Ramsfan - the cost was about £11K for the treatment. Staying in China is very cheap. I think it will get cheaper as they expand - the major cost is the years of research rather than the treatment itself. Much cheaper than chemo and rads in any case.
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Thanks so much Belinda - I've just posted a looooong thread about the treatment I had in China in the Undergoing Treatment forum. Not sure if that is the right place for it - mods can you move it if it isn't? Thanks.
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I haven’t visited BCC for a couple years, but a few of the secondaries ladies might remember me. To be honest I hadn’t intended to come back, but this morning I accidentally clicked on the link that is still in my favourites when I was looking for something else. So while I am here I thought I would share with you a very promising treatment that I had in China last year. Since I’ve been back I have been inundated with requests for information – getting emails and phone calls from friends of friends and people I hardly know as word spreads, so I thought it would be useful to post about it here and then I can just give people a link to this thread. This will be a really long one I’m afraid, so please bear with me … The treatment is called whole body photodynamic therapy (PDT) and it’s pretty amazing. For most people it is painless, non-intrusive, has no side effects, and can be repeated as many times as necessary until the cancer is gone with no reduction in effectiveness. It seems to work on all types of cancer, is used as a first line treatment for primary cancers as well as on very advanced cancers, and for many patients it even initiates an immune response that can help the body to start fighting the cancer itself. Results have been astonishing, with many stage 4 patients experiencing complete remission – it’s too early to tell whether it is a cure for advanced cancers, but I’ve talked to oncologists working in the field who believe it is. To explain how it works, I need to back up a little.Conventional localised (ie not wholebody) PDT has been available for over a hundred years, has a success rate of 98%, and is widely used for skin and oesophageal cancers. The inventor got a Nobel Prize for his work. It works by introducing a Photosensitising Agent (PA) into the tumour, which as the name suggests makes the cells sensitive to light in a specific spectrum. Most PAs are based on chlorophyll from plants, so are totally harmless to normal cells. The PA enters the cancer cells, and when exposed to light of a certain wavelength a chemical reaction occurs, which produces singlet oxygen. If the light source is strong it produces enough singlet oxygen to literally pop the cancer cell and destroy it immediately - the process takes 45 seconds. If the light source is weaker, it can damage the cell enough that it will eventually die. The limitation of this treatment has been that it can only be used on cancers very close to the skin or where a light probe can reach them like the throat, because the light wavelength used only travels a cm or so into the body. Also the PA can leave the area treated sensitive to light for many months, so patients have to stay inside or buy a burka! The huge new development is that the Russians and Chinese, after over 20 years and billions of pounds worth of research, have developed PDT into a system that can be used to treat the whole body in the way that chemo does, but without damaging healthy cells, hence no side effects. This is pretty much the Holy Grail of cancer therapy. The system available in China uses a PA based on spirulina. You ingest the PA by drinking a foul green liquid, and also breathing it in through a nebuliser. The PA has been chemically engineered to lodge in all cancer cells, but to leave healthy cells after 10 hours – it will also cross the blood/brain barrier to work on brain tumours. As the PA leaves healthy cells so quickly, there is no issue with leaving the body sensitive to light – I was sunbathing by the hotel pool immediately after treatment! So the day after ingesting the PA, when it has left all healthy cells, the whole body is exposed to a light source in the near infra-red spectrum that can travel up to 10cms into the body. You lie a lightbed similar to a sunbed, with LED light directed from every angle. The 10cm light penetration is enough to get to every area of the body for a normal sized person, and to kill individual cancer cells circulating in the bloodstream. In addition, areas of concern or known tumours can be treated with strong localised lasers. Large or deep seated tumours can be treated with an interstitial light probe directly into the tumour. The protocol for treatment depends on the severity of the cancer – I just had the lightbed and lasers, so it was painless and non-intrusive, with no side-effects. The interstitial probes can be uncomfortable for a few seconds, and large tumours will swell as they break up which can cause discomfort and some feel feverish for a few days – this is the start of the immune system recognising the cancer. A single course lasts 8 days, with 4 light treatments. The recommendation for advanced cancer is 3 courses of 8 days each, with a two week gap in between each course. There are some limitations to the treatment, for example if a tumour is situated where the swelling could be dangerous (ie too near the heart), or if it is wrapped around a major blood vessel that could rupture as the tumour disintegrates, it would be too dangerous to treat. They also specify a minimum life expectancy of 3 months as the treatment