A Bullheart Christmas update…

Hello the good folk of LFGSS,

I cannot remember the last time I even logged on to the forum – I have been lurking, but for reasons that will become more obvious in a bit.

What has happened since the summer? We ended treatment that was costing us £2972.35 per four week cycle, after having spent nearly £30K over a 7 month treatment period. Scans showed it was effective, which was grand, and we packed our bags and headed of to the south of France for a disastrous two week holiday with the extended family. My MIL had a ‘moment’, based on an idea to shelve HRT treatment, leading to some complex behaviours that resulted in moments of tension(!), and in the week preceding the trip I had started to feel the the pain in my abdominal area was potentially a little more sinister that we had given it credit for…

As the trip went on, we contacted the palliative care team back in the UK that has been dealing with my pain, asking advice – theirs was to return home ASAP so that I could be scanned and reassessed. Unfortunately I had an itch that needed scratching about 45 miles away in the form of Mont Ventoux, and so we carefully planned a day to make an early ascent. Day came, I rode up hill, took pics to verify the achievement and then got in the car and curled up in a ball until we got back to the chateaux.

You can guess the rest of this Greek tragedy – on getting home, and receiving the scan results we find a significant spread of active sites throughout my body, and the game begins again; what’s treatment next? How will it impact home? What about the family, how will they cope? My wife has just finished her Midwifery degree – what does this mean for her plans? My poor **** kids – will they ever experience a ‘normal’ lift.

In terms of medicine/treatment, there is little left to turn to – the downside of being the longest living AS survivor is that ten years of treatment tends to mean you’ve ticked ALL the boxes of things tried.

Treatment – there were three options available. Trebectidin is shite, and felt to be pretty ineffective in the worldwide sarcoma community to be a redundant treatment programme. The second, Ifosamide, I’ve had before in a combination therapy which was effective- but with some very complex side effects that can make life feel ‘not worth living’. It is brutal, and as a standing regime it really does impact on the family and wider social support groups. My poor kids don’t really have a dad at the moment – absolutely breaks me, as I’ve always worked hard to reduce the impact having cancer might have on then – but at some point I’ll have to sit down with them an explain that daddy is not going to get better.

How on earth do you start that conversation?

So those were two of the options available – both from the NHS, with no additional cost. There was a third treatment protocol not available on the NHS, but this is (again) prohibitively expensive and as such was eliminated from the rare cancer fund in 2012. It has favourable response rates in STS, and is used everywhere else successfully to treat it.

We knew about this, and so obviously the question was “How can we afford this treatment?” At £3000 every three weeks, it’s prohibitively expensive; I decided a long time ago that there was a cost effective component to all of this, and that I didn’t believe in making strangers pay for a course of treatment with a poor visible outcome. That’s why we haven’t fired up the fundraising activities to date.

I started to ask questions about the availability of this drug – it’s manufactured by GSK, in the Indian Continent, which is tricky, but interestingly (and as a first for me) is only available in pre-pack tablet Forman for oral consumption. Additionally, it’s not on the banned import schedule of cancer drugs, nor is it difficult to obtain – you can buy it from any pharmacy in India over the counter.

So when pushed my oncologist admitted that there was nothing to stop me from importing the drug here. The difference in cost is absolutely mind blowing- by our calculations it’ll cost less that £590 for a months treatment and delivery here in the UK. There are risks that we’ve been warned about – principly relating to fake medications being sent out – and my hope is that through the post here puts us in touch with someone who might be prepared to analyse what we’ve receive from India

My oncologist has suggested that a lab with a biochem centrifuge would be a gold standard approach to finding out whether it’s Votrient or rat poison!

Another issue that you folk might be able to help with is having a contact in India that can carry out the transaction face-to-face. We’re happy to pay anyone that might be able to help…?

So that’s where we are at the moment. I’ve lost 28kg over the last six months, and am restricted from driving and cycling because of the size and proximity of the metabolic sites. I’m in constant pain, and no amount of morphine seems to alleviate this – I am therefore a grouchy, surly bastard on a daily basis, for my long suffering wife and beautiful children, which I hate.

Thanks for listening folks. Again, no pity wanted, just felt that those of you kind enough to have supported me over the last 9 1/2 years deserved an update. No giving up, no bowing down. Fuck you sarcoma!

mate hats off for doing ventoux. and i echo your fuck you sarcoma.
thanks for the update keep going.
much forum love to you and yours

@amey could buy you some drugs

@Chalfie might know people who still work with centrifuges - bit of a long shot perhaps.

I will ask someone else I know not on here.

Thanks for taking the time to respond folks; any line is a potential life line at the moment...

Really happy to hear that the previous treatment did a job but so sorry to hear you're back to chasing options.

I've put the feelers out for both a lab and somebody in India. Long shot but who knows...

My life is one longshot at the moment...

Having bought grey market meds from India to treat myself where the NHS wouldn't I never had any bad experiences, but the potential is there. I don't think you'll get rat poison but it might not be as effective as it should be. So, given the gravity of your situation my first thought is that you deserve proper medical guidance, support and care.

If people are willing to help fund you as before-and I'm sure they are-then I would roll with it and keep up the fight. Given how much money we all piss up the wall at this time of year I would much rather some of it went to you, and by proxy your family, than into a multinational's offshore bank account.

You're inspirational and I think you give everyone hope that we or our loved ones might be capable of meeting a similar illness with the same positivity and stoic determination.

So, don't be shy about sharing a gofundme link and hopefully that opens up more options.

My financial situation is very different to how it was during your last round of fundraising, and my business partners are in a similar boat but id be delighted to try to find some further funding for your treatment. Why not just appeal again and see where it gets you? You have nothing to lose...

Crikey.
Well.
I don't know anyone off the top of my head.
What test do you need to do? That'll help.

Eye roughs is probs best bet for people in medical labs....