Posts Tagged ‘Care Oncology Clinic’

Alternative or Integrative Treatments

Those of you who follow my blog will know that I’ve been exploring alternative treatments (treatment not available on the NHS) for some time. However, there’s a lot of quackery out there in cancer world and you have to tread carefully if you don’t want to be ripped off. I myself was recently fleeced (thankfully by only a few hundred pounds) by one such ‘guru’.

477px-WPA_quack_poster

I use the word alternative loosely, because the treatments I’m exploring are more integrative than alternative. They include innovative conventional treatments such as Peptide Vaccines and Immunotherapy along with evidence-based supportive therapies such as Hyperbaric Oxygen Therapy and Hyperthermia. Whackier alternatives like shark cartilage and snake venom don’t appeal to me, unless of course there is evidence backing them up.

Proactive patients looking for viable alternatives and the newly diagnosed often find themselves swamped with information. Panic sets in and internet research becomes an obsession. Hours and days are spent trawling science journals and chat forums for the latest developments in treatment and clinical trials. This is mostly how I spend my time.

Cancer treatment in the UK is strictly regulated. All treatments have to be clinically proven before becoming available to the general patient population. This is good in lots of ways, because not only do patients know they are getting evidence based treatment, but that they are protected from quacks and charlatans. On the other hand, it means that doctor’s are restricted by the treatments they can offer.

A good example of this is the growing use of ‘off-label’ or repurposed drugs by many patients. The drugs I get from the Care Oncology Clinic in London are all prescribed ‘off-label’, which means they are prescribed for an alternative use. Metformin is one such drug, which as well as being a diabetes drug has shown anti-cancer properties in numerous trials.

I’m lucky to be treated at one of the best cancer centres in the world (The Christie), however even they don’t have access to every new development. Immunotherapy drugs already approved in the US, are still being trialed in the UK.

Immunotherapy is the ‘magic-bullet’ all cancer patients are chasing today, however being accepted onto a clinical trial is often a case of luck. You have to be in the right place and have the right cancer at the right time. Even if you find a suitable trial, the eligibility criteria are so strict that many patients are deemed ineligible. In my case, brain metastases rule me out of the majority of trials.

German clinics

Despite having disease in my liver, lungs, bones and brain, I’ve been able to enjoy a reasonable quality of life until recently. Unfortunately the last two drugs have failed and CT scans have shown progression in all areas of my body.
The disease and it’s treatments are beginning to take their toll. This has forced me to explore treatments not currently available in the UK.

Germany has one of the highest cancer survival rates in Europe. Their clinics offer a more integrative approach along with a wider variety of treatments and off-label drugs than the UK.  Peptide Cell Vaccines, ImmunotherapyOzone Therapy and Photophoresis are offered alongside more conventional treatments like chemotherapy and radiotherapy.

There are no guarantees with any cancer-treatment, however I feel that going to Germany will give me the opportunity to tackle the disease in a different way, whilst giving my immune system a much-needed boost.

This is where I need your help. Treatment at a private clinic in Germany doesn’t come cheap and having been a cancer patient for nearly 4 years, I’m not in a position to fund this myself. I do have some pride so it’s taken a lot of courage to ask for your help.

So here it is my latest fundraiser: https://www.youcaring.com/killerkath

You were all so generous two years ago when I asked for your help in raising funds for my Tumour Profiling.

I’d be so grateful if you could help me again xxx

PS. For those in the Manchester area, friends are organising a charity ceilidh on my behalf. Come along and have a twirl!!

 

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In the words of my misanthropic hero, Larry David, this week has been ‘Pretty, pretty good‘!

I had some good news which hasn’t quite sunk in yet. I found out the tumours in my liver and lungs have either shrunk or remained stable. I now have one, small but stable tumour in my liver and a few small tumours in my lungs. The bones mets (metastases) are also showing signs of healing.

I didn’t expect to be here now. When I was diagnosed with brain mets in February, things were looking really bad. If you remember, around that time I also had progression in my lungs and liver. I assumed it was the beginning of the end.

I’m not getting too complacent because this can happen with treatment. A drug will work for a while until the cancer becomes resistant, leading to further progression.

But, I feel really well at the moment. I’ve recovered from surgery and the side effects of my current drug regime are minimal. This means I’m getting my fitness back and I’ve felt well enough to go hill-walking over the past three weekends.

The synergism of the Care Oncology drugs with regular treatment (Everolimus and Exemestane) seems to be working really well for me, as I’ve had two lots of good scan results since starting this combination. 

