Saturday, September 17, 2016

Cancer and Chemotherapy Interview with Mark Fonseca Rendeiro

Mark Fonseca Rendeiro interviewed me for his podcast Citizen Reporter.

We discussed the brutal side effects of chemotherapy for terminal cancer, looking after kids when you're dying, trying to keep things together when you are in the worst pain imaginable. Enjoy.

Please take a listen and leave a comment on his blog:

Tuesday, September 13, 2016

Cancer Q&A: Part 2

[Transcript kindly provided by Ivan Vanzaj and Osama Seghol]  
Hi this is video update number 4, this is the second part of the Q&A. Part 1 is here:
I asked people what were the questions they wanted me to answer. Thank you for
all your great questions. My friend Jacinta, friend and mentor, sent me lots of
very big, deep questions. So I'm going to do a whole video just on that later on.
For now I'm going to continue on questions I started answering in a previous
video for Angela, "Do's and Don'ts on having Cancer".

The basic do for any cancer or any other crisis. It's a three-step system that
will get you through any problem on earth. And it's disgusting we don't teach
this to children really. [Getting a bit upset now.]


The three steps are:

Number 1: Don't worry alone. This means you tell people what's going on to the
best of your ability. If you're not someone who can tell people what's going on,
then you trick yourself into pretending you're one of those people. Okay.
Don't worry alone, tell some people. It makes it much better. Choose people
carefully who you tell, try and tell the most helpful people first. Tell them if
you'd like them to tell other people. That helps a lot as well. It's very very
tiring to explain to people who either don't know your situation or only know a
little bit of your situation. When they message you or talk, they're asking
about your plans for the summer holiday, and you have to say:
"Well, I just found out I've got cancer, so all plans are off".


Number 2: Get the right information. This is so important. You ask your doctors, your
oncologist (cancer specialist), the surgeons, you have to be careful with the
surgeons, aggressively ask lots and lots and lots of questions:

- What are the alternatives to the surgery?
- What is the purpose of the surgery?
- Is it to cure the cancer or slow it down?
- Is it exploratory surgery to find out other stuff that's going inside?

You need to be asking those questions. In the UK we are very lucky to have so
many wonderful cancer charities that have really informative websites and book
clubs and books they can give you. Call up the cancer charities, ask them lots
of questions, or ask the doctor. Because it makes a huge difference.


Step number 3: Make a plan. If you're someone who doesn't make plans, you have
to trick yourself into pretending you're someone who makes plans. You have to
say to yourself, if there was someone else telling me I have to make a plan,
what would my plan be. Because planning has been proven beyond anything else to
effect the outcomes of any situation, even bad plans. Even plans that have to be
changed immediately. Just the action of making a plan will help you see if
you've got the right information or not. Actually, making a plan might calm you

So those are the three steps, they should be taught to all children everywhere.
It is pathetic we don't teach that to kids. If I had learned that system as a kid,
so much heartbreak and suffering would've been spared to me.

Now a big DON'T. Do not fall for so called alternative cures. There's one way to
cure cancer basically, which is surgery. It's not very nice. When you do surgery
(for cancer) you take what's called a margin. They take out the cancer and a bit
around it so they're damaging healthy tissue.

That's my daughter appearing in the background. "Hello Jessica". My son Edwards
is going to say hello as well.

Edward: Hello. Please help daddy spread the three steps so there are no
children except me know that.

[Laughs, ok, Edward, take Jessica and go play in the room please]


A big Don't is don't fall for alternative cures because there are none. Cancer
is cured basically by surgery. In some early cancers it can be cured by
chemotherapy or radiation. In some early cancers or in some situations where
surgery can't be used, because of the condition of the patient, there are non
surgical methods. They are very very specific to your situation. But you might
be lucky, well, lucky or unlucky, depending on how you're looking at it. With
liver cancer, for example, there are ways of doing the surgery by using highly
pinpointed radiation which is different from radiation therapy. It's called
Gamma-knife or Cyber knife. They have 95 different rays of concentrated radio
energy going into your liver and trying to destroy the tumor. Only can be used
if there's one small tumor basically and particularly if the cancer hasn't
spread somewhere else. But, cancer is cured by surgery. Cancer is slowed down by
chemotherapy. In some cases cancer can be shrunk by chemotherapy. Radiation
treatment works for somethings as well. They are all unpleasant obviously, very
unpleasant. But they work, they're proven to work.


