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! ;-)

Pain Management Merry-Go-Round

(WARNING: TMI alert for this post!)

Thanks to all of you that sent notes, calls, and well-wishes this week. Sorry I haven't been able to get back to you and thank you properly, as I've been caught up in a pain cycle I wish I could get out of.

I have a couple of good hours a day (like right now), and then my bone pain starts up again. I have a variety of escalating remedies I can take for it, but I always end up (unfortunately) with vicodin. Even with that I am still sometimes crazy with pain at night.

The vicodin makes me really constipated...and the bone metastases also make me really constipated, since they dissolve bone material into my bloodstream. Together, both processes make me painfully constipated, which just adds to the cycle.

Two days ago I felt good enough to take a long walk...but I started feeling a dull ache near my perineum, and have had blood in my urine ever since. I have a call in to the doctor to see if there's any immediate action I should take. (I hate wasting the perfectly good blood transfusion that I got just last Saturday!)

Once I'm able to decrease the pain, I'll be able to evaluate whether this dear old body will be stable enough to move into an apartment on my own. For the past few days I haven't been very sure about this.

Ow, This Thing Really Works!!

Here's the ultrasound machine that I have at home -- it's the same one that I was using at the Hope4Cancer clinic in Mexico.

Every week I dissolve three chlorophyll capsules in my mouth and wait 24 hours. Then I smear myself with olive oil and baste for 30 minutes...no, wait, I smear myself with olive oil and then jump in the bathtub! I then slowly rub the wand over the areas where there are tumors.

While I'm using the ultrasound wand, it's absolutely painless -- I actually can't feel a thing. Within four hours, though, it kicks up an inflammatory reaction in the areas where there are tumors -- my femur, pelvis, and spine. I feel some pain, depending on how long I applied the wand. I definitely have to work on my timing so that I do it for long enough to make a difference, but not too long to make the pain too intense!

Despite the pain, it's really good to know that the treatment actually has an effect, and that I can see such a quick feedback loop between something I do and the effect it has. For so many of the treatments (like the supplements I take, for instance), there's really no way to directly know if I'm having any kind of impact. With the sonodynamic treatment -- oh, you better believe I can feel when I've undergone the treatment!

The next step is to find a helper to use the wand on places I can't reach on my back, and to set up the bank of lights that will complement the ultrasound treatment in activating the chlorophyll inside the body.

Where I Stand Now

One week after returning from treatment at Hope4Cancer in Mexico, here's where things stand:

I'll follow the two weeks of treatment at the clinic with eight weeks of home treatment by ultrasound (more on this in a later post)

My anemia has become very severe. My hemoglobin level has declined to 8.72, which means that I am ridiculously weak (like can't-make-myself-get-out-of-bed weak). Fortunately I'm getting a blood transfusion today that should make me feel much better for a few weeks (the last one helped me out for 5 weeks).

My appetite is also in the tank, and it's been hard to force myself to eat anything substantial. Being in the clinic helped, but now that I'm home it's a bit hard to reproduce that kind of regular, encouraing routine! The blood transfusion today should also make me more hungry.

Liz has decided that she shouldn't / doesn't want to commit to our relationship, so we will be going our separate ways.

Accordingly, I want to extend a heartfelt thank you to those of my friends that have stood by me and offered their assistance -- thank you all so much! Your kind thoughts and offers have helped immensely and I love you dearly for it.

UPDATE (4/27): the blood transfusion helped tremendously -- both my energy and appetite are much improved -- yay!

A Bit of Science

Here's a couple of great articles about the effectiveness of the sonodynamic treatment. One of them has an exhaustive chronicle of what happened to each of the 116 patients that have been treated with this therapy at a clinic in the UK. (PDF files)

Photodynamic and Sonodynamic Therapy

Next Generation Photodynamic Therapy (PDT) and Sonodynamic Therapy (SDT)

It's the People That Count!

(more Tijuana photos by Liz here)

I'm completely loving the scene here in Tijuana! (or "TJ", as everyone here refers to it*) We're actually in Playas de Tijuana, separated from the rest of the city by a major highway and a mountain range -- so there's no problem with drug violence anywhere near here.

The scene at the beach across the street is wonderful. On nice days, it's filled with people -- all Mexicans, and all completely relaxed and having fun. We're only four blocks from San Diego, but it's an utterly different universe. The fresh air and the happy giggling is completely invigorating, and endlessly entertaining. We were lucky enough to be invited into a local home for Easter, and we had a blast.

