Cancer Course – Introduction

Cancer Course – Introduction.

Please read this whole page carefully, and watch the video linked below.

NOTE: To join the live sessions and receive the course notes and checklists you must be registered:
Course Registration

This video explains how the course works:

The course has 10 modules. Each module has a live online seminar, seminar notes and a checklist. The seminars are 45 minutes, plus 15 minutes of your questions. You can print out the seminar notes and checklists to take with you to your medical consultations.

The live seminars will be recorded so you can rewatch them whenever you want. But the Q&A section of each seminar isn’t recorded because some participants may ask questions about their personal situation. You’ll receive the seminar notes and checklists by email.

Module 1: Getting Help
Module 2: Understanding Your Cancer: Diagnosis and Monitoring
Module 3: Cancer Treatments: Effects and Side-Effects
Module 4: Surgery and Radiotherapy
Module 5: Chemotherapy and Targeted Therapies
Module 6: Immunotherapy
Module 7: Choosing Treatments: Questions to Ask
Module 8: Clinical Trials
Module 9: Crowdfunding for Your Treatment
Module 10: Your Physical and Mental Health

To register for each session use the links that I email you. There’s a choice of two times for each session. Please try to join the session on time, and have a notepad ready because I’ll be giving you a lot of practical information.

Here’s some useful background reading, listening and viewing:

Essay: “After a terminal diagnosis”
https://www.chris-cancercommunity.com/after-a-terminal…/

Interviews:
Career Changers Podcast
https://podcasts.apple.com/us/podcast/matthew-dons-lets-make-cancer-history/id1530566558?i=1000581374548

We Have Cancer Podcast
https://www.wehavecancershow.com/episode/a-conversation-about-a-terminal-colon-cancer-diagnosis-and-more-with-matthew-dons

Life and Ikigai with Cancer:
https://www.youtube.com/watch?v=RiA2BXbav7s

Cancer and Technology: A radio interview with WBAI in New York:
https://www.youtube.com/watch?v=hq9V2x6BMIQ

Conference talks:
HOPE 2020:
https://www.youtube.com/watch?v=21Fzi3jkbPU

HOPE 2022:
https://www.youtube.com/watch?v=ZfOuXv8JLDw

 

Video Transcript:

Welcome to the “Make Cancer History” cancer course. This is a course for cancer patients and carers. I’m going to explain about how the course works, what it covers and what to do next. It’s very helpful if you click “subscribe”, so that you’ll see any more videos that are posted on this channel.

So, this course is really about how to make very difficult decisions. Everything is difficult when you have cancer, and I’ve been dealing with cancer for six years now. I’ve talked to many Doctors and Nurses, and thousands of patients around the world, so you’ll be getting my experience and where appropriate, I hope to introduce some medical professionals as well.

The real aim of this course is to give you the best possible chance of outliving cancer. So that means if your cancer can be cured at the moment, we need to track down that cure, which is going to involve maybe using standard cancer treatments, but in certain combinations in a certain order or in a certain timing, and also cutting edge treatments.  Of course if it’s not curable now, we need to do everything to make sure that you’re in a good state when curative treatment does become available, so that you can take that treatment.

So in my case, my cancer actually got worse after a couple of years after being diagnosed with stage 4 cancer. So I had cutting-edge treatment –  it was going well. My cancer got worse again and I had more treatment. Two years ago I reached the situation known as NED (no evidence of disease) or being in complete remission, and I’m working hard to stay that way now.

The course is also designed to help you protect yourself against the scammers, crooks, quacks and well-intentioned idiots out there, who are trying to maybe exploit you and get hold of your money, or who just have some kind of agenda that they want to push on you.  This course is going to help you cut through a lot of that and I think that’s a big benefit of the course.

But another point is that through doing this course, you’re going to start building up connections with cancer patients all over the world. Hundreds of people registered for this course. I was hoping for about 50 and currently there are  ~450 on this first run of the course, and we’ve got a couple of hundred people on the waiting list for the second run! So it’s going to be very useful I think, very fun and you’re going to get a lot of connections, which make a massive difference when you’re desperately trying to find out about the best treatments, and how to deal with side effects and that kind of thing.

So I’m going to explain a bit about how the course works. It’s an online course, it’s completely free but if you can donate that’s tremendously helpful and will allow me to make the course better. I’ll explain a bit about that later.

The way it works is there are 10 modules and there’ll be live Q&A sessions.  There’ll be a live session introducing the module. So what happens is, I’ll introduce the topic for about 45 minutes, and there’ll be 15 minutes of Q&A. My 45 minutes will be recorded and you have access to an archive, so if you missed the live session you can still watch that whenever you like. The Q&A is not going to be recorded, because people are going to be talking about very personal things.

I should say I’m not giving any medical advice in this course. I’m not a doctor. It’s for educational purposes only. I’m going to try and be careful not to stray into the realm of giving medical advice, but obviously in those Q&A sessions you can ask whatever you like related to that topic. So it’s very good if you can join the live sessions. I’m going to try and have two or three live sessions for each module covering the same material, so that you can choose one that’s most convenient for you. I’m based in Tokyo and am trying to schedule the live sessions at a time that is kind of reasonably convenient for people in Europe and the US, but it has to be kind of doable for me as well. But if you see me sitting here in my pajamas, then it’s probably three o’clock in the morning or something like that!

