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.

Like I inhaled fire

I've lost about twenty pounds. My throat hurts, but it's a different kind of hurt. It's not like a sore throat or infection. It's like I inhaled fire and it's raw from the burn. I gargle a lot with the chamomile tea extract and the aloe vera recommended by The Klinik, which really helps. The "magic mouthwash" prescribed by the doctors in Los Angeles doesn't do anything except make me throw up.

I must admit: the morphine suckers work the best!

I know what you're thinking. But it’s not like I get up in the morning, pop a sucker and listen to Hendrix. I only use them as needed. Sorry, but I'd rather have a martini. No olives, though. I couldn't swallow them.

While I’ve been undergoing the treatments in Los Angeles, I've been in contact with my doctor at The Klinik in Germany. She wants me to come to The Klinik for treatments for side effects from the radiation.

Treatments to recover from the treatments...

Merry Christmas

Had radiation and chemo today. I don't feel all that great. The morphine suckers are working. I'm not in as much pain, which is good. However, it has taken me over two hours to write this blog. 

Merry Christmas.

Double radiation day

Today is a double radiation session day. 10:30 am and 4:20 pm. Two radiation treatments because it's a holiday week and they won’t be open on Christmas Day. When I told my business partner I was doubling up because of the day off, he said, “If that’s the case, then why don’t you get all the treatments at once, over 48 hours?”

I told him that if I did that, there wouldn’t be anything left. I’d be burnt to a crisp.

My throat is really, really sore. With that and the chemotherapy, I was in bed most of the weekend. I tried writing a blog entry, but I think it was too short to post:

Sunday, December 21, 2008

Ouch.

See what I mean?

I don't like that "magic mouthwash" stuff and I don't like taking OxyContin because that stuff screws you up.

So my doctors here in Los Angeles are getting me morphine suckers. They’re lollipops laced with morphine.

I hope they have raspberry flavor. That’s my favorite.

Today the radiation machine broke

Today the radiation machine broke. Then they fixed it. Then I got fried.

My throat is absolutely killing me

Wednesday is a radiation and chemotherapy day. My throat is absolutely killing me and I feel sick. The best thing about today is that I ran into Farrah at the clinic here in L.A. It was great to see her and she looked fantastic.

Ten down, thirty to go

Today was my tenth radiation session. Just thirty more to go.

One of the radiation doctors examined me today, looked in my mouth and down my throat. She was amazed how clean it looked, no sores or inflamed areas.

She asked if I was taking the prescribed meds they gave me and I told her the truth.

I said my doctor at The Klinik in Germany had told me to gargle with and drink chamomile tea extract and to do the same with aloe vera, and that’s what I’ve been doing.

She was actually amazed. But now that my throat is getting sore and my voice is getting raspy and I sound like a cross between Bill Clinton and Harvey Fierstein, I’m going to get what they call “Magic Mouthwash,” which is Maalox or Mylanta, Xylocaine viscous, Decadron or hydrocortisone, Benadryl, Nystatin and sometimes tetracycline or erythromycin, depending on what your doctor prescribes.

I get Mylanta, Xylocaine viscous and Benadryl with three olives and barely a drop of vermouth… shaken.

I’ll keep you posted.

Radiation

I started radiation yesterday afternoon.

It was... interesting.

I just lay there with my mask, anchored to a table and this machine moved around me and stopped in eighteen different positions and radiated me.

At this point I don't feel anything. But they told me that sometime around the tenth session I'll start feeling the sore throat, and by the end of the third week I won't be eating solid foods anymore because it'll be too hard to swallow.

I'll lose my ability to taste for about six to eight months, but they tell me that will come back.

Radiation kills saliva glands. So Dr. Copps, my dental oncologist, gave me some medicine called Salagen. The medicine will help create more saliva from the glands that make it through the treatment.

With my luck, the radiation won't kill any saliva glands and I'll be drooling like a St. Bernard.

But that wasn't the end of it.

There's a prescription drug called OmniiGel. I need it for post-radiation. My prescription co-pays fifteen dollars for it. But today I was told by the pharmacist that my insurance company says OmniiGel is an over-the-counter purchase, not a prescription drug and refuses to pay its share.

