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: http://karamoon.blogspot.jp/2016/09/cancer-q-part-1.html
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]  

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