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The future of cancer treatment - no more chemo and rads?

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Re: The future of cancer treatment - no more chemo and rads?

Hi Chlo, I am new to the forum and this is my first post, although I got my diagnosis two years ago, yesterday. I did read that Finty is no longer active on the forum but someone had read posts, which she thought were hers in another group, if I can find it I will let you know. I too am interested in PDT, although I don't yet know too much about it, but am keen to find out more. I'd also like to know what Finty is doing now, as from what I've seen of her posts she has a similar approach towards this disease as me, but seems a lot more knowledgeable! I was stage 4 on diagnosis, small spread to 3 vertebrae in my neck, but unable to find my primary although know it is breast. I had been going to my GP for 4 years saying I could feel something, mammograms and ultrasound all clear, only found on biopsy in lymph nodes. I have been taking Letrozole since and 'touch wood' have responded well and have been NED since the scan I had 3 months later, but I know this will change and want to be fully prepared when it does! I was a nurse and while I have faith in the NHS not sure if chemo/radiotherapy is the route I want to take. 

Please let me know how you get on, best wishes, Kxx

 

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Re: The future of cancer treatment - no more chemo and rads?

Hello Finty

 

I have been diagnosed with breast cancer and upon doing some research, I came acrooss your post her which I read with great interest. I know its from a while ago and i hope you are stil on the forum.

 

You mentioned you went to the clinic in China to have PDT. I am keen on that treatment too but I wanted to hear your experience and where you are now, a few years later. The research isnt 100% on PDT and I am looking to see what people have experienced and whether the cancer has gone, or returned or whatever. I can private message you if you prefer to.

 

Has anybody else had any experience with PDT, please please, would you kindly share it.

I am also looking for info on PDT clinics nearer to the UK. China seems so far away and my husband won't go on a plane.....even for the cancer !! ( upsetting but I am just getting used to it ). There was mention of Dubai and Lebanon, but cannot find any links on google.

 

thank you

Chlo

 

 

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Re: The future of cancer treatment - no more chemo and rads?

I was just looking at varous threads on BCC  and came across this Thread. Its so different in style and content  from most threads on here .  Many cancer patients are at a very vunerable stage in their lives, and I hope no one is being taken advantage of! Just a thought always ensure that there is scientific evidence behind any treatment you undertake .

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Re: The future of cancer treatment - no more chemo and rads?

Thanks Magda - I will.

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Re: The future of cancer treatment - no more chemo and rads?

This is really interesting stuff. It's definitely something that I'm going to look into. Itis the first alternative ( not talking hocus pocus) treatment to the chemo route that I've considered as a reality and it gives me hope for the future as we can't continue to mutilate , burn and poison there has to be something else and I pray to god this could be it.
Keep us posted Finty!

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Re: The future of cancer treatment - no more chemo and rads?

Yes there are numerous trials of slightly different systems, so it's quite confusing. I'm hoping that it will become standardised eventually, but as most of the work is being done in the private sector that may not happen.

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Re: The future of cancer treatment - no more chemo and rads?

Thanks Finty. I had chemo yesterday and I was listening to someone else who had heard that this therpay is under trials and has been licenced somewhere for trials. The radio was on and I couldn't hear where but it is exciting. x
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Re: The future of cancer treatment - no more chemo and rads?

Furry Jen - yes of course. PM me and if you want to chat on the phone I can give you my number. Sorry for the delay in replying - I saw in Active Topics that you had commented on the thread, but when I went to the thread I couldn't see your comment until today - really strange. Has anyone else had this prolem?

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Re: The future of cancer treatment - no more chemo and rads?

Interesting thread indeed. Just adding this line, so I get to see the updates via email.

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Re: The future of cancer treatment - no more chemo and rads?

Hi Finty
thank you very much for replying and the information, I'm really intrigued by this therapy. I'm going to lookmintomit a bit more. Would it be ok to contact you again should I have any more questions?
thank you
furryjen
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Re: The future of cancer treatment - no more chemo and rads?

Hi all,
Finity - this treatment sounds amazing thank you so much for sharing the information and your experiences, I take daily green juices including spirulina and wheatgrass I done this from the start of my dx back in Feb 2011 (lung mets) and initially for the first year took hemp (cannabis) oil that we made (very potent stuff) and would like to add that I dont sell it and making the hemp oil is so involved and in this country against the law. I dont take it anymore but it certainly helped me through chemo/surgery and rads I told my onc about all the extra treatments including the hemp oil he told me that quite a lot of his patients take cannabis but he'd never heard of taking in as a oil in a cap most smoked it, obviously smoking it just wasn't an option for me with lung mets. Glad too hear that your doing well as am I being stable for the past 2 years xxx
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Re: The future of cancer treatment - no more chemo and rads?

Dear All

On Behalf of the Clinical Team

It’s always interesting to read posts about newer cancer therapies, such as this one Finty has shared.

Conventional Photodynamic therapy (PDT) is approved and effective for some cancers but more evidence is needed to understand its best applications (type and stage of cancer).

Research in to newer or modified versions such as NGPDT and SDT is ongoing. This means their benefits and harms are not supported by robust scientific evidence. They are not licensed or available on the NHS and can be very costly. Some health experts have raised concerns about these treatments and the links posted by other people on this thread give more detail.

It’s important for anyone considering such treatments to discuss it with their specialist team in order to reach the best decision for them.

With best wishes

Anna

On Behalf of the Clinical Team

Member

Re: The future of cancer treatment - no more chemo and rads?

Furry jen - I forgot to reply to your question about the green stuff - it's made from spirulina, which seems to be a form of algae. Many people take it in its pure form as a health supplement, but to be used for PDT it has been chemically engineered - but I have no idea what the changes are. It does however seem to be completely harmless to healthy cells - neither I nor anyone else that I've met who has had the treatment has had any damage to healthy cells.

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Re: The future of cancer treatment - no more chemo and rads?

According to the NHS website
"Photodynamic therapy (PDT) is an effective, licensed cancer treatment that should not be confused with the unproven, unlicensed versions of PDT sold by some private clinics in the UK and overseas.
PDT has been proven to treat a number of cancers and skin conditions, including early-stage lung cancer, oesophageal (gullet) cancer and Bowen's disease.
However, the so-called "advanced" versions of PDT, called "next-generation PDT" (NGPDT) and "sonodynamic therapy" (SDT), are not supported by scientific evidence."
"Clinics promoting NGPDT and SDT have been criticised for falsely claiming that these alternative therapies can treat late-stage cancers."
"However, if you opt for NGPDT or SDT rather than following NHS advice or treatment, you could be putting your life at risk."
"Health experts believe that people running such clinics are either misguided or exploiting the vulnerable public for commercial gain."
It is of course possible that the Guangzhou clinic is somehow different from all the other clinics in Mexico and China offering similar treatment, but it is also possible that the NHS and reputable cancer experts know what they are talking about.
I hope your treatment helps you, but if ti would be tragic if anyone decided to skip conventional cancer treatments which could save their life and went to one of the clinics in China and Mexico instead.
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Re: The future of cancer treatment - no more chemo and rads?

Furry Jen - the trials are in Melbourne, and are just on prostate and bladder cancer. I don't know when the treatment will be available generally in Australia. At the moment it's just China - but it was very straightforward. I went on my own (leaving my husband with the kids and dogs) and was very well looked after - met at the airport and had a driver to take me to and from the clinic everyday, and a translator on call 24/7. Everyone at the clinic is very kind and helpful. It was a bit like a holiday - stayed in a 5* hotel at a fraction of the cost you would pay in Europe, and met up with some of the more mobile patients to do some sightseeing.

BlueFox - please see my comment above explaining the difference between the generic and specific terms NGPDT. I've seen these comments on wiki and other mainstream websites, but they don't link to anything specific to NGPDT in Guangzhou. I've searched extensively and been unable to find any dissatified patients. Other less scrupulous clinics are trying to associate themselves with the Guangzhou clinic by using the same or similar name. The treatment is new - it will take some time for the wider medical community to accept it. For instance the stage 4 lung cancer trial showing 94% survivall at 1 year and 56% complete remission has only just been released. Further trials are expected to report soon. The comment on NHS Choices is odd considering the NHS is itself trialling NGPDT, see links in post above, so they clearly believe the treatment has potential. Other completed trials by the NHS on pancreatic cancer have been positive.

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Re: The future of cancer treatment - no more chemo and rads?

A note of caution:
According to Cancer Research UK http://www.cancerresearchuk.org/cancer-help/about-cancer/treatment/other/photodynamic-therapy-pdt:
"Photodynamic therapy (PDT) is a treatment for non melanoma skin cancer and is an experimental treatment for some other types of cancer."
A Guardian articles warns about clinics in Mexico and China with "Unproven treatment"
http://www.guardian.co.uk/society/2012/nov/30/cancer-patients-clinics-unproven-treatment
And the NHS Choices explains the difference between conventional PTD and the claims made by clinics in Mexico and China that offer "advanced forms of PDT"
http://www.nhs.uk/Conditions/photodynamic-therapy-NGPDT-sonodynamic-therapy/Pages/Introduction.aspx
So it is back the NHS hospital for another dose of radiotherapy clinic for me, alas :-(
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Re: The future of cancer treatment - no more chemo and rads?

