Feeling good

Four more weeks of thalidomide and then I send off another twelve vials of blood to Greece to see if the low-level micro tumor cells that were in my blood are gone.  I can tell you this, though: I feel really good and I’ve actually gained some weight. I weigh 160.

A lot of people have asked my opinion on the health care debate in Washington. Do I think there should be a national health care system? Yes, I do. Who's gonna pay for it? We are.

Private health care should available to all those who opt for it, but whether you have private care or not, everyone should be covered.

Why?

The leading cause of bankruptcy is medical bills.  In this country, if you don't have money or insurance and you get sick: Good luck.

It was two years ago today

It was two years ago today that I was diagnosed with stage four throat cancer. On that day, two doctors told me that if I didn't get a morbid operation, which would remove everything in my throat, I'd be dead within a year. I'll say it again: Take charge of your medical path. Be pro-active. I'm alive today, tumor- and cancer-free, because I took charge of my path. I can eat and swallow and talk because I took charge of my path.

“Uh-huh, oh... mmm, okay”

It's never easy. After my scan, the doctor comes in and says that everything was fine, the lymph node is normal and my entire body is clean.

“However, there's a hot spot at the base of your tongue that seems a little larger than before.”

In case you don't know, when you look at a PT scan on a screen, any irritation shows up as a brighter color. The doctor said that “just to be safe,” I should go to my ENT and have him look down my throat.

So I leave the clinic, go to treatment to get UVB and Vitamin C drip, and then head off to the Ear, Nose & Throat specialist. He first sticks a mirror in my mouth and looks at the back of my tongue and says he doesn't see anything. So he shoots some numbing spray in my mouth.

He says, “It tastes horrible.”

Fooled him; I can't taste.

Then comes another part I hate. He takes some gauze, pinches my tongue and pulls it out. Then he sticks a scope down my throat and looks around, saying, "Uh-huh, oh... mmm, okay".

Then he gets up and leaves the room.

I'm thinking that's not good. I've heard, “Uh-huh, oh... mmm, okay” before.

He comes back in five minutes and says the hot spot is from the radiation and there's nothing to worry about. 

So why did he make me sit for five minutes and panic?

Bottom line my scans were clear. Thanks to everyone for your good thoughts and prayers.

Year 2

I  get scanned again on Thursday. I always get anxious before a scan because I hate going in that tube. Being claustrophobic is no fun.  I hope you've all been following the great health care debate in Washington. It's just what I expected: Republicans on one side and Democrats on the other. I think President Obama will get his affordable health care for all and that's great. It won’t, however, stop the insurance companies from not paying your claims. The big question in Washington is who's going to pay for the health care overhaul. I can answer that: We are. It's called higher taxes.  I don't mind paying if the system works, because take it from someone who’s been deep in the middle of it: right now, it's a joke.

I started this blog on July 28th, 2008.  I can't believe I've been blogging for a year now. Thanks to everyone for your support.  I'll let you know the results of my scan on Thursday.

Patrick Swayze

I read an article in the Daily Mail newspaper from London about Patrick Swayze and his cancer battle. He looks much better than he did three months ago.

The article said that tubes hanging out the front of his shirt were thought to be catheters for his chemotherapy. That's probably true. He's on a twenty-four hour pump that puts a tablespoon of chemo into him every hour.

I did the same once a week with a drug called 5FU. It made me sicker than a dog. Now I know what the FU stands for...

Anyway, the good thing about the article is that it talks about the CyberKnife as an advanced form of radiotherapy. That helps to get the word out. It's an option for those who don't want traditional radiation. It is not widely available, although the number of centers offering the treatment around the world has grown to over 150.

The article also mentioned that Patrick was seen taking a couple of cigarette breaks.

Cigarette breaks? Are you kidding me?

Here's a news flash for you, Pat:

Cigarettes cause cancer.

QUIT SMOKING!!!

England gets the CyberKnife

England has finally gotten is first CyberKnife.

It was reported yesterday in the UK Mirror:

CyberKnife gives cancer cure hope

13/07/2009

A hi-tech device has given ex-BT worker Robert Ferrant hope of beating his inoperable pancreatic cancer.

Dad Robert, 62, was given just months to live after being diagnosed with the same condition that has struck movie star Patrick Swayze.

But now he has become one the first people in the UK to go under the CyberKnife-- a machine for high-powered, laser-guided radiotherapy.

Reportedly also used by Swayze, the device blasts radiation at tumours too near major blood vessels for other treatment. Robert had three two-hour sessions last week.

He said: "Other treatment would extend my life by three months. With CyberKnife, I've hope of a cure."

Robert, from Jersey, was treated in London's Harley Street. The device and its leadlined bunker costs £6 million.

***

Well, now that they have the CyberKnife, I hope they take full advantage of it.

Here in Los Angeles, we have a CyberKnife at the USC medical center, but according to the USC medical administration, it's not used all that often. A patient’s oncologist has to prescribe it, and most do not. Get this: out of the three radiation oncologists I had here in the States, two of them were not familiar with the CyberKnife at all, and the third was completely misinformed about it!

I realize that the use of the CyberKnife depends on the shape of the tumor and where it’s located, but I also know that the CyberKnife kills the cancerous tumor with no side effects.

That’s right. Unlike traditional radiation, the single blast of the CyberKnife does its work with no residual problems.

The evening after I was cyberknifed in Munich, I went out and had Chinese food.

I could taste the food-- and I had all of my saliva glands.

After a single week of traditional radiation, it took me two hours to drink a cup of chicken broth.

Now I have one saliva gland and I can’t taste anything at all.