can take time to work on very large tumours – people for whom it has been unsuccessful are generally those where the cancer was advancing faster than the PDT could work. Bone tumours are also harder to treat than soft tissue as light can’t travel as far through bone. I was treated at a clinic in Guangzhou called Next Generation Photo Dynamic Therapy (NGPDT), which is owned and operated by an Australian/ Chinese company. They are a private clinic with patients coming from all over the world, and are planning a major expansion into 63 countries – they hope to be in the UK within 2 years. A similar but not identical system is available in Chinese hospitals for locals. A recent trial of NGPDT in Beijing on advanced lung cancer patients, who usually have a very poor prognosis, had 1 and 2 year survival rates of 94% and 71% respectively, compared to 68% and 32% for the control chemo and rads group. The NGPDT patients had complete remission in 56% of cases, and partial remission in a further 21%. Details here:http://meetinglibrary.asco.org/content/113379-132. A second trial in Australia on prostate and bladder cancers is in phase 2, and when complete should satisfy the regulatory requirements to bring the treatment to the UK. When I was in China I met people being treated for a large range of cancers, most were very sick and had exhausted all other treatment options other than palliative care (I was not their typical patient, having a very light cancer load). These are the hardest cases to treat, weakened by years of chemo, but even so, everyone I met seemed to be responding. An Australian woman with a large inoperable brain tumour had a 60% reduction in tumour volume after 2 courses of treatment, and was regaining speech and balance. An Irish guy with lung cancer that had spread pretty much everywhere (he described his PET scan as lighting up like a Christmas tree) had cancer in only 1 lymph node after 3 courses. An American guy with large lung tumours described having an interstitial probe and being able to hear the tumours fizzing as they dissolved, and an immediate relief from the pain they were causing. I could go on and on – but you can see some of these people yourself being interviewed on Youtube. As for me, I had no active tumours big enough to show up on a scan when I was treated, so there is no way of knowing how successful it has been – I will have to wait and see. Although I am currently NED having successfully treated bone and liver mets, I know my cancer will recur at some stage, so this treatment was an attempt to prevent that. I went with the blessing of my onc, who had wanted me to have a course of chemo following my liver ablation. I declined the chemo and had NGPDT instead. I have decided never to have chemo or rads again. I only had one course of NGPDT treatment – not the 3 they recommended. But if I need to go back for more I will be on the next plane to China. My hope is that one course will be enough to keep me well for a couple years, and by that time I’m hoping NGPDT will be available in London. In China, the worried well are having NGPDT to prevent cancer – it’s no more onerous than using a sunbed for half an hour! Sorry this post has been so long, but I wanted to explain it in detail. Mods - I'm not sure if this is the correct forum, but didn't want to hide it away in the secondaries forum where very few peeps will see it. You will be hearing a lot more about NGPDT in the coming years – but you heard it here first! Finty xx
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I haven't been on this forum for 2 years, and to be honest didn't really plan on checking in again, but I still have the link in my favourites and accidentally clicked on it! So here I am. So pleased to see this thread is still going and so many familiar names are still going strong - though sorry to see so many new ones have had to join it. I have to say I don't really like the redesign (sorry BCC) - seems much less user friendly than the old site.
My sincere apologies to all those that left messages for me that went unanswered - and to those that worried and feared the worst - I'm just now catching up with a few of them. I'm pleased to say I am very well indeed. It wasn't deliberate rudeness - I just stopped checking in one day and realised I enjoyed not being reminded of the cancer, so never came back. I've been able to spend long periods without thinking about it at all, which has been wonderful, and I've been so busy with other projects. Maybe I'll post an update in the secondaries inspiring stories - I do have some interesting information to share about a pretty amazing new treatment that I had in China - whole body photodynamic therapy (google NGPDT) which has completely changed the way I think about my cancer and the future. So more later.
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If you look at the internals of EPIC you will find a different story. For instance on fruit and vegetables. It found no benefit to eating f & V, and yet if you look at the actually amounts consumed in most countries, it amounted to little more than one serving a day! Little doubt that they found this conferred no health benefit. The same is the case for animal protein - however the protein was made up, the countries in EPIC were consuming much larger quantities than the amount the China Study identified as a risk factor. There were only 93 vegans included in the 500,000+ EPIC cohort - and they gave no outcomes for this group - hence no usable comparison. They did however find they had much lower levels of IGF 1 and much higher levels of the IGF1 binding protein - this is my main concern.