Inside the clinic, I am thanking my lucky stars several times a day that I ended up here after all my searching. The difference is the people! Besides being complete sweethearts, both the doctors and nurses have plenty of time to be attentive and caring, as there are only four patients staying in the clinic at any one time. Both of the other sonodynamic therapy options that I investigated (in China and the UK) were outpatient, so I wouldn't have received anywhere near this level of care. On my first day here, the doctors discovered a urinary tract infection that I hadn't even known about, and it's now completely gone.

The nurses take my vital signs and check in on me round the clock. They've also been helping train Liz to administre the two shots (Goldenseal + vitamins, and antigen vaccine) that I'll continue once I return home. Most importantly, we've been well-trained in what will be necessary to continue the therapies (both sonodynamic + supplements) once we return to Berkeley. No other place I checked into has such a well-planned approach to follow-up care.

I'll put myself through eight more weeks of treatment at home, and then get a bone scan on schedule in mid-July (which I do every six months). That will give me a progress report on how I'm doing, and let me know how well the therapies have worked.

--------
* Given that the reference to Tijuana as "TJ" is universal...and considering how sleazy a reputation Tijuana has...I can't believe that anyone actually ended up naming a television show "T.J. Hooker"! Somewhere in Hollywood, an executive producer is still chuckling to themselves.

Bad Pain -- it's a Good Thing!

Sorry for the slow posting about my stay here at the clinic. A lot of times the days are long here: I have six separate treatments every day, and then there's our three vegetarian sit-down meals, and the three juices in between meals.

But honestly, most of my time the last few days has been taken up with dealing with the pain of the therapies. Each one of them is intended to produce an inflammatory response in order to attack the tumors. And believe me, I am getting these inflammatory responses in spades! Unpredictably throughout the day, I'm getting intense pain in one of several areas around the tumors -- but mostly in my pelvis, where my tumors are concentrated. These waves of pain knock my socks off for a few hours at a time, and I have to stop whatever I'm doing and lie in bed. (although it's difficult to take weight off of my pelvis no matter how I twist and turn!)

This is actually a very good sign, as it means that the treatments are being effective against the cancer. I can stop the pain completely for a day by not doing any treatments for that day -- but then, that defeats the whole purpose of why I'm down here, doesn't it? So since I want to keep moving ahead with the treatments, the clinic has several (non-opiate) painkillers that I can use. The best has been a treatment that Dr. Tony has administered the past few days: pulsed light flashes to the acupuncture points for pain relief in my ear. The last few nights I've been able to sleep soundly, without intense pain. It's made the whole treatment process much more manageable, even allowing me to make a few blog posts!

Day 3 -- Everything Under Way

The routine here is well underway. I waited 48 hours for the RaphaChlor chlorophyll capsules to lodge in my system, and now I am receiving all of the therapies:

• full-body hyperthermia (pictured above -- how do you like the pig-in-the-blanket look?)

• Indiba hyperthermia: one heated metal pad is underneath my body, and a heated meta disc is rubbed slowly over all the areas where I have tumors.

The main treatment that I've come for is the sonodynamic therapy, which comes in three parts:

• photodynamic therapy: part of the chlorophyll is activated near the surface of my body by a bed of daylight fluorescent bulbs hanging six inches above me -- I stay under these for an hour.

• laser therapy: a small laser wand is slowly rubbed over all affected areas of my body, and inserted rectally to activate my prostate (oooh!). This reaches more deeply than the visible light lengths can reach on their own and lasts about half an hour.

• ultrasound therapy: I lie in a tub of water, and an ultrasound wand is slowly passed over the affected areas of body for about 45 minutes. (pictured above with one of the great nurses here helping out.)
  

We also get three square meals a day of lovingly-prepared vegetarian food, and fruit & vegetable juices three times a day in between meals. But the most healing part of the routine so far are the doctors and nurses here -- I feel so completely taken care of! Everyone is a complete sweetheart, and they are extremely patient with my rudimentary Spanish.

¡Bienvenidos a México!

Today we arrived at the US border, 3 hours late after hitting tons of traffic in LA. I am always excited by that moment when the endless streatch of interstate (+ malls + suburbs + stores + restaurants) actually DOES come to an end and we have finally run out of US land to drive through.

Jesus (the driver) is there to take us across the border, and we cruise through Immigration and head across the mountains, away from the main part of Tijuana, toward Playas de Tijuana. On the way we chat with another couple from the clinic, he has prostate cancer as well. After 15 minutes of driving parallel to the border fence, we pull off by the bullfighting ring, and turn left to land at our little clinic -- it's directly across the street from the Pacific, and the view from our room is gorgeous! We can hear the crashing surf from our window, and our view is a riot of people and color and shops. From the instant I arrive I'm swarmed by doctors and nurses (there's a staff of 10 of them here, for only four patients! I give my medical history, hand over my records to be copied, and get checked out from head to toe. I already feel VERY taken care of here!

That night the nurse brings me 12 of the RaphaChlor capsules -- the special chlorophyll formulation that I will take which will be the center piece of the sonodynamic therapy. I'm instructed to let each one dissolve slowly underneath my tongue...in ABSOLUTE darkness so that the photosynthesis of each capsule isn't triggered. Sounds easy, but it takes an hour and a half of cowering underneath the covers, sucking on the capsules!

Going To Mexico!

OK, everything's set -- Liz and I are Going to Mexico next week!

I investigated the sonodynamic therapy (SDT) that Ralph Moss suggested at the clinic in Xi'an, China. It's an offshoot of photodynamic therapy, which is a fairly standard American therapy for surface cancers (like melanoma). SDT is a relatively new treatment that shows good results for prostate cancer (and bone metastases) that can't be reached very well with surface treatments. (See my earlier post for more details and a description of how it works; the link above is the best scientific description I've seen, and has case studies of 116 different patients that have been treated with SDT.)

Further investigation revealed that there are three places in the world that currently offer this treatment: the clinic in China (which moved over from Australia), the Dove Clinic in London, and the Hope4Cancer Institute in Tijuana.

They all use exactly the same sensitizing agent and treatment technique for sonodynamic therapy.

And I can *drive* to Tijuana!

What really sealed the deal was my conversation a couple of days ago with Dr. Tony Jimenez, the head doctor and researcher at the Institute. He's a nice guy from New Jersey who's intimately familiar with a lot of the best therapies that I've been researching, and has a great approach to the combination of treatments that I'll be receiving at the Institute. I liked him a lot, and you'll be hearing a lot more details of the treatment once we arrive.

I want to take this opportunity to express my deep gratitude for all of you that have helped to make this trip possible. I'm not fooling myself that this is any kind of "miracle cure", but it's a darned good shot at getting substantially better, and I couldn't be doing this without your incredibly generous help. Thank you so much!

oops, a little blood leak...

The last week or so has been pretty interesting...in the sense of seeing new phenomena in my body that I'd rather not see.

I started losing some blood through my urine...not painful, but I'm really not used to seeing something the color of Hawaiian Punch in that neck of the woods!  At the same time, I started becoming noticeably weaker -- by mid-afternoon every day, I really needed a nap.

Blood tests showed that my red blood cell count was dangerously low (10.2) -- I was suffering from anemia.  The doctors originally thought it was due to a urinary tract infection, and gave me a round of antibiotics to combat it.  This did nothing.  I came up with a more likely cause when I noticed a bruise developing at the bottom of my ribs. My hypothesis (admittedly nothing more than the opinion of a *very* interested layperson) is that the metastases growing on my ribs were causing some internal bleeding, which was being siphoned off by my kidneys into my urine.

I got a blood transfusion last week at Alta Bates, which helped my strength somewhat. And fortunately, the (external) bleeding has completely stopped.  I never was in any pain -- but it was a definite (and STRONG) reminder that I need to get myself into a powerful treatment program ASAP!

a third possible treatment: IPT

I spoke with Dr. Dean at the Euro-Med Center in Scottsdale today about a treatment that I've become interested in checking out: insulin potentiation therapy (IPT).

Here's a great description of it:
http://www.euro-med.us/cancer-treatment/insulin-potentiation-therapy.cfm

short version: cancer cells LOVE glucose. In IPT therapy, you're given insulin, which lowers your blood sugar...all your cancer cells start crying out for more glucose! At that point you get a lot of glucose COMBINED with low-dose chemotherapy. The great advantage of this technique over standard chemotherapy is that it's a small enough dose that it does no harm to your immune system.

I'm trying to find someone that will give me a valid comparison between this treatment and the Chinese sonodynamic treatment I'm also investigating. Both treatments can often (though not always) take patients all the way to remission -- but even with remissions, you have to go back in for periodic re-treatments. I'm prepared for that; my understanding is that cancer is a chronic condition that I'll live with for the rest of my life. It would be a lot easier to return frequently to an IPT clinic in the States than the SDT clinic in China!