No, I don't have cancer

Since I posted that last entry about the micro tumor cells in my blood, I’ve gotten lots of e-mails and phone calls from other cancer survivors, patients, friends, and concerned strangers. So first off, let me answer the question I’ve gotten most:

No!  I don’t have cancer again!  I have no tumors or cancers anywhere in my body.  What I do have are “micro tumor cells” in my blood still.  It’s very low-level and doctors here in the States wouldn’t even find them with the tests they do here.  I sent samples of my blood to Greece, and that’s how they were spotted. My doctor at The Klinik in Germany has started me on a new treatment to get rid of them (see my last post). I get scanned again in three weeks, and then I’ll send more blood to Greece for another blood test.

I will continue to do this until my blood is clear of everything... except Vodka.

The other big question is about that micro tumor cell blood test. Lots of people are  asking me whether the test is legal in the States-- and where can they get tested?

I’ve sent everyone the information on The Klinik and my doctor in Germany. 

I’ve also been e-mailing this article I found online:

Microchip Based Device can Analyze Cancer Cells in a Blood Sample

    A team of investigators from the Massachusetts General Hospital Biomicroelectromechanical Systems     (BioMEMS) Resource Center and the MGH Cancer Center has developed a microchip-based device that can isolate, enumerate and analyze circulating tumor cells (CTCs) from a blood sample. CTCs are viable cells from solid tumors carried in the bloodstream at a level of one in a billion cell. Because of their rarity and fragility, it has not been possible to get information from CTCs that could help clinical decision-making, but the new device – called the “CTC-chip,”– has the potential to be an invaluable tool for monitoring and guiding cancer treatment.

Read the whole article here: here.

And to answer the question of whether the test is done in the States, here’s how the article ends:

    Considerable work needs to be done before the CTC-chip is ready to be put to clinical use, and the MGH investigators are establishing a Center of Excellence in CTC Technologies to further explore the potential of the device, which also has been licensed to a biotechnology company for commercial development.

They've been doing this blood test in Greece and other countries in Europe for years.

I had my blood drawn here in Los Angeles, sent it to Greece, and the results were then forwarded to my doctor at The Klinik.

Micro tumor cells

I got the results of my blood test for micro tumor cells back from Greece. There are still some remaining tumor cells in my blood-- but a very low amount.

According to my doctor in Germany, we’ll start by trying to get rid of them with natural supplements and thalidomide:

Quercetin 500 mg - 2 pills in the morning and 2 in the afternoon
Shark cartilage 700 mg - 2 pills in the morning and 2 in the afternoon
Vitamin C drip 30 g in 250 ml NaCI once a week (I already do this)
Thalidomide 100mg before bed. (for a month or two)

By the way, this is a very normal procedure in Germany.

I don't know why we don't do this blood test here in the States. It will help prevent this disease from returning.

I had a blood test at the clinic here last week and they told me my blood was perfect.

I'll be talking to my doctor in Germany tomorrow.

I'll keep you posted.

I forgot to eat last night

I got on the scale this morning. I've gained five pounds in six months. And I’ve been fighting hard to keep those five pounds on. I need to gain twenty pounds. At this rate, it'll take me two years. I'm trying to eat as healthy as I can when I remember to eat. Yes, I have to remember to eat. (I forgot to eat last night - not good.) It's very strange not getting hungry and, because of radiation, not being able to taste anything when I do eat. I know I'm supposed to eat by the clock but that sucks. Just because my clock tells me to eat doesn't solve the problem that I'm not hungry. I would love to find out why some people who get head and neck cancer lose their appetites.

Farrah's legacy: "Keep fighting"

I went to say goodbye to my friend Farrah yesterday. Her funeral service was beautiful. Her son Redmond read Lamentations 3:17-26, Ryan O'Neal read Wisdom 3:1-9. The eulogies were done by Alana Stewart and Dr Piro. Both were very moving. It was strange for me in a way. Farrah and I were both fighting for our lives at the same time and she's not here anymore. When we were in Germany at The Klinik, I was only three months in to my disease-- a rookie, so to speak. Farrah had been battling her cancer for over a year. In our six-hour drive to Frankfurt, her strength, determination and fearlessness were an inspiration to me in fighting this hideous disease.

Farrah said to me, "Never, ever give up. Keep fighting."

We spoke of the need for changes in our medical system and how to make treatments that are not available in the States made available to all.

I will continue to fight for those changes in the system and more options when it comes to treatments. I promise that I will never, ever give up, and I will keep fighting until our voice is heard.

I know Farrah will be watching.

Billions in profits, millions of lives

Having lived in Canada for a year and a half and in England for almost two years, I can tell you firsthand that National Health Care or government-controlled health care really doesn't work very well.

In theory, it sounds great: You get sick, you go to the doctor, he or she takes care of you, and you go home. It's free!

Well, that might be the case if you have a minor ailment like a sore throat or the flu, but if you have a serious illness like cancer or heart disease-- that is, a major illness that needs special treatment-- you may have to wait in line for that treatment.

My mother-in-law, who lives in London, is one example. Many years ago, she had breast cancer and underwent a mastectomy and radiation. Ten years later, a tumor was discovered to be growing where her breast had been removed. The doctor decided to try more radiation before scheduling an operation.

So he scheduled her for radiation treatments-- in three months. Three months?! We all knew she could be dead in three months.  It was cancer.  It could metastasize to her lungs, brain or liver.  It took a number of phone calls to the doctor in England and a little muscle from some high-profile friends to get my mother-in-law in for radiation two weeks later.

Seventeen years later, she's still alive and doing very well. (I could do a number of mother-in-law jokes right now but I won't.)

