I think I will award myself an A minus this time. The cancer is still there (but not obviously worse or better as far as can be read from the scan) but my liver bloods were all really good and I am very well. As far as I am concerned now this is a pretty good outcome. The more I become convinced of the metabolic origins of cancer the less afraid of it I feel. That said I definitely felt very afraid as I waited for the results. It was impossible to avoid that stab of panic that rises occasionally with the many what ifs that flood your mind at times like this. My younger sister, Cecilia, was with me and tried valiantly to distract me as we waited. I had had my bloods taken earlier that day and I saw the envelope with the results being delivered. So the delay before I was called in was laden with meaning. Clearly they (the breast care nurse is always with the oncologist during appointments) were discussing how they would communicate the results to me. Then they opened the door, and my heart beat a little faster as I grabbed my bag and began to stand ready make my way in, when they called another woman, with very short hair under a hat, into the office.
We have a lovely summer planned as a family and my immediate fear was that this would not be able to happen if the results were bad and cancer would again dominate. When I was called in eventually the oncologist just pushed the blood results under my nose. I have not yet experienced good news from this oncologist so am not very sure how to read him in all situations. I would say this was an OK result. He clearly would like to see the tumours in the liver to clear but good bloods and a healthy me are good outcomes. I now do not need to see him until early September. Before then I have one more dendritic cell vaccine (I leave this Wednesday), a relaxing summer with sun and good food and longer on the hormone treatment, so lets hope by the time we reach September there will be some evidence of clearing. It is clearly very comfortable where it is. I am not sure I am technically in remission, as this I think happens only when there is certain percentage decline in tumour size, but I am stable. I am also not sure there is much difference between stable and remission. So this is all good news and I feel happy, enjoying that I feel quite well. I am savouring little moments, conversations with the children, seeing my wider family - like having a plate of my favourite food in front of me, trying to chew it slowly to make it last rather than gobble it down, which I have a habit of doing.
The PET/SCAN did show up one thing they need to investigate. The oncologist was pretty confident that it was a red herring, but it needs following up. Something showed up behind my nose. My oncologist is not only a breast cancer specialist cancers of the neck and head also and so I trust that it is almost certainly something else (infected sinuses?) - but I still have to have a camera up my nose and the inevitable sneaky worries that will surface as this is investigated.
These results make me feel more confident that whatever I am doing it can't be doing anything too bad and I feel more bold in my belief that this is something I can keep under control, indeed heal. I have been reading more widely and there is such a large number of researchers, doctors, health practitioners and expert patients who believe that something untoward is happening in the world of cancer.
When you first read much of this literature it is difficult not to feel that these are people obsessed, in some mad world of conspiracy theory. Big pharmaceuticals bad. Chemotherapy poison with few success credentials. Claims of therapies which are being squashed and discredited as they are being pedalled by quacks who are out for your money and have no regard for your health, if they did they would comply and support the main conventional therapies rather than put your life at risk by suggesting there may be another way. And then you keep on reading, and listening to testimonials and hearing people from all around the world who have taken a different route and survived, or at the very least extended their life with good quality - and a little worm starts burrowing away in your mind. What if there was another way? What if cancer really was fundamentally largely the result of a metabolic disorder? What does chemotherapy, radiation or some of the targeted therapies do to address this in the longer term? If you really want to live, and I really really want to live, then you open your mind to honestly anything, things a me before cancer would probably have disregarded as a bit whacko, but I am slowly converted.
Something fishy is going on in the world of cancer. The health of our cells rely on what we put into our body and how we treat it. Surely if we have a metabolic disorder which helps prevent the immune system from playing its part and keeping cancer (that is in all of us) in check, we would need to address this if we actually wanted to survive longer term. Zapping a tumour to get an immediate reduction in size (which is what chemotherapy can do) is not on its own going to address the fundamental range of factors which contributed to the cancer growing out of control. Indeed, and rather disturbingly as I have mentioned many times, it actually impairs your immune system, which is the backbone of your own bodies defences.
I say something fishy is going on because of the large range of alternative therapies which are based on good science and are not only disregarded by most of the medical establishment but they are actively discredited and in many cases practitioners supporting patients with such therapies are subject to professional censure. In the USA there is a long list of cases of Doctors and other health practitioners actually being persecuted, even imprisoned for offering such alternatives. There has been a recent case rather closer to home which I am aware of but need to check if it is ok to talk about it here.
These alternatives, when you look into them, are things like high dose vitamin C therapy and B17. Now B17 essentially comes from a range of fruits and vegetables but apricot kernels are a well known source of this. I have not found literally one piece of credible evidence that B17 supplementation is dangerous even at high doses, yet there is a long history of practitioners being persecuted for offering this and pure laetrile has been illegal in much of the USA for decades. There is a massive literature containing evidence of the beneficial impact of B17 on cancer and many many testimonials of people reporting impressive responses after using it as part of a broader approach to cancer. Apricot kernels are not exactly going to make anyone rich. They are certainly unlikely to kill you unless you eat so many you burst (as far as I can see from the research) yet there is plenty of evidence of death from chemotherapy treatment yet this is used as the mainstay treatment for cancer. At worst B17 would not do anything. The history of suppressing the evidence around this nutritional supplement is macabre.
It is not only parts of the medical establishment who either disregard this evidence at best and at worst actively target practitioners who offer it - but big charities such as Cancer Research. When I was diagnosed this time and started my research I kept coming across some rather vitriolic anti Cancer Research material and blogs and couldn't understand why. I now do. It should be the Cancer Research of this world, who raise so much money from people who want to see their loved ones survive, who champion another view of how to treat cancer and to support the necessary research to definitively support some of these alternative treatments which will never make anyone rich.
Despite most oncologists not offering any specific nutritional advice (except to ensure that you do not lose too much weight to put the chemo treatment at risk), I cannot believe it is that hard to agree that it is plausible that nutrition has a role to play in not only increasing susceptibility to cancer but also as a strategy to helping increase survival. Have a look at this disgraceful advert put out by Cancer Research funded by the hard work of millions who donate in the hope for a breakthrough. I cannot work out how to add a link but have a look at the Cancer Research Facebook post on 22nd June 2015 at 20.00 hours.
I always like to refer to the book The Cancer Survivor’s Bible by Jonathan Chamberlain to sense check things I read elsewhere. His take on B17 (also known as laetrile) is that the controversy surrounding it is bizarre given this is essentially a substance found in concentrated form in apricot kernels and almonds but also a wide range of other foods and plants, mainly edible. I would suggest it is beyond bizarre and more in the realms of sinister. Ralph Moss covers the story of the suppression of research supporting the use of laetrile in his book The Cancer Industry.
I have started eating crushed apricot kernels (it is important you source them from a reliable supplier - I use Himalayan apricot kernels from creative nature ), simply as a nutritional supplement. I am crushing them and mixing them in water to swallow in one (as they are utterly disgusting and incredibly bitter). I have started on 5 a day and am working my way up to get to as close to 30 a day as I can but doses for other people with cancer can be a lot higher. It is also a supplement that does not work alone and requires Vitamin A and Zinc and enzymes (I think I have finally found the right pancreatic enzymes to support this therapy and will write about it soon when I have started to take them). I also have B17 in pill form, which if I need to be more aggressive at any point in the future I will consider starting. As it is I have quite a lot going on with dendritic cell, exercise, diet and other supplementation - I need to hold some approaches back in event I need a boost further down the line. Again in my view, it is unlikely to do any harm and so why would I not try it in light of the many people who strongly support it’s potential as part of an anti cancer approach.
The main therapies that stand out as those which have been tried and tested and are advocated by cancer survivors and integrative therapists include: B17; Low Dose Naltroxate (which I am also taking and cover in this blog also below); the budwig protocol (quark and flaxseed oil) - I tried this during chemo but could not stomach the mixture, I would return to this at a later date if I need a new approach and not mix with chemo when it is hard to find even normal food appetising; cannabis oil (I have researched this and again it is something I would certainly contemplate if of course it were legal as it is in California where there are oncologists who actually prescribe it); vitamin C in high doses (I am taking liquid vitamin C starting only after I had finished chemotherapy but I know people do take it in conjunction with it and I had some Vit C intravenously in Germany.) Finally vitamin D supplementation.
When I told my oncologist that I was researching dendritic cell therapy and I wanted to know what his views on it were and he suggested I try and see (privately) a Professor (Dalglish) who is a leader in immunotherapies and has been a supporter of dendritic cell therapy for many years. I was lucky to see Prof. Dalglish who was incredibly open minded. I had wanted his views on DC therapy but also advice on some of the other supplements I was taking or considering. He knew the team in Germany well and had visited the laboratory there (which the team showed me around also) and was positive about their work which gave me the confidence to pursue this treatment. Apart from commenting on the other measures I was taking he advised two things. 1) to get my Vitamin D tested and 2) to consider Low Dose Naltroxate
Vitamin D - why? There is plenty of research which shows the benefits of vitamin D both in the prevention and the treatment of cancer. Recent research indicates that human daily requirements for Vit D may be up to 10 times more than what is currently recommended. There is also growing evidence that many of us are deficient in this essential vitamin. Professor Dalglish was certainly clear that Vitamin D is so intrinsic to the correct functioning of cells that patients should first and foremost correct any deficiency. There are a number of factors that have contributed to growing deficiency of Vit D including use of sun creams at all hours over the whole body and the changes to the food we eat. It is not only cancer that increases with Vit D deficiency but many studies indicate mortality from all causes is significantly higher if you are deficient. Prof Dalglish suggested I have my Vit D tested and said that he is surprised by how many people you would think would not be deficient who are. I would have put myself in that category. My test came back and I was between deficient and normal (although according to the GP surgery I fell within normal ranges but from what I have read about what is sufficient in literature about cancer I was in fact within the deficient/normal range). I had started supplementing with liquid Vit D a good few weeks before the test and so imagine that I was well within the deficient range a few months ago - which I am sure would not have surprised Prof Dalglish who sees Vit D deficiency in so many of his patients. I continue to address this with a Vit D supplement and will spend as much time as I can in the sun (safely) over the summer.
What I did learn as I researched this was that while some Vit D is created within the skins outer layer much of it sits on the surface of the skin and it takes about 48 hours to penetrate. ‘Being water soluble, vitamin D is broken down by soap and washed away in your power shower’. ‘Trying to get sun exposure behind glass won’t work either since the Vit-D making UVB wave length is disrupted. UVA gets through however, and that’s not good news’. pg 211 P.Day ‘Cancer Why we are still dying to know the truth’
Now Low Dose Naltroxate is another funny therapy. Funny in that there is an impressive science behind it and yet it remains elusive and certainly not considered a standard therapy. Professor Dalglish has himself examined the research behind it as well as treated patients who have taken this and he believes this is a substance which should be considered within the cancer arsenal. He suggested that I start this and offered to write me a prescription if I could not get one from elsewhere. There is a way to get this low cost drug within the UK but it is not the most straight forward route and I am at a loss as to why more is not known about this and why it is so hard to acquire it. Naltroxate is a drug which has been approved by the drug authorities but originally to help wean addicts off heroin. In 1985 however a New York City doctor (Bernard Bihari) discovered that at very low doses this drug had a very powerful stimulating effect on the immune system.
‘In addition to stabilising AIDs, he found that this treatment also had a powerful, beneficial impact on many cancers including cancers such as neuroblastoma, multiple myeloma and pancreatic cancer which are normally considered incurable’
Interestingly, this treatment has the effect not of curing cancer but, in many cases where all other treatments have failed, of stopping it in its tracks. This is not 100% assured but seems to be a very high frequency effect. However LDN needs to be taken permanently as the cancer will start growing again when the LDN is discontinued.
It is safe, cheap and has no side effects….’
Johnathan Chamberlain pg 397 The Cancer Survivors Bible.
I now take 4.5ml a day, every evening after 9pm. In order to acquire it I had to contact a pharmacy in Glasgow which supplies it (Dixons Pharmacy www.dicksonchemist.co.uk). They sent me some forms by email which I had to complete giving details of myself and confirming my diagnosis (a copy of a letter from my oncologist to my GP). I returned these and was then contacted by a Doctor for a private consultation by phone (this cost about £35) who advised me on how to take it and confirmed some details. He then prescribed LDN for me and I purchased this via the pharmacy. It costs me £18 for a months supply. Why on earth should it be so difficult for me to access what appears to be a low cost drug with an exciting scientific evidence base? Could it be that it is out of patent. A rather boring low cost drug that will not make anyone very rich. Cancer Research - where are you? I tracked down a book which charts the history of Low Dose Naltroxate and examines why this has not attracted more attention from the medical community. (The Promise of Low Dose Naltrexone Therapy: Potential Benefits in Cancer By Elaine A. Moore, Samantha Wilkinson)
‘The low cost of generic naltrexone is not favourable to the profits of drug manufacturers who might otherwise implement clinical trials for its use in conditions for which expensive drugs are already available’. pg 155
Also check out www.lowdoesnaltroxate.og.
So these are some more strands from Louise’s personal survival strategy.