So, as I reported in my last post I went for my radiotherapy on Monday last week. It doesn’t hurt when they do it but typically it knocked me out for a couple of days and I’ve had some pretty bad pain in my back since. I think the pain is gradually reducing but I’m taking Ibuprofen to ease it at the moment, its probably not doing me much good but relief from the pain is a higher priority. Best it sorts itself out, I’m going skiing in a couple of weeks!
After the last scan results, Helen & I did some research to see if there is anything else we should be looking at, we also receive help and information from a number of sources. As well as considering Colorado for a course of cannabis oil, the thing that comes up regularly is immunotherapy so we decided to have a look at that. I’ve been offered palliative chemotherapy but the very name puts me off if I’m honest, I’m not ready for palliative care yet as far as I’m concerned, thank you very much. Anyway, I can’t get past the feeling that chemotherapy does more harm than good and leaves you in a terrible position from which to fight your cancer.
Immunotherapy is something that comes up in the press quite a lot as the miracle future cure for cancer. The problem is that a future cure is all it is at the moment, new drugs take so long to become available that those that need them now will probably be dead before they can be given them. The idea behind immunotherapy is that it makes cancer cells more “visible” to your own immune system so that the immune system then attacks them and kills them. It does seem a better approach than chemotherapy which just kills all fast growing cells in your body in the hope it gets the cancer cells as well.
Having googled and googled we came up with a couple of likely candidates; Pembrolizumab and Nivolumab. Both are pretty much the same thing just produced by different drug companies, they attack the receptors on the cancer cell surface that cancer uses to hide itself from your immune system so its important that you have the right cancer before having treatment. Neither are new but it takes years to produce the evidence necessary for them to be accepted for use. Both are available on the NHS but only for certain specific forms of cancer where there is evidence of the efficacy, and they have only just become available so are not regularly prescribed. The main area where they have been tested and accepted is Melanoma skin cancer, though they have also shown promise in other skin cancers, head and neck cancer (specifically squamous cell carcinoma) and non-small cell lung cancer (whatever that is).
And that’s where I come unstuck, squamous cell carcinoma of the skin is not itself rare, but metastatic cutaneous squamous cell carcinoma of the skin is extremely rare. Also, the chances of surviving metastatic CSCC for any length of time are extremely low. Rarity and lack of suitable patients put my form of cancer right at the bottom of the list when it comes to seeing if anything will cure it. Finding a cure for metastatic CSCC just isn’t financially beneficial to anyone. Breast cancer? Prostate cancer? Pancreatic cancer? No problems; thousands of patients so loads of money to be made, have some drugs. Metastatic CSCC? Just p*ss off and die quietly with the other three.
Which reminds me, I need to have a full blog post rant about Cancer Research UK and their positioning of themselves as a charity trying to cure cancer when they are just a front for the Pharmaceutical industry. Their current wanky slogan is “Let’s cure cancer sooner!” – well you’ve been robbing people of money for decades so its about time you quickened things up a bit!
Having said all that I did find a clinical trial proposed specifically for my form of cancer, it is scheduled to start in April but it isn’t recruiting yet. I also found the odd scholarly paper where someone had had decent results treating metastatic CSCC with pembrolizumab. Worryingly this talks about treatment with Cetuximab which apparently is a standard treatment for CSCC – I haven’t had any though, wonder why not? More questions.
I can still obtain immunotherapy privately, but the cost is pretty horrendous and if that is the option I choose I need to make sure I have the correct support. So, before my recent radiotherapy we arranged to discuss immunotherapy with my oncologist, but the conversation wasn’t very encouraging. Without going into detail, I didn’t think he was very positive about the possibility of it working, never mind being available and he just went back to the option of palliative chemotherapy. Our thoughts after this depressing conversation were that we’d get a second opinion, skin cancer isn’t exactly my oncologist’s primary field and neither is immunotherapy. What I need to know at this stage is whether my cancer is suitable to be treated with Pembrolizumab or something similar, we’ll deal with the availability and access after we know.
So we contacted The Royal Marsden Hospital and arranged a referral to their Skin Cancer and Immunotherapy team (imagine that? A dedicated team!). I’m hoping they can take a more positive approach and perhaps not just write me off. Documents, scan results etc are hopefully being forwarded, so watch this space.
On to the NHS ……… I’m afraid I don’t have a lot of confidence in the NHS anymore. Nearly all the people you come into contact with are marvelous and doing the best they can but they are just too busy. It has become reactive rather than proactive, it does what it has to there and then but that’s about it, follow up is limited you need to initiate it yourself. When I see my Oncologist, I always try and get an early appointment because the later you are the later you’ll be! Once I’m in I have 15 minutes and after that I know I’m making someone else late, he’ll continue talking to me but we both know I’m pushing back someone else’s appointment. It’s the same with the GP, I can get a short notice appointment as they know I’m ill but if I just want a routine one it’s a two week wait. When I get there I know after 10 minutes I’m stretching my GP’s day and someone else is waiting.
The NHS is also frighteningly inefficient and fragmented, each hospital has about ten different appointment system as each department has a different reception and a different method of dealing with appointments; at York the Head and Neck department has a self booking in system but the Radiology has someone with a box of cards. You can ever be sure you are getting the right attention or whether things are happening as you expect them to be, I always seem to be checking things or changing things; I had an MRI scan booked instead of a CT scan for example, it took me a morning to sort it out. I now don’t use the NHS system to get anything done, I speak to my Macmillan nurse as she knows her way around the system, I’d be lost without her. The latest thing to surprise me was when I recently visited my GP to discuss the results of the blood test and X-ray I had in December, I innocently asked how it compared with the one I’d had in October only to be told “The last set of results we have for you are from 1999”. I must have had a dozen blood tests over the last few years but none have made it to my GP, so where are they? It would seem that I have various sets of notes scattered around different hospitals and my GP! How can that possibly be any sort of system?
Disillusionment with your country’s healthcare system is not something confined to the UK, during our research we came across a blog written by Lars Haakon Søraas, a Norwegian whose wife was diagnosed with lung cancer at the age of 30, here’s the blog. Lars seems much sharper and quicker off the mark than me as he set about getting the most up to date treatment for his wife almost immediately she was diagnosed. He writes a weekly blog of their progress and seems to be spending an awful lot of money on private treatment around the world, with some positive progress. Reading the blog, his frustration with the Norwegian healthcare system becomes obvious almost immediately and quite a few things strike a chord. I feel a dullard in comparison, its taken me ages to take charge of my own treatment, but in my defence I don’t think I have the same resources as him. I dropped him a line and he responded with some great advice and a list of people to contact, which humbled me even more.
Co-incidentally, in The Times Magazine yesterday was an article entitled Live Aid. It sets out the stories of a number of people in the UK who have been pretty much forced to fund their own treatment using crowdfunding because of the unavailability of drugs on the NHS and the prohibitively high cost of private medicine. It’s a route I may yet have to go down myself as even though I can lay my hands on the thick end of £100K at the moment (due to withdrawing my personal pension as I’m unlikely to need it) it’s not nearly enough for what I may need to do. One of the resources listed in the article would have been really useful in March 2015 when I first started out on this saga, Cancer Options is the web site of an orgnisation founded Patricia Peat an oncology nurse with 20 years experience. What has really attracted me to this organisation is the prospect of proactive and knowledgeable support, not just on cancer treatments but also alternative therapies, nutrition and integrated treatment. I’ve done what I’ve done so far on the basis of internet research and trial and error and it would have been nice to have some qualified support. I’m going to have to pay for it but I’m paying for all the things I’m taking at the moment so its nothing new.
So a few new directions to contemplate, wish me luck!