Resources

What i wish i had on the day of diagnosis.

Here is some of the info I wish I had access to from day 1 to get me started.

Whilst doctors, surgeons and oncologist can do truly amazing things these days, unfortunately a lot of what they are and aren’t allowed to act on and discuss with patients does not include everything that’s available. The problem is nobody will inform you of this information unless you know somebody who has been there and done it themselves. This is sometimes because the studies that prove legitimacy of certain treatments, drugs supplements etc are still in their infancy or it could simply be because the companies that govern what treatments are allowed in particular countries are slow at updating the procedures our doctors have to adhere to.

There are two types of cell when it comes to cancer cell types, the fast dividing and the slow dividing (stem cells). Unfortunately the standard chemo and radiotherapy are only effective on the fast rapidly dividing cells and not the stem cells. Cancer stem cells are even able to utilise a process called autophagy after a cancers fast metabolizing cells have been killed off by treatment and use those dead cancer cells as energy to make more. However, interestingly enough your immune system is able to kill these stem cells.

All cells in our bodies use the food we eat for energy, and unlike the most common theory that cancer cells feed on only sugar (glucose), it can also feed on glutamine, fatty acids and ketones. That means cancer patients need to be careful they aren’t quite literally feeding their cancer cells by trying to remain strong and buff themselves up for mainstream treatments. There are ways of finding out what your particular cancer feeds on this is called a metabolic phenotype, and by limiting foods in your diet, and/or use off-label medication and supplements you can help regulate the uptake of certain food types your cancer uses to feed itself. (Unapproved use of an approved drug is often called “off-label” use. This term can mean that the drug is: Used for a disease or medical condition that it is not approved to treat, such as when a chemotherapy is approved to treat one type of cancer, but healthcare providers use it to treat a different type of cancer. Or another example would be Metformin (a drug given to diabetics to keeps their bloods sugars low) given to cancer patients whose cancers rely on glucose metabolic pathways.

You can get access to Metformin for cancer along with up to 3 more other off-label meds on the Care Oncology Clinic protocol in the UK. They provide these off-label medicines to people with cancer as part of a clinical trial and they’re based out of none other than the infamous Harley St, London. Very reputable and friendly oncologists and an easy way to get 4 of the off label drugs that are shown to stop cancer proliferating. Another of these drugs is Mebendazole which is a powerful but simple anti worming drug: Joe Tippens covers most of its use in his blog. Which is another amazing resource of information.

Jane Mclelland does an excellent job of explaining how you can use off-label drugs and supplements to kill off starved cancer cells, and this is where my journey with Epigenetics begun after reading her book. How to Starve Cancer describes about metabolic pathway modulation and helps you learn more about how cancer cells feed through the ATP in our cells. This free video interview with Jane on YouTube explains things well even if it’s a little confusing at first. In Jane’s book she guides you into starting your own “Metro Map”, where you list out all the potential pathways your cancer cells can be using to feed itself and find specific off-labels or supplements available for blocking uptake of said Pathways. Jane also has a Facebook group which can be a helpful resource for building a “metro map”.

All that being said fasting is an excellent way to allow your body a break from eating and digesting foods. I’ve found 16-20 hours to be good fast times for me but i started with 12 hour fasts and went up from there. But my diet was already clean by that stage. When you are eating you should keep everything fresh and as lower GI as possible. The glycemic index is a value assigned to foods based on how slowly or how quickly those foods cause increases in blood glucose levels. Here is a site on the glycemic index for help with low GI foods (Also good for diabetics).

You should be eating/drinking fermented foods and drinks. It’s huge when supporting your immune system and the microbiome is massive when it comes to fighting off any illness/disease as it’s directly linked with your immune system! This is a great site for easy tasty ferments. Or if you have the time, do them yourself at home! Search online for “Kombucha Green Tea”.

Exercise is very important, whilst airing on the side of caution depending on your current circumstances you should try and get out of breath from exercise at least once per day, now getting out of breath can be a 5km run, or it can be getting out of bed, the key is just to do it everyday.

It’s not just your body that needs help through this experience, your head and mind are equally as important. I also found help from a book called Radical Remissions and what it speaks about having a positive mental attitude and a reason for living, this is important for obvious reasons.

