It took a bit longer than I thought to get this organised; I had to have my tissue samples sent from York Hospital to The Hallwang Clinic which took a week or so, then I had to wait just over a week while they were tested and the clinic put together a treatment plan, then book some train tickets, flights, transfer etc and fit in with availability at the clinic.
Helen and I finally arrived late on Friday evening of 11 March, not helped by the taxi driver dropping us in the wrong place. The clinic had kept us a meal without being asked and showed us to our room. After trailing through Manchester airport, Stuttgart airport and an unplanned half mile walk (uphill) from where we were dropped off, I was ready for my bed.
After breakfast on Saturday morning they swung into action, their attitude was that they needed to find out exactly how I was at that moment rather than rely on any previous diagnosis and 3 month old scans. So quite a lot of blood samples were taken and I had infusions to flush my liver, kidneys and protect my stomach. I finally met the doctor who had discussed my treatment and we went over in detail what he proposed. He also said he wanted me to have a PET CT scan so he had a baseline to work from.
Essentially the main 3 treatments were going to be:
- A vaccination strategy whereby they injected me on 5 consecucutive days with a vaccine designed to train my immune system to recognise the receptors on my tumours (that they had identified when testing my tissue samples) as being foreign and so attack them.
- An Anti-CTLA-4 immunotherapy drug called Ipilimumab designed to inhibit the receptors/antigens on tumours that inhibit the immune system.
- An Anti-PD-1/L-1 immunotherapy drug called Pembrolizumab which I discussed in this post and is designed to enable tumours to be visible to the immune system so it attacks them.
None of these treatments are available to me in the UK yet all have had really good results in trials on similar cancers to mine and in a few cases on my specific form of cancer. Here’s a high profile story on the success of Pembrolizumab.
These treatments are relatively new, only having been approved for use in 2016 and are not without their risks, but they are far less debilitating and have much more chance of success than the standard treatment of platinum based chemotherapy offered to me in the UK.
On Sunday I began the treatments but not before a bit of a fuss, apparently the blood tests had shown that I was really ill (apart from the cancer) and I was put on antibiotics for the week. So on Sunday I had the Pembrolizumab (amongst other things) and a vaccination, on Monday I had the Ipilimumab and a vaccination. For the rest of the week, as well as regular infusions to flush my liver, protect my stomach etc, I had a vaccination each day.
The Pembrolizumab and the Ipilimumab both knocked me out for the rest of each day but i didn’t take long to recover. Which was good as on Tuesday I set off at 07:30 to a hospital near Stuttgart for the PET CT scan. A German hospital doesn’t seem the same as a UK Hospital; there are not hundreds of admin staff wandering round with bits of paper (or kettles) and there are not hundreds of people in waiting rooms. I had a little look at the German medical system and it doesn’t seem to be much different to ours (supposedly funded from National Insurance contributions), maybe they just run it better. We went to the main reception and they told us where we needed to be (taxi driver acting as interpreter).
The doctor in the scan department spoke pretty good English, explained to me what would happen and apologised for running slightly late (!!), there were major roadworks near Stuttgart so a number of patients had been late. I had the scan, the doctor said the results would be with the clinic that afternoon (!!!) and if I waited 10 minutes they would give me a CD with the images on (!!!!). We got the CD and headed back to the Hallwang Clinic, I wondered how much this was adding to the bill.
Now I knew I was in a pretty bad state and that my cancer seems to have rampaged round my body in the months of January and February but evidently it is pretty bad. The results of the scan shows that my cancer has metastasised to everywhere in my body (including my brain) apart from my lungs and my liver, I thought I had a tumour in my lung but apparently not. I’m in a worse situation than I thought and a much worse situation than my doctor thought. He phoned after receiving the results to discuss possible treatment options, but in the end we decided to continue doing what we were doing at least until we know if its working or not.
All of a sudden it was Friday and we were flying back that evening. My overall impression of the clinic was that the people there are really concerned about you and want to cure you, they really look after their patients. I met and chatted with a number of other patients there; some had miracle stories of how they had recovered after being told they had days (and in one case hours) to live. Some were at the start of their treatment and were very ill, some had been treated for some time and were still very ill. Not everyone has a positive outcome from their treatment. There were quite a number from the UK who, like me, had come to get treatment they couldn’t get in the UK either because it isn’t approved or budget restrictions mean they have been refused it.
I felt better at the end of the week than I did at the start but I noticed I’d started having difficulty eating, particularly solids. I could eat but I couldn’t be bothered. A week of spending every morning with drips putting things into your body, having blood taken and afternoon vaccinations had been a bit of a trial, but I wasn’t expecting a holiday.
I left with a whole load of medications including antibiotics and some chemotherapy tablets, most were just continuation of the daily treatment I’d had; liver flush, stomach protection, a probiotic. The idea behind the chemotherapy was to try and control my cancer so that it gets no worse whilst we wait to see if the immunotherapy works, which may take up to 6 weeks. This is an interesting approach to chemotherapy though; rather than pump you full of it and then wait a couple of weeks before doing the same again, the idea is to have a daily low dose which will have a similar effect without the horrible side effects, sounds good to me.
The trip back was tiring, despite staying in Manchester overnight. The trek from terminal 3 to the train station absolutely knackered me which shows how weak I am. I have to return every three weeks for at least 3 months for shots of Ipilimumab and Pembrolizumab as well as a booster vaccination. The visit was expensive, costing just short of £60,000 for the week and the return visits will cost between £25,000 and £30,000 each, mainly due to the cost of the drugs. I’m gathering as much money as I can from various sources but I don’t know if its going to be enough, so I’ll probably start a crowdfunding campaign as that is how a number of patients are funding their treatment, stand by for a begging letter.
I’ve been back just over a week now and its too early to tell whether things are working or not, but something is going on in my body. I’m still very weak; going upstairs has me puffing and blowing, I have a cough which is sometimes good and sometimes bad. I sleep pretty well but do sweat a lot overnight and my eating is improving; I’m feeling hungry again but still not managing anything more solid than an omelette. The encouraging sign is that a few of the lumps visible on my body have got significantly smaller with a couple almost disppearing. Also the area on my stomach where I was vaccinated (right next to a rather large lump) has come out in a rash and itches like hell, this is apparently a good sign, I also think the large lump has got a bit smaller but I might be imagining it.
I’m heading back to Germany a week today for just a couple of days at the clinic, fingers crossed I get no worse and things start working.