So now it costs me sixty dollars.

When I got in the car, I called my insurance company and told them this was a prescription drug.

The person said I was wrong, that it's an over-the-counter drug.

So I asked herwhere I could go and buy this medicine over-the-counter, without a prescription.

Silence.

She put me on hold.

A supervisor came on. We had a similar conversation.

Then I asked her the same question: "Can you please tell me where I can get this medicine over the counter?"

No answer. She'll get back to me tomorrow.

What happened today is a perfect example of how the insurance companies make it up as they go.

As for me? Just twenty-nine more radiation sessions and I'm done.

Today, I start chemo at noon and radiation at four.

Really, the only fun I'm having is working on that live album with my brothers from 1978.

I'll let you know what the insurance company says.

If they ever call me back.

Aloe vera, milk thistle & OxyContin

I got an email from my doctor at The Klinik today. She gave me a regimen to follow to prevent or lessen the side effects of the radiation and chemo:

Aloe vera every day for gargling and drinking

Make a high-concentrated chamomile tea extract

and gargle several times a day and clean the mouth

Take:

Boswelia 400 mg 3x2 tab

Alpha liponic acid 600 mg

Sodium selenite 300 microgramm

Vitamin B complex

Milk thistle 120 mg 3x a day

The radiation oncologist here in Los Angeles says he'll give me prescriptions for lidocaine to numb my burnt throat, and Vicodin and OxyContin for pain.

See?

That's my point.

My doctors here would never prescribe what my doctor at The Klinik did, even if they knew it worked.

Why? The suggested regimen from The Klinik contains natural, holistic supplements that are not controlled and sold by the pharmaceutical companies.

It basically comes down to this: If the pharmaceutical companies can't control it, they can't make huge profits, and therefore would never endorse such a regimen.

Six weeks

On Monday I go get fitted for a mask. It's a mask that covers my face and protects my head from the radiation that will be burning into my neck in order to kill those cancer cells in my lymph node.

The doctors here and at The Klinik in Germany agreed that I need low-level radiation, ten minutes a day, five days a week, for six weeks. And six weeks of chemo. I can't say I'm looking forward to it. They tell me the first three weeks will be okay. But on the back half, my throat will be so sore that I won't be able to eat solid food. There goes the thirty pounds I'd worked so hard to put back on. They keep telling me that I have to keep swallowing-- no matter how painful-- and drink as many calories as I can, no matter how long it takes to get it down.

A lot of patients get a feeding tube, but I refused because sometimes people who use tubes actually forget how to swallow and have to go to therapy to learn to swallow again.

I don't have time for that.

It's funny-- no, it's not funny at all really. It's frustrating and infuriating that when they first found the cancer cells, the first thing out of the radiation oncologist's mouth was that I needed full-blown radiation and two nine-week sessions of chemotherapy.

Because that's what it says in their medical books.

They don't think out of the box. I immediately said, "No. I won't do full-blown radiation."

And then my doctor at The Klinik looked at everything and spoke with my doctors here, and suddenly they all agreed:

Low-level radiation.

Ten minutes a day.

Five days a week for six weeks.

Chemo for only six weeks.

See? That gets to the heart of the entire issue. What if I didn't have the second opinion? What if I didn't have a pioneering doctor who's not bound by tradition and a medical and pharmaceutical establishment?

Well, lots of people don't have that option. They have no choice but to follow the initial advice, which is “cut and burn and radiate and poison.”

Most people don't have that option, And it's out there!

I start the treatments on December first and finish on January ninth.

It will take a couple of months before everything is back to normal.

I'm waiting to hear from my doctor at The Klinik. She’'s going to give me a program to follow that the doctors here don't believe in. When I get it, I'll let you know what it is.

Do or die

"If you don't do radiation, you're looking at death."

That's a quote from the radiation oncologist I met with yesterday.

Undergo radiation for the cancer cells in one of my lymph nodes or die.

He was very matter of fact. If you don't do it, you'll die.

That's the third doctor in the United States who told me that I would die if I didn't do what he suggested. The doctor did admit that he and the others don't know all that much about the cyberknife treatment they've been using at The Klinik in Germany for the last 10 years, and that they used on my throat cancer last December.

Then the doctor scoped me, for no other reason than to see what the cyberknifing looked like.

He was blown away. The look on his face was almost funny.

He said, "Wow, I see where they blasted your tumour away. There's nothing there. No sign of the tumour.

“That's... amazing!"

Then he asked me about the side effects from the cyberknife.

I told him that there have been no side effects at all.

That was when he told me about the side effects I could expect from the low-level radiation.

Ha!

Big difference.

If I do the low-level radiation, it will be one ten-minute session a day, five days a week, for six weeks. There should be no side effects for the first two to three weeks. Then he said I'll get the worst sore throat known to man-- so sore that I won't be able to eat solid foods and will even have a difficult time with liquids. He said I can expect to lose thirty or forty pounds.

The key, the doctor said, is to keep swallowing and eating and drinking, no matter how painful.

(My business partner bet me a hundred dollars that it won't stop me from talking.)

I've been in touch with the doctors at The Klinik, and this morning I got an email from The Klinik's cyberknife doctor He's waiting for the PT scans and report to arrive, and then he'll give me his opinion on whether I should be cyberknifed or go through the "low-level, non-invasive and very focused" radiation treatment.

I'll know more Monday or Tuesday.

Sessions

Hey.

I've been in constant contact with my doctor at The Klinik in Germany, and my doctor here in LA has also been talking to my doctor at The Klinik. The reason for all this communication is to get all the information that's available about the various treatments that are available.

And then I'll decide which one I want to do.

To bring you up to date, a year after my first cancer treatments, cancer cells were found in one of my lymph nodes. There's no tumour or mass, just cancer cells that are probably a "drain-off" from the original tumour that was removed at The Klinik last December.

It's not unexpected, but it means another slog through the same treatments.

Tomorrow I meet with a radiation oncologist.

Because of where the lymph node is located, I might be able to undergo a low-level, non-invasive and very focused radiation treatment that would kill the cancer cells in that one lymph node and any undetectable micro-cancer cells that might be in the surrounding lymph nodes.

In any case, I start my first of two chemotherapy "sessions" next week. Each session lasts nine weeks.

After the first session, I'll either get the cyberknife or the low, non-invasive and very focused radiation treatment. Then, another nine weeks of chemotherapy.

I will not have to be operated on, which is good because that would have left my neck indented-- or as they call it, "collapsed."

Anyway, while I wait for all the info, I've gone back on my cancer diet, which is basically eating like a gerbil. All organic veggies, wild caught fish, and organic chicken.

No red meat, no sugar, no coffee.

And no vodka.

I'll let you know the outcome of my appointment with the radiation oncologist as soon as I can.

Meanwhile, that picture up top is from a computer printout I just got back from The Klinik.

That's me at the moment I was getting zapped by the cyberknife.

Cool, huh?

Yes, there were cancer cells in the lymph node

 First of all, thanks to thank everyone for your good thoughts and prayers. I truly do appreciate all the support. So here's the deal so far:

The biopsy came back and yes, there were cancer cells in the lymph node.

Remember, we always knew that there were cancer cells still in my body. That's why the Erbitux and Thalidomide. I've sent my latest scan and biopsy results to my doctor at The Klinik in Germany. At this point, all I know is that I will have to do some type of chemotherapy and I'll lose all my hair again-- which is fine; it was getting too long, anyway.

My doctor here in Los Angeles mentioned cutting it out, then chemo and radiation, which is the traditional American procedure. Today my doctor in Germany called and said nothing of cutting anything out, or traditional radiation. She hasn't seen the scan or biopsy results yet, but she has talked to my doctor here and I also e-mailed her and told her everything I knew, so she has enough information. She suggested the cyberknife, which is a very focused, pinpoint laser radiation beam that only radiates the necessary area and kills the cancer cells.

I’ll talk to her on Sunday and she’ll tell me what to do.