The real proof beyond anything else is that life expectancy for people with
cancer who are receiving these treatments, has been going up year on year on
year, as these treatments improve. These treatments basically improve every 12,
well they are improving all the time, but not for the patients. They are
improving in testing. And basically every year, a country would publish new
guidelines on how to cure cancer. These are called protocols. That's why cancer
research is so important.


A lot of research is obviously funded by drug companies. You can say it's a bit
suspect.  What I think is suspect is the direction of the research. Because
they're always trying to... they are obviously going to focus on medicines that
people are going to be taking for a long time. These are effective, but a long
time. And that's a shame because there might be some very effective treatments
that are quite short. In fact, I'm having one of them. I'm having two
experimental treatments. These are not alternative treatments. They're
experimental treatments. There's clinical evidence in labs that they work. Not
anecdotal evidence, but clinical evidence. As in they get some cancer out of
people, put in test tubes, you know,  and animal tests as well. And this stuff

I'm having two treatments, one which is very expensive and complex called
immunotherapy. I'm having my first immunotherapy session on Friday. Two weeks
ago they took some of my blood, and they're using my own blood to make a
customized cancer treatment for me. In fact, they're going to try and make two.
One is the immunotherapy called Auto Logos Immune Enhancement Therapy (ALIET),
which is a very complex thing. They take out the blood, two weeks of playing
around with it in a lab,  making the white blood cells stronger to then put back
in your body as a drip. So I'm gonna go on Friday, and just spend 30 minutes;
I'll be sat on a bed or lying on a bed for 30 minutes, and they put this drip in
of my own white blood cells going back into my body. And they will hopefully
have effectively programmed them to attack the cancer. And then they also going
to try to make another type of immunotherapy which is a vaccine, like a cancer
vaccine. That's what the fund raising is for.

So, thank you for the donations. It makes a massive difference. Please tell people
you've donated, because it turns one donation into two, three, four, even more, and
makes me feel very good as well.


That's the very complex and expensive treatment. In English pounds it's
basically about 15 thousand pounds for a cycle of 6 treatments or might even
work out a bit more because it's some setup costs for each thing. And it's hard
to predict the cost because they basically do as much as they can in the lab.
So, they don't really know the cost until they do it. I mean, they are putting
in a lot of work. They are not asking money for nothing.

I'm having another treatment which is a very very simple treatment, and very
cheap treatment. It has some clinical evidence. It has evidence that it worked
for people who have other treatments. The reason it's hard to prove these kinds
of treatments, it's that usually you have them with something like chemotherapy.
It's very hard to say if there is a positive effect or if it is from this
treatment or is it from chemotherapy.


So, I'm having a treatment called hyperthermia, localized hyperthermia therapy.
Where they use radio waves to heat up the areas of the body with the cancer.
So, for me, it's targeted at the abdomen where my cancer mainly is. And it's
cheap, and easy to do. But there is no motivation for a drug company to do a
massive trial.  Even for the companies that make the machines. It's not an
expensive machine.  It's a simple treatment. You go in, they put some gel on
your body, like for me on the abdomen, where the radio waves are going to be put
it. And you lie there for 40 minutes.  It's very boring because you can't...
well, they say you can use your ipod... mp3 player or whatever. But they say it
might get destroyed by the radio frequency stuff. I might try it with a very
long pair of headphones that can be put on the other side of the room.  But
possibly, the headphones wire would act as an antenna, and it would make it even
worse. I think, I really don't want to risk my ipod because it's been a big life
line to me at the moment.

