Sunday, December 30, 2007

The Power of Poop

OK, I am already a *complete* believer!!

I'm on my second day of doing coffee enemas, in preparation for my enzyme therapy program that starts next month. The theory is the same as that behind the do-it-yourself supplement program that I've been on for the past 4 months: the various herbal remedies, enzymes and vitamins that I'm taking are great, each in their own way, for getting the cancer and various other toxins out of my system. But someone has to move whatever's been stirred up on out of the system!

For the past few months, I've relied on my general regularity, along with an occasional colonic from Charlotte Layne. The coffee enemas really move the detoxification to another level. It's recommended by many different alternative cancer groups, including the enzyme therapy treatment ("Dr. Kelley's program") -- see http://www.sawilsons.com/ .

I can testify from my own experience that my innards have been really vile ever since I amped up my supplement use last month -- there are some seriously toxic substances being stirred up down there! I'm glad to have a procedure that will get rid of them much more efficiently.

The added bonus of the coffee enemas is one that I've read about but didn't appreciate fully until I started them yesterday. I feel *great*! This isn't just "drink your morning cup of coffee" great, and it isn't like any other caffeine experience that I've ever had. I am feeling so good overall, and I am experiencing astounding mental clarity for three or four hours after the procedure -- and all without any kind of caffeine buzz! (caveat: we'll see if it lasts!!)

Here's a link that gives you probably more information than you wanted to know about coffee enema benefits, and the actual procedure-- http://www.sawilsons.com/basicenema.htm

Tuesday, December 25, 2007

Christmas Blessings

For the last few weeks, there's been a bit of a cloud hanging over my head: I've been under investigation by Aetna, my insurance company.

Apparently, whenever the claims paid out for an account exceed the premiums paid in, insurance companies start an investigation to see if there's any pre-existing condition that will allow them to cancel your coverage.

Even though I didn't have any procedures that took place before I started with Aetna -- and even though the vast majority of my care has been in Germany -- I was still nervous, since my care here (various diagnostic tests and Zometa, a bone strengthener) ran to almost $10,000…and I had no idea how I was going to find that amount if Aetna canceled my policy!

We came home on Christmas Eve to find a letter from Aetna that they'd checked everything out -- and everything was OK. My policy won't be canceled!

I'm *extremely* grateful for this completely unexpected Christmas gift, and I hope that everyone out there experiences great blessings during their holiday season!

Monday, December 17, 2007

Radio Silence Ending!

I wanted to let everyone know that things are going great -- I'm feeling well and a new treatment is beginning in January.

I've been quiet for a while because my Dad has been going through a lot; we just put him into Hospice…and he was living well on his own 3 1/2 months ago!

I'll be catching up over the next few days with bits and pieces of the story until now -- a lot has been happening! I'll be cheating just a little by backdating some of the entries so that the timeline stays correct.

Hope you are all having a fabulous holiday season!

Tuesday, November 20, 2007

Researching the Next Step

OK, now that the last visit to the PraxisKlinik is under my belt, I can turn to the question at hand: what's the best way to continue my treatment going forward?

One option is to continue the visits to Dr. Thaller every 6 weeks or so. The three treatments I'll continue with would be the fevertherapy, the Newcastle Disease Virus injections, and the Dendritic Cell injections. (Alongside these there are the additional treatments of vitamin C and ozone infusions, and local hyperthermia).

Liz and I have 20 vials of the virus with us here in the States, so the injections with those will continue through January in any case.

A second option is to work with Dr. Pfeifer at the Aeskulap Klinik in Switzerland. He has a very interesting-sounding protocol for prostate cancer, which consists of high dosages of four different supplements. (I've already started taking one of these -- ProstaSol -- and my PSA went down by over 50% in one month! )

The third option is to go with the enzyme therapy that Dr. Gonzalez is known for. This is an intensive self-care program consisting of supplements (mainly pancreas enzymes), a strict diet, and detoxification procedures. I'm strangely drawn to this path, as it is a way that 1) I can take responsibility for controlling my own health, and 2) is something that I can maintain over the long term, as I manage this cancer as a chronic condition. (I don't imagine that there will be a sudden cure for what I have, and the costs of Thaller's treatment -- around $15,000 a visit -- make it extremely hard to envision continuing to do it over the long term!)

In any case, I'm going to be getting some help in sorting these issues out -- I'll be doing another phone consultation next week with Dr. Ralph Moss, the über-researcher that keeps his finger on the pulse of all the new cancer therapies that are being tried.

Saturday, November 17, 2007

Farewell for Now

Today's the last day of this visit to the PraxisKlinik. I try the fevertherapy this morning, and there's some lower back pain (strange…), but otherwise it's very light.

I get an injection of Newcastle Disease Virus in the prostate this morning, which is always exciting and fun. ;-)

I work out the bill with Christine, and happily hand her a check for 10,000 Euros -- nearly $15,000. Thanks to all the gifts and generous help from everyone, we were able to make this visit happen. If we're able to come again in January for the next visit, it will cost a bit more, nearly 15,000 Euros.

Around noon, Dr. Thaller comes upstairs to say goodbye to all of us, as he is leaving early in the day to go to a wedding. He shakes everyone's hands, says a few words, and starts to head off for downstairs. At the last moment he turns around and heads back toward my bed at the back of the room. He folds his hands at his heart and bows slightly to me, very reverently -- and I do the same in return. I feel honored by his salutation, and almost instantly I have the strong sense that this may be the last time I see him.

So a grand thank you to Herr Dr. Thaller and Christine and Michael and Tanya -- you have all been so very wonderful!

Thursday, November 15, 2007

All The Gang

Today's a more social day at the Clinic. It helps that I decide that no how no way am I going to take the fevertherapy today! A little break is in order after the wild ride yesterday.

When I arrive at the clinic, both Christine and Dr. Thaller agree -- yesterday was a little extreme! Then I discover the key ingredient that was missing: I hadn't been taking Celebrex (a pain reliever) before the fevertherapy like all the other patients. I'm not sure how I missed this, as I don't remember anyone ever telling me. I suppose it could have been one of those moments when I was being overly-agreeable and pretending to understand something in German when I really didn't. Oh well -- at least now I know the trick to surviving the fevertherapy!

So without the shivering and the fever, it's easier to catch up today with all the other people in the clinic. Sometimes I might give the impression that there's no one else around, but we're all actually quite close together -- the clinic is quite small and can only hold 8 or 9 people per day. So Liz and I are able to have nice chats with the couple from Long Island, the guy from Canada and his daughter, and the nurses, Michael, Tanya and Christine. Even Dr. Thaller comes upstairs for a few minutes.

Not much else happens today. Christine finally clears my port (which has been blocked for extracting blood, but fine for injecting things) -- she hooks me up to a machine which injects 100,000 units of urokinase over an hour's period, which seems to do the trick.