Hi Finty
thanks for posting your story and information, I was wondering if you had any information on the Australian trials or where there been held?
I would like go look into getting this treatment done and have friends in Australia who could help me with accommodation etc.
also the green stuff you had to drink do you know what it consist off?
thank you Jen x
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Re: The future of cancer treatment - no more chemo and rads?

Just spend a few minutes googling to see if my guess about the new clinic in Dubai was correct - and found this: http://zilingyuying.files.wordpress.com/2013/04/ngpdt_mrfan.pdf It's a very interesting testimonial that mentions that the new clinic is in fact in the Lebanon! Oh well!

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Re: The future of cancer treatment - no more chemo and rads?

iswhiz - this is where I had my treatment: http://www.nextgenerationpdt.com/ The clinic is in Guangzhou (2 hrs from Hong Kong), but they have since opened another clinic in Beijing and I believe are about to open another one in the middle east - I'm guessing Dubai. You have to be a little careful because the clinic has TM'd the name Next Generation PDT (NGPDT), but it is also being used as the generic term for this type of treatment by other clinics with less advanced technology. I did a lot of research before I went as it's a pretty big step, and it does sounds almost too good to be true. But they've been open 7 or 8 years, have treated several thousand people, and I was unable to find anything negative about this clinic on the internet. I also spoke to people on other forums who had been there. Interestingly they dont advertise, other than having a website and a few patient testimonials on Youtube. Most of their patients are there from word of mouth, knowing people who have been treated successfully.
Lynn - I was diagnosed stage 4 from the outset, nearly 4 years ago. As far as I know I am in remission, my next scans are in Sept so I will know more then. I certainly feel really well - I've made a lot of lifestyle changes and feel better than I did before dx. I'm not relying on this though, I'm very careful about my diet (vegan) and have also done quite a bit of research into cannabidiols, which show great promise in treating breast cancer. See here for an intro: http://www.prnewswire.com/news-releases/can-cannabidiol-cbd-fight-metastatic-cancer-according-to-the-latest-research-the-answer-is-yes-170681736.html. I use CBDs on and off for about 6 months a year.
For those that want to speak to their oncs - be warned that they are unlikely to have heard about whole body PDT. Most will have heard about the localised treatment for skin cancer, and will tell you that it isn't suitable for BC. Several people I met in China were there against the advice of their oncs - but they are still alive when their oncs had nothing more to offer them. I'm lucky that mine has been very supportive throughout and has been open to several new things that I've pushed to do - and as she runs one of the biggest BC units in the UK at a major teaching hospital, maybe word will start to get out.

Lizcat, saffronseed - thank you. Mosiecat - let's hope so!

finty xx

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Re: The future of cancer treatment - no more chemo and rads?

Ive done a bit of research into PDT and found quite a lot on it and that it is used in the more localised form already and that there is lots of research and trials going on for what else it can do. Flinty thank you for telling us about it and hopefully it can be researched and opened up to us on the NHS here soon! There are even charities set up in the UK to get funding for it.
I hope NGPDT have opened up their findings for peer to peer research so that all of us can get the benefit and that it's not just about profit from hope for NGPDT.
I've added the links I've found below.
http://www.patient.co.uk/support/PDT-For-Cancer-Cure-Ltd.htm
http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Othertreatments/Photody...
http://www.cancer.gov/cancertopics/factsheet/Therapy/photodynamic
http://www.cancerresearchuk.org/cancer-help/about-cancer/treatment/other/photodynamic-therapy-pdt
http://www.killingcancer.co.uk/home.asp
http://www.cancer.org/treatment/treatmentsandsideeffects/treatmenttypes/photodynamic-therapy

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Re: The future of cancer treatment - no more chemo and rads?

Just wanted to say, having read youe post, Finty, that I for one would love to try this treatment. I'm not having much fun with chemo. I'm writing this post to keep this thread going. Everyone should read it. Let's hope this treatment is as good as it appears and that it comes to this country sooner rather than later. It may not benefit that many of us on this forum now but those who travel this road in the future might have an easier ride.
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Re: The future of cancer treatment - no more chemo and rads?

