Getting Ready
I started the year having several tests done in order to get signed up on to the Anti-PD1 trial. After a couple of weeks, and nearly at the final furlong, I was given news that would be a game changer – I wasn’t actually “ill enough”!?! As the drug companies fund the trials, they get to set the rules and apparently neither the cells that I had floating around my tissue nor the cells in my lymph nodes (yes, they had returned to a small degree) were large enough for them to gather the measurements that they required. Apparently they wanted to measure the amount cells shrunk by and making them potentially disappear altogether was of no interest to them!
Now for a new plan. There were 2 treatments available to me at this point – Vemurafenib (a BRAF biotherapy) and Ipilimumab (an immunotherapy that had previously only been available as a last line of treatment). I was told that Vemurafenib was likely to work better if I had another treatment between it and the MEK Inhibitor that it was very similar to. It was suggested that Ipilimumab was the best option for me and that was what I settled on. After only a couple more tests and having had funding secured from the Cancer Drugs Fund, I was ready to start.
The New Treatment
Ipilimumab is incredibly clever in the way that it works – the immune system has a natural break, so the T-cells stop fighting disease when they reach this barrier. This drug stimulates the T-cells so they continue to attack the cancer cells. Your immune system literally fights the cancer on it’s own! I arrived at the chemotherapy unit early on a Wednesday morning – I wasn’t being given chemo, but Ipi is delivered in the same manner. I had my bloods checked along with having my height, weight and blood pressure measured. I had a cannula inserted in order to have my blood taken as it could then be left in for my treatment and my limited useful veins wouldn’t be overused. My CNS commented on how well I was looking, so we had a laugh about how many people expect those of us with the ‘big C’ to look like we’re on deaths door all of the time. I told her that I would try harder to look ill and fit the stereotype that the movies have given us.
I headed to the waiting area while my bloods went off to be tested. It was a very sociable and strangely (but thankfully) light-hearted department. There were all kinds of people there ready for treatment – chatting, knitting and doing other types of craft. Everyone seemed to have accepted their situation, at least on the face of it, and decided to make the most of things especially when so many hours would be spent in that room. I found that I saw many of the same faces week after week which was quite a relief to be honest – it meant that most people were still doing ok. I was called in to see the consultant and a CNS so that we could have a final chat before my treatment was to start. My blood levels were fine so I was good to go. I then drifted around for a couple of hours and got some lunch before I had to be back for the next part of my appointment. A really nice touch in this department is that patients get free tea, coffee, biscuits, yoghurts and fruit, then around midday sandwiches and fruit juice are brought around. It definitely makes for a relaxed and welcoming feeling.
I was called through into the treatment area and seated in a nice reclining chair. I had my personal details checked and was plugged into the IV machine. The dose has to be measured precisely for your height and weight, then used within 48 hours to ensure efficiency. I had my tablet ready to watch a movie, some water and snacks, then I was off. The treatment lasted for 90 mins then was followed by a saline solution for a further 30 mins to flush it all through. I had to stay as still as I could with my right arm as the cannula was in my inner elbow so if I bent my arm the flow would get restricted, setting off the alarm and delaying the end of the treatment as the flow would pause until reset by the medical team. All went pretty smoothly and I was patched up and sent home, with the next treatment scheduled for 3 weeks time. I got a cab as I figured that this was some pretty intense stuff and I should treat myself on treatment days.
How I Fared
All seemed pretty good to start with, then after a few days I started getting stomach cramps and couldn’t be far from a toilet. I had been warned about this side effect as it is very common – the medication is very strong so your stomach doesn’t react too kindly to it. I was also under instruction to let my CNS know as soon as this happened so that I could be checked out – it was possible to suffer from a hole in the bowel, therefore leading ultimately to death if not dealt with swiftly. It was determined via tests and check ups that I just had an upset stomach so I could continue with treatment and would be given a bucket load of Loperamide (Imodium). I didn’t want to eat for about 5 weeks as my stomach issues totally put me off food. I just didn’t want it. I didn’t want to touch alcohol either – I very rarely turn down a glass of wine! On the plus side, I was under instruction to eat white bread, white pasta, white rice – all of the things that we’re normally told that we should avoid. I didn’t want much of this either though but my flatmate bullied me in to eating at least once a day. She would come home and quiz me about what I had eaten that day and guilt me in to making myself some pasta with butter on it. Beige food seemed to be the way to go as fibre filled, remotely fatty or acidic foods were not joyfully received by my body. I spent a lot of my days just curled up on the sofa as I couldn’t face the thought of going out for more than an hour or two. I didn’t have the energy. Luckily my manager at work was really understanding so let me work from home for as long as I needed to – my role had pretty much been outsourced by this point so there was thankfully little to do.