For the first time in a year I’m beginning to feel like a normal person instead of a cancer patient. You’ve got no idea how good that feels.

I’m off to Italy on Friday, but I’ve got lots going on when I return. Killer Kilts relaunch is planned for the beginning of October, I’m doing my yoga foundation with the British Wheel of Yoga and I’m thinking about going back to university. Life is pretty, pretty good!

This was a post I started a few months ago in the midst of brain-mets mayhem. I didn’t write much around that time, mainly because my brain had been fried and I found it difficult to string a sentence together. Thankfully my brain has recovered, or at least most of it has.  The gamma-knife seems to have affected the spelling part of my brain so please forgive the odd spelling mistake.

I had some goodish news last week. My latest CT-scan results show that the tumours in my lungs and liver have either shrunk or remained stable. Apart from NED (no evidence of disease) or remission, shrinkage and stability are the two words you hope for when you have Stage IV (advanced, secondary, metastatic) disease. But, and there’s always a but at these appointments, I wasn’t surprised when they told me that I now have metastases (or secondary tumours) in my bones. A mixed bag of results, but as a wise friend pointed out, the bones mets won’t kill me.

The build up to these appointments is massive and it’s something you never get used to. When you’ve been in the game as long as I have, you know that a positive attitude has naff all effect on scan results. There’s no point building yourself up for good news. On the other hand, you don’t want to be too pessimistic. Try as you may to box it away, it’s incredibly stressful having this continually simmering away in the background. If you’re anything like me, you spend the last few weeks, pre-scan, being a complete cow to everyone you know.

I hope so...

I hope so…

Unless they’ve got stable disease, the majority of patients with secondary cancer go through this rigmarole every 3 months. Beginning with shock/elation/disappointment at the latest scan results; followed by acceptance of new symptoms or side-effects; leading up to the scanxiety of the next scan.

My recent scan results were a bit of a shock, and not just to me. The last drug I was on (Tegafur) didn’t work, and I’ve had very little in the way of active treatment since my previous scan at the start of February. I worked out that I’d only had 12 days of Everolimus and 2 months of Exemestane before my most recent scan. The Exemestane wouldn’t have worked immediately as I had to restart Zoladex injections (the ovary switcher-offer) in order for it to be effective. Not long enough for either drug to have had much of an impact.

However there’s potentially another explanation for my good scan results.

Following scan-mageddon in February an article in my news-feed caught my attention. The reason this particular article grabbed me, was because it talked about using everyday drugs such as antibiotics to treat cancer. After being given a prognosis of less than a year, the professor mentioned in the article ‘cured’ his untreatable brain cancer with a cocktail of everyday drugs. He recently celebrated 20 years of being disease free.

Fast forward 3 months and I’m now taking part in a long-term ‘study’ at The Care Oncology Clinic in London. They prescribe a combination of ‘dirty drugs’ which I take alongside my regular treatment. In addition to Everolimus and Exemestane I now take the diabetes drug Metformin, a worming tablet called Mebendazole, an antibiotic Doxycyline along with statins.

The so-called dirty drugs work by targeting multiple receptors or cancer-signalling pathways. Metformin for example reduces blood glucose, lowers IGF-1 & is also an mTor inhibitor (like Everolimus). There are many current trials using Metformin as an anti-cancer agent. Mebendazole is believed to slow the growth of brain tumours. Whilst Doxycycline has been shown to reduce tumour burden in breast cancer bone metastasis.

I have now what is known in the trade as a ‘full house’: lungs, liver, brain, bones. There aren’t many places left for the cancer to go. But strangely I feel really well, better than I’ve done in months. My body is responding well to a lower dose of Everolimus and as yet I have no major side-effects, apart from loads of energy. Result.

I had so much energy last weekend I began to wonder if something was wrong. I managed to pack in yoga, circuit training, Killer Kilts photo-shoot and a 12 mile cycle. It’s so nice to have normal energy levels again.

I’ve changed so many things in the last few months (my diet, my drug regime and the additional dirty drugs) it’s impossible to say what exactly is working, but I’m doing something right. Maybe it’s a combination of things. If you want to know more about the Care Oncology Clinic, drop me a line or contact them directly.

http://www.independent.co.uk/life-style/health-and-families/health-news/cancer-drugs-trial-for-when-standard-treatment-is-not-viable-shows-incredible-signs-of-success-9804279.html

http://www.pharmaceutical-technology.com/features/featurebetter-together-combining-therapies-to-slow-down-cancer-growth-4454747/