Of course, all of this relates to President Obama and health care reform.  I’ve been doing some research in these health care and insurance issues and just finished reading a book written by Richard E. Ungar. “Understanding The Health Care Debate” is about health care and insurance companies.  It’s fascinating-- and I’m not just saying that because Ric’s been a friend for more than 20 years.

Here’s a quote from the book (I hope Ric won't mind, and if he does, I just won't answer the phone. Caller ID the best invention in the 21th century):

                   In 2006, the health insurance industry made a collective profit of $15 billion--
                   a 1,084 percent increase in five years. Here are the profit numbers for the top
                   four in 2007 as listed by Fortune Magazine:

                           1. United Health Group -- $ 4.159 Billion.

                   United Health’s companies include Oxford, PacifiCare, IBA, AmeriChoice,
                   Evercare, Ovations, MAMSI and Ingenix, a healthcare data company.

                           2. WellPoint -- $ 3.095 Billion.

                   Wellpoint’s companies include all of the BLUES across the US, including
                   Anthem Blue Cross Blue Shield, Blue Cross Blue Shield of Georgia, Blue
                   Cross Blue Shield of Wisconsin, Empire HealthChoice Assurance, Healthy
                   Alliance, and others.

                           3. Aetna Inc. -- $ 1.702 Billion.

                           4. CIGNA Corp -- $ 1.155 Billion.

Need I say more?

What runs downhill

I'm posting on my iPhone from my doctor’s office while getting maintenance treatments: one IV drip of Vitamin C and another of an anti-oxidant I can't pronounce, let alone spell. And of course, UVB. I spoke to my doctor in Germany today and she told me there’s a new anti-body that kills all cancer cells. That's amazing.

MeanwhiIe, I've been following the health care debate and through it all, it seems that nobody is talking about the real problem. Yeah, we all agree about the importance of affordable health care and the ability to choose your own doctor and blah, blah, blah-- but the big issue is that the insurance companies have too much power and control over which treatments and medicines we're given by our doctors. The doctors won’t stand up to the insurance companies. We all know what runs downhill and it lands right on the patient’s head.

In order to really fix this health care problem, we need laws that force insurance companies to pay for what the doctors order. I’ve said it before: How can Blue Cross tell me what I need when they’ve never examined me?

Treatment’s done. I'll continue tomorrow.

NOT alternative

Many of you know that I appeared on the syndicated television show Extra last week, talking about Farrah and my own experience being treated at The Klinik. The segment and the surrounding publicity really led to a big response. I have to say it’s been overwhelming!

I've received so many e-mails, messages and phone calls that I can't reply to them all. But I’ve been reading every one, and along the way noticed a word that’s common to almost every message. The word is "alternative.”

“Alternative.” The word’s been used a lot describing the treatment I received at The Klinik, because it’s an “alternative” to the limited options offered here in the States. But to be accurate, I was not treated with alternative medicine.

Just so we’re on the same page from now on, I’ll offer the definitions:

Conventional Medicine: A system in which doctors and other healthcare professionals (such as nurses, pharmacists, and therapists) treat symptoms and diseases using drugs, radiation, or surgery. Also called mainstream medicine and Western medicine.

Alternative Medicine: Practices used instead of standard treatments. They generally are not recognized by the medical community as standard or conventional medical approaches. Examples of alternative medicine include dietary supplements, megadose vitamins, herbal preparations, special teas, acupuncture, massage therapy, spiritual healing and meditation.

Here's what I was treated with:

Complementary Medicine: Practices often used to enhance or complement conventional treatments. They generally are not recognized by the medical community as standard or conventional medical approaches. Complementary medicine combines mainstream, western medicine with alternative medicine.

Alternative? Complementary? Remember this: Insurance companies won't cover either medicine.

We really need to get insurance companies to cover alternative care and complementary care.

That would give us all more options for being healed.

(You can see the Extra segment by clicking here.)

Real health care reform

                         

                         WASHINGTON - President Barack Obama predicted travails ahead for

                         the struggle to pass health-care reform but offered a hopeful outlook

                         for passage of legislation providing access to insurance coverage for

                         all saying "the stars may be aligned" for a deal on a goal that eluded

                         the last Democratic president... Obama said he is "absolutely committed"

                         to moving forward with a health-care plan...

I watched President Obama on C-Span speaking about health-care reform and was frustrated because he was only addressing one part of the problem. All he talked about was affordable health-care for everyone. That’s great. I have affordable health-care. I pay $278 a month for it. But whether it's affordable or not, a big problem remains.

Okay, follow me here...

I have to go to a dentist that deals with people who've been through radiation for head and neck cancer. The dentist is $350 a visit. Even though my Delta Dental insurance covers the treatment, the dentist makes me pay him in full after every visit. He says the insurance companies often refuse to pay him, so he leaves it to the patient to deal with it. After every visit, I pay the dentist, and the dentist gives me a “super voucher” that I send into the insurance company in hopes I’ll be reimbursed.

Then my first ENT wouldn't take Blue Cross because they don't pay, so I had to pay after my visit. He was $600. Then there’s my other doctor for vitamin C drips and other "alternative" treatments that are very necessary but not covered by insurance at all: $550 a visit. If you haven’t been doing the math, that's $1,778 out of pocket. The $1,500 that I paid out and sent in super vouchers for reimbursement, so far I've gotten back $0 from my insurance company.

I also needed two procedures when I had cancer that my oncologist said were necessary for me to be cured. One cost $2,700 and the other was $800.00. My insurance company insisted that both the procedures were not necessary and would only cover one of them. They paid the $800 one and left me to pay the $2,700. After eight months of phone calls to my insurance company they finally paid for both.