The Luffa Cure

Yesterday during my acupuncture session, Dr. Thaller heard me sniffle (I've been having some congestion lately), and started talking to me about the Luffa Cure. It's a week-long procedure that takes place at the clinic to entirely cleanse the sinuses of any bacteria or other toxins. The centerpiece of the therapy is the installation of two luffa tubes up the nostrils, which supposedly initiates a huge release of mucous -- people who take this cure go through hundreds of tissues in a week.

Tonight is the second night in a row that I have been absolutely deluged with the sniffles. I'm blowing my nose every few seconds, and sneezing, and using up tissues by the handful.

I wouldn't be surprised at all if Dr. Thaller hit some acupuncture points during my treatment on Tuesday that triggered a sinus cleansing -- a "Lite" version of the Luffa Cure, without the Luffas.

He has a lot of tricks up his sleeve -- I'm betting something like this is the case!

Wednesday, November 14, 2007

Showdown at the Fevertherapy Corral

Today starts out normally enough. I'm thankful that I'm not having any adverse reaction to the dendritic cell injections from yesterday.

I get my fevertherapy injection, and Christine tells me that it will be a moderate dose. I head upstairs to my feverbed, and settle in for the wait. In about 20 minutes, the shivering starts in earnest: and today, more than ever before, I'm hit by an intense breathlessness. It's really hard to catch my breath -- I have to sit up to make it at all possible.

Michael asks me if this is serious -- I say yes -- and he bolts downstairs to get Dr. Thaller. In seemingly an instant, the whole crew is at my bedside: Dr. Thaller, Michael, Christine and Tanya. It looks like a SWAT team in action: everything is a blur of slapping on electrodes, stethoscopes, checking and re-checking the various monitors around my bed (and setting new ones up). Dr. Thaller zooms in to give me a quick ear acupuncture (like staple guns to the ear), there is a quick injection into my port of aspirin to calm the fever and digitalis to strengthen my heart.

There's probably a lot more going on, but I'm not exactly paying full attention at this moment. I'm really struggling for breath, my heart is beating hard, it all kind of hurts, and, truth be told, I'm a little freaked out. Dr. Thaller implores me to breathe deep, into my diaphragm, in an attempt to calm things down.

The strangest part is that after everyone has done all the interventions that they can think of, there's nothing for them to do but sit around and watch my strange predicament. I'm still heaving, gasping for breath, but nothing is getting any worse, and I have the presence of mind to perceive that I must be a pretty strange phenomenon to everyone right now.

At one point, Dr. Thaller leans over to Liz and stage whispers to her: "His lungs are fine…his heart is fine…I believe that part of the struggle is in his *soul*!"

This turns out, chronologically and psychologically, to be the climax of the day's experience. I eventually calm down and go into a deep fever: 41.0 degrees (105.8 in Fahrenheit). This is very high and will be very effective in killing cancer cells. I'm always pretty delirious until the fever gets below 38.6 or so -- I keep asking Liz every couple of minutes, "What time is it?", but I never remember what she says.

At the end of the day I am completely spent, again.

I'm not sure what to make of Dr. Thaller's comment about the struggle for my soul. It makes me realize that this week is a very transitional point -- like a swing at the top of its arc, or a pendulum just before it heads back in the opposite direction. There's been a quiet here as the previous period of my life ends, and a beat, just a moment, before the next phase begins. The last couple of months has been all about finding out about my diagnosis, searching for the best treatment, fundraising so I can get here (with an extra dose of helping out my Dad during his own health crisis). Now all those events are at least temporarily stable, and I' m headed into a full-time job search and discovering the next chapter of what it is that I'm doing here.

In a strange way I'm grateful that the transition between these two phases was so clear and dramatic.

Tuesday, November 13, 2007

Welcome to the Big Top -- Step Right Up!

Today is the big day, the dendritic cell injection. It's the main reason I'm here (and it's also the most expensive treatment of the visit!)

The prelude is an acupuncture treatment, to prevent further lower back pain like I had yesterday. Dr. Thaller's acupuncture is unlike any that I've received in the States. There are the normal needles (in great profusion!), but there is also a steel cylinder that sounds (and feels!) almost like a staple gun -- he lines up the cylinder with a particular point, and then BAM! -- a spring-loaded tip slightly punctures my skin and infuses it with a homeopathic solution. It doesn't really hurt, but it does pound me with some force; I have to focus clearly in order to maintain my balance.

Afterwards I have a relatively light fevertherapy -- nothing like the reaction that I had yesterday, thanks to the acupuncture.

At the end of the day comes the main event, the dendritic cell injection. Dendritic cells that have been prepared from my own white blood cells (which were collected on a previous visit) are injected into both of my shoulders. Dr. Thaller has an intense focus while he's doing the injections: he seems completely at one with his needle, and his motions are a completely fluid dance around both of my shoulders. He makes about 10 injections into each shoulder, varying the location and the length of the shot each time he goes in with the needle. It's strangely ritualistic -- and when it's over, we both look at each other as if to acknowledge the completion of the ritual.

There's one additional bit to take care of, though: the injection of a dose of immature dendritic cells directly into my prostate. This dose has been prepared differently from the previous dose, and is keyed on the cells finding cancer cells that have been previously marked by the Newcastle Disease Virus that I have been taking.

I never get used to these direct prostate injections. They are only 10 seconds long, but they are supremely uncomfortable, and in addition there is a roulette effect at work. Depending on whether the needle hits one of the several nerve bundles that go through the prostate (and depending on what angle at which it hits), I can get a severe jolt of pain. Unfortunately, this effect is completely unpredictable. And today I get a small version of this jolt. Fortunately, it's over quickly!

Monday, November 12, 2007

Round 3 at the PraxisKlinik (ground level)

Today I'm back in the thick of the action at the PraxisKlinik. I get a small dose of fevertherapy for my initial visit -- and even so, Christine gives me an aspirin injection halfway through to minimize the effect. She wants to make sure I don't have too strong a reaction, in preparation for tomorrow's injection of dendritic cells (the centerpiece of this week's visit.)

Despite these precautions, I have a really strong reaction to the fevertherapy -- lots of shivering, and a relatively high fever of 102 degrees. When I try to lie down for my hyperthermia treatment, I'm not able to lie straight because of pain in my sacrum and lower back -- Dr. Thaller almost insists that I get a shot of fenadryl, but I insist on letting it calm down on my own, and eventually I'm able to relax the spasm and let the fever wind down on its own course.

For dessert, I get an injection of Natural Killer cells directly into my prostate. As always, this is one of my most fun activities here at the Klinik!

At the end of it all, it's an unexpectedly exhausting day. I can only walk home by focusing on one step at a time. And it's late in the evening before I feel normal again.

Sunday, November 11, 2007

Round 3 at the PraxisKlinik (10,000 foot level)

I'm back at the PraxisKlinik Arno Thaller in Germany this week, and frankly the main thing I have to report so far is a really strong sense of serenity. I'm looking at the whole process a lot more calmly, and even the dendritic cell injections today (which have filled me with minor dread all month!) came and went today and it was no big deal. (don't get me wrong -- *they are not pleasant* ! But still, it was all over within minutes -- the injection into the prostate, and a couple of dozen injections into each shoulder.)

