincare routine that would suit me and MAC to get a liquid foundation to cover the rash. I was so self conscious about the way that I looked – all in all, I looked nothing like the person that I used to be and it was very strange to look in the mirror for an incredibly long time. I could never accept that this was going to be the ‘new me’ but I just had to get on with it as I had bigger things to be worried about.
Another side effect was skin splits on my fingers and toes. My nails became very brittle and I often had splits on my fingertips and big toes, especially over winter. The amount of fingers that had splits could vary from 1 or 2 to all 10. These were incredibly painful as everything I touched hurt. Tying shoelaces was agony and putting gloves on was a logistical nightmare due to puffy hands and painful fingers. Fortunately I had friends who would help me get dressed when I ventured outdoors in the cold! I also had splits in the skin on my shins – this wasn’t enough to bleed but was pretty raw and required regular applications of a really thick eczema cream. I could feel pretty lethargic sometimes, literally feeling like I was walking through treacle, and I would suddenly get so incredibly tired like I’d never experienced before (and fortunately not since). My memory was also shot to pieces – I was told that can be a side effect of cancer and my medication but I could also attribute it to having so much on my mind (and in my hospital diary) and probably a little due to age… Unfortunately, my memory has only improved very slightly so I still spend a lot of time wondering who I had conversations with and where I was about to go when I got up from the sofa – I don’t even make it to another room before I forget what I was going to do!
Tales of Cellulitis
The most dangerous of side effects was that I developed Cellulitis, numerous times. I had been warned about this and when a red patch appeared on my left arm due to skin splits letting in infection and my lymphatic system not being able to remove it as it normally should, I was given antibiotics. The red patch was hot to the touch and I would get very cold, especially at night when I would shake and wake up in cold sweats. The first bout was dealt with pretty swiftly using a low level antibiotic – Doxycycline. I was relieved, to say the least, as I had been told about the risk of blood poisoning and death if it didn’t clear.
It wasn’t all bad – on the plus side of my medication, I generally felt pretty good and was able to carry on with a normal life to a big degree. In October I joined my friend on a weekend away for a Halloween themed hen party and had a great time. In early November I enjoyed a lovely afternoon tea with friends in The Orangery at Kensington Palace. In mid November I attended my friends very lovely wedding in Nottingham. But due to sods law, it wasn’t all to be plain sailing for me…
It all started when I picked my friend up half way to the wedding. My car lost a lot of power and we had to pootle very slowly for a good few hours to get to our destination. My friend and I finally arrived at the hotel arrived at the hotel just before 10pm and opted to get the AA out on Sunday before our return home. We had spotted that a small supermarket was open nearby so intended to go there to get some bubbles to celebrate the good news of my treatment success along with something for dinner. Unfortunately by the time we had checked in, the shop was shut. D’oh! So we set off to find something else. Long story short, there is a spectacular lack of options for food in Nottingham centre so we ended up in Greggs, buying a baguette, cake and bottle of coke each – not the bubbles I had planned on! When we got back to the hotel I realised that one of our cakes was missing, so we shared the one we had – I had to cut it in half using a plastic spoon… Anyway, the reason that I mention this story is that I had an inkling that things weren’t quite right with me and I realised that I was in fact suffering from cellulitis again. Fortunately the wedding wasn’t until early afternoon so there was time for a morning visit to a walk-in centre to get antibiotics.
I had to be at work very early on the Tuesday for a project that had timed releases so I was put up in a hotel near work on Monday night. My Cellulitis wasn’t getting any better and was in fact getting worse. After I had done the morning releases I called my CNS who told me to see my medical team asap, so off I went to Chelsea again. It was decided that due to the severity of the infection, I had to be admitted to hospital to get antibiotics intravenously. I was distraught – it was my birthday later that week and I had plans to go out to Proud Cabaret with a group of friends on Friday! I’ve always been determined not to let poor health get in the way of me living my life but there was no other option. I was told that I had to go to Chelsea & Westminster Hospital for treatment as there was no room in the Marsden. C&W were informed to expect me and I was given a letter to present at A&E. I took my time, had some dinner and went to buy more pyjamas (I had an overnight bag with me from the hotel stay the previous night) before arriving at the hospital at around 8pm. I was shown to a waiting room (aka corridor with a few chairs in it) and was shortly called in to have a cannula inserted. I then went back out and waited, and waited…
Somewhere around 12:30am I was called into a cubicle and told to get changed into a hospital gown and wait. Seemed they didn’t have a clue why I was there (even though they had a call and letter) so after some more faffing around I finally made it up to a bed on the ward at around 1:30am and quietly had my first IV antibiotics. I had a further 2 the next day and another on Friday morning before I was discharged – the others I needed would be given at home by community nurses as I was determined to go home. I was wasting a bed by just sitting there doing nothing for 23 hours a day, well apart from showing other patients how to use their bed controls (by turning them the right way around) and how to text. My Dad turned up to take me for lunch and drop me at home but I was told that I had to be seen by the consultant before I could go. So we waited… and waited… (a theme at this hospital it seems). I kept having underlings popping to see me to tell me that the consultant would be with me shortly. After about 1pm I started to make noises at the nurses station and they knew I was on the verge of discharging myself. After being assured that I would be seen soon, so waiting in situ, I was finally seen at around 4pm. Dad and I could have gone to the restaurant over the road and back while we waited, but we just hung around being bored and missing lunch altogether. I was partially discharged (with the cannula still in place) and dashed home to get changed and ready to go to Proud Cabaret. I had a great night with my friends and at the end of the evening I returned to the hospital as I had been told that I actually needed 2 more doses in the ward. I travelled with a friend and she waited with my while I got the next infusion. I had to return again the next morning for my final dose in the hospital – they were going to leave my bed open so that I could be seen asap when I arrived. Turned out that the message wasn’t passed on so I had a very long wait and spent the whole morning there. In the evening I had 2 nurses come to my home to give me a drip. They also came the next morning before I dashed off to watch rugby at Twickenham, then I had to be home by about 7pm so that I could get my very last dose. It was a bit of a logistical nightmare but meant that I could still enjoy the weekend that I had planned for my birthday.
After spending Christmas with a friend and her family I jetted off to LA to spent a couple of weeks exploring the city, having New Year in Vegas (including helicopter flights over the Grand Canyon and watching shows), flying up to San Francisco and then driving down Highway 1 back to LA. I was lucky to be able to be well enough to get away and it was a really good end to what had, in many ways, been a challenging year.
I Am Titanium 