The quote about Campbell being concerned about dioxins in meat completely misrepresents his views - that isn't his main concern at all.
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Lemongrove stomach cancer is linked to countries were food storage is an issue - where pickled foods are eaten in large quantities and foods that grow moulds in inadequate storage - that would obviously not be the case for anyone following a low animal protein diet in the uk. As for protein malnutrition - again not a problem here for anyone who knows even the basics about good nutrition.
I am still being moderated so don't intend to post her much again. I would only add that if you want a study that compares diets and includes data for low animal protein consumption, then the china Study is the only one that I am aware of - and it it the most comprehensive diet study ever undertaken (not the largest, the most comprehensive). Studies of western diets are pretty hopeless in coming to any conclusion about the benefits of limiting animal protein, since there is no cohort under study that eats such a diet. This was the problem with EPIC - simply comparing very small variations in a typical western diet that is high in protein and fat and low in fibre, fruit and vegetables doesn't tell you very much at all - other than that cancer rates are very high in countries that eat this diet.
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There's a major fault with the Harvard study - the cohort was actually eating even more protein than the US national average - so they studied minor differences in a cohort eating massive amounts of protein. They had switched to low fat protein, but increased their intake. Campbell actually has a whole section on the design faults in the Harvard study. If however, they had compared the cohort to anyone not eating animal protein it would have been interesting.
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msmollly you also asked yesterday - and I didn't have time to respond, something along the lines of, what is the logic of cows milk effecting human breast tissue? Of course nobody knows the answer, but I have read hypotheses that go something like this:
Cows milk is an enormously strong growth promoter - full of growth factors and hormones. An infant cow will grow from about 50lbs at birth to about 375lbs at weaning 6 or 7 months later. This is compared to human milk, which results in a much slower rate of growth in human infants. Of course, any milk is a substances designed to only be consumed at the stage of maximum growth in the infant.
We know that the growth factors in milk are biologically active in humans. Numerous studies have shown that adding dairy to the diets of children results in immediate growth spurts, over and above the levels of other foods with comparable amounts of protein and calcium. This has also been demonstrated in adults that are no longer growing, in that dairy effects bone turnover at a higher rate than any other food, and at a higher rate than foods with comparable amounts of protein and calcium. (This alone is enough to concern me - with active bone mets I don't want any stimulus to higher cell division in my bones). So it has been hypothesised by researchers in this field that it is the growth factors in milk that account for this enhanced growth effect in humans - a reasonable hypothesis to me. Other studies support this with evidence that milk raises IGF 1 levels more than any other food.
So, then you have the human breast which is primed to receive chemical messages concerning development during key phases such as puberty and pregnancy. As we know that the hormones (including oestrogen) and growth factors in milk do survive the human digestive system to be detectable in the blood stream, then we must assume that tissues in the breast are also exposed to these additional hormones and growth factors. Given that the bovine hormones perform a similar function to human hormones, it isn't perhaps a great leap to suggest that a lifetimes exposure to these additional chemical messages, to a system only designed to receive these messages for a few months as an infant, could at some stage cause breast cells to become "confused" and initiate cancer.
Interestingly, there is some evidence to suggest that some breast cancers are initiated when we are teenagers, but only begin to grow when we hit menopause.
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msmolly I think I did answer the relevant question you posed to Elinda - but maybe we cross posted - drinking milk containing bovine oestrogen has been proved to spike human blood oestrogen levels, and in blood serum is indistinguishable from human oestrogen - whether that makes it biologically identical or not I don't know.
Regarding charity - Jane Plant donates all her earnings from her books to a cancer charity. I don't know about other authors.
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Lemongrove - of course I agree that medical therapy gives me the best chance - what I meant, of course, is in addition to that, I think my diet changes give be the best chance of improving survival - it is after all about the only change I can make.