Update 3/8:

After researching the IPT therapy further, it looks like it's much more appropriate for early stage cancers. I'm going to keep looking for another multi-therapy clinic in the US so that it will be easy to travel to. I'll be investigating the various Mexican clinics -- Ralph Moss has written a report evaluating the various treatments in the major clinics there, which will be helpful.

uh-oh, problems are advancing

I had a visit with Dr. Sunkara's team today, and it reinforced my sense of urgency to find (and start!) another treatment plan very soon.

My PSA has jumped to 659. That doesn't have an impact on me by itself -- it just means I have a lot of cancer floating around my system. What worries me is my low (and dropping) red blood cell and platelet counts. I'm coming in to the doctor's office to have them tested every week or so; when they drop below a specified level, I'll need to get a blood transfusion to boost my red blood cells. This will actually be great, as I am starting to feel very weak in the afternoons because of the anemia.

I definitely want my next treatment to get started before I get stuck in some hospital hooked up to a machine. As long as I'm ambulatory and independent, there are things I can do to put the cancer in check.

treatment pause

I've been on the Santa Cruz treatment for a week and a half, and I have to take a little pause from it.  The reactions I'm getting to it are way intense -- it makes it impossible to get through the day (big headaches).  The immune response that the drops, tablets and suppositories are causing are overwhelming my poor old live.  I think I need a complete liver cleanse before I tackle it again -- I will check with the doctor down there and see how he recommends I proceed.

*great* conversation with Ralph Moss! (part 2)

(In this part: UltraPheresis therapy)

I had a *great* conversation with Ralph Moss the other day. (He's the professional cancer researcher (http://www.cancerdecisions.net ) who pointed me to my original treatment with Dr. Thaller in Germany, which bought me a remission for several months early last year.)

The second treatment that Moss discussed with me (and the one he slightly recommends for me) is UltraPheresis therapy by Dr. Lentz in Prien am Chiemsee, Germany. Dr. Lentz has isolated three compounds in the blood that cancer cells produce as a decoy; as long as these compounds are in the blood, the cancer cells won't get attacked by the immune system. UltraPheresis is similar to a dialysis machine -- it filters these compounds out of your blood, and then your own body's immune system is free to attack the cancer.

Moss has also tracked several patients who have received these treatments, and they have got very good results.

description of treatment from Dr. Lentz' own site: --
http://www.biopheresis.de/index.php?id=17

great brief summary of the treatment and the theory --
http://www.euro-med.us/lentz_therapy.html

link to Dr. Moss' Flickrstream from his visit to Dr. Lentz' clinic in the German Alps (I'm almost sure I can faintly hear "Edelweiss" playing in the background!)
http://www.flickr.com/photos/24860924@N07/2514340851/in/set-72157605203869407/

*great* conversation with Ralph Moss! (part 1)

(In this part: Sonodynamic therapy)

I had a *great* conversation with Ralph Moss this week. (He's the professional cancer researcher (http://www.cancerdecisions.net ) who pointed me to my original treatment with Dr. Thaller in Germany, which bought me a remission for several months early last year.)

For the past year, Dr. Moss has been traveling to clinics around the world, and has sent several of his clients to new treatments in China and Germany that seem very impressive.

The first one, sonodynamic therapy, is an ofshoot of photodynamic therapy, which has already ben approved by the FDA for use in some cancers. Sonodynamic therapy can go deeper, to get some cancers (like my bone metastases) that aren't easily reachable with light.

From what I understand, it consists of ingesting a compound made from deep-sea algae that photosenthysize through vibration, since no light penetrates their environment. The compound is designed to be taken up specifically by cancer cells. After your body absorbs it for 24 hours, you sit in a bathtub and the doctors turn on ultrasound for an hour and a half. The treatment lasts for a couple of weeks.

The results are really amazing, even for incurable metastatic cancers. Dr. Moss has tracked several clients who have used this therapy and has seen them get good results. Here's an abstract of an article talking about the good clinical results: http://bit.ly/quJtw

Some other references on SDT:

Here's the blog of a young couple from Portland that went to Xi'an, China for the treatment. Sounds relatively painfree.

http://www.roundhousemedia.net/china/round1.html (start at bottom)

2nd page of entries -- http://www.roundhousemedia.net/china/index.html (start at bottom)

brief description of SDT aimed specifically at prostate cancer patients (scroll down to "What is SPDT, PDT?" -- http://www.prostate90.com/prostate_cancer/Metastasis.html

website of Dr. Mitchell in Australia who has moved his treatment centers to China:
www.opalclinic.com/PDTSDT.htm

new treatment in California's California!

Today was my 3rd day at the Center for Wellness near Santa Cruz. I'm getting a new treatment from Dr. Yarema here.