So, this is a very simple treatment that you think would be available for
everyone.  It's a treatment that seems to help people who are having
chemotherapy. Because the heat in your body induced by this machine damages the
cancer cells. Also if you have a large tumor, it's very difficult for the
chemotherapy to get into the center of the tumor because the blood supply is
bad. If you heat up the cells...  within 24 hours of therapy, then it can really
help a lot.  [phone ringing...]

I'm going to finish up this video now, and do another one in a few minutes.

[Transcript kindly provided by Ivan Vanzaj and Osama Seghol]  

Cancer Q&A: Part 1

[Transcript kindly provided by Ivan Vanzaj and Osama Seghol]  


Hi this is cancer update video number 3.
I've just had my second dose of chemotherapy, the side effects are starting to
kick in. They usually come two days after you've finished the chemo, so I'm
recording this on Tuesday evening Tokyo time, and I had my chemo Saturday
4 o'clock I think, so it's 48 hours, so that finished on Monday 4 o'clock,
and it takes two days for the poison to get out of your body.


The reason I'm hiccuping a lot is, it's one of the side effects. Actually it's
not a side effect of the chemotherapy; it's a side effect of one of the drugs
that you take to minimise the other side effects [laughs]. One of the very
common side effects of chemotherapy is vomiting. Because I have very low vomit
threshold which means I vomit very easily, I've been given the strongest anti-
vomit drugs before, during and after the chemotherapy. And one of those drugs'
side effects is persistent hiccups, which means hiccups that last over an hour.
At the moment the hiccups are not painful, they're just very annoying. Last time
when I had the hiccups I had very very extreme pain because every time I
hiccup...  (some acid damage happened in my oesophagus, but that acid damage
seems to have healed up). As you can see I've got a skin rash. That's not a side
effect of the chemotherapy. That's a side effect of drug that goes along with
the chemotherapy to help it work better. That skin rash is from my first
chemotherapy which was two weeks ago which was much much much worse than it is
now. It was, 24 hours of pain, terrible burning pain. I couldn't even sleep.
Yes, gash on my head is just because I just had to take very strong pills last
night that made me dizzy, and I fell over and gashed my head open which is not


This video is just going to be questions and answers really because lots of
people have asked me very good questions. So, it's going to be in random order.
I'll do my best, I know I'm speaking fast; I may slow my speech down a bit to be
clear especially with these hiccups. I haven't got the camera in a great
position either.

So, my friend Emily asked how am I feeling, and what was my life like before
getting the cancer diagnosis?  I'm feeling okay, really; physically anyway. I've
got these side effects. At the moment the only side effects I'm getting from the
chemo, as of this side effect today is like nerve damage in my mouth and tongue,
lining of my mouth, gums and teeth.  Which means if I have a cold drink it's
very painful. That kind of thing. I don't know why my lip looks odd, but other
than that I'm feeling physically okay.  Emotionally, I don't know, I guess I'm
okay as well [laughs].  I literally don't remember a lot of my life before
cancer. The memories have just been eclipsed by all of this. At the moment my
life is cancer 24 hours, really.  When I'm awake there's always something cancer
related going on.  It's quite an effort just to take care of myself on a daily
basis.  Especially making sure I eat and I drink enough. I need to hydrate a
lot.  Especially after the chemo. It might possibly help flush out the chemo,
stuff like that.  I don't know if that's true for my chemo, but it will
definitely flush out some of these anti side effect drugs. Just to give you a
very rough idea; days immediately after chemo, I'm taking 24 pills spread over
three days, different pills.  A lot of stuff, really.  So getting it flushed out
of my system is going to be a good thing.  So just remembering to take the
pills, I have to write a diary of the food and drink I have, and when I have it,
because if I don't, I often just don't eat because when I get hungry I
emotionally don't have an appetite. So thanks for that question Emily. Emily is
a dear school friend. Recently got back in touch with her after being out of
touch for 18 years, really. She's been lovely, she's made a couple of sweet
videos for me. I hated school, and she was one of the people who made it
bearable for me. So I really appreciate her friendship so much. It was just
great to get back in touch with her. And she seems to be doing really well, has
lovely kinds and that kind of stuff.