Three weeks later I went for my second treatment. I arrived at the reception area early morning in order to check in and was told that I wasn’t supposed to be there – my appointments had been moved to one week later due to my stomach issues. I was so frustrated that I really had to struggle not to cry. Being psyched up and prepared for a day of hopefully life saving treatment meant my nerves were quite frayed so it was quite a blow to find I’d made a pointless trip. A nurse came to speak to me and was really apologetic as she had been tasked with calling me and had been distracted, then forgot to do it. I sucked it up and went home again.
The next week I went back to the hospital for my appointment. It followed the same schedule as the first time but I was asked a lot about my side effects to determine whether I would be ok. I had my medication as planned then went home again. I was still suffering dreadfully with my stomach – it seemed to kick in more about 3 days after the dose and last for about 5 days until it eased slightly again. I was taking rehydration salts and drinking isotonic drinks like they were going out of fashion. My tests had shown that I was quite dehydrated so I had to go in for a saline drip to help fix this, at least temporarily. I was prescribed codedine as it has a side effect of blocking you up. It turns out that my body is intolerant to codeine as 2 hours after taking my first tablet I was violently sick. I opted not to take another. I did get hold of the weakest Cocodamol that I could get, but that only delayed my sickness by 24 hours. Clearly this drug wasn’t for me. Back to just the 3 boxes of Loperamide per week – I was taking between 7 and 8 tablets each day. Over 5 weeks of minimal activity and food intake I lost around 6kg. I also started to eat meal replacement bars as I figured that they contained a reasonable balance of nutrients in order to try to keep myself going.
I started to perk up slightly at the end of March and the side effects became slightly more manageable. I did suffer from a lot of colds as it appeared that my immune system wanted to fight any that it remotely came into contact with. I actually didn’t mind though as it meant that something was definitely working. I also suffered a lot from hot sweats (“tropical moments” as my Mum used to call them) and often just walked about in tshirts. It was at it’s worst at night and I looked into all sorts of remedies including changing my bedding and bamboo pyjamas. This continued for some time and was pretty unpleasant but not too hard to live with when washing a lot (myself and my sheets). I was able to enjoy a Backstreet Boys concert at The O2 – it was one of the best concerts I’ve seen and I really don’t care if people judge me for this! The next day I jetted off to South Africa with my best friend. We had been talking about this trip for a few years and it was finally happening. I went with a suitcase stuffed with loperamide, dioralyte and meal bars. We had an amazing time on safari, exploring the countryside and several towns. My only regret is that I still wasn’t really in the mood to drink alcohol so I couldn’t partake of very much of the fantastic wine that is produced there – my friend was happy as it meant that I would drive the hire car most evenings so she could enjoy wine for the both of us. I did try quite a few on a vineyard tour that we took in Stellenbosch but it definitely affected me much more quickly than usual due to my recent abstinence. On my return I went to a very fancy charity dinner at Twickenham Stadium. It was arranged for a friends brother as he was an avid rugby player but had recently suffered greatly from cancer too. It was a lovely evening and it was heartwarming to see how many people wanted to support both him and cancer charities. Over the next couple of weeks I joined a friend to celebrate a big birthday and visited Prague for a few days.
The Next Wave
I had been referred to the Pain Clinic and was given acupuncture on a few occasions in order to try to ease my stomach problems further. I had needles in my legs, stomach, chest and arms and I can’t say if it worked, or was psychosomatic, but I was coping much better when I had my next treatment so all went ahead as planned. While I was receiving my treatment I had a magazine and a bottle of lemonade on the top of a cupboard next to me. I hadn’t put the lid fully back on the bottle and being the clumsy fool that I am, I managed to knock it over and spray fizzy drink everywhere. As I had to keep my arm straight and in situ I wasn’t really sure how I was going to deal with the mess that I had made. Fortunately the patient next to me had a companion with her and that lady very kindly mopped up after me. I couldn’t apologise enough but she didn’t seem to mind too much.