Part of it is that the weather is very cozy let's-stay-inside weather: the temperature is hovering around freezing, and the drizzle outside can't quite decide whether it's rain or snow.

Part of it is that Liz and I have been doing exercises this week focusing on how to build peace of mind.

And part of it is that all of the back-and-forth about this particular treatment path has played itself out. There was a great deal of drama in finding this place, and in setting up the treatments, and in going through the first two rounds of the therapy. There was also a very intense and wonderful process of everyone making such generous contributions so that I could come here and receive the treatment -- and for that I am very grateful to each of you!

Now all that is behind us (for now at least; nothing stays the same!). It's a strange comfort to be able to just cruise through the therapy almost quietly.

Saturday, November 10, 2007

Snowy Pilgrimage


We settled down into our house in Markt Berolzheim yesterday evening after 22 hours of travel.

Today we woke up and it's snowing!!!

It just started yesterday, it's the first snow of the season -- roses and other blossoms are still on the bushes, and all the plants are all a startled green. We made our pilgrimage through the snow to the lindens, drank some of the water, and said hello to the place.

Afterwards we had a wonderful shopping expedition in the tiny market here. The friendly shopkeepers fixed us coffee and told us about all the cakes and pastries that they had prepared for St. Martin's day, celebrated next weekend here since it's an Evangelical village (other nearby villages are Catholic and celebrate it on December 6th.)

And yes, "Evangelical" here means a much different thing than it does in the States!

Friday, November 9, 2007

PSA down

Good news today when I retrieved my PSA score -- it was down to 2.2 on October 30th. (compared to 4.2 on October 5th).

This is really good news for a couple of reasons. Most obviously and simply -- the PSA is down, which is always the goal. This is actually the lowest it's been since I was diagnosed in July.

The other bit of good news is that the only change in my therapy between October 5th and October 30th was that I started taking ProstaSol. (In fact, my hormone blockage therapy was wearing off between those two dates, and I didn't get my next shot until October 31st. So I wouldn't have been surprised if my PSA had gone *up* instead!)

This means that I can pretty clearly attribute an almost 50% drop in my PSA to the ProstaSol. For now, it is *definitely* staying on my supplement list -- even though I have to order it from the Netherlands!

Thursday, November 8, 2007

Another Viewpoint

Yesterday I had my weekly appointment with Francis, a local healer that several people have recommended very highly. He's humble, non-descript, Scottish, and has a definite spiritual power. I've felt things move during his sessions with me. And I'm a big fan of synthesizing several approaches, so I see him regularly.

I've always been with him in groups, but yesterday I started out the session with him on my own. He asked me about my Gleason score (a particular way of measuring the extent of the cancer), and asked what I was doing to treat it. I explained Dr. Thaller's procedures briefly.

Then he asked me if I had become vegetarian. "No," I said, "I've cut out red meat but still eat chicken and fish." He launched into a very articulate defense of not eating meat because of the death it necessarily entails. He was strong and pretty relentless. "There's no happy pill you can take to cure your cancer," he said. "Nothing will really happen until you take responsibility for curing your own cancer by eating the right things, and by helping heal the pancreas -- when you have cancer you don't have a proper supply of pancreatin. It's your own choice, of course, but that's what you're looking at."

I was pretty taken aback -- not just because of his firm tone, or the fact that this was the first time he had spoken more than a couple of words to me. It was the synchronicity at work. What he described was almost exactly the same treatment that Dr. Gonzalez recommends, and that I've been reading extensively about. Chalk it up as one more strong clue from the universe.

Monday, November 5, 2007

More Treatments On the Way -- Thanks to You!!

We've done the math, and we now have enough to start the next week of treatments at the PraxisKlinik Arno Thaller in Germany. (we won't have enough to get the full set of treatments that are available, but we can get the dendritic cell vaccine, which is the most important part to continue.)

All of this is possible because of your generous contributions -- thank you all so much!!

Dr. Thaller has recommended at least two more rounds of the dendritic cell vaccine after this one, and each visit will be another $18,000 -- but we have another few weeks to solve that problem.

Why did we decide to continue with Dr. Thaller's treatments after the doubts that I expressed in my earlier post? The simple answer is that I don't want to leave any stone unturned in getting healed, and Dr. Thaller's treatments have been very highly recommended. What's more, doing the treatments at his clinic *doesn't preclude* any other treatments that might do me some good later on. As long as I'm on the "symptom-free window" provided by the hormone therapy (which will last between several months and a few years), I'll be in good shape to receive additional treatments.

So Liz and I leave for Germany this Thursday -- wish us luck!

The Reviews are In

I just received an updated version of the Moss Report on Prostate Cancer*. Inside were a couple of positive mentions of the doctor I'm seeing in Germany, Dr. Thaller:

Another German practitioner with a strong interest in immunotherapy is Dr. Arno Thaller, whose practice in Markt Berolzheim, near Nuremberg, uses immunotherapies based primarily on Newcastle disease vaccine. On the whole, I have a positive impression of Dr. Thaller. He clearly understands the latest developments in immunotherapy, but also has a good grasp of historical treatments of interest (of which Coley's toxins and Newcastle disease virus vaccine are prime examples – see later in this report). The biggest problem is that if you call the clinic you are very likely to get someone who does not speak English. That is what sometimes happens when you are dealing with a small, rural clinic like this one.

and later in the report:

Arno Thaller is a medical doctor in a small private practice in Markt Berolzheim, Germany (near Nuremberg). He has a web site at www.praxis-thaller.de There you can find a very intelligent essay that he has written on the immunotherapy of cancer. What distinguishes Dr. Thaller is his aggressive use of Newcastle Disease Virus (NDV) vaccine, as well as other immunotherapeutic procedures. He has had experience in treating even advanced cases of brain cancer. From my limited experience, he seems able to stabilize some such cases, although it is too early to say what the long-term effects can be. Dr. Thaller strikes me as caring and humane, with a good reputation among other German doctors. I continue to watch the evolution of his program with great interest.

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* Ralph Moss is hands-down the best researcher I've found on cancer treatments -- he keeps an eye on all the new research (both conventional and alternative), and then synthesizes and evaluates the information in reports on each type of cancer. The reports are available at his site.

Kudos to the Webwizards

I want to send a big shout out to Jane Dowling and Jaime Levy Russell, who did an amazing job helping me set up this blog, and putting together the helpnickwest.com site. Not only did they do a great job -- but they did it in the midst of their hyper-busy lives! I am exceedingly grateful to both of you!!

Thursday, November 1, 2007

Eek, symptoms!!

Ever since I got the first shot in my hormone blockage therapy a few months ago, I've been relatively symptom-free. This is a wonderful thing -- the symptoms I was experiencing in July were *awful* -- real difficulty in peeing, unearthly constipation -- all kinds of wonderful dinnertime topics.

The shots (which go under various names -- I've had Eligard and Trelstar) -- last for about three months. Because of traveling to Germany, I hadn't been able to schedule my 2nd shot until this week. Since I was a few weeks behind, I started to notice the gradual reappearance of -- eek, *symptoms*!

