A blog has been long time coming because I was concerned about the next results. After the 3rd dose of Pembrolizumab things started to change, firstly I started to notice that swallowing some tablets became more difficult, particularly the big calcium supplements that I bought to try and counter some of the side effects of the steroids. I was staying with Georgie’s hospital accommodation in Northampton at the time and it started quite good humoured. I thought that I may have tonsillitis or glandular fever and showed Georgie. She said that they looked swollen and to go to the bathroom to see them better. With the help of my phone torch, there was something instantly wrong. Initially it was quite hard to show her the back of my mouth, but when I eventually arranged my tongue in front of the mirror it was obvious that my tonsils were black, black as melanoma. We both stared at each other in the mirror in shock, “you’re not going to faint are you” a reactionary and an inevitable statement and as if by magic it happened with me catching her and slowly getting her to the ground. Her waking up wondering what had happened just 5-10 seconds later. This reaction was due to what this news means, we didn’t think it would spread anywhere else, let alone the tonsils. We didn’t know it could go to the tonsils, it’s so rare. It was also the first time we could actually see the melanoma staring back at us, the ugly thing in the way of our incredible future together and the thing that is causing such heartbreak.
This led to quite a bad Saturday where we made a little den with the duvet on the floor and cried. Georgie was worried they would get bigger and close my airway up, but there was no point going to the Marsden because it was a Saturday. On the Monday an MRI head was done and the Head and Neck team looked at my tonsils with a scope down my nose and the plan at that time was to carry on. To cut the tonsils out they would need to stop the immunotherapy for a theoretical problem with healing. The MRI head at that time showed stable disease, therefore the plan was to carry on, which I felt seemed quite optimistic, but there’s a paucity of choice in this game. So had the fourth dose of pembrolizumab on the 24th February and fingers were crossed. The hope with the tonsils was that actually disease can come up and go back down again on immunotherapy and four cycles is usually how long they give that to happen. But I think from my tone that you know where this is going. So I had the Pembro and a scan was arranged of the head, neck, chest, abdomen and pelvis for two weeks time. While I was waiting lymph nodes in my neck have came up too. On Tuesday I had these scan results back that did not show what we hoped for.
In that period I had an episode again with neurological symptoms. It all started with right leg weakness. I was trying to get from the sofa to the toilet, Dave caught me in the end although I was adamantly trying to get there, eventually he put me to the ground and I crawled to bed. In bed getting right arm weakness and a change in voice. From then on I do not remember much but Matt Smith came and despite my insistence an ambulance was called. Georgie then turned up too from Leicester and they did their best to calm me down in resus. Apparently I was very agitated and angry that I was in A&E. Eventually they had to give me some diazepam so they could give me painkillers and get me into a CT scanner. This episode was treated with a lot of steroids again and lasted about 10 hours on Thursday and I self discharged after that. These symptoms have now totally resolved.
This episode happened on an important date in my life; on Thursday 10th March, The University of Leicester were giving me The 2016 Outstanding Alumni Achievement Award. I woke up at 3am in the morning asking the nurse who was sitting next to me what was going on and hoping she was wrong when she told me it was Friday. I wasn’t aware that whilst I was confused and agitated in resus that a difficult decision was made, but I’m glad Georgie, Dave, Alice, Dad, Matt and Rachel still went to the event to represent me and accept my award. Dave edited my speech slightly and did a good job of giving an acceptance speech, especially as he was not planning on going to a black tie dinner that evening, let alone speak in front of over a hundred of Leicester’s finest. Mum and my brother Matt were in the hospital looking after me. My nominee Martin made a brilliant and well researched speech too. It was lovely to get more recognition and to be one of an impressive list of prize winners from past years, including the head of the biomedical research unit, the archaeologist involved in finding Richard III, and a Paralympic Archer.
With each month and doses ticking away since starting Pembrolizumab I had been getting more confident, but it would appear now that that was optimistic. As much as I had shrinkage at the beginning of the immunotherapy all the way back in December, that has not lasted long, the steroids may have affected the efficacy of the Pembro, but we will never know, after all I only had two days of it without any steroids at all. Also the radiotherapy may be the cause of the stability in the head. The head is stable, which is good and is stopping killing me at present. But there is some growth of a couple of lesions in the liver, spleen, a new nodule in the lung and of course the neck and tonsils. All which are growing. The hospital admission and bad results has spooked them from giving me Pembro last week and the plan is to start treatment with a combination of Nivolumab and Ipilimumab today.
Nivolumab according to the Prof is pretty much the same drug as Pembro, because of trials it needs to be given with Ipi as opposed to Pembro. This is kind of the problem with being a guinea pig as these drugs are so new; the prescribing, licensing and funding are all still very much in the air.
I will not and won’t give up but this is becoming quite the marathon. It does not help that I am still on steroids for headaches and for brain swelling and this could be putting me in a Catch-22. It’s not just a marathon for me but for Georgie and my family too. We have so many great plans that just either need to be put on hold or get cancelled. With Georgie she’s just finished her exams and we had hoped I’d be much better. We are all so grateful for your ongoing support.