Yesterday my wife Helen and I set off from York at 09:30 and finally got back home at 23:30, most of that time was spent on trains or crossing London, in between all this I had a consultation with the Professor of Experimental Cancer Medicine, Cancer Research UK Centre, Southampton University Hospitals which lasted just over an hour.
In my last post I mentioned that I felt I needed to find someone to champion my treatment and look into my case, someone above the level of the oncologists who see cancer patients day in day out. So I googled like mad and came up with a list of expert researchers whose research interests included immunotherapy and/or skin cancer. I emailed all of them in the hope that a few would take an interest. To date I have received 5 replies; 3 of the “Sorry to hear that, wish I could help” type, one from an administrator who said she’d pass my email on and (happily) one extremely positive email from a Professor at Southampton.
He was interested in my case and particularly the amazing response I’ve had to my treatment, though he did say that perhaps I had recovered too much for his team to gain any meaningful information from me. Sorry about that!
The most interesting thing the email said was:
We have certainly had patients funding their own ipilimumab or pembrolizumab treatment at my centre, so I am slightly puzzled as to why your oncologist was not able to arrange this.
I’d been told back in October when I first enquired that there was no way I could privately fund my treatment in the UK because the drugs were not licensed for use on my cancer. This seems to vary round the country so the next step was to get a referral to the Immunology Team at Southampton University Hospital, which my oncologist did straight away and wrote a really good letter on my behalf.
So that’s how I ended up in Southampton yesterday, but the reasons behind trying to get somebody in the UK interested in my case are something I haven’t really touched on.
Firstly, I simply can’t continue to fund the treatment in Germany because of the cost, so I need to either find funding or find a cheaper way of doing it. The Hallwang Clinic is a business and so there is always this nagging doubt as to whether the treatment I’m getting is all necessary and if is it reasonably priced. Initially this wasn’t an issue; I was dying and reckoned that Pembrolizumab was my only chance; the Hallwang clinic was the only place that I could find that would give it to me. They added a few more things and it wasn’t long before I realised it was working, I was getting better. But I don’t have a bottomless pit of money, so we decided that after the minimum term of treatment we would review things and look for alternatives.
Secondly, my response to my treatment has been amazing; most of my tumours disappeared while the rest significantly reduced in size in less than 3 months of treatment, I might be clear of cancer now after 4 months. But what has been responsible for this? Can what has happened to me be used to help others? Its really difficult to tell because the Hallwang Clinic do not document their cases so there is no academic record of my treatment for others to use. They are also a bit cagey about some of it; I still don’t really know what the vaccinations I’ve had consist of or what they are supposed to do. If there is something to learn from my case that could help others in my situation not just die, that would be exceptional and I’d like to help.
Essentially I’m looking for a way of continuing my treatment that isn’t going to bankrupt Helen and I but gives me a good shot at surviving long term. If my case can be of help to others that would be a bonus.
So what did he have to say?
Well first he dissected my treatment report from the Hallwang Clinic; he wasn’t too enthusiastic about what they had done, with the exception of the combination of Pembrolizumab and Ipilimumab. He reckoned that a lot of it was unnecessary and some of it might be counter productive, and he gave some pretty good reasons for his opinions. This all came as a bit of a shock, had I paid for things I didn’t need? The truth is I don’t know and neither does he, but he is far more qualified than I am to judge.
So then we came to “what next?”. I outlined our plan that we had decided not to continue treatment every three weeks as the Hallwang Clinic wants us to, mainly due to cost but also because we don’t actually know where we stand at the moment, I could be clear now or not. We had decided that to find out where we stand we should have a PET CT scan in July or August then decide what to do, either more treatment or some sort of maintenance plan.
“An excellent plan” he said, however he also said “If you are clear, don’t bother having more treatment, people whose cancer clears from this treatment stay clear”. Wow!
I mentioned I would have to get the PET CT scan privately and he asked why; I told him I could only get a CT scan with contrast on the NHS, presumably because of budget restrictions. “I will order you a PET CT scan” he said, and he did! I may have to travel to Southampton for it but it won’t cost me £1500, I was really warming to this guy by now.
We moved on to how do I get more treatment if I needed it, we both felt the key element of my treatment had been the combination of Pembrolizumab (Keytruda) and Ipilimumab (Yervoy). He mentioned that the doses I had received were low, which probably accounts for the fact I have had very little in the way of side effects, but as they seemed to work there was no point changing the dose. He told me that I simply had to purchase the drugs from the manufacturer and they would administer them at Southampton, he agreed to get costs for me as well. It looks like they manage to combine privately funded drugs with NHS care, which again I had been told wasn’t possible. It seems that they interpret NHS guidelines differently in Southampton.
I mentioned that my oncologist in Leeds was trying to put together an Individual Funding Arrangement application but we were uncertain as to what treatment we were asking for. He agreed with our Leeds oncologist that there is little chance of it being granted (but I still want it submitting!) so it looks like we will still be funding some of the treatment but at a much lower cost.
So we left with a PET CT scan coming up soon, costs to be made available for the drugs and a plan for the future should I need more treatment that doesn’t involve us going bankrupt in the process. Halfway up the corridor on the way out Helen and I hugged each other and were almost in tears. We’ve gone from being on the outside to back on the inside.
Now some would say “Your oncologist in Leeds has got it all wrong, you could have done this all along”. Well not really, the Trust he works for probably interprets the NHS guidelines differently; that’s what they are – guidelines. Also he probably doesn’t have the budgets that the guy in Southampton has; we’re talking a Cancer Research UK Centre and he’s the Professor of experimental medicine. My oncologist in Leeds has supported me all the way through this in a way that other patients’ oncologists haven’t supported them. I might get a bit frustrated with him and the NHS but that’s mainly because I find it so difficult to get what I want, there are a lot of people trying to get what they want out of the NHS.
Some might also jump on this post and say “I told you The Hallwang Clinic was ripping you off, they take advantage of desperate cancer patients!”. But let’s put this in perspective – they saved my life! If I hadn’t gone there in March (when it was my only option) and they hadn’t treated me, I would be dead by now. I went into it with my eyes open, I thought it was expensive but if anyone can put a price on life please let me know. I’m eternally grateful to The Hallwang Clinic for what they have done for me and bear them no malice at all.
The relief at knowing that there is something that should fix me if I need it and that it should be achievable in terms of cost has left me drained. A few other things have happened since my last post but I can’t be bothered to write about them now.
Thanks for reading this drivel and thanks for your continued support.