It wasn't bad -- a slight difficulty in peeing and slight constipation -- but it was enough to bring me up with a start and remind me that the cancer wasn't just some abstract entity. It's a real, creeping thing in my system, and unless I find a way to destroy it by the time the hormone blockage runs out, I'm in a heap of trouble.

Fortunately, the Trelstar shot* has calmed down the symptoms. And I'm confident that the treatments I'm seeking will really do a number on the cancer that's remaining. But it was definitely a wake-up call to feel what the effects of cancer can be.

----
* a few weeks ago, I mentioned that I would be substituting the supplement ProstaSol for the hormone blockage therapy. It turns out I received bad information -- the doctor who came up with the ProstaSol protocol recommends staying on hormone blockage therapy while taking ProstaSol. So I'm taking his advice.

Wednesday, October 31, 2007

Back on the Balance Beam

One of the advantages of putting together my own health care plan is that there are so many options to choose from.

And, the major disadvantage of putting together my own health care plan is that there are so many options to choose from!

This week has been pretty confusing, as Liz and I have been weighing the pros and cons of continuing with Dr. Thaller's treatment vs. starting one of the other promising treatment regimens that I've run across.

On Dr. Thaller's side: he's a great guy with a fabulous curing attitude; the four treatments he offers are very highly-regarded*; I'm not even halfway through the series of dendritic cell treatments; and frankly, I want to try *anything* that has a good chance of helping me to heal.

On the other side, it's soooo doggoned expensive. The next treatment series will be $18,000…and there are two other series waiting for us in the next couple of months at the same cost. Since so many people have been so amazingly generous with their contributions, I want to make sure that their money is well-spent.

There's also some doubts about the dendritic cell therapy, which is the core of the next few visit to Dr. Thaller. Ralph Moss (the most competent researcher I've come across) said that many people consider this line of inquiry to be "yesterday's news". (To be fair, there are lots of people praising it to the skies as well.)

In the midst of this confusion, I've been reading about two other therapies that might really help out someone with an advanced cancer like mine.

The first is Dr. Pfeifer's prostate protocol . He's the head of the Aeskulap Clinic in Switzerland, and developed a series of four different supplements for men with *very* advanced prostate cancer (even worse than mine). There's just been an EU-wide study on it that concluded it produces a 50% reduction in PSA in 70% of the patients treated. (PSA decreases if your cancer is decreasing).

The second is the combination supplement-and-diet regimen of Dr. Nick Gonzalez in New York City. He started out at Sloan-Kettering examining a "folk" remedy that had achieved some notoriety back in the 70s (actor Steve McQueen was on it). He found out it had a 93% *cure* rate, quit Sloan-Kettering, and started his own practice administering the regimen.

The case reports are really breath-taking for this treatment. Take a look at them and you'll understand why we're on the fence about what to do next.

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* Dr. Thaller's 4 treatments are local deep hyperthermia, Newcastle Disease Virus, Coley's Toxins and dendritic cell vaccine. (there's also Vitamin C and oxygenated blood infusions, but those are just gravy.)

Friday, October 26, 2007

Come to the Sluggo!Ball in Austin!


This evening there's going to be a benefit to help with my medical expenses. It's the "Sluggo! Halloween Ball" (named after a fanzine I put out here in Austin back in 1979-80), and it's at Emo's starting at 10pm. If you're in town come down and say hi!

I'm extremely grateful to all my friends that have worked so hard to put this together, including Grand Magister Phil Lenihan, Jane Dowling, Rick Turner and all the rest. You can see details of the Ball here.

Saturday, October 20, 2007

Nurse Liz Comes Through!

Only half of my treatment takes place at the clinic in Germany; the other half takes place at home here in Austin. Each time we leave the clinic, they pack up a month's supply of Newcastle Disease Virus into a dry ice container. Every other morning, Liz injects a small vial of the virus into me, in a 5-step procedure.

First, some background. The Newcastle Disease Virus selectively attacks cancer cells, and leaves normal cells alone. The problem is that the immune system starts clearing out the virus the moment it's injected -- so it's a race against time to have the virus in me for long enough to zap a good amount of cancer cells. To maximize the impact of the virus, Dr. Thaller has had two ports installed into my chest so that these injections can be aimed at particular parts of my body. One port aims toward my upper half, the other toward my lower; this way the virus injections aren't diluted by the entire bloodstream, and can therefore affect the bone metastases in different parts of my body.

So, the injection procedure: I prepare three different syringes -- one with saline solution, one with saline solution plus the virus, and one with taurolock and heparin (to keep the ports and the catheters clean). Liz then pokes a needle into my port, and attaches all of the syringes in a particular sequence until everything is inside me. It's all painless except for a tiny stick at the outset, and it takes about a half hour.

I am constantly amazed and grateful for Liz's steady hand in accomplishing this -- the whole procedure is *not* something that comes naturally to her, and she has really been a godsend with her perseverance and calmness.

Dr. Thaller says I need to keep injecting the virus for a year to have it be truly effective. Fortunately, there are absolutely no symptoms while the virus is active in my system -- only once did I feel a few cold-like symptoms (and that was on a day when I had run myself ragged and had only four hours of sleep).

Thank You, Thank You, Thank You, Thank You!!!

I want to extend a very heartfelt thank you to each and every one of you that has sent your contribution my way recently. This includes those of you that have so generously made donations, and those of you that have gifted air miles, and those of you that have sent well wishes and good thoughts in one way or another. What a wonderful difference it has made to know that all of you have helped so much!

Liz and I sang a song of thanks for all of you this morning, and I am holding you in my heart as I write this.

And a very special thanks goes to Liz, who has given of herself (and contributed!) more than generously, more than anyone could ever expect. I am well and truly humbled, and exceedingly grateful.

Thursday, October 18, 2007

"So, how *are* you??"

I get that question all the time, and understandably so.

Cancer is a frightening disease, and this perception isn't helped by the fact that most standard cancer treatments make the patient look even *worse*.

Chemo and radiation are so pervasive in this society that we have started thinking that cancer patients = cancer patients with chemo, and we expect anyone who has cancer to lose their hair, look fatigued, appear wasted and skinny, etc. There's a Proposition here in Texas for more cancer research, and the billboards show a bald woman -- as if *all* cancer patients must forevermore look like that!

I keep reminding people that there are alternative treatments for almost any cancer, and that they really do have a choice beyond just chemo and radiation. I'm definitely not an expert on any cancer at all -- and even with regards to prostate cancer I'm just a very-highly motivated researcher. But even with those caveats I've found lots of options.  If you know of anyone that has received a diagnosis of cancer, just have them google "the Moss Reports". Ralph Moss is a researcher that has collected a lot of information on cancer treatments (both conventional and alternative) and has put them into individualized reports for each type of cancer. His reports saved me literally hundreds (if not thousands) of hours of research.

