My Journey with Pancreatic Cancer
Mine started with a lump in the umbilicus, which led to CT scan and a diagnosis of Pancreatic Cancer (PC). Out of nowhere I had no symptoms and no idea apart from the lump which I thought was a boil or infection.
The tumour was 4 x 3 cm in the tail of the pancreas – the tail is more rare and even more fatal as I remember but at least the operation is easier with less side effects as pancreas bile duct etc all continue working normally as most insulin is made at the head of pancreas. They decided it was operable and it was removed along with the spleen. They removed the lump at the umbilicus and all the cancer they could see on the CT scan and took random tissue scrapes from around the internal area. The lab result showed the umbilicus was also cancer and two or four lymph nodes removed also tested positive plus many of the tissue scrapes were also positive - so stage IV cancer.
Medical Treatment So Far
After 8 weeks of recovery we decided to do some chemotherapy and after discussion with the doctor I agreed to try the FOLFIRINOX. This is the latest best option – most effective but most toxic chemotherapy regimen. The doctor admitted many people cannot tolerate the treatment. Because I am relatively young and healthy he put me on the maximum dose. It involves two days in hospital on intravenous drip every two weeks depending on how your immune system holds up. Basically White Blood Cell must stay above 3000 or you have to wait another week or lower the doses etc. I had it for 5 treatments over I guess 10 weeks and my immune system held up fine and I was mostly okay just very nauseous for the two days of treatment plus usually one or two more.
I lost weight mainly as it is difficult to eat whilst taking the drugs due to nausea and general ill feeling and for a day or so after. Felt some nerve endings deadened in the feet and hands but not much and it went away quickly after each treatment. I was taken off it as the cancer marker dropped on first treatment but spiralled upwards afterwards so the doctor concluded it wasn’t working and we did a second CT scan at about 5 months after the initial scan. The scan showed 3 cm tumour in the liver plus 3mm in the lung classic metastases in PC. The doctor recommended a second regimen of chemo therapy but was honest in agreeing it was not nearly as effective and largely palliative I declined and since then have had no further treatments and am now just doing monthly blood tests and am still luckily symptom free – the tumour in the liver is in ‘good’ place away from the main blood supply and not pressing on anything.
Now this might seem very bad and is classically fatal since chemo cannot remove a tumour just shrink or stop the growth both temporarily. However the surprise for the doctor was that I only had two tumours given the initial start point of spreading and subsequent rises in the cancer marker.
So What Else was I doing
In parallel to the conventional treatment I started to look around at other options and eventually came across the Budwig protocol. I was attracted by the theoretical basis for the protocol, the quality of the scientists who researched it, including Warburg a Nobelprize winner who put forward an alternative scientific explanation for cancer the basis for the protocol but not the solution. Budwig put forward the solution which could be done from home. So after two treatments of FOLFIRINOX I started doing Budwig as well. In fact I did it even in the hospital since I had a private room with refrigerator. I have been on it ever since and as far as I am concerned it can’t interfere with conventional treatment as it is based only on normal food. Anyhow I reasoned it’s not a gamble to try alternatives if the outcome of conventional medicine is likely death. It’s an easy protocol in principle but a big shock to most people’s diet absolutely no processed foods, flour, eggs, meat, fish, sugar, coffee, black tea, dairy except for the cottage cheese required, cooking oil of any kind including olive oil to name some of the exclusions. Basically you can’t eat out at all and I haven’t except for drinking green/herbal tea while my wife eats. The main issue of the protocol is it takes typically about 4 – 5months to start to turn around blood tests so you must stay alive that long - that’s partly why I agreed to the chemo to buy time. Due to the poor outcomes of conventional treatment and their toxicity I have always considered Budwig to be my primary treatment and worried mainly if Chemo would affect Budwig not the other way around.
The protocol and advice can be found in detail on the flaxseedoil2 forum on yahoo.
Whilst I was looking into alternatives we started asking locals here what they did (I live on the edge of a tropical forest) and most don’t have the money for chemo or doctors.