I had been suffering from a mild cold so put the slight headache that I had been experiencing down to that. A few days later it started getting worse and the pain was really starting to get to me. I asked a couple of medical friends what tablets I could try but there wasn’t anything that would touch it. For 3 days I was in a lot of pain, I couldn’t concentrate on anything and I had a very short fuse. On the Friday morning I decided to call my medical team as I knew that I wouldn’t be able to cope with a headache like that for a few more days over the bank holiday weekend. I was instructed to go in and was met by a doctor. They decided to give me another saline drip and send me up for a MRI scan. I was really impressed with the speed that this all happened as I was fitted in very quickly. I was less impressed by the fact that an MRI scanner makes a lot of noise, even when you’re wearing headphones, so it did nothing to help my already pounding head. I was told to get something to eat while waiting for the results. A little while later I was told that I had an enlarged pituitary gland, that this was becoming fairly common with Ipi patients and that they should be able to easily get rid of my headaches. I was prescribed 50mg Levothryroxine per day. I was booked in for some eye tests to make sure that the pituitary gland wasn’t pressing on my optical nerve and scheduled in for a cortisone test. Amazingly, by the Monday my headache was pretty much gone. It was such a relief! I had the early morning cortisone test – blood is taken 3 times over a period of time, around having an injection to stimulate cortisone production. I also had another saline drip – as I was already there, why not? This test came back fine, as did the eye tests that I had. I was referred to the Endocrinology department at Chelsea & Westminster Hospital (I had a sinking feeling about going back there…) I had my bloods checked and apparently all other Ipi patients that they had seen (and those featured in the study papers) had 5 hormonal imbalances. I only had 2. It was decided that I should return for another scan and check up in a few months so they could find out if I had developed the other imbalances.
I was booked in for my last dose of Ipi in mid May but it was decided that I should have it deferred by one week again due to the side effects that I had just been experiencing. While in the waiting room, I was making a drink for a less mobile patient. I had taken one step away from the machine when the lightbulb above where I had been standing literally popped and exploded, showering glass everywhere! It missed me by about an inch. I though I was going in to the clinic to get better, not come out having more things wrong with me! We all had a slightly shocked laugh about it as nobody was actually injured. The treatment went smoothly. My CNS came to see me and told me that she was quietly confident that it was working for me as everyone who had the headaches had good results. I kept all of my fingers and toes crossed!
More Scans
A month after my last treatment I was given a CT scan to see if it had been successful. The exciting news was that my disease had greatly reduced. It was amazing to know that the period that I spend suffering was totally worth it. It was a small price to pay for such fabulous results. The scan also showed a cyst on my ovaries so I was scheduled in for an ultrasound. Fortunately this turned out to be something that I didn’t need to worry about and it would clear up on its own.
To celebrate my great news, I decided to travel to China in July for a couple of weeks. I visited the Great Wall, Terracotta Army, Tibet, the pandas in Chengdu, sailed on the Yangtze River and ended in Shanghai. It was an incredible experience and one that I would recommend to everyone. I would also suggest that July isn’t the best time of year to go – it’s hot and incredibly humid. I had a summer of music seeing Dolly Parton, Stevie Wonder and a weekend of hits at V Festival, with Lady GaGa later in the year. I was delighted to be able to be a bridesmaid for one of my lovely childhood friends and counted myself very lucky to be fit and well to attend. I was definitely enjoying my life!
I had to return to Chelsea and Westminster Hospital to have another MRI scan. Shortly afterwards I went for the results. I sat in the waiting room for a very long time and there were only a few of us left in there when I was called. The consultant admitted to me that they “had forgotten I was there”. This did not fill me with confidence. I was told that my pituitary gland seemed to be about the same size as it was on the previous scan and they would contact me again in a year to have a follow up. A few weeks later I received a letter asking me to go back the next month. I was confused by this and figured that something else had been picked up. I again waited for quite a while to be seen then was told that everything looked ok and they wanted me to come in for a scan again in a year… I had a very strong feeling of deja vu. I asked why I had been called in as this was what I had been told 6 weeks before. I must admit, I did get pretty blunt with the consultant as this seemed like a massive waste of time for both of us. It turned out that there wasn’t anything new to tell me so I left feeling pretty frustrated.
Two months after my CT scan I was scheduled in for another and these results were even better. My disease had shrunk even further, even though I was no longer receiving treatment. I now only had a couple of really tiny nodules. Apparently this was very common with Ipilimumab and many of the patients who had responded well to it had been left with a miniscule amount of disease instead of being totally clear. I had another scan 2 months later, and a further 2 months after that. These both showed that my disease was stable. This was literally the best news that I could ever expect to be given. I was told that I could return in 3 months time but I negotiated almost 5 months due to the fact that I was planning to go travelling for a while. I had a long weekend in Vegas to celebrate my birthday then I started my journey in Singapore and on to Cambodia to meet friends for Christmas and New Year. Next year was going to be a good, I just knew it.
I Am Titanium 