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 I did read that Finty is no longer active on the forum but someone had read posts, which she thought were hers in another group, if I can find it I will let you know.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
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.
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 .
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
On Behalf of the Clinical Team
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!