Welcome back finty its so good to hear from you again - I completely understand the need to stay away from this site at times although i do come on now and again to read posts and will post if I can add something. I hadn't heard of the new treatment you mentioned and its fantastic that you went to china and tried out this treatment and I really really hope it does work for you and you avoid it coming back and you stay NED for a long long time. - it sounds very positive and I would be interested in finding out more about it - I think we are all very cautious in believing there is a cure to this horrid disease but if there is something just around the corner then that is the best news we could all wish for x

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Re: The future of cancer treatment - no more chemo and rads?

This is a very interesting read, how long have you had secondaries finty, and are you now in remission...i would be very interested in this treatent, am just finished cycle 2 of my chemo and finding it very tough, i have 4 small bone mets...
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Re: The future of cancer treatment - no more chemo and rads?

A very interesting read, thanks. Good to hear from you and that you are doing well. Thanks for the bone mets thread which I have been on since day 1 and through which I have made some lovely friends.

Liz x

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Re: The future of cancer treatment - no more chemo and rads?

Sounds amazing! Thank you for sharing... do you have a link to where you were treated? Want to talk to my onc about it...

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Re: The future of cancer treatment - no more chemo and rads?

More details of NHS early stage PDT trials at UCH - these trials are using a less advanced PDT system than that available at NGPDT in China:
http://www.uclh.nhs.uk/OURSERVICES/SERVICEA-Z/CANCER/CANCERTREATMENTS/PDT/Pages/OtherPDTworkatUCLH.aspx

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Re: The future of cancer treatment - no more chemo and rads?

jojo that link is misinformed and conflates NGPDT with sonodynamic therapy which doesn't work. There is also some confusion with the term NGPDT which is used both in a generic sense and is also the name of a specific clinic. There are clinics offering old versions of PDT (one in Hampshire specifically), but there is wide variation in the effectiveness of the PAs used. It's odd that a NHS website would get it so wrong - the NHS has itself trialled NGPDT with success on pancreatic cancer patients, and has been in negotiations to import the Chinese system.

Edited to add a link to the NHS study: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1773165/

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Re: The future of cancer treatment - no more chemo and rads?

Thank you for the information finty and long may you stay well. I'm seeing my Onc at the beginning of August so can ask his thoughts. As you can see your bone mets thread has gone from strength to strength. Best Wishes, Belinda..x
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Re: The future of cancer treatment - no more chemo and rads?

It's great to hear that you are so well and your information certainly make makes for interesting reading and some hope value the the future, but will all treatments that don't have scientific evidence (I'm taking for secondary breast cancer) people need to research all the facts before they can make an informed choice if these treatments are right for them.

http://www.nhs.uk/Conditions/photodynamic-therapy-NGPDT-sonodynamic-therapy/Pages/Introduction.aspx



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Re: The future of cancer treatment - no more chemo and rads?

It's great to hear that you are so well and your information certainly make makes for interesting reading and some hope value the the future, but will all treatments that don't have scientific evidence (I'm taking for secondary breast cancer) people need to research all the facts before they can make an informed choice if these treatments are right for them.

http://www.nhs.uk/Conditions/photodynamic-therapy-NGPDT-sonodynamic-therapy/Pages/Introduction.aspx



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Re: The future of cancer treatment - no more chemo and rads?

Finty thanks for taking the time to share that. Looks like the way forward.
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Re: The future of cancer treatment - no more chemo and rads?

Thanks Jo

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Re: The future of cancer treatment - no more chemo and rads?

Sounds interesting. Can't speak on any specific treatment but I'm inclined to think at least part of the answer must lie in retraining our immune systems to recognise the threat from cancer.

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Re: The future of cancer treatment - no more chemo and rads?

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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Re: The future of cancer treatment - no more chemo and rads?

Welcome back Finty,

Good to hear you're keeping well.

Best wishes,

Jo, Facilitator

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Re: The future of cancer treatment - no more chemo and rads?

certainly sounds interesting who knows could be what wev'e all been waiting for x

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Re: The future of cancer treatment - no more chemo and rads?

Don't know what to say! Hope it comes over here soon. How much did it cost?
thanks for the info Flinty
Suzanne x

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Re: The future of cancer treatment - no more chemo and rads?

Thanks flinty
an interesting read I just read something else along these lines on a us site.
always open to new ideas health or otherwise.
mara
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Re: The future of cancer treatment - no more chemo and rads?

I'm posting my own reply to the thread I started so that this new thread shows up in latest posts. finty x

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The future of cancer treatment - no more chemo and rads?

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