OK, so I'm ranting -- but how am I? The treatments I'm receiving at the PraxisKlinik in Germany are based on strengthening my immune system rather than poisoning the cancer. The upshot is that I look and feel almost normal. I have all my hair, I have no sunken eyes or drawn features, and in fact I've (thankfully) lost 15 pounds over the past few months because of a much-improved diet.

I'll be evaluating the treatments every six months to see how they are doing against the cancer -- the cancer will indeed cause horrible symptoms if it grows unchecked. But that's not happening now.

So, short answer: I'm doing great -- how are you?

Tuesday, October 16, 2007

A Note on Donations

(UPDATE: If the ChipIn widget is being slow for anyone, or if you'd like to donate in another way -- please feel free to contact me at nick AT outskirts DOT net.)

I just wanted to let everyone know that they can contribute to my medical expenses by clicking on the ChipIn widget on the left-hand side. I'm going to have to come up with around $14,000 to continue my dendritic cell therapy at my next visit to the PraxisKlinik on November 12th. It would be an immense help if you could donate a little, if you're able. I will be very, very grateful for your support!

The ChipIn widget lets you use PayPal or your credit card to leave a donation. You can also use an "e-check" from your bank -- you put your bank account number into PayPal's secure form and it's treated like an actual check. E-check donations take about 4 days before they clear the bank and show up in the widget thermometer.

You can also gift airmiles via the link to the left -- Liz and I have to fly back and forth to Germany every six weeks and from Austin, there's not really any cheap way to do it -- the best price we've found so far is about $800 round trip. We considered finding an apartment over in Germany, but I have work here in the States and need to take care of my Dad.

Sunday, October 14, 2007

Dad

For the next chunk of time my posting here might be light -- I'm trying to find care for my Dad, who's just gotten out of a long hospital stay and needs some help getting around.

Liz and I are headed back to Germany in November so I can receive more treatments at the PraxisKlinik in Markt Berolzheim -- the current schedule is to be there one week out of every six.

Saturday, October 6, 2007

Back Home Again...Sheesh!

Today I go for my monthly visit to Lone Star Oncology, where I get an IV drip of Zometa (a bisphosphonate that will strengthen my bones, which are weakened both by the metastasizing prostate cancer, and the hormone therapy that I'm on).

I also talk with Dr. Shimkus about the results from my CT scan last month. (amazingly, just like with my bone scan a couple of months ago, there are *no visuals* provided with this scan -- even though the test itself consists of taking a picture! All that's provided is a very technical description of the my internal situation, which someone has painstakingly constructed from the picture itself. The visual scan (which would clearly show how serious a pattern of cancer is, and already exists in a file somewhere) would be an extra charge! My doctor in Germany is astounded at this practice and considers it unethical.)

Dr. Shimkus appears to be a bit surprised that I am going to change my hormone therapy by substituting the herbal compound Prostasol* for the Eligard shot that I am due to receive again this month. He gently tries to dissuade me from making the switch, but I am insistent (it will have fewer side effects -- specifically, less night sweating).

I ask a few more questions of him (such as, are there any therapies that I should be considering that I'm not on now?), and at some point after our meeting passes the 15-minute point, he appears to become a little impatient and tells me point blank: "You know, you are *always* going to be dealing with these bone metastases."

I'm slightly taken aback by this, but it isn't until later that I process what he was trying to convey to me: "hey, you've got inoperable cancer, there's nothing we can do about it -- get used to it!!"

Now don't get me wrong, I'm not in denial: I know I've got very serious advanced metastatic prostate cancer, and "statistically" my prognosis is poor. But I also know that there are *many* examples of people who have gone into remission from where I stand, and that there are also many fruitful lines of treatment that lie completely outside what the official "statistics" measure. So I refuse to be categorized by any kind of "get used to it!" diagnosis.

Even beyond this, the reason I get angry at attitudes like this is that there's simply no need for doctors to discourage their patients with this kind of framing. Take the example of Dr. Thaller: his stated *intention* to me is that "the tumor must vanish!" He of course gives me the necessary caveats that he can guarantee no such thing. But I walk away from that conversation with confidence, and a knowledge that my caregiver is fighting for me.

Conversely, when someone tells me to "get used to it", I'm discouraged, and it tells me only that my doctor wants to *manage* me. It honestly takes me four or five days to readjust my attitude after this encounter.

Sadly, I see this attitude everywhere in the States. Even the billboards for Proposition 15 (a Lance Armstrong-backed cancer research initiative) feature a bald cancer patient. That doesn't tell me that "we intend to cure cancer" -- that tells me that "all cancer patients look like death warmed over because we give them chemotherapy."

Don't vote for Proposition 15 -- it will just give more money to the same pharmaceutical and insurance giants that already poison people with chemotherapy and radiation.

------
* I'll be taking the Dutch version of Prostasol -- the American version was found to be tainted with estrogen.

Sunday, September 30, 2007

Detour

Well, we almost made it out of Germany. We woke up at 3am Saturday to head to the Munich Airport. I was feeling weird pains in my side but ignored them -- we had to make it to the airport and turn in the rental car by 6am for my 7am flight to Amsterdam.

We didn't make it on the first try. We only made it 5 miles down the road and the pain was excruciating, I couldn't imagine driving the 2 1/2 hours to the airport. We turned around and tried to imagine how we could reschedule both of our flights.

Twenty minutes later (after some aspirin), I felt better and was determined to make it, so we headed out again. It was still pitch dark and raining cats and dogs. The car navigator picked the weirdest route for us in all creation -- through every little town and curving mountain road, which of course was a real joy to navigate in my condition. After an hour of this, I really couldn't drive any more, so Liz took over. Finally, on the motorway to Munich, I realized that I was doubling over in pain. We decided to call Herr Dr. Thaller, and fortunately he answered the phone at 5:30am, and told us to come back to the clinic for an examination.

After a quick ultrasound once-over, he diagnosed me with a swollen lymph node, which was blocking the ureter from the kidney and causing pain. He sent us to the hospital, and fortunately they found out that a big dose of ibuprofen would keep me out of pain for a few hours. They told me to wait overnight, and if I was still in pain, I needed to go to a bigger hospital with a urology department.

So then we began to wait. (Meanwhile, we had to find a new flight, a place to stay for the evening, etc. etc.) The ibuprofen worked like in a charm, but going to bed that evening I felt woozy -- and that night I sweat more than I ever have in my entire life. The bed was literally dripping from head to toe, I must have put out a couple of quarts of sweat.

But by morning I felt great, and didn't need any more ibuprofen! The sweatstorm was the breaking of the fever, or infection, or whatever had caused the lymph node to swell up. And in retrospect, it was to be expected with the dendritic cell therapy: my prostate had previously swollen up for a couple of days. In the fight against cancer, infection is a great tool: it's what happens to me every day during fever therapy, and almost every example of spontaneous remission has involved a serious infection. Something about the immune system absolutely flipping out allows it to attack cancer cells that it had previously ignored.

Today we had a 6-mile hike through the mountains to the next village of Pappenheim -- it was a perfectly gorgeous Fall day and I was so grateful to be walking through it.

Friday, September 28, 2007

Last Day in Markt Berolzheim




I had one last intense fever therapy session today. The shivering was intense (over 30 minutes!), and the fever got up to 104.4°. Also local hyperthermia on my scapula.

Kristina packed up the supplies we'll need to continue injections of the Newcastle Disease Virus until we return to the PraxisKlinik in six weeks. Tanya and Kristina and I had a long "conversation" (them in German, me in English) about my flight times and the time difference with Texas to determine if we had enough dry ice to protect the virus for the whole trip. It doesn't seem like it will be a problem.

Then came "die Rechnung", the bill for the past two weeks. Because of the start of the dendritic cell therapy, this will be our most expensive trip here: the total was $24,887. Yow! Liz wryly noted that this would be a down payment on an apartment in the South Bronx…but then, I'd still have cancer, and I'd be stuck in the South Bronx!

All in all a really great trip. Herr Doktor Thaller gave me the highlights of my laboratory results from this week: my liver functions have *dramatically* improved since the last visit. And my PSA is down to 4.2, less than half of what it was the previous visit. Yippee!!

Thursday, September 27, 2007

Something's Happening

Another strong session of fever therapy today -- I was shivering intensely for 30 minutes, and my temperature got up to 105°. I was really wiped out by the end of the day.

The best sign of the day was that my body is working hard to eliminate some toxins -- my urine is a weird orange color and it smells wretched. And I feel sick all afternoon after leaving the clinic -- a snuffly nose and exhaustion, which is unusual. These are both potentially good signs -- maybe the dendritic cells are having an effect already?

Wednesday, September 26, 2007

Full Moon Double Whammy

Today I got the best shot of two different experts, and had a battle with my own demons.

It starts out as a pretty normal day at the clinic. I have fever therapy and hyperthermia. I was anxious to get out of the door by 3:30 -- I'm set to catch a train to Augsburg to learn Tibetan Qi Gong from Frau Dr. Thaller.

But right before I leave, my dendritic cells arrive from the lab -- the centerpiece of my two-week visit here to the Clinic. Tanya rushes me to a treatment table and unwraps the box. Herr Doctor Thaller comes in and inspects the filled syringes that the lab had sent. As he holds up the first syringe, he announces that he has just been invited to demonstrate his injection technique at a clinic in Dublin. There's a certain centeredness and power about him when he wields a needle: he is clearly in his element with them.

So he injects dendritic cells into the skin of my shoulders (apparently the dendritic cells have their greatest effectiveness while in the skin). He injects me ten times on each side, slanting the needle in at a slightly different angle each time, Tanya darting in between jabs to quickly wipe away the single drop of blood that appears at each site.

Then Herr Doctor prepares the second syringe: the immature dendritic cells, to be injected directly into my prostate, where they will encounter the tumor cells that have been marked by the Newcastle Disease Virus. He instructs Tanya in German to prepare a dose of Coley's Toxins for injection into the prostate at the same time. I ask the Dr. in English if I'd heard that correctly -- he says, "Yes, your case is absolutely unique, and this is a perfect opportunity to potentiate the cancer cells in your prostate with the toxins. And if you were to tell this to an immunologist, their eyes would go wide with disbelief!"

I like this guy. He's a modern-day version of a Victorian-era entrepreneur-scientist like Edison or Tesla, moving the experiment at hand forward based on insight and empiricism.

So the injection -- only a few seconds, unpleasant but there it is.

Then the swing begins to the other pole of my day: meeting Frau Dr. Thaller at her apartment in Augsburg for a seminar in Tibetan Qi Gong. I'm looking forward to it immensely -- but for some reason, I am confronted with an absolutely astonishing number of obstacles before I get there. I almost miss the train, I have to take her dog with me on the train, the rental car isn't there, the second rental car has a defective navigator, I drive aimlessly around Augsburg for two hours, missing our appointment, I get lost repeatedly and ridiculously. Finally the tribulations part for a few minutes and I meet Frau Dr. Thaller, she is all smiles and extremely professional and patient. Her studio is an island of calm and centeredness: she teaches me several techniques and implores me to remember that whatever else I am doing, knowing how to properly direct my inner energy is the most important part of my treatment.

After learning a few techniques, I am on my own again -- and whatever forces have collected to try and distract me from this (internal demons? external? just the energy of a strange full moon?) are at work again: I get lost several times -- but this time, the navigator is *literally* instructing me to go around in circles, several times, for miles and miles -- !! I'm not freed from the looping until I ignore the instructions, center myself, repeat Om Namah Shivaya in a loud voice, and drive by blind reckoning to meet Liz an hour and a half away.

Whew. Two powerful techniques to battle the cancer in one day, and then a battle to accept and assimilate them.

Tuesday, September 25, 2007

Whew, It's HOT in Here!!

Big day at the Klinik today. I didn't respond to the initial dose of the fever therapy, so I received a second dose around 10:30. That *really* set me off -- within 40 minutes I was shivering vigorously, and ended up having a fever of 106.2° -- yow! I think that's probably the highest fever I've had in my life. At that temperature, I am really not present mentally: Liz says I was talking, but I don't remember anything for about an hour and a half. Herr Doktor was really happy -- as I was leaving for the day he pulled off his glasses and emphatically said, "*Very* effective results!" Fry those cancer cells, baby!

I had local hyperthermia today too, focused on the prostate -- I have my legs up in the gynecological position for an hour, which is extremely charming. So far I've been able to persuade Liz *not* to do a drawing of me in that position.

The big surprise of the day was saved for last: my Natural Killer cells had arrived back from the lab. So I got a wad of them injected directly into my prostate. Kids, this is *definitely* something you don't want to try at home! Ow, ow, ow, ow, ow.

Thursday, September 20, 2007

Frau Dr. Thaller


(drawing by Liz of me with acupuncture needles)

So today I'm standing in my briefs on a wooden footstool in Herr Doctor's office. Yesterday I had really bad lower back pain, brought on by the shivering from the fever therapy. (though maybe contributed to by the injection into my prostate a couple of days ago?? Lower back pain is a symptom of prostate cancer.) Dr. Thaller is gliding his hands in an intuitive motion over acupuncture points all over my body, then zooming in with a metallic tube filled with a homeopathic solution including organ extracts, and jabbing each point. It makes a noise like a staple gun, I get a little jolt to tell me something's happening, and the skin is broken slightly so that the solution can enter. It's a wild combination of Chinese and German medical styles.

Meanwhile, my eyes wander over to an old photograph that I've seen several times hanging in one of the window bays. It's of a young girl in her 20s, and her hair style is that unmistakable hippie cut of the 70s: absolutely straight long blond hair, with an equally straight part right down the middle of the head. Maybe it's one of Dr. Thaller's older daughters?? We know he has 7 kids, but we've only met Tristan, his (absolutely charming) youngest son, who's 20.

Anyway, the staple-gun acupuncture session ends, and I am sent to a bed in another treatment room where Kristina places acupuncture needles in all of the points that the doctor has treated. I lie there looking like a pincushion for a while and Liz does a nice sketch of me.

The rest of the day is pretty uneventful -- no shivering and a low fever. At one point Liz idly wonders whatever happened to Dr. Thaller's wife -- is she still alive? Still around? We've never heard any mention of her and it seems a missing presence in the whole PraxisKlinik story.

That night we treat ourselves to a dinner at the Gastätte Meyer, the only restaurant in Markt Berolzheim. It's very much a small-town joint -- only five tables in the main room, and the chef often comes out of the kitchen to chat with the guests. We're sitting there fixing to order when in walks Tristan (Dr. Thaller's son), with an elegant-looking woman around our age. He proudly says to us, "I'd like to introduce you to my mother!" As I reach to shake her hand, a light bulb of recognition goes off: this is the same woman as in the photograph this morning! We proceed to have a very nice conversation with her; she's a psychologist and Qi Gong (chi gung) instructor, and she's here teaching a Qi Gong seminar for other health practitioners. Her practice is in Augsburg (about an hour away) and she's obviously no longer with Herr Doctor (although he's never mentioned.)

Tristan is really keen to have me talk with her about Qi Gong -- and frankly, I am too: I took Qi Gong lessons many years ago and loved it. I've always felt much more easily-centered with moving meditations like that than with sitting meditation. We agree that I'll visit her office in Augsburg either next Tuesday or Wednesday. "You need something more than Qi Gong," she tells me. "For cancer patients, the best way to get the energy flowing properly is Tibetan Qi Gong."

I'm absolutely psyched -- I've felt like some kind of physical exercise that I do on my own has been the missing component of my treatment so far. And I'm glad to finally see the other half of the PraxisKlinik picture: I had seen some mention of Qi Gong on a previous version of their website, but nobody had ever said anything about it during our visits.

Wednesday, September 19, 2007

Knocked Out at the Klinik

Today is the first day back at the Fever Therapy. The shivering is intense, I throw out my back, the pain gets bad enough that Herr Doctor first gives me ear acupuncture (doesn't work), and then has to give me a dose of fentanyl (opiate pain reliever), which knocks me out *instantly*. The problem is that once I leave the Klinik I'm knocked out for the rest of the day and night -- I can barely put one foot in front of the other to walk home, and immediately fall asleep for 18 hours.

The good news is that my fever got to 104.9, the highest it's ever gotten in these treatments. Higher fever = more cancer cells dead.

Tuesday, September 18, 2007

Tied to a Huge Lego Machine, and a Needle in the Prostate

So today the Dendritic Cell Therapy begins. The first step is "leukophoresis" -- they need to harvest a bunch of my white blood cells to send off to the lab. The lab will use them to manufacture Natural Killer cells and Dendritic cells (that's my current understanding of the process, anyway)

What this means today is that I have a 2" long needle plunged into each arm. My blood goes out one arm and into a really amazing-looking contraption: there are plastic tubes spread out over a diagram on the front panel of a machine with various pumps. I can see the blood going in and out of all the tubes -- it's interesting to imagine what all the stages are doing. Kristina (one of the nurses here) is competently adjusting all the parameters, but can't really explain it to me all that well because of the language barrier. All I have to do is watch one gauge and make sure it doesn't get below a certain level -- I squeeze my left fist repeatedly if it does (which increases the pressure of the blood coming out of my arm.)

At the top of the machine are several bags -- some for saline or other compounds that are being pumped into me, and one for the leukocytes (white blood cells), which are a pale orange. Kristina has a color chart she compares with it occasionally, and makes adjustments to the machine when the color is off.

At the end of the line the remaining blood comes back into my other arm. It's a pretty interesting process as long as I abstract from the needles in my arms -- Liz is more freaked out by it than I am.

The other "highlight" of the day is a direct result of giving the green light for the dendritic cell therapy. To mark the cancer cells, Herr Doktor wants to give me an injection of the Newcastle Disease Virus directly into my prostate, since that's where the bulk of my tumor is. I blithely assent, and soon I'm lying on a table with various fingers and needles aimed at my prostate. What I didn't count on was the pain -- I had no idea that there were pain receptors inside the prostate.

Now I know, believe me!

Monday, September 17, 2007

Under the Lindens (analog version)



(drawing by Liz)

Under the Lindens





(lots of back-and-forth this week about the dendritic cell therapy. Liz says it best:)

"Here we are back in the hills of Bavaria. In our three week absence the trees have begun to turn, pears are now bulging suggestively, walnuts beginning to drop, and all the gardens now putting on their last hurrah. It looks like everyone has more tomatoes than they can eat, dahlias and sunflowers and roses all making a run for it, plums all over the walkways and pumpkins starting to show up by front doors. We have bright blue skies.

"It's a good thing, this country living... We did spend a lot of our weekend ruminating on the next step in Nick's treatments, as this is the moment where the big deal Dendritic Cell Therapy begins, and it is an expensive aspect of the whole process, and we are trying to put the money where it's really going to do some good, so Nick was hoping to get enough information to know this is the right thing to do. It has caused a good bit of anxiety and deliberation, mostly because we don't know exactly what we're doing, and one seldom does with this crazy cancer stuff. By the time this morning rolled around Nick was exhausted, sleepless and resistant to beginning the treatment that is scheduled today and so we decided to have a meeting with Dr Thaller to try to get a clear idea of the importance of this procedure. Herr Doctor was emphatic but controlled, he did his best to not be frustrated with us, and to try to find a way to explain. He sees the Dendritic Cell thing and the Newcastle Virus thing as a very vital combination and gave his reasoning. Nick still was concerned and wanted to be clear on this route, (it's no picnic, these treatments) and so, after awhile Doc suggested we go to the Linden trees. We hadn't been there yet, up on the hillside above the town, in the middle of a cherry orchard. There are seven really old Linden trees in a circle and a spring there in their shade and we had heard that the water is very good to drink and there was a log bench and it is just the loveliest spot you can imagine. Ancient and still and really perfect. So we drank the waters and sat in the shade and by the time the church bells below were bonging like crazy like they always do at noon I think the trepidation was past and the road got a little clearer and Nick saw his way to moving forward with this therapy at hand.

"We are on foot this time, not renting a car, and in this small town our rented "vacation" house is right on the edge by the fields with good views of the forests and hills. There is a tiny grocery store and we filled up a cart there with what we could, not too bad... decent bread and good looking fruit and some nice wine, even a few frozen fish entrees. Our house has six rooms, each one closed off from the next and all very neat and undecorated. Adequate in a handsome way. With internet, and plenty of eiderdown, stacks and stacks of bath towels for some reason. The landlords have that proper upstanding German look that is so often mixed with a real warmth. The sort of people that keep the shutters drawn when the sun is shining but tell us to call them by their first names. As we walked through the streets this morning everyone said good morning. I am often taken for German and get all kinds of commentary from passers by and so I guess I might get around to learning to speak at least!

"Well, meanwhile, I'll be spending a large part of my days helping Nick at the clinic, and I hope to get out and make some drawings of this place while there is such nice weather. These two weeks are going to zoom by."

Liz

Sunday, August 19, 2007

Let the Treatment Begin!



Sunday we bid goodbye to Madeleine and Andreas -- they were such a godsend! - and took the train to Nurnberg, where we stayed for a couple of nights in the "Altstadt", the medieval part of the town that was painstakingly rebuilt after being bombed extensively during WWII. Here Liz and I discussed our strategy going forward (we liked Thaller a lot, but his treatment program is much more expensive!), and geared up for returning to Markt Berolzheim. By Tuesday morning we had acquired a cheap rental car (with a TomTom navigating device, a must for going to small towns!) and drove down to begin treatment.

Dr. Thaller gave us a warm welcome again, and gave me a "focus diagnostic" that led him to prescribe various homeopathic remedies for general detoxification. On the 2nd morning, I began the fever therapy -- 1 hour after the injection, I was shivering with chills, then in another 20 minutes I had a 103 - 104 degree fever (up to 38.9 Celsius) -- whew, that put me through the wringer very quickly! I spent all afternoon recovering from that. Fortunately I met two other patients with their helpers here who were all English-speakers -- they had all come over on the recommendation of Ralph Moss from the Moss report; this was really reaffirming that we were not alone in our strange quest to come to this farm town in Bavaria!

Thursday we spent the day driving cross-country to a very nice hospital clinic in the Black Forest . We stopped for lunch at a great café in Nordlingen, and enjoyed the scenery as we approached the "Black Forest" -- we are in a town, Donaueschingen, where the Danube River begins, and it is extremely beautiful. The windows to the hospital room are open all night, there is no TV in the room, and both my hospital room and Liz's family room are 30 Euros a night -- which seems incredibly low! Here a colleague of Dr. Thaller's, Dr Geiger, will insert two ports in my upper chest directly underneath the skin. Each will have a catheter in it that will guide either a virus or cancer vaccine injection directly to the neighborhood of the tumor . The idea is not to have the injection diluted by having to go through the entire bloodstream first; it will instead target the exact area of the tumor. The devices themselves won't be visible from the outside -- they will just be bumps in the skin, but injections can be made directly into their nylon core without any pain. Dr. Geiger seems very adept and intelligent, so I am looking forward to going off to the operation in a few minutes here!

(just back from the operation, everything went great. I came out of the anesthesia in a snap, and the doctor said the operation went very quickly. This afternoon there is a HUGE double rainbow outside the window -- very auspicious!)

Monday, August 13, 2007

Comparing Clinics in Germany


Here's a brief update on our adventures here in Germany. Everything is going well, my treatment has begun in earnest, and everyone here has been incredible!

That's the short version -- here's a little bit more detail. Liz and I arrived in Frankfurt and were met by one of our old friends Andreas at the airport -- he and his wife Madeleine and their two kids were vacationing in Germany when we came over, so they diverted their trip to help us out! Andreas drove us through heavy rain to the Hufeland Clinic in Bad Mergentheim on Thursday, where we had a good interview with Dr. Demuth. It was great having Liz and Andreas there with me -- we made a great team, and asked all the right questions! (and Andreas also provided some key translation help). The clinic itself was very professional-looking, and was surrounded by other clinics in an upscale spa town. Dr. Demuth was very professional, and his first recommendation was a conventional palliative treatment for bone strengthening (an IV drip of Zometa), which I can get in the US under my insurance. His clinic's treatments sounding interesting, and were a good integration of body and mind (psychological counseling as well as good alternative therapies), but all of us thought that the clinic was kind of "cancer lite" -- there was nothing specific in what Dr. Demuth said that would apply to my bone metastases, which is the most critical part of the cancer currently, and the most important to do something for.

We spent a great evening that night with Andreas and Madeleine and their kids Ava and Otto, at Andreas' brother's house in Heilbronn. (The brother is on vacation elsewhere, so we had the entire house to ourselves -- very nice!) The next morning we started the second round of interviewing, with Andreas driving us through the rain (again!) to visit the PraxisKlinik Arno Thaller in Markt Berolzheim. This is a tiny Bavarian farm town (the clinic is right next to a cow barn!) and the whole experience was much different than the previous day in Bad Mergentheim. Dr. Thaller operates the clinic out of his large house, and the whole place is filled with wood carvings, publications, a big piano and has a very homey feel. Dr. Thaller himself was large and gregarious, and we had a good conversation with him. He described his particular ideas for my treatment regimen, and it was specifically oriented toward attacking my bone metastases. He showed us pictures and diagrams of a very similar patient with advanced prostate cancer whom he had helped immensely -- the difference between the "before" and "after" bone scans of this patient was dramatic.

Dr. Thaller's treatment is a 4-step process that's focused on helping the body's immune system to attack the cancer. (I'm abridging here from his paper on the process, which you can read here)

• fever therapy (using Coley's Toxins) -- this injection induces a fever, which harms cancer cells much more than normal cells

• local hyperthermia -- this is a heat-generating machine that focuses heat on the tumor -- it's used at the peak of the fever induced from step 1 so that there's an additive effect on the cancer

• virus therapy (using Newcastle Disease Virus) -- this is a virus that's specifically bred on prostate cancer cells, and preferentially targets those cancer cells for destruction. The idea is that the virus gets in and destroys as many cancer cells as possible before the virus itself is destroyed by the immune system (the virus is completely harmless to normal cells). The virus also performs a secondary function of "marking" with an antigen many more cancer cells than it kills -- this primes them for the final step:

• cancer vaccine (or dendritic cell therapy) -- this step makes a vaccine from my own dendritic cells, and injects it back into my body to "wake up" my T-cells to start attacking and killing the cancer cells. American drug companies are doing final Phase III trials on some similar vaccines that are based on a generic prostate cancer cell; the results so far have been fair-to-middling. The advantages of Dr. Thaller's approach are that 1) the vaccine is made from my own dendritic cells, so it is individualized; and 2) the cancer cells have been previously "marked" by the Newcastle Disease Virus, so that they will be more readily attacked by the T-cells once the vaccine is injected.

During our interview, Dr. Thaller explained these four steps to us, as well as other anecdotes -- such as the time that he smuggled some of his special version of Newcastle Disease Virus into a clinic in Jerusalem, evading the airport authorities -- it was a very engaging interview! Andreas asked him at the end of the interview what he expected the result to be, and he stated emphatically: "it is my intention to cure him!" Of course he gave us the caveat that he could guarantee no such thing, but we all liked his positive and experimental attitude toward the case -- it sounded much more proactive than what we had heard from Dr. Demuth at the Hufeland Clinic.

That night we returned to Heilbronn and had a wonderful meal with Madeleine and Andreas and the whole family at Volksgarten, a restaurant serving local dishes -- it was delicious! (Spatzle, yum!) The next day was Ava's 8th birthday so we had a birthday party for her, went grocery shopping, and had a nice hike up into the vineyards that are on all of the hills at the top of the town -- they were only a few blocks uphill from the house where we were staying. Saturday was finally a beautiful sunny day!