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.

Great Visit to Schacter Center

I'm just back from an excellent visit to the Schacter Center in New York.

I met Dr. Michael Schacter at the Complementary and Alternative Medicine conference this January, and I was impressed with his approach and his enthusiastic, ecumenical research into different alternative cancer treatments. I also had a chance to speak with him personally, and he not only knew about the kind of treatments I was getting in Germany, but offered some great additional suggestions that were specific to my situation.

So I went back for the whole enchilada. His staff interviewed me extensively, put me through a battery of tests, and gave me some nutritional counseling (it turns out I'm already pretty much on track with the diet I'm following for the enzyme therapy.)

The Bad News

On the second day, I had a private consultation with Dr. Schacter, and we reviewed some of the results from the tests I'd taken the previous day. My PSA was 11.4 -- yow! That's almost double the 5.8 figure that it was 3 weeks ago - and the 5.8 was more than double the 2.6 reading of the previous month. Doubling my PSA two months in a row is *not* a good situation, so I definitely need to keep on the ball with my treatments.

The Good News

That's it for the bad news -- the rest of the visit was a really wonderful education about treatments that I can fit into my own regimen. I received all of the following:

• supplement review

Fortunately it looks like I'm already taking most of what Dr. Schacter would recommend. Both he and Pamela highly recommend the ProstaSol and Avemar. I'm also going to start on Pao V FM (one of the Beljanski remedies that helped keep President Mitterand of France alive for years when he was secretly battling metastatic prostate cancer.) Also I'll be starting to take iodine and iodides -- the Japanese diet has an average dose of iodine that is 12,000 times our recommended daily dose…and they have almost no breast cancer!

I'm also going to be taking amygdalin tablets (laetrile), and I'll be checking out the supplements in Dr. Chi's Cancer Program -- Dr. Schacