Thursday, July 30, 2009

“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.

Tuesday, July 28, 2009

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.

Monday, July 20, 2009

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.


Tuesday, July 14, 2009

England gets the CyberKnife

England has finally gotten is first CyberKnife.

It was reported yesterday in the UK Mirror:

CyberKnife gives cancer cure hope

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.

Sunday, July 12, 2009

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.

Thursday, July 9, 2009

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.

Saturday, July 4, 2009

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.

Wednesday, July 1, 2009

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.