My friend Angela asked a lot of good questions, some of which I'm going to
answer in this one and some in a later video.
One thing she said: What support that I've been getting means the most to me?
That's a difficult question because I've been getting a lot of support, and it
all means so much! The thing that really means a lot is people watching these
videos, and if you can comment either on YouTube or when I post them on
Facebook, and if you can share these videos, that's really good.
The biggest practical support, which I said in a previous video, is when people
write on Facebook or elsewhere that they've donated to the cancer fund. Because,
melodramatic as that seems, that cancer fund is a chance for me to either buy my
life, can help me live quite a bit longer. Or, if it doesn't, it will still
probably improve the quality of my life because it's paying for immunotherapy
that boosts your immune system. Chemotherapy destroys your immune system.
So anything that boosts my immune system would mean I'm less likely to get the
infections that cause a lot of problems, cause people to stop taking
chemotherapy sometimes. Whenever anyone writes on Facebook they've made a
donation I see their friends or family members making other donations, who
don't know me, make other donations. So the donations, obviously is the
financial support, but also every time I see a donation it makes me very very
happy.  Because it's just amazing people, especially people I don't know.  You
know, donating their money. It's just incredible. So that's helped a lot, the
messages help a lot, the comments on Facebook help. I've generally been very
anti-Facebook in the past [laughs], but at the moment it's been a huge thing. My
family are not such a support, because it's very tough for them. They're
going through hell as well. They often feel there's nothing practical for them
to do.  My kids are a huge support because my son, who is 7, Edwards, he does
understand what's happening. He does understand I might not be around for a lot
longer. So, he has been very supportive.  My daughter Jessica, she is almost 3,
and she just continues regardless. And that's fantastic. She's full of energy,
and she's been growing up very very quickly.  That's lovely to see, especially
her language skills.


Angela also asked about, and also other people: What are the do's and don'ts for
when you have cancer?  I'd say the first big kind of thing you must do, if you
have a friend or family member with cancer, is tell them this: "You must be
clear on what your situation is. Really really ask the doctor questions, proper
questions, write them down before you go into the meetings because your mind
will go blank regardless of how clear headed you usually are."  When I was going
into the first meetings, I would write 15-20 questions down.  Literally sit
through, and tick them off when I asked, and wouldn't leave till I asked them
all. And the doctors, at least the UK doctors are very happy to answer all the
questions. And most of my Japanese doctors have been happy to answer the
questions as well.  And I write down their answer, and if I feel like I don't
understand them, I ask them again.

It is so clear to me that a lot of people with cancer do not understand their
diagnosis.  They don't understand like, what it really means, what cancer they
exactly have, they don't understand things like when cancer spreads from one
place to another, you don't have a second type of cancer. You've got the same
type of cancer in another place. So, I originally had bowel cancer that has
spread to my liver. I do not have liver cancer. I have bowel cancer and secondary
bowel cancer of the liver. Now the reason that is so relevant is because when you
tell people you have cancer of the liver, they might say: "Ah, I heard about
this great treatment, blah, blah, blah...", and you look into it, and it can't
be used for you because you don't have liver cancer. You have cancer that has
spread to the liver. If you have breast cancer that spreads to your lungs, it's
very different from having lung cancer that's caused by smoking or something
else, and it spreads somewhere else.