How often is it you sit down in a quiet space alone thinking of nothing with only your breath for ambiance? Probably not often enough, life is fast theses days even in a post covid world our brains can move too fast for our own good. Meditating is just a word meaning time to give your brain a rest. You can try it right now for 3 minutes, i dare you. Set a timer on your phone for 3 minutes so you’re not clock watching, then close your eyes and focus on your breath, don’t change your breath pattern just focus on it. When your mind wanders (and it will) allow yourself the courtesy of the thought, then just return back to your breath. The more you practice doing this the better you get at clearing your mind of being busy for a while everyday. There are loads of guided/unguided meditation videos on YouTube to get you started if you feel you need help.

As well as what we eat being a huge part of who we are, of course too can be said for our genetics. So finding out your cancer(s) specific genetic information is also very useful information. Some cancers can be subject to gene expression profiling for example, this can be helpful as these expressions can be targeted by specialist drugs to help your immune system fight off the cancer such as my own. There are lots of drugs out there that are still mainly not even legal in the UK yet, and if they are they’re used as 3rd line treatment after the standard chemotherapy radiotherapy operation answers. Which once you see what these new line of drugs are capable of after a person has been subject to such damaging treatments prior, seems utter madness to me.

Once you know your cancer type you can go to PubMed, this site houses a plethora of biomedical literature which can be used to search for supplements and off label drugs that will help with blocking your cancer specifically or to help your body through any treatments that you may have been offered. For example this shows how Berberine (a simple chinese supplement) enhances radiosensitivity of esophageal squamous cancer in vitro and in vivo (In vivo refers to a living organism. Examples can include studies in animal models or human clinical trials. In vitro is used to describe work outside of a living organism.) I also learned a massive amount about my immunotherapy drug of choice Nivolumab.

If you need to research any drug or supplement you want to use, and you want to see any potential interactions between each other, you can use the British National Formulary. Which is published by NICE The National Institute for Health and Care Excellence and provides some national guidance and advice from inside the UK.

There are many companies out there that do genetics testing, once you’ve researched your cancer enough to know about a potential genetic approach to your treatment you will need to test your own, The company i used for genetics testing is here: https://oncologica.com But of course shop around.

You can search for any ongoing clinical trials here. If you are interested in something like this there may be something happening that matches up to your cancer type, then you can approach your oncologist to discuss them offering you up for a trial. Just as i myself found a pretty well researched and documented drug that matched an over-expression in my cancer, but as it hadn’t quite made it through NICE yet for my cancer type our NHS couldn’t do anything for me. Which i feel is a massive disservice to people, as many go by not even knowing such methods of cancer care exist.

Now when it comes to an alternative medicine… cannabis has been great for me, specifically pure full extract oil, ingested with or without food (CBD and THC). I had cannabis oil for only the second time I went through a chemotherapy cycle and truly attest my still being here thanks to treatment being stopped, but also to the oil I used to combat many side effects of the treatment which i didn’t have access to in my first cycle. I used it along side the steroids I was prescribed and it helped me more than any other drug I was Prescribed.

Detoxification is a word thrown around a lot these days by companies trying to sell you their latest product to detoxify you. Drink green tea, as much of it as you want. Coffee enemas and exercise also do this really well for really cheap and the science behind it is very compelling and interesting.

My thought process into researching anything has always been to read and listen to all advice or help I can get, and then research into said advice and if I find it helps me then great, if not I shake it off and move on as there is plenty out there that will. If like us as people we are indeed all different, it makes perfect sense to me that so too are our cancers.

At the end of the day you are the only person who can actually feel what it’s like in your body. You are more aware of your own body than your doctor and the better you learn to listen to your body and how it’s dealing with how you treat it the better treated you will be. Both by yourself as you understand more about your body and from medical professionals, as you’ll be able to more accurately inform them. It makes sense to me that a lot of the time doctors would appreciate a patient who works with them and not just expects the doctor to do it all for them.

The placebo effect is the only real threat most drugs come up against before they get approval for wide use, and that’s for good reason as its incredibly strong. Within reason if you feel something is helping you, stick with it, because even if clinically it’s not indicated at first, it could well be doing more for you than you realise. Practicing a positive mental attitude goes a long way too.