It's been really hard to concentrate with all this happening, but I've been working on scripts and putting together a live album that my brothers and I recorded in 1978.

That's all I know for now. Sorry I didn't get to this on Wednesday. That's when I found out the biopsy results.

It could be nothing...

I got the results of my scan and all is clear.

However, on the PT scan a lymph node on the left side of my throat was measured at 10 mm. On my scan on July 24th this lymph node was at 7mm. The 3mm increase could mean a number of things. It could be nothing. It could be inflamed because of the erbitux.

Or the lymph node could have cancer cells in it.

So today I went in for a biopsy. That was fun. Five needles stuck deep in my neck to get tissue out of the lymph node.

I’m supposed to get the results from the biopsy on Monday. My doctor here said that if there are cancer cells in the lymph node, they’ll operate to remove it.

I’ll tell you right now:

If there are cancer cells in that lymph node, before anyone cuts me open I’m calling my doctor in Germany.

I’ll let you know the results on Monday. Right now, it’s time to take my Thalomid and stare at the floor.

Scans

I wasn't going to mention that I haven't blogged in a while. You should have gotten the picture about my blogging habits by now. But the fact is I'm still feeling pretty rotten.  The shingles are gone, thank God, and the erbitux and the pimples I can deal with, but it’s the Thalomid I hate. It flattens you out and turns you into a zombie. I have to take the stuff until the second week of January.

On the bright side, I haven’t stopped working and we’re producing some of our best material ever.  Our movie, The Seventh Python, is headed to film festivals around the world-- so I’ll get to meet a lot more of you-- we’re producing a one-man comedy show that has its second preview on the Sunset Strip on Tuesday (no, I’m not the star), and Burt and I are finishing a pilot script for a hilarious new television series-- and starting to write the other episodes.

So life does go on.  And upward.

Today I go in for my third PT and CT scans to make sure all is still clear.

I have to do this every three months for the next two years, then every six months for the next five years.

The scans combine X-rays with sophisticated computer equipment to produce images of the inside of my body. A scanner is a large box with a tunnel in the center. They stick me on a narrow table and slide me inside. I’ve only got one problem with them: I'm claustrophobic.

So they give me drugs to relax and I've convinced them to put me in the tube head first instead of feet first, so when I get to the other end of the tunnel I can tilt my head back and see the ceiling.

What a pain in ass I am.

One more thing: I was supposed to get the results of the scans later today, but I won’t get them until Monday because my doctor is guesting on a television show.

Only in Hollywood.

Shingles

I know. It’s been awhile since I’ve blogged. By the way, I hate that word “blogged.” Maybe that’s got something to do with it.  I’m not a “blogger.” I mean, I don’t want to be a “blogger.” But here I go. My apologies if you’ve been waiting or wondering.  It’s been quite month.  And I haven’t felt much like blogging.

I’ve started new maintenance treatments.

Along with my weekly dose of Erbitux that gives me pimples like a teenager, I now take 150 mg of Thalomid (thalidomide) every day that make me feel like shit.

On top of that I’ve got shingles.

For those of you who don’t know what shingles are, I’ll tell you.

Shingles is a skin rash caused by the same virus that causes chicken pox. After an individual has chicken pox, the virus lives in the nervous system and is never fully cleared from the body. Under certain circumstances, such as emotional stress, immune deficiency from chemotherapy for cancer, or AIDS, the virus reactivates, causing shingles.

They are incredibly painful!

So, other than the pimples, feeling like shit and the shingles, all is well.

I know some of you are saying, Isn’t Thalidomide the drug that caused birth defects back in the fifties and sixties?  It is.  But they’ve found a number of other good uses for the drug. In the States, we don’t take advantage of it, but in Germany it’s part of the maintenance-- or preventive-- treatments. This is what the doctors at The Klinik told me and why it’s important that I take it. 

Cancer cells that are active in the blood have an inflammation that surrounds the cell. Thalidomide removes the inflammation from around the cell then the cell dies. I do this until the second week of January. 

Then they’ll take my blood and check it for micro cancer cells.

If it’s clear, I’m done with treatments.