So we heard about Piper Betel leaf which locals widely chew for health and as cure for cancer. I met several people who claimed they cured their cancer with the leaves alone – I have no reason to doubt them - one is a nun the other my gardener (who showed me dormant lumps all over his body the nun did not). I searched the internet and found research papers out of India/China which support the view that it clearly has anti-cancer properties based on research on mice and is non-toxic. And a whole host of other health benefits.
Further research showed up other leaves also with research including Papaya Leaf long used by the aboriginals for cancer and Phyllantus Niruri.
I take Piper Betel 8 leaves a day (vile tasting but hot and spicy). Most local here people grow the vine.
Papaya leaf two medium leaves juiced with red cabbage and a green apple (low sugar) to make it taste a bit better and take half in morning rest in the evening.
Phyllantus I take in capsule form 4 a day or 2 gm (2 x2)
Vitamin B (the protocol is Vitamin B deficient), turmeric 2gm a day(4) and 4x grape seed extract.
Vitamin D but only through daily 20 min of sunbathing – vitamin is included in the Budwig protocol (sunbathing) as its anti-cancer and very supportive of liver and most cancer patients have low levels.
I have no idea if the leaves (or anything else) are helping but I know they are very supportive of the blood system and general health.
So that’s where I am continuing with my leaves and the Budwig protocol with dropping cancer markers. I have discussed this with my oncologist and he agrees something I am doing is helping and I have his backing to continue as I am since he doesn’t have anything better (or even as effective) to offer. Is it a temporary turn around I don’t know. All I can say is I have done the research and made my decisions and am okay with whatever happens - confident that I won’t die regretting I didn’t try this or that. If it doesn’t work I may return to chemo but that’s an admission you are going to die but it may buy time. I am far from that at the moment.
I have the tireless support of my wife (her family) and our 5 dogs they all play a big part in me enjoying my time and comforting me in the odd moments of doubt when medical tests have been poor. I live in a very beautiful place and am finally fully content in my life, which would be the saddest part of dying leaving them behind. I have also listened to many of the teachings of Adjan Brahm an Australian Buddhist monk who talks on variety of subjects every Friday with his own unique look at life including pain, illness, end of life issues, meaning of life, life after death, reincarnation, consciousness, meditation etc among huge array of topics about life in general and how to deal with it - which have been and are very comforting and calming and are available online at
It is now coming up to 7 months since diagnosis and I have no symptoms. I have stayed in total control of my treatment listened to the doctor’s suggestions but done my own research, not just general comment but to the research papers that support a particular regimen, so I am very well informed to ask a lot of questions. Research alternatives and don’t be afraid to try since the conventional treatment will probably result in death what you risk at most is months against a possible different outcome. I have been surprised about how uncertain the treatments are considering how long research has been going on, for ongoing treatment we have CT scans, how you feel and somewhat unreliable cancer markers like CA-125, CA-19-9 and from these few clues interpret what is going on – and you can only do CT scans intermittently so it comes down to mainly how do feel - its more of an art than a science. Since the site originated in the States I see CA-125 seems to be commonly used but the paper below suggests for PC CA-19-9 is better - read and ask I would. If I remember I will ask my oncologist about that when I see him in about a week.
Throughout I have been/am very certain I am not going to die. It’s not a conscious decision it comes from very deep – 6th sense you might say. I have never asked the question “how much time do I have to live”, partly as it is somewhat unfair on the doctor, but also it’s also a very pessimistic way of looking at things – maybe leading to acceptance. Perhaps I will get to that stage but I am far from that now. All medical experience shows a positive outlook tends to create positive outcomes. I can see the statistics but I am only interested in what I can do to change the accepted outcome.
I am still slightly revising my regimen and probably will continue to do so as I learn more about Budwig and other alternative options.
Look for more to inform yourself as much as possible - don’t let your treatment happen to you - be in control - that’s very calming . Good luck!