My question: Who's treating me? My doctor told me I needed those two procedures and my insurance company told me I only needed one. Who do I listen to?

Why not eliminate the doctors and let the insurance executives treat us?

I hope you can see the inconsistencies within the system. Simply put: insurance companies won't pay the doctors, so the doctors don't take insurance and have "pay immediately after visit policies" and let the sick chase the insurance companies with super vouchers.

Follow-up

After my scope and scans were clear, my American doctors told me I was all done, to go home and they would see me in three months for another scan. My doctor at The Klinik in Germany e-mailed today to let me know she’s sending me a kit for micro-tumor testing and to make sure my blood is clear.

That’s a procedure they don't do in the States.

The kit is made up of different sized vials to be filled with my blood. Last time there were fifteen vials. I’ll fill them and send them to The Klinik. Then I'll go to Germany and receive a vaccination of the blood's healthiest cells to keep me tumor free.

That’s another procedure they don't do in the States

My doctor at The Klinik also wants me to continue taking Neurium and Hepa Merz for my liver and to control and rebuild my immune system.

(That bump near my shoulder is the catheter port they inserted when I began chemotherapy. I have to keep it for another year.)

Farrah's real story

It was really tough for me to watch Farrah's Story on NBC the other night. Farrah Fawcett is my friend. I pray that she's comfortable and not in any pain.

But here's the deal: The special didn’t get it right, and the review in The New York Times hit it right on the head:

"...Ms. Fawcett’s reliance on European alternative treatments is more poignant than persuasive. Her exuberant German doctors seem far too giddily invested in their visiting patient’s fame to give her realistic prognoses — or even dissuade her from flying home to Los Angeles before she was strong enough to travel..."

Most of the doctors on the special were and still are my doctors. Dr. Jacob and Dr. Vogl are NOT AT ALL like they were portrayed in that special. They are absolutely brilliant. Dr. Jacob is the most focused, passionate doctor--make that person-- I've met in my life. Google Dr. Vogl... enough said about that.

As far as their convincing Farrah to stay in Germany until she was strong enough to travel, Dr. Jacob told her exactly what could happen if she flew home too soon and strongly suggested that she stay at The Klinik for a couple of more days. Farrah’s friend Alana Stewart told her the same thing.

How do I know? I was there. I was in Farrah's room when Dr. Jacob called and said that Dr. Vogl had suggested that Farrah stay at least one more day. I also urged her not to leave. But Farrah had made up her mind and she was going to go home no matter what anyone said and that was that.

That's what really bothered me about the special. I'm guessing that NBC News had more than a hand in the final cut.

Here's another quote from The New York Times:

“...During one painful procedure, a German doctor asks Ms. Fawcett to name her best work. The actress mentions a few of the films she made that were critically acclaimed, including ‘Extremities’ and the television movie ‘The Burning Bed.’ The doctor reminds her about her 1970s television show ‘Charlie’s Angels.’ Ms. Fawcett replies weakly, ‘Well, I only did that for one year’...”

The first time Farrah had the tumors burned off her liver by Dr. Vogl, I was in the next operating room being prepped for my first embolism. For both procedures, the patients have to be awake. They only give you a local to numb the area for entrance. Dr. Vogl will talk about a number of things during the procedure, but make no mistake about it, the first thing he does is explain what he's about to do to you and what you should expect to feel during the procedures.

I know for a fact that Alana has that on tape. I was there.

One last quote from The New York Times and then I'll shut up... for now.

"Those trips evidently gave Ms. Fawcett hope and lots of encouragement and personal attention, but the film doesn’t shed much light on how much or whether the treatments actually helped..."

Point blank Ms. New York Times: “Hope... encouragement... personal attention... or whether those treatments actually helped?” Farrah went to Germany because doctors here in the States told her there was nothing else they could do for her. That was almost two years ago.

Let’s consider the choice: Go to Germany for what they call "alternative" treatment-- or stay here for what I call "primitive" treatment.

I've had both. I choose “alternative.”

One more thing: At the end of the special, Farrah said, "I have some questions. Like why isn’t there more research done on certain types of cancer? And why doesn’t our health care system embrace alternative treatments that have proven to be successful in other countries?”

How about these questions, among others:

Why do some medicines cost five to ten times more

in the United States than they do in Germany?

Why don't we do chemotherapy sensitivity tests here

like they do in Germany and other countries?

And why is the United States of America so far behind

in treatment for this horrendous disease?

Charlie revealed

I've received quite a number of e-mails asking about The Charlie Foundation. Everyone wants to know who Charlie is. Charlie is my dog. He’s a Boston Terrier. We got him as a stray when he was about four months old. About six or eight months before I was diagnosed, this little dog would alway lick me on the right side of my neck, the same side where the tumor was. For the better part of a year, I was sick in bed and Charlie never left my side. He would get up and eat and go out when he had to and then he would come right back into the bedroom and lay next to me. Every morning when I would wake up, this little dog would lick my neck where the cancer was. So the logo for the foundation will be a photo of Charlie, with a cartoon bubble coming out of his mouth saying, "We can lick cancer."

Farrah... and Charlie

Long time no blog. I want to let everyone know that Farrah's documentary about her ongoing battle with cancer airs tonight on NBC.

I'm sure you've all heard the news reports about her situation. I'll tell you point blank: Farrah is a fighter and an inspiration to all. She definitely inspired me during both of my cancer battles.  Everyone can do me a favor and tonight while her documentary is on, let's all think positive, healing thoughts for her.

I told Alana Stewart to tell Farrah I haven't heard the fat lady sing; keep fighting. I decided that it's politically incorrect,what I should have said was I haven't heard the “plus-size lady” sing.

