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 ¶ 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: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

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

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

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

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

Welcome back Finty,

Good to hear you’re keeping well.

Best wishes,

Jo, Facilitator

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.

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.

Thanks Jo

Finty thanks for taking the time to share that. Looks like the way forward.

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.

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.

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

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: Photodynamic therapy for cancer of the pancreas - PMC

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

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

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

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…

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

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.