In addition to the live sessions, there’ll be some pure live Q&A sessions as well. Again, those won’t get recorded, so it’s really worth joining those who can ask your questions. You’ll also get a downloadable pdf document for each of the 10 modules. The pdf notes explain the key points that you need to know, what you need to ask medical professionals, and then for each module there’s a checklist as well.

So for example, a checklist about surgery that has questions that you need to ask the people who are doing your clinical care. It has information about items that you should take to surgery with you, that kind of thing. So those checklists are going to be things that you want to print out and maybe take to appointments when you’re going to see an oncologist or another specialist.

If I can, there will be some “extras” as well in the course, such as interviews with patients and also with medical professionals. I’ll try and do some on-location stuff as well, so go and visit some clinics and hospitals and do some filming there. That’s another reason to please donate if you can, to just help out with my transport costs and accommodation and that kind of thing.

So that’s how the course works –  very straightforward really and I’ll just explain a little bit about Make Cancer History.

Make Cancer History is a Non-Profit Group based in Tokyo, and it’s basically me plus some Japanese friends who are very kindly helping out.  The aim is to connect patients and clinical practitioners (Doctors, Specialists and Researchers), so to connect all those three groups together. It’s a bit strange that these three groups are not really well connected at the moment, but it’s very very clear from my past six years of dealing with terminal cancer, that patients don’t have enough access to the the top specialists in the world, even though there are definitely ways that that could be done on quite a practical level now with video conferencing for example.

It’s also clear that cancer researchers and clinical practitioners aren’t connected well enough together, and patients and cancer researchers don’t seem to be connected in any way.

So that’s really the main work of the non-profit, and one reason why I’m doing this course. But further than that, we’ll be setting up a research center here in Tokyo, with a treatment clinic and the aim is to cure cancer for everyone everywhere. That sounds completely unrealistic, but I think that as you go through this course, you’re going to start seeing that it’s well within our grasp, but only if we do the right things, the correct things and that’s just not happening at the moment.

So that’s about Make Cancer History, and what it’s all about. Now I’m just going to very briefly go through the 10 modules that you’ll be doing over the next few weeks.

The first module is all about Getting Help – all the different sources of help out there and how to approach them; things you should be careful of. There’s a lot of good information out there and a lot of helpful people. There’s also the bad information and people with agendas that may be very obvious or maybe quite hidden, and I’ll help you deal with that in an appropriate way.

Module 2 is very fundamental about Understanding Cancer: understanding your diagnosis, understanding monitoring. So things like the ongoing blood tests, the various scans, that kind of thing.

Module 3 covers the Cancer Treatments, particularly the effects of the treatments and the side effects, but also the consequences. So if you have certain types of radiotherapy in certain places in your body, you can’t then do surgery there –  it’s too dangerous. Or certain types of radiotherapy, you’ll get too much radiation to your body, which means you can’t do any further radiotherapy. So it’s kind of a one chance thing, so you may want to avoid those kinds of radiotherapies, and I’ll be explaining about the various kinds of radiotherapies and the advantages and disadvantages, and various considerations, and how to choose.

Module 4 is all about Surgery and Radiotherapy. Now the reason that I put those two together, is often when you’re thinking about surgery, you’ll be considering non-surgical alternatives and those are typically the radiotherapies, or are not technically radiotherapy but for some reason the hospitals are done by the radiotherapy department. So something like radiofrequency ablation, which is using a needle inserted into the tumor and heated with radio waves to ablate or destroy the tumor. In some hospitals, that’s done by the radiotherapy department, in others it might even be done by the diagnostic department, because it’s guided by ultrasound or scanner guided. So that’s why surgery and radiotherapy are together. Also as I said, there are consequences if you have radiotherapy in an organ, it may be very difficult or dangerous to do surgery later on.

Module 5 is Chemotherapy and Targeted therapy. There are many many kinds of chemotherapy and many different chemotherapy drugs and different ways of using them, so I’ll be talking about things like HIPEC which stands for Heated Intraperitoneal Chemotherapy, but also things like metronomic chemotherapy (sometimes called low-dose chemotherapy) which I had.  That’s when you have continuous chemotherapy with no breaks, so I’ll be talking about that and why you may want to consider that. Targeted therapies (sometimes called molecular-targeted therapies), so things that target cancer tumors because the cancer cells have some labeling, (e.g. some protein markers on the surface of the cell), so they’re over- expressing something. In some types of cancer, molecular-targeted therapy is done together with chemotherapy, so that’s why I’ve put them together, with typically similar side effects as well, so it’s another reason to put them together.