Aol - I don't think discussing eskimos is going to help much, but they didn't eat fruit and veg before they adopted a more western diet - they just ate an enormous amount of fish - so you really can't come to any conclusions about fruit and veg from their experience.
msmolly it has actually been demonstrated that bovine oestrogen does survive stomach acid. There have been human experiments where drinking a glass of milk has lead to an immediate spike in oestrogen in the blood stream - this effected men, women and children. We've discussed the research on this thread several times.
aol - I'm sorry but I would have to disagree strongly with you about alcohol - the research is pretty clear. For very small amounts of intake (I think for women it was 0.5 units per day), there can be a balancing benefit of decreasing heart disease. But as my understanding is that you regularly drink 6 -10 units a day, that would actually increase your risk of heart disease as well. I think it would be very misleading to tell people on this thread that such high levels of consumption are good for you.
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oal - I don't know much about eskimos, but this article suggests that like all traditional cultures their "lifestyle" cancer rates are increasing as they move away from their fish based diet and adopt a more westernised diet:
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Sorry msmolly - only time for very brief reply - daughter's 20th birthday party to "supervise". I don't think veganism prevents cancer at all, and don't think I have ever said so - I think reducing consumption of animal products reduces the risk. There are too many causes for one change to prevent them all. But as someone with active cancer, I also think it gives me the best chance of slowing its progress by avoiding unnecessary growth factors.
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Msmolly I don't doubt that all those issues you mention are a factor, but I do find it odd that you don't think that diet plays a role at all. Diet is after all central to our general health and is almost the only factor in the other western diseases - or diseases of wealth - heart disease, diabetes and obesity. In many traditional cultures, it is diet that is changing much faster than things like fertility rates. I've just come back from Tanzania where one single change in the national diet is causing a huge health backlash. Their staple - maize - was always eaten unrefined. Over the last 20 years they have changed to refined maize, and as a result have a massive increase in obesity and other health issues. And you can literally see the changes as you drive around, as you get nearer big towns and cities the people get fatter.
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I suppose if I was just looking at life expectancy or maybe thinking about heart health that would be a very reasonable decision to take. And in fact, it is very similar to the diet I was following before dx with the exception that I was eating much too much dairy. But having bc, I would also factor in bc rates in those countries, maybe from this table:
But my decisions about diet were more targeted than that - my decision making process went like this: first I needed to lose weight fast, and I have - 4 stone in 15 months. That meant eating masses of vegetables. I then decided to eliminate dairy because to me the evidence was strong enough that I couldn't take the risk of continuing, and because I couldn't lose weight if I didn't. Put bluntly if the choice was cheese on toast or an earlier death, even if the chance of it being the correct decision was only 5%, I would still take it - people do chemo for less benefit. I haven't eaten red meat for a long time, so no change there, I've never liked meat and would just eat chicken maybe once a week. I then gave up alcohol except for the occasional glass, because again the evidence is very strong for the link with bc, and to help weight loss. Then I decided to make all my meals from whole foods, low sugar, organic where possible, and very high in vegetables. Having taken all those decisions for general health as well as bc reasons, I finished up with a diet similar to an Asian diet almost by accident.
But I would also add that I haven't taken my decisions just based on population statistics and correlations that can be faulty. My biggest decision - eliminating dairy - came after reading as much as I could about IGF 1 - and I read probably over 100 research papers. I find the evidence for the role of IGF 1 in cancer progression very strong, and dairy raises IGF 1 levels more than any other food. Dairy also promotes growth in bones more than any other food, and having active bone mets, that seemed intuitively a bad idea - although I don't have enough knowledge of the processes involved to know for certain. But as dairy is unnecessary for bone health, again why take the risk? So another of my strategies has been to keep IGF 1 levels low. The same with oestrogen - and the evidence that diary raised human oestrogen levels was just the icing on the cake. It seems meat consumption does also, but that isn't an issue for me. Finally sugar - I've read a lot about insulin and breast cancer and there seems enough evidence linking raised insulin levels and breast cancer to make cutting sugar out worth while - again it's helped with the weight loss .
Sorry that was longer than I planned - but I just wanted to explain that I wasn't blindly following the diet of any particular country, quite a lot of thought has gone into it.
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I'm so sorry you have had this news. I'm also a little surprised that you have been told that they can only control it at best. If the only cancer is the new primary, and you have no spread beyond the new primary, why couldn't you be treated curatively in the same way your original primary was? Unless I have completely misunderstood the situation, I think I would be asking for a second opinion pronto.
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