The idea of the treatment is similar to the one I got in Germany back in 2007 that gave me a remission of several months. It's immunotherapy, geared to wake up and strengthen my immune system so that it attacks the cancer. Dr. Y has tested my body against a dozen different isopathic compounds (similar to homeopathic compounds), to see which one reacts most strongly against my own blood. All of the compounds are represented by a letter or two that corresponds to their German names: "T", "Dx", "R", etc. The one that reacts best with my body is labeled OM !

That was all on Day 1 -- and for the last two days, he's been injecting me with a mixture of those compounds and my blood in areas that are near the tumors. Let's be honest here -- the least fun part was getting an injection in my perineum. (Why oh why did I have to choose to get *prostate* cancer??) Dr. Y is a great guy, though, and he has a good viewpoint, a lot of valuable diagnostic tools, and a crew of really great people working for him.

The best part of the trip is staying at Land of the Medicine Buddha, a local Tibetan Buddhist retreat hidden in the redwoods in the hills above town. I'm staying in a very monastic room, and there's a gargantuan spinning prayer wheel right outside. It feels like a very healing environment! (And I haven't seen so many people hitchhiking in years, or so many surfers, or so many unrepentant hippies -- Santa Cruz is truly California's California!)

oh great, another personal record

(click to enlarge)

OK, in today's "DO NOT LIKE" department, I just got results from my latest PSA test, and it's a sky-high 410. Let's see, that's over 40 times the accepted "danger" level for a PSA reading. The little cancer cells are going crazy. Fortunately, the cavalry is riding in this weekend with various immunotherapy injections and sodium bicarbonate IVs. (more details on that when I know them).

I'm also applying to a trial of an experimental drug called abiraterone that's being administered at M.D. Anderson in Houston. I don't know if I'll be accepted, but I fit all of their criteria.

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!

dealing with new symptoms

I'm a hardcore morning person. Every day I get up with an almost-unflappable positive attitude (which I cultivate as much as I can.) Usually I can't even remember anything bad that might have bugged me the day before; the slate gets wiped clean every day.

The past few mornings have been a bit challenging, though. My sense of being an independent observer looking at all my "cancer stuff" is dissolving, because I'm having to deal with more symptoms on a daily basis. My appetite is starting to decrease for the first time in the whole adventure. One out of every two days my hips are painful enough to make me pop a Celebrex for relief. I'm starting to occasionally feel the tumors in my spine, shoulder and jaw. Today I'm a little bit nauseous.

Most of what bugs me is just the worry and anxiety tht the symptoms will get worse if I don't find a way to turn this around pretty soon. But still. Dang.

hope at the Pine Street Clinic

I had a great visit at the Pine Street Clinic this afternoon (the perfect antidote to having my bone scan interpreted earlier today!!)

The practitioner reviewed my supplement list with me today, and gave me a great compliment: he said the supplements and herbs that I'd put together through my research (and the advice of other practitioners) was better than most herbalists could have put together!

But of course, the supplements haven't stopped the cancer -- so clearly, something else is needed. He recommended balancing what I'm doing now -- which is *passive*, just taking pills (even though it's over 70 pills a day) -- with *active* treatments for the cancer. By this he means diet, exercise, and specifically Qi Gong exercises tailored for cancer.

He also recommends finding a much more aggressive main treatment -- either through clinical trials of experimental drugs, or through another alternative treatment. I'll be investigating those in the next week and will report back.

reality check with Dr. Swift

(black dots are tumors; click picture to enlarge)

I had a bracing talk this morning with Dr. Swift, my radiation oncologist (I'm not getting any radiation, but he's the resident prostate cancer expert at Alta Bates).

When I got a copy of the film at the bone scan last Tuesday, I knew it was bad...but I could only stand looking at it for a little while and I filed it away. My coping mechanism was to immediately dive into researching what my next treatment would be (a process I actually enjoy -- it gives me hope, a sense that possibilities actually do exist out there, and it's something over which I exercise partial control).

Talking to Dr. Swift today reminded me in stark terms exactly what I'm facing. The worst metastases are in the pelvis, which have developed dramatically since my last scan six months ago. I also have many, many new metastases -- mostly on vertebrae, but also a few on my ribs and scapula.

So where do things go from here if the cancer keeps progressing? The bones where the metastases are will become weaker and weaker, and eventually break. A break in my pelvis means pain, six months of being bedridden, and a big, big hit to my mental state. A break in one of my vertebrae might mean partial or complete paralysis.

Needless to say, this is a HUGE motivator for me to find a more effective treatment than what I've been on. It's also a giant challenge not to think about dreadful possibilities all the time. This is the strongest challenge to my cheerfulness and equilibrium that I think I have ever encountered. Fortunately I'm still upbeat most days -- going to the ashram for chanting or meditation really helps, and Liz is being a peach!

Alternative Treatment Hunt

A quick recap for those of you just joining us: when I was diagnosed with Stage IV prostate cancer in July of 2007, I was already at the point where Western medicine really had nothing to offer me. (And definitely nothing that could offer the hope of a cure.) They did offer two palliative treatments. One was hormone blockade therapy, which consists of Lupron shots that zero out my testosterone -- this starves the portion of the prostate cancer that thrives on testosterone. (Yes, this is the same shot that they give to sex offenders...and yes, it has the same scorched earth effect on my sex life.) The Lupron only works for a while...and for me that period ended sometime a few months ago, when my PSA started to skyrocket again.

The second Western palliative treatment I used was Zometa, an industrial solvent (!) that slows the growth of bone metastases. Every time I get my infusion, I have pain for a couple of days as the Zometa does its job. (I'm also taking strontium citrate, a non-radioactive natural supplement that supposedly halts metastases the same way that Zometa does.)

So, long story short: from the very first day of my diagnosis, I was forced to search for alternative treatments for my cancer if I really wanted to have an impact on it. I found a great ally in Dr. Ralph Moss, who has researched the cutting edge of both alternative and conventional treatments for the last thirty years, evaluating which ones work and which ones are hokum (and believe me, there's a lot of hokum in *both* camps!) It was his recommendation that led me to Dr. Thaller in Germany as my first treatment. This was successful, but mind-numbingly expensive ($80,000 for a combined 5 weeks of treatments over several months).

After a brief stretch on pancreatic enzymes and supplement-only therapy, I settled down to ayurvedic treatment this summer -- first at Mt. Diablo Institute in Pleasant Hill, and then at Center for Wellness in Aptos. I learned a lot, I received good care for the psychological and some of the physical aspects of my illness -- but it didn't hold the tide against the advance of the cancer. So I am dipping my toes back out in the world of researching alternative treatments to see what alternatives there might be for me.

surprise.

Well, I had an interesting week. I get a bone scan every six months, and this one came back looking pretty bad. I got my PSA score a couple of days later, and it's 278. Also bad. So the ayurvedic treatment is making me feel and look great on the outside, but it's not doing much against the cancer. As luck would have it, the very next day I had an appointment already booked with the Pine Street Clinic, who had been recommended to be by several different knowledgeable people. They do in-depth research on conventional, Chinese and alternative treatments and are the smartest people about designing cancer treatments of anyone I've seen to date. The guy spent 2 1/2 hours with me going over my current treatments with a fine-toothed comb, and he'll have a set of recommendations for me when I go back next Tuesday.

Ruh-roh!

Just got my PSA test back for this month, and it doesn't look that great -- it's up to 96.1. It seems clear that I'm going into a hormone-refractory phase, meaning that the Lupron shots that I've been taking off and on (mostly on) for the past year and a half are no longer suppressing the cancer. The Lupron zeros out my testosterone, and the testosterone creates prostate cancer -- until now, when the cancer has (mostly) figured out how to work around the lack of testosterone.

First of all, there *is* a Plan B. My oncologist has put me on ketoconazole (the main ingredient of dandruff shampoo!), which supposedly has a similar effect to Lupron and works for a while even after the Lupron has become ineffective.

Secondly, I am *so* happy to say goodbye to the Lupron. Other than the body blow to my late, lamented libido, it's also been responsible for hot flashes, mental confusion, and occasionally pretty severe depression. Not gonna miss any of that, uh-uh!

Lastly, I'm not as nervous about high PSA scores as I used to be. I've been told that guys can often live for five years with scores this high, as the free-floating PSA doesn't map directly into physical deterioration. And I'm undertaking other, completely unrelated measures (the ayurvedic work) to build up my health -- which is a completely different paradigm than "battling the cancer".

Shadelands synchronicity!

For the past few months, I've been trekking out to Pleasant Hill in the East Bay suburbs to get my ayurveda treatments. The Mt. Diablo Wellness Institute there is in the middle of an old suburban office park, and I didn't relly think twice about its location. But today Liz and I were driving out there and she said, "Hey, let's visit my family's museum!" It turns out that her great-great uncle, Hiram Penniman, used to own the Shadelands ranch and orchards around the turn of the last century. The house is all that remains and is now a local museum -- the rest of the land was sold to make way for the office park! So all this time, I've been getting my treatments on Penniman family land -- nice!

Medical Details so far this year

Here's the treatments I have been working with so far this year:

ongoing: American standard
Lupron shot (every 3 months to zero out testosterone, which is the building block for prostate cancer)
Zometa IV drip (every month to whack metastases)

January - February: pancreatic enzyme treatment
This well-regarded alternative treatment is based on 1) good vegetarian and raw diet, 2) wide range of supplements, 3) big doses of pancreatic enzymes, and 4) detox. See Dr. Gonzalez's site at http://www.dr-gonzalez.com/ . this looks great on paper but -- I couldn't handle the pancreatic enzymes! They created so much toxic sludge in my system that it overwhelmed my liver and other detox organs, and I got mind-numbingly depressed. It didn't improve even with some uber-detox ideas I got from a practitioner in Idaho, and with a second try in May.

March - June
In January I saw Dr. Michael Schacter (http://www.mbschachter.com/) speak at an alternative medicine conference, and was quite impressed with his approach. I visited his offices in March and he prescribed a great and well-researched mix of supplements, vitamin C infusions, diet and exercise. (I have the spreadsheet of all the supplements I was taking, let me know if you would like it). the combination of this regimen plus daily coffee enemas (to de-toxify my system) worked fairly well. Downside -- it would have cost $3000 per month to do everything that Dr. Schacter had recommended! I also didn't want to be dependent on taking so many supplments long-term.

July - present
In July I discovered the Mt. Diablo Wellness Institute and their ayurvedic regimens. They start with a set of cleansing rituals -- "panchakarma" -- to bring your system to a baseline, and then develop an individualized regimen based on your body constitution. This regimen includes meditation, yoga, and a number of herbal supplements. I'm starting the panchakarma cleansing in a couple of weeks, which will supplement any other treatment regimen that I decide I might need.

I already feel a lot stronger on this therapy, and I am daily thankful for the change in orientation from both standard and alternative medical practices: the emphasis is on creating your health, and knowing that the body naturally wants to regain its balance. In such an environment, the cancer is unwelcome (both physically, mentally and spiritually) and decreases in course.

Because of this change in orientation, the treatment is necessarily more oriented toward the mid- to long-term than the others that I've been doing. If I need to do a short-term intervention, I'll do it but will return to ayurveda for my long-term approach.

Links to the programs at the Mt. Diablo Wellness Institute:

http://www.mdiwellness.com/panchkarma.shtml
http://www.mdiwellness.com/preshka.shtml

Life update!

Since so much has transpired since I last wrote or updated my blog, I thought it would be a good time to say hello again!

(I've put all the details of the treatments I've been taking in a separate post if you're interested. That way the narrative flows unimpeded by science!)

By late May, I knew that I had to change something drastically with my situation in Austin. My treatment regimen was running upwards of $2500 per month, and my 3-day a week job was paying much less than that. Fortunately, at just that moment, my friend Heather told me about a well-paying temp job at UC Berkeley that I could hop into if I came out quickly -- so I did! Liz was wonderfully supportive of my move, and my employers at UT were incredibly gracious about letting me leave with only one day's notice. The job at UC Berkeley has worked out great and I am still there. (Most amazingly, it also offered fabulous health benefits!) The people are nice to work with, the workload isn't stressful, and I've been pleasantly surprised to find that I can handle a normal 40-hour week. My energy is still up and down depending on the day, but I have overall been feeling great.

With the job in place, I started to piece together a life here in Berkeley. Liz came out for a month and was an unbelievable help. She found us a sublet right in downtown Berkeley with her old friends the Schneiders, and we had a great time living in their third-floor loft space. I've lived in the Bay Area for years, and Liz grew up in San Jose, so the terrain was familiar to us. We enjoyed discovering the delights of Berkeley and the East Bay, and the unmatchable diversity of California plants and flowers. After looking at several apartments, Liz and I finally signed a lease two weeks ago for a beautiful place in an old Victorian in South Berkeley. It's just a few blocks from the BART train, shopping, and the meditation ashram we go to.

My health has been pretty good for most of the time out here. Last month I had the great good fortune of discovering a Center for ayurvedic healing in the area, and am currently on a treatment regimen that I can sustain financially and will carry me through the long term. (details in the next post) Through this program I am already feeling a lot stronger and more confident.