As far as my health goes, I'm doing so much better. I still get tired and I'm still a little sore at times from the radiation in my body but it’s nothing like it was. I'm sure that in the next couple of months this will pass. As much as I hate them, the daily epsom salt and baking soda baths help so much.  So do the daily saunas.

The one problem I still have is eating and gaining weight. I got up to 156 pounds. I lost a few pounds because I forgot to eat.  So I'm 151 today.

I know what you're thinking:  How do you forget to eat?  Well, it's simple. I'm not hungry. I have no messages from my stomach to my head telling me I'm hungry. My brother Mark sent me boxes of this stuff called Benecalorie that has 330 calories per serving. I try to have two of those a day.  I just have to try to eat more, that's it.

I'm in the process of starting a foundation to get proper cancer treatment for people who can’t afford it, whether it’s here in the States or in another country.

I'm waiting to find out if the foundation name clears.

It's called The Charlie Foundation.

I'm done! No cancer and no tumor.

I got my scan results today and they were negative. No cancer and no tumor. It's hard to believe, but I'm actually done with treatment. I will continue my vitamin C and UVB treatments because they will help me recover faster. The nurse who takes my blood said it's amazing that I beat it twice without surgery. I told her it was thanks to The Klinik in Germany.

I feel kind of strange. I've been living with this for almost two years and it's over. I want to seriously thank everyone for their prayers and positive thoughts. That is the best medicine there is. I will promise you this: I will not stop until we fix our medical system. Pharmaceutical companies, insurance companies, hospitals and doctors, here we come!

Tonight, I shall celebrate with several martinis. Just don't tell my doctor.

Yippie-ki-yay, motherf#%@er!

I can't tell you how much I hate being scoped! As he's shoving the cable up my nose, we're watching on the monitor. And the guy is giving me a tour.

"There's the inside of your ear and that's the back of your skull..."

Okay, great. Now how about down my throat, look around and get that damn cable out of my nose!

That being said, my scope went well. The doctor said my throat looks really good. There is still some swelling on the left side. The doctor said he thinks that's from the radiation.

He suggested I do the PT/CT scan (which I’ll do tomorrow). He did say-- and I quote:

"I believe unequivocally that the swelling is not cancer."

Yippie-ki-yay, motherf#%@er!

Doctors' orders

I try to take Sundays off. That's my cancer free day. What happened this morning, however, makes me crazy. I was contacted by a lady whose father has kidney cancer. She was asking me questions about Germany. I asked her some questions about her father, like when was he diagnosed, the stage of his cancer, and ultimately, “How's he doin' today?” She said her dad was in a lot of pain, and had been in a lot of pain for about the past three days.

When I asked what painkillers he was taking, she said he wasn’t taking any. Their doctor, she said, told her that according to the records, her father shouldn't be in that much pain.

According to the records? What the hell is that! Are you kiddin' me?

My outrage was immediate. But I said, very calmly, “Listen very carefully to me. I'm going to hang up, and when I do, I want you to call your doctor and be very nice, but say this to him: ‘My father is in a lot of pain I don't care what his records say. If you don't write him a prescription, then I'll find a doctor who will.’”

Guess what? Her father got the painkillers.

Take charge of your medical path. Again, be proactive. Get as much information as you can. It's out there. If your doctor says something that doesn't sound right or you decide you don't want to seek that option at this time, then don't. No matter what any doctor says.

Remember, I was told by my doctors that I’d die if I went to Germany.

They canceled my scope

My doctor in Los Angeles had an emergency operation to perform, so they canceled my scope until the seventh. Damn, I was actually looking forward to him to sticking that long cable up my nose and down to the bottom of my throat and wiggling it around-- I was soooo happy! I hate getting scoped.

Now, I wasn't going to write about this but I think it's important that we are all on the same page about something: Over the weekend, I was at the NY Metro Fest For Beatles Fans. I was there with my company’s new documentary feature, The Seventh Python. We had a Q&A session after the film and I decided to talk about The Klinik-- and that led me to tell everyone about the foundation I will start to give other cancer patients the same opportunity that I’ve had-- the opportunity to save their lives.

Well, I’ve received so many messages and e-mails and calls that are very flattering and I thank everyone who’s reached out. This path, however, isn’t about me. It's about us and our children and our grandchildren. Somebody has got to do something to change the way our medical system runs, the way the pharmaceutical companies control, the restraints placed on doctors by the insurance companies, and force the AMA to allow medicine that has been tested and proven in other countries to be administered in the United States.

On a more upbeat note, I just sent two patients over to The Klinik. I'm so happy they are there, I don't even know what to say.

Eating by the clock

I’m back from the Beatles Fest in New Jersey. It was quite a weekend (you can read about it here).

This is “doctor week.” I went to my doctor here in Los Angeles yesterday to have my blood checked before I get scoped tomorrow.

I hate getting scoped. They scope through the nose down to the bottom of my throat-- no fun. My doctor said I looked good, but skinny. I would say 141 pounds is not my fighting weight. He asked if I was eating and my reply was, “Yeah. When I think about it.”

I'll try to explain. As I’ve mentioned before, my doctor here told me that for some unknown reason, people who’ve had head or neck cancer lose their appetite. Radiation then takes away your ability to taste. In my case, my one remaining saliva gland can’t break down certain foods, so I can't swallow them. Imagine your stomach not sending a message to your brain telling you that you're hungry.

So my doctor said I have to eat “by the clock”: Breakfast at eight, lunch at one, and dinner at seven. He's right, I know, but I'll say it again: 

It's hard to eat when you’re not hungry!

I later went to my other doctor here to have my intravenous drips of Vitamin C with minerals. I guess that since I can't have a drink, Vitamin C drips have replaced vodka martinis.

I'll blog again after my scope.

Shocking my doctor

I went to see my radiation oncologist last Friday. He wanted to check me out before they scope me on April 2nd. He walked in with his nurse and when they saw my neck and the area where I’d been radiated, they both were shocked.  They couldn't believe how good my skin looked. The nurse asked what I had done. 

Well, here it goes:  I was watching a documentary on TV about burn victims and how they are treated.  They were showing this guy who’d burned his arms in a car fire when I noticed that some of his burned skin looked like the skin on my neck. (After radiation it turns a chocolate brown color and stays that way.  I've met other neck cancer patients whose skin is still chocolate brown and very rough, two or three years after radiation.) In the documentary, nurses used a loofah-type sponge and warm water to rub off the burn victim’s dead skin off.  The brown skin was gone.

I got out of bed, got into the shower, took a soft loofah cloth and began to remove the dead skin from where I was burnt by the radiation.  I did it whenever I’d see a layer of that dark brown skin.  It hurt a little, but I took my time and got rid of all the burnt skin. Then I rubbed in this medicated ointment called Aquaphor, twice a day.

When I finished telling them what I'd done, there was silence.  Then my doctor said, “Wow, it looks great,” and the nurse smiled and nodded.

On another topic, I've been talking to a number of cancer patients and their loved ones about the treatment I've received and the fight that must be put up to beat this horrible disease-- and notice I wrote "beat" this horrible disease, not "try to beat" this horrible disease. No matter how bad you feel, never give up and never stop fighting. A positive attitude is healing. Do whatever is necessary to make yourself feel as good as you can while you're going through treatment.

I'll say it again:

Take charge of your medical path. Be proactive.

Just because they're doctors and have diplomas on their walls and wear white coats doesn't mean their diagnoses are the way you want to go.

Get other opinions.  Find your path to beating this horrible disease.
 

(The photo shows me getting drips of pure Vitamin C.)

The only baby picture of me

Long time, no blog. Let me bring everybody up to speed:

The trismus-- that tightening of my jaw as a result of the radiation-- is gone. I just did the painful exercises and got through it. It was an unexpected and painful ordeal, complicated by thrush. To give you an idea of just how painful it was, I had to cancel my appearance at the Chicago International Movies & Music Festival, where my documentary was being screened, and wrote in an email to my production partner:

“...been up since about 3:30 am. My mouth is dry to begin with because of only one saliva gland, but the thrush dries it even more so it's hard to swallow and when I sleep, my mouth and throat get so dry they stick together and it's hard to breathe. And my knees, hips, elbows and shoulder blades all feel like I've been in a street fight... But one a good note: I don't have cancer anymore!”

After the thrush set in, I called my doctor here in Los Angeles, and he immediately prescribed some drug to take five times a day for 10 days. I don't think I can take any more chemicals in my body, so I spoke to a friend of mine named Monica. She sent me to a website called Earth Clinic, which had a home remedy for thrush. I thought I had nothing to lose and might as well try it. If it didn’t work, I’d just go for the prescribed chemicals and just eat it. Well, to my surprise, it worked! And worked fast. My thrush was completely gone in a day and a half.

The remedy?

Take two tablespoons of Milk Of Magnesia

and two tablespoons of water.

Mix together.

Gargle three times a day.

That's it. My doctor here had no comment after looking in my mouth and seeing it “so clean,” as he put it. My thanks to Monica. I've stopped taking all pharmaceutical and chemical medicines except the shot from Germany that stimulates my adrenal glands.

I’ve got only two more shots to go, and than I’ll be done with chemicals and only taking holistic natural supplements.

I get scoped the first week in April. Then I'm done with treatments in the States. I have to go to Germany for about a week in April. There I'll do heat therapy, get UVB blood work and receive the usual doses of vitamin C with minerals, Vitamin D with amino acids, Vitamin B12 drips, and the rest.

I still have my good days and my bad days, but that too will end.

PS: I've gained a little weight. I now weigh 158 pounds. I'm trying to get to my original weight: 10 pounds 13 ounces.

(Above: The only baby picture of me)

Trying to find fun in the pain

My jaw is killing me. It hurts just to talk. If I don't move my mouth to much to talk it's palatable. I try to find the fun in the pain and I'm becoming a very good ventriloquist. My doctor at The Klinik emailed me to say that I’ll begin amino acids IV drip treatment next week. The drips will build up the proteins in my body which will help strengthen me while helping restore my immune system, which is totally trashed. It's funny: when I look in the mirror I have a hard time seeing the old Brett. This is what I looked like before cancer and this is what I looked like after:

I was 244 pounds before. Now I'm down to 151.

Remember: Try to find the fun in the pain.

Later today, I go to the doctor for my jaw.

A not-so-merry Trismus

Ever heard of Trismus? Me neither... not until I found out about it this week.

It's funny, if I were a doctor and about to give a patient radiation, I'd tell the patient about ALL the side effects not just the line about, “We're going to give you something and you’ll wind up with the worst sore throat you've ever had and blah, blah, blah, blah...”

Well, on Thursday the left side of my jaw bone started to get a little sore when I opened my mouth. Now, it's getting a little worse and I'm having a hard time opening my mouth wide-- like when I try to take a bite of food that I try desperately-- and need desperately-- to eat.

I’ve got radiation-induced trismus.

I had to look it up online to find out what was going on. According to the medical books and what the doctor could have warned me about to begin with, was that radiation therapy leads to trauma that requires repair. Repair results in scarring, which generates collagen, which leads to fibrosis of the connective tissue and results in the tissue tightening and stiff. These cellular and extracellular changes result in the limited jaw motion that they call “trismus.”

On a positive note, I got an e-mail from my doctor at The Klinik in Germany, saying that when I arrive there, she’ll give me medicine that the AMA hasn't approved. One is an IV drip of a medicine called Hepa-Merz, which will help heal my liver that’s been swollen from chemotherapy.

(I told her that I consider the healing of the liver to be preparing the liver for vodka. She now knows me well enough to ignore such remarks).

I'll also get a shot of Synacthen once a week -- to stimulate the adrenal glans to stimulate my appetite and help me gain weight-- and an IV drip of something called Neurium 600 injekt. This will make me feel better overall and help repair any nerve damage from the radiation.

I know two of the products work because I've already used them the last time I was at The Klinik.

Did I mention they’re not approved by the American Medical Association?

One more thing: I hope everyone is keeping up with President Obama's health care plan. In his address to Congress, he spoke of getting insurance companies to actually cover preventative medicines. Here’s a list of preventative medicines I've received from my doctors here and the ones I've received and will receive from The Klinik in Germany to prevent this cancer from returning for a third time:

USA

(receiving now)

Blood tests

Nuprigen shots (if my white blood cell count dips too low)

Germany

(When I go to The Klinik)

Neurium 600 injekt

Synacthen

Hepa-Merz

MPA 500mg Hexal

Derma-Recov. Growth Factor (for taste buds)

Holistic Medicines

(I've been taking some of these all through this second bout;

my American doctors would say they’re a waste of time)

Vitamin C and D with minerals IV's

(for my immune system)

Kimun (liver)

Mulgatol (vitamin B) (appetite

ICG-forte (immune system)

Boswellia (immune system)

Anti-Oxidant (immune system)

Selenium (cancer preventative)

Milk Thistle (cancer preventative)

Cats Claw (cancer preventative)

Astragalus (cancer preventative)

Also:

On The Rock Nutrition

(Men's Mix, Daily Mix and Energy

Mix in place of a multi-vitamin)

No Sugar

Low acid

High alkaline diet

Remember, as far as The AMA is concerned, after my scope shows up negative, I'm done. Then I get scoped once a month by my throat specialist and get a PT scan every three months.

Preventing the cancer from returning and rebuilding my battered system, I guess, is up to me.

Good Luck, Mr. President. This should be fun to watch.

Vitamins

I can't believe that the American Medical Association says that vitamins don’t do anything. Since I've started the intravenous drips of vitamins C and D with minerals, I’ve been feeling much better. I don't care if it's psychological. It works. The AMA also contends that vitamin C can have a negative effect if taken during chemotherapy treatments. My doctors at The Klinik have shown me that it ain’t necessarily so.

My American doctors were amazed at how well I was responding to the chemo treatments. They didn't know that all the while, on the advice of my doctors at The Klinik, I was also taking regular drips of vitamins C and D with minerals.

Yeah, it’s frustrating. I have my first PT scan in two weeks. I know it will be clear, showing that cancer cells are no longer in my lymph node. Then I’ll begin the heat therapy. In the meantime, I'lI try to gain weight. I weigh 150 pounds. I need to put on at least twenty. That's not so easy to do when you can't taste anything.

Hot therapy

My doctor at The Klinik in German told me yesterday that she wants me to undergo something called “hot therapy” when I get to The Klinik for post-radiation treatment.  In the meantime, she said I should continue doing what I’m doing, and start drips with Vitamin C and Vitamin D with minerals on Tuesday.

Hot therapy?  Here’s what I found out about it:

It’s officially known as “regional hyperthermia,” and what it does is expose the body tissue in and around a tumor to high temperatures-- as high as 113º Fahrenheit. The therapy was developed after studies showed that such heat can kill cancer cells directly, as well as apparently make some tumors more susceptible to the effects of chemotherapy, with minimal injury to normal tissue.

Hot therapy isn’t common in the United States, but it has been tested in clinical trials, primarily in Europe.  The main trial was led by Rolf Issels, M.D., Ph.D., of the University of Munich in Germany, and supported by the European Organization for Research and Treatment of Cancer and the European Society for Hyperthermic Oncology.

Patients with high-risk soft tissue sarcomas whose tumors were treated with a kind of localized heat therapy and other treatment lived longer without their disease worsening or returning than did those who did not receive hot therapy.

Checked out about 25 months later, patients who’d received hot therapy did significantly better by nearly all measures. Their disease-free survival was 16 months, compared to 13 months for those on chemotherapy alone-- a 35 percent reduction in risk.  Partial and complete tumor responses were seen in 28.7 percent of hot therapy patients, compared to 12.6 percent for those receiving chemotherapy alone.

Patients treated with hot therapy also went an average of 38 months before local progression of disease, compared to 26 months for chemotherapy alone.  That’s a 32 percent reduction in risk.

And in case it sounds a bit on the edge, I found a quote from Barry Anderson, M.D., a senior investigator in the National Cancer Institute’s Cancer Therapy Evaluation Program (NCI is the US government’s main cancer research agency):

“The addition of regional hyperthermia improves the response of these soft tissue sarcomas to the standard chemotherapy. Though we don’t know if these patients will live longer (than those not receiving hot therapy), disease recurrence and local progression are both significantly improved.”

Someone asked me why I’m doing hot therapy now that my chemotherapy treatment is finished.  That’s because I still have enough chemo in my soft tissue that the heat will activate what’s left in my system. 

These Germans have been doing this a long time.

I also started taking On The Rock Nutrition. I don't know where to buy it other than at OnTheRockNow.com.  I take the The Men's Mix, The Daily Mix and Energy Mix every day. These vegetable, fruit and herb dietary supplements bring down the body’s acid level and raise the alkaline level. Cancer cells thrive in bodies with high acid levels. High alkaline in the body is a perfect  environment to prevent cancer cells from living.

I'll let you know how I feel after my drips on Tuesday.

Feeling stronger every day

Thanks for all the emails, letters and phone calls. My doctor from The Klinik has given me some medicines and treatments that have really helped with the radiation aftereffects-- treatments that are not prescribed here in the States, of course. They’ve done little things like help me to taste things and work up saliva. Yeah, little things that I wouldn’t be able to do otherwise. I’ll fill you in more as soon as I have the chance. Meanwhile, yes, I’m feeling a little better every day, and I’m working hard on The Klinik documentary. I’ve got a lot of work that needs to be done.

(And yes, that’s a photo of me yesterday. I look even better today.)

Until I feel like Brett again

I saw my doctor from The Klinik in Germany yesterday. She's here in LA for a few days. She brought over some good stuff for me to take and it’s already started to work.

She’s got me taking a pill called MPA 500mg Hexal - Medroxyprogesteron Acetat once a day. It’s an antibody drug prescribed in the States for women’s gynaecological problems (medroxyprogesterone injections are used for contraception and treating endometrial or renal cancer), but in Germany, they’ve had great success using this for various cancers, including breast cancer and head and neck cancer.

She also have me a Vitamin B complex gel that comes in a tube called Mulgatol Junior. In Germany, they give it to babies to help them gain weight. It tastes like orange candy. and I can actually taste it... I think? At least I taste something. It's a 150 ml per spoonful.

The doctor also gave me a shot where my butt used to be before I lost the 35 pounds that boosts my adrenalin and helps with the fatigue and appetite. Tomorrow I will get a Alpha Lipoic vitamin shot-- also for fatigue and weight gain.

All of these drugs, natural supplements and vitamins are legal in the United States-- but not covered by insurance companies so therefore not used by doctors.

And who suffers?

The patient.

Because according to the United States medical system, I'm in remission again; I'm done.

I’m done, even though I still weigh 150 pounds, sleep 14 hours a day, can't taste anything, have one saliva gland left and eat like a supermodel-- which is my point again and again .

And again.

In the States, I'm cured. In the States, it’s now down to taking my blood and trying to keep my white count up. And that's it. They just tell me to wait for the weight gain and as far as natural supplements and vitamins go, they don't believe in that at all!

As far as my doctor from The Klinik is concerned, I'm not cured until I feel like Brett again.

Suckers

They told me that the radiation would make me tired, but this is ridiculous.

I'm off the morphine suckers and the OxyContin. I’m down to three Vicodone a day and will start weaning myself from those starting on Monday. My throat is still very sore but getting better. I'd rather have a sore throat than be loaded all day by still taking those drugs. Enough chemicals. Now I’ve just got to get my strength back.

I realize that I've lost 35 pounds and haven't really eaten very much in the last seven weeks, but I have never in my life been this fatigued. My whole being is tired. So I’ll have one little rant; then I'm going to sleep.

I wanted to order one more box of the morphine suckers because if I had them, I wouldn't have to take any more pills. The good thing about the suckers is that you can use one throughout the whole day for pain and not be a vegetable from the opiates in the pills. In the meantime though, my insurance policy changed, and my prescription co-pay went away. The last time I placed an order, I paid fifteen dollars for two boxes. This time without the prescription co-pay, I’d have to pay $691.00... for one box.

This has got to change. And don't look to President Obama or any other politician now or in the future to change it. If we want this to change, it's going to have to come from us.

We, the people. Think about it.

Goodnight... or good afternoon.

And good luck.

(Side note: As much as those suckers really helped me, I refused to pay that money to that pharmaceutical company. A sore throat I can deal with. Greed, I can't.)

Today was my last radiation session; today was a good day

Yesterday was my last chemo bag and today was my last radiation session. It was brutal, but they tell me it'll work. So for the next six weeks I do nothing but recuperate. Then they’ll do a PT scan and I'm sure it will be clear. I’ve sent an e-mail to my doctor at The Klinik in Germany to fill her in on my situation. She’ll let me know when to come over to The Klinik for treatment for the side effects of the radiation. I know one of the treatments is bathing in water mixed with half a cup to a cup of sea salt and a half a cup to a cup of baking soda. This helps draw the radiation out of your body.

Today was a good day. I saw Farrah and Alana Stewart at the doctors’. Farrah's going to go back to Germany for some treatment, too. And to top off my day, my niece Kate came over to see me. We spent about an hour together. I don't get to see her much, so this was wonderful for me. It's not even six o'clock and I'm exhausted, so I'm going to bed. Goodnight.

Four more sessions

Four more sessions and I'm done. I don't think it'll get any worse. I can barely swallow, my throat is beyond raw, I weigh 157 and I have never been this tired EVER. In six weeks I'll do a PT scan and all will be clear. Then I think I will be going back to The Klinik for a couple of weeks for treatments to rebuild my trashed immune system and counteract the effects of the radiation.

The picture of my neck speaks for itself

I'm real tired. A tired I've never felt before. And feeling horribly sick at times along with the tremendous fatigue is no fun.

If you look at the picture of my neck, you’ll see it speaks for itself.

I'm down to 159 pounds. I have six more sessions of radiation and two more chemo sessions. Then, according to my U.S. doctors, I'm done with treatment. My doctor at The Klinik, however, wants me to go there for a couple of weeks so they can treat me for the radiation I've had.

I will blog again this weekend and tell more. Sorry. Too tired.