Module 6 is Immunotherapy, the most cutting edge treatment, I think it’s fair to say.  Immunotherapy is a whole branch of oncology, it’s not a single treatment. I find it very very frustrating when I hear other patients saying they’ve been told that they don’t qualify for immunotherapy – that’s utter nonsense, completely meaningless. You may not get a good response from a specific type of immunotherapy.  You may be unlikely to get a good response from a whole range of immunotherapy-like related immunotherapies.  In my case for example, my cancer is “MSS” (microsatellite stable), which means that checkpoint inhibitors you hear about like Ketruda are unlikely to work for me if they’re given just by themselves. They may work when combined with other drugs. So I’ll be going into immunotherapy and the various types we’ve heard about in the media : CAR T-cell;  adoptive cell transfer immunotherapy. We’re particularly talking about NK cell immunotherapy which I’ve had a lot of, and that has special advantages over the T-cell immunotherapies that you should hear about,  and also the Dendritic cell cancer vaccines –  that’s a type of immunotherapy that should teach your body how to recognize and destroy the cancer cells. Again, that’s an immunotherapy that I’ve had quite extensively over the past six years.

Module 7 is all about Choosing Treatments, and particularly the questions to ask. Questions are a recurring theme of this course: asking the right questions at the right time; repeatedly asking the same questions; asking the correct questions to the correct people; asking the correct questions in the correct way.  These things make the difference between long-term survival and not surviving so long.  Potentially these are things that make the difference between being cured or at least reaching the state of no evidence of disease. There are also questions you need to ask yourself. In a way, thinking just means asking yourself questions and one of the best ways to do that is with a framework, which is just really a set of questions in a certain order, that you ask those questions of yourself.  So I’ll be going into that.

Module 8 is all about Clinical Trials: how to find them, how to get into them, what to do when you can’t get into a clinical trial. You may get rejected because of treatments that you’ve already had. That’s very common if the clinical trial is for a combination of drugs, and if you’ve had one of the drugs, unfortunately you’re often not eligible for that trial. There are alternatives to clinical trials – you can sometimes persuade researchers to do essentially a trial of one; a case study of one. Sometimes pharmaceutical companies will provide treatment for free or at least pay for the drugs / provide the drugs for free in certain cases. So I’ll go through that with you. Trials are very very important. I’ll say now the system of clinical trials worldwide is completely broken: it’s not fit for purpose,  it’s a big reason that so many people are still dying of cancer, but I’ll say more in the clinical trials module.

Module 9 – Crowdfunding. Cancer is very very expensive, even if you’re fortunate enough to be in a country with universal healthcare where it’s free at the point of use. There are lots and lots of costs associated with cancer. If you’re in a country of universal healthcare, you may still want to have some private healthcare in combination with standard care. You may use private care as a way to get quicker access to treatment. If you don’t pay for any of your treatment at all, there’s still lots of costs to be incurred for you and your family, so crowdfunding is the game-changing technology to use a cliche. It changes everything, so I’ll be talking about how you can use crowdfunding to give yourself the best chance of getting through all this.

Module 10 is all about Physical and Mental health. That makes a big difference to how much treatment you can deal with, and dealing with treatment is tough, very very tough. I did four years of quite brutal chemotherapy. I then did a year of low-dose chemotherapy. I’ve had radiation treatment. I had forty times proton beam therapy over an eight week period, and I also did 20 times tomotherapy for liver and para-aortic lymph nodes, and also 20 times for my right lung. So I’ve done a lot of radiotherapy, and three massive cancer surgeries. So it’s tough to deal with this stuff, and I think that physical and mental well-being are really important.

One thing I’m not covering in this course at all is so-called “alternative therapies”. There are some reasons for that. One is that I have no experience of those things, I’ve just stuck to science-based treatments and I’m trying to avoid talking about stuff that I don’t have at least some experience of. Another reason is I think the evidence for a lot of those treatments is very very weak. Maybe there’ll be stronger evidence in the future, but I certainly didn’t have time to wait for that evidence to appear and let’s be honest, I still don’t have time.

This is all about finding the treatments that are working now, getting early access to the new science-based treatments where there’s a good reason to believe it would work, like very robust preclinical studies, and maybe a known mechanism for it to work. So that’s why i’m not covering alternative medicine stuff, so please don’t ask me about those things. All I can do is politely decline to answer.

So what next? As I said, this is a free course but please donate or encourage friends and family to donate because that will help me make a better course for you more than anything else, and help me with my other work supporting cancer patients around the world. I’ve made an info page on the website for this, like an introduction of how the course works summarizing a lot from this video, so it makes sense to go to that page now –  the link is at the bottom of this video, as is the donate link.

Just one final thought I want to leave you with, is that really you’re not alone. Cancer is a very very lonely and difficult battle, even with lots of friends around you and family members. But obviously with this course, you’re getting connected to cancer patients all over the world, maybe some in an almost identical situation to you in terms of age, lifestyle, cancer diagnosis, level of cancer, that kind of thing. So this course obviously isn’t aimed to be a fun thing, but I think you’re going to find it very very useful, and hopefully enjoyable and practical, so you have the best chance of outliving cancer,  which is what this is all about. So I shall see you in module 1: Getting Help.

Take care of yourself, thanks.