Although my PSA had been rising somewhat, my semi-annual bone scan in July showed that my bone metastases were stable or smaller than they had been in January. The oncologist (Dr. Swift) wanted to check out a few details and did so with an x-ray this Monday. Unfortunately, it showed a large ("ping-pong ball sized") growth on top of my right femur, and several smaller spots in my mid-pelvis. Although this is troubling, Dr. Swift says I'm in no current danger of fracture and will keep an eye on things. My monthly Zometa infusions will help to keep this from growing quickly. To be honest, I had seen this coming a few weeks previously. When the bone metastases start growing, they dump a huge amount of excess calcium into my system (hypercalcemia), which I have been experiencing as really unbelievable constipation. I also "threw out my hip" for a week and found it difficult to walk -- which I now recognize as a symptom of the growth on my femur. (walking is perfectly fine now, tho -- I can still feel that "something" is going on, but it's in the background.)

Although I am hardly excited by this news, I'm maintaining a pretty even keel about it. It certainly has my attention, and I'm looking for a way to accelerate my ayurvedic treatment so that its effect will kick in sooner than planned. I also am evaluating all of my "Plan B" treatments (pancreatic enzymes, mega-supplements, and immunotherapy in Germany) to activate them at the appropriate time. I will definitely keep you all posted!

I am so grateful for all of the good wishes that you all have sent. I am also grateful beyond words for all of the amazing support from Liz -- she has been a real trouper through all of this, and has not had an easy time of it. She is back in Austin now disassembling our previous apartment, and working on paintings for her new show "Big Heads" that will be at the Bay Six Gallery in October. You can see some of her great recent work at www.lizpenniman.com, or send her words of support at lizpenniman AT yahoo dot com. I also want to send a big thank you to Heather and Michael and Philip, and everyone else who has helped us out along the way -- thank you!

lots of love and best wishes for all of your endeavors!

Tale of Two Graphs

I just got my latest PSA score, and it's 9.4. Not good at all, and it's headed in the wrong direction (it was 7.8 last month.) "Normal" scores are below 4 (some people like them to be even lower), and anything above 10 is bad, bad, bad. Astronomical scores in the hundreds like I had last year are an indication that the cancer is metastasizing and out of control.

To get some perspective on where I stand, I decided to make two graphs of my PSA. (you can click on the pictures below to enlarge them) The first graph is every PSA reading since I was first diagnosed last July -- and it shows the remarkable plunge in my PSA score since starting both my supplement therapy in August and my treatment with Dr. Thaller in September.

The 2nd graph is a close-up of every PSA reading since last August. This is the territory I need to manage, and I really want to stay below 10 on the chart.

What this tells me is that I need to make some adjustments in my treatment -- I'm not currently doing enough to battle the cancer. More on the specifics of what I have in mind in a subsequent post.

New Treatment Regimen

It took a while, but I've sifted out the new information I got at the Schacter Center, and combined it with what I want to keep from the previous enzyme therapy and other supplements.

What I'm doing: I'm still on a diet, detox and supplement therapy. My goal is to heal myself while I'm maintaining as normal a life as possible, and within our current financial constraints.

diet: a low-glycemic diet, alkalizing  with no sugar, white flour, white rice, dairy or soy.  No meat except for salmon a couple of times a week.  No coffee or alcohol.  No fruits except for berries.  Lots of vegetables in salads and  juices and wherever else I can get them.  A 14-grain raw mush (soaked in apple juice) every morning, and as much raw food as I can get.  Organic everything to avoid toxic chemicals.

detox: coffee enemas and saunas at least once each day.  Skin brushing and lots of (reverse-osmosis-filtered) water. Avoid aluminum and teflon cookware, filter on shower head, exercise and meditation every day. Monthly liver or intestinal cleanses.

supplements: a core of general vitamins and minerals, with a number of specific prostate cancer-fighting compounds (details in a separate post):

○ pancreas enzymes (as much as system will tolerate)

○ Pao V FM

○ Myomin

○ PeakImmune 4

○ ProstaSol

○ Curcumin

○ Five Mushroom extract

○ Avemar

○ modified citrus pectin

The hardest part of moving to this regimen wasn't researching and choosing the specifics (that's the fun part!)  It was finding the courage to leave behind the complete therapy package that Pamela had prescribed for me.  This was just as hard as it was to leave behind Herr Dr. Thaller's treatment regimen a few months ago.  I battle feelings that I'm doing the wrong thing, that I'm risking my life based on my layperson's knowledge, etc. etc. -- but in the final analysis, the lesson from this process has been consistent: I have to be the director of my own treatment.  I have to trust my own body, my own intuition, my own judgment -- no one else can do it for me.