Very very important to understand the staging. Currently cancers are divided
into 4 stages.  Different aspects of the cancer, especially spread, are given
different stages as well. So understanding the staging, you know, stage 1 -- very
early stage cancer. Many many stage 1 cancers can be cured. Stage 2 -- I think
that means its spread locally in that organ. Stage 1 cancer might be one tumor
in the lung, stage 2 might be several tumors in the lung. Stage 3 -- it's spread
outside of the lungs, but still kind of local. Stage 4: it's spread to distant
organs. My cancer is stage 4. A lot of stage 4 cancers are terminal; meaning they
can't be cured.  Some stage 4 cancers, if you have chemotherapy, they can shrink
down the tumors enough, and even some of the tumors in lymph-nodes might even go
completely, and it could change into early stage 4 or even stage 3 or even
curable. You can have a cancer start at liver, spread somewhere else, and the
chemotherapy shrinks it down enough that you have liver surgery and have your
cancer cured, which is fantastic.


But if you did have or told you have cancer or family friend or member has
cancer, understand that when you reading about other people talking about their
cancers, especially if they have miraculous cancer cures; all that stuff is
basically nonsense. It almost always comes from them not understanding their
cancer.  Also not understanding the treatment they're having, and the purpose of
their treatment because it's very different to have treatment that is curative --
so they are trying to cure you. Or treatment that is trying to slow down a
cancer, maybe (unclear, helped by?) other treatment options. Or treatment that
is designed to stop the cancer coming back. So someone has chemotherapy, and
they're able to have surgery, they're often told to have more chemotherapy
because, it really does you a lot of good because it prevents cancer from coming
back. So you often hear these miraculous stories of someone saying: "I stopped
my chemotherapy because the side effects are so bad, and I went for a natural
cure and started chewing wine leaves or some nonsense like that, and I'm now
cancer free". Well, that person, their cancer is cured by the surgery, and
helped a lot by the original chemotherapy, and the doctors as a preventative
measure were recommending more chemotherapy which the person refused. And often
people who have their cancer cured by surgery, for some of them it doesn't come
back without having chemo, which is fantastic. It has nothing to do with chewing
wine leaves or whatever nonsense they come up with. So, when you read this stuff
on the internet, it is just nonsense.


So, thank you so much for listening. Please
go to the fund raising page and make a small donation if you can because it
makes a huge help for me. Okay, thank you for listening, please share this video,
and please leave a comment. Thanks!
Part 2 of this Q&A is here:
[Transcript kindly provided by Ivan Vanzaj and Osama Seghol]  

Thursday, September 01, 2016

I have terminal cancer.

I had a large cancer (4cm) removed from my bowel 4 weeks ago.

This was not cancer treatment, it was just to stop my bowel getting blocked, which is a fatal condition.

It was not possible for the surgeon to reconnect my bowel because there so much cancer in my body.

My recovery has been slower than expected. I had pneumonia after my surgery, and my intestines took many days to start working.

I had a second operation to put a tube between my shoulder and heart, for the chemotherapy.

My cancer is terminal, it cannot be cured. The average survival time is just 5-7 months
Generally chemotherapy is the best way to slow down cancer and extend life. It often gives people an extra 6-12 months of life.

But some research has shown chemotherapy on its on doesn't work for my cancer, because my cancer has spread to a membrane called the peritoneum. This is a type of internal skin that protects the organs of the abdomen.

So I need very advanced treatment to help the chemotherapy work, namely immunotherapy. This could give me longer to live.

Living longer means more time with my children. But it also means the chance of more treatment. Cancer treatment improves every year.

But can I live long enough to try the newest treatments?

Immunotherapy is a way of attacking cancer directly, using the body's immune system. The immune system can't usually attack cancer, it needs a lot of help and training. That's what immunotherapy does.

Immunotherapy is very expensive. I need about 15,500 UK pounds (2,000,000 Yen) for the first cycle of treatment. But my sister has already raised 12,000 pounds, so we are very close.

Can you help me? Can you make a donation, even if you've already donated? Even a small donation helps a lot because other people see it and it makes them want to donate too.
Please visit this page:
Matthew (Karamoon)