Thursday 27 June 2013

Smart Bombs

Interesting link to an article about Smart Bombs and the possible end to chemotherapy.
http://edition.cnn.com/2013/06/26/health/time-chemo/index.html?sr=sharebar_facebook

My cancer buddie....

I am so so sad, at 1.30 today my dear friend and fellow cancer patient Sarah passed away I've just found out and feel devastated. I had never met her but we had a lot in common. When I was first dx she came to my aid and offered a virtual shoulder to cry on when I was going through the worst of it, she inspired me as another creative (she was an art teacher) I could relate to her on many levels. Every time I pick up my paint brush, or attempt to knit I shall remember my dear dear friend. RIP Sarah G. (aka cromercrab on BCC forum) we shall all miss you I thank the lord she's no longer suffering and pray her transition into the next life was peaceful and calm.  When anyone dies from the SBC group I find it so hard to carry on it takes all my strength to pick myself up and carry on fighting such a blow really does take your breath away. So many have now passed away since I was dx, this is just terrible news. God rest you Sarah G. you were an amazing woman and you shall be missed love to all xxx

Monday 24 June 2013

Whole Body Photodynamic Therapy.....Amazing Results......

Found this post on the BCC forum informing of a new therapy called Photodynamic (PDT) the peice is so well written and describes exactly what the treatment is, does and more importantly how it works.  and believe this would benefit anyone faced with advanced stage IV cancer who has given up hope I'm also posting this here so that I can find it again if I need to. It seems like a lot to read but its so worth it, utterly amazing.

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 (http://www.nextgenerationpdt.com/ )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!


Also found these links on the subject http://www.uclh.nhs.uk/OURSERVICES/SERVICEA-Z/CANCER/CANCERTREATMENTS/PDT/Pages/OtherPDTworkatUCLH.aspx
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1773165/
http://www.patient.co.uk/support/PDT-For-Cancer-Cure-Ltd.htm
http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Othertreatments/Photodynamictherapy.aspx
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

Saturday 15 June 2013

The best thread ever.........more on Herceptin

Just poped on to the BCC forum and found this totally amazing post by a woman who has secondaries and has been on Herceptin (my wonder drug) for the past 10 years.

Well here I am again, one year on, updating that I am still here and well. That's ten years since secondary diagnosis of mets to bone and liver and nine years on Herceptin as my only treatment (just had injection number 157).

I do have other exciting options on the treatment horizon too, the first being subcutaneous Herceptin. Not sure if this has appeared on the forums (not be here for a while) but in summer some time we may have the option to have our Herceptin by subcutaneous injection that the patient will be able to deliver themselves at home - or more importantly on a long holiday away somewhere!!! This will be a bit like a diabetic with an epi-pen, but bigger more like a box. Just think, it will be like slipping the leash from hospital - we will be free! 
Secondly, and this is really scary, there is the possibility of stopping Herceptin altogether. 
Some long term Herceptin patients (8 years plus) have come off the drug altogether with, so far, no re-occurrence. This is mainly in the US but there is one centre in England that has started doing the same. Obviously the risks are unknown and I shall be in the 'wait and see' category for some time to come I suspect, this is all so new and groundbreaking. There is even (dare I even write this......!) whisperings that these women may be cured. We secondary BC sufferers have always been told that we can only ever be NED and never be cured but oncologists are daring to voice such a possibility. Of course we are only talking of a small number of women (only 30 percent, or less, of breast cancers are HER2 and respond to Herceptin and of that number a possible 10 percent seem to survive long term) but I dare to dream - dream of a disease free future, for myself and all my sisters out there.


and a few posts down on the same thread came this brilliant peice of writing by another fab lady on the BCC forum (I'm posting this because it helps me keep this valuable information somewhere I can access it).

Having read some of the more recent studies about Herceptin, I think you're right in that the main value of Herceptin is now thought to be it's ability to flag up cancerous cells so that the immune system can recognise and attack them (as we all know under normal circumstances the immune system does not recognise cancer cells). It was once thought that Herceptin worked by reducing the number or receptors on the surface of the cancer cell, but research has shown this is not always the case, as cancer cells can actually coat themselves with a substance that prevents the Herceptin reducing the number of receptors.

The main problem with Herceptin though is that it doesn't work for all patients There are some studies which suggest it only works for about 40% of patients, and this is why many Her2 receptive patients go on to have Lapatanib. However, there is a new generation of Herceptin based drugs that have just been approved by the FDA in the US called Kadcyla (they are being trialled here under a Trial name). These drugs will hopefully make Herceptin work for a larger number of patients, and will overcome the ability of Her2 cancer cells to coat themselves. They work by combining Herceptin with a very potent chemotherapy drug and an another agent. The drug works by using Herceptin as a vehicle to locate and transport the chemo drug. Once located the agent releases the chemo directly into the cancer cell. So less damage to healthy cells, and fewer side effects. 
I hadn't heard of subcutaneous Herceptin, but if it can reduce the incidence of heart disease it sounds great. I do think though that Kadcyla is going to replace current Herceptin within the next couple of years, simply because it will be able to treat a greater number of patients.

Thursday 13 June 2013

Breaking News..........New drug for HER2

New drug for HER2 positive breast cancer being developed over in the states here's the link to more scientific information http://www.roche.com/media/media_releases/med-cor-2013-02-22.htm. Hopefully it will filter through to the UK at some point. xxx

Monday 10 June 2013

Important questions to ask yourself.....

Last night whilst in bed reading the wonderful book by Dr Brian Weiss http://www.brianweiss.com/ title 'Miracles Happen' which delves into past life regression therapy chronicling patients stories and Dr Brian's synopsis totally brilliant and fascinating.  I came across this paragraph in the chapter entitled 'Freedom from emotional pain' it has struck a cord within me and today I have woken up feeling different.

"We have to juggle work, relationships, and interactions with other people at every moment. We have to deal with our daily needs. And so forget that we are spiritual beings, which leads to emotional turmoil. Spiritual beings should think and behave like spiritual beings; that is our nature and ultimate destiny. But when circumstances of everyday life lead us astray and we forget our true nature, that is when sorrow, worry, and fear enter. That is when peace, joy and happiness exit.

All we have to do is remember: remember who we are and what we are, what we have been through, where we have come from, why we are here. As we do this, emotional healing will naturally follow."

It made me think and I am going to conduct a sort of experiment and see if it works, I am going to re-read this paragraph everytime I start to feel overwhelmed and frustrated, as always I will keep you all informed as too my progress.

Tuesday 4 June 2013

Everybody's gotta learn sometime........

Ok so I woke up with this song in my head 'Everybody's gotta learn sometime' by The Korgis here's the lyrics

Change your heart, look around you

Change your heart, it will astound you
I need your loving like the sunshine
And everybody's gotta learn sometime
Everybody's gotta learn sometime
Everybody's gotta learn sometime

Change your heart, look around you
Change your heart, it will astound you
I need your loving like the sunshine
And everybody's gotta learn sometime
Everybody's gotta learn sometime
Everybody's gotta learn sometime

Everybody's gotta learn sometime

and here's what someone said in the comments section under these lyrics I'm posting it because it spoke to me and resonates on so many levels.


THIS SONG IS **SO MUCH MORE** THAN ABOUT TWO PEOPLE IN A RELATIONSHIP!!!! 

This song is about EVERYTHING!

ALL LIFE.

THE UNIVERSE.

and EVERYTHING.

ALL OF US.

Living here together on this tiny freakin planet. All packed in.

The lessons of the movie are VERY true, and we should all really be more aware of the deeper meaning of this, and when something hurts, take a step back out of yourself and look at your situation from an outside perspective, and with a little time, everything will become clear... and in the bigger picture, everything's not too bad... because we LEARN from ours, AND OTHERS mistakes.

We are all connected. All of us. Everything.

We are here to learn from each other, and grow. Learn as much as you can. We don't have much time.

We need to be good to each other, and do what makes sense, in the big picture.

I feel like some of you commenting on here just don't quite get it.... :(

but hey, Everybodys gotta learn sometime

Saturday 1 June 2013

Being buzzed by a little Bee......

During one of my many readings by my friend and spiritual healer Sandy she told me that she could see bees all over my chest she thought that perhaps I should add some royal jelly or another potent bee product to my arsenal against cancer. Prior to this I had received the product Unbeelievable Bee's Propolis http://www.unbeelievablehealth.co.uk/ I didn't order the supplement but thought I'd won it in a competition on further reflection I realise that I didn't win it and as I'd kept the packaging I checked the sender it was just my name and it didn't even have a stamp on it!!!! I believe it was divine intervention and that I was being shown signs that I must included this in my diet. Somebody somewhere is watching over me. I've run out of the product and need some more and keep receiving emails regarding this product which kind of jolts my memory, so just ordered some message received and duly sorted. Here's a link to a fantastic article on the subject and its direct link to anti-cancer, if any of you are also affected by cancer then I strongly urge you to read it and think about adding this product to your daily intake. http://www.honeycolony.com/article/honey-bees-our-latest-ally-in-the-war-on-cancer/