Showing posts with label dendriticCellTherapy. Show all posts
Showing posts with label dendriticCellTherapy. Show all posts
Saturday, May 2, 2009
Which Do You Want to Hear First? (You Decide!)
Bad News: because of my increasing baseline bone pain (see previous post), I've had to postpone my ultrasound home therapy, since it creates an inflammation response that is even more painful.
Good News: If I can get a prescription for either prednisone or dexamethasone (steroids), I can continue the ultrasound therapy, since these will suppress the inflammatory response without suppressing the cancer-killing activity of the ultrasound (this is how the therapy is carried out at the Dove Clinic in the UK for people, like me, with a heavy tumor load).
Bad News: Although my oncologist had previously recommended prednisone for me for unrelated reasons, I thought I would be able to get a prescription from her -- but now she no longer wants me to be on prednisone.
Good News: As a replacement for the prednisone she was going to recommend, my oncologist wants me to start on ProVenge, an anti-prostate cancer vaccine that's new and has had some success. (I received a personalized version of this vaccine when I was treated in Germany in 2007 and got a complete remission for eight months.)
Being a basically cheerful person, I will end with the good news! ;-)
Labels:
dendriticCellTherapy,
Germany,
ProVenge,
SDT,
treatmentPlan
Saturday, January 31, 2009
new immunotherapy treatments next week!
I'm psyched today -- I just received a detailed description of the new immunotherapy treatment that I'm going to start at the Center for Wellness near Santa Cruz next week.
Immunotherapy is what I received when I was in Germany back in November of '07 that worked really, really well on the metastases I had at that time. The intention is to strengthen your own immune system so that it acquires the power (and good sense!) to attack your cancer cells, just like it does when cancer cells pop up as a matter of course throughout our lives. (Interestingly, this is exactly the *opposite* approach taken with chemo and radiation, where the immune system is battered along with the cancer!)
The treatment will be under the supervision of the Center for Wellness, the same place where I've received really excellent ayurvedic care for the past few months. After a BIG swing around the research circle (more on that in future posts), I've come back to these guys because they have a LOT of treatment tricks up their sleeves. They have a lot of international connections, and I've been impressed with their determination to create a treatment plan for me that mimics the best of what I received in Germany -- at a fraction of the cost ($3900 for the initial six days of treatment, as compared to $16,000 for one week of treatment in Germany.) The treatment is also set up in a way that lets me do 90% of the treatment at home, so I think I can still keep my job. I'm really looking forward to this and have a good feeling about it!
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.
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.
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!
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!
Labels:
acupuncture,
dendriticCellTherapy,
fevertherapy,
PraxisKlinik
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.
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.
Labels:
dendriticCellTherapy,
fevertherapy,
hyperthermia,
PraxisKlinik
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.
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.
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!
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!
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.
--------
* 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.)
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.
--------
* 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.)
Labels:
dendriticCellTherapy,
Gonzalez,
PraxisKlinik,
Prostasol,
treatmentPlan
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.
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.
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?
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.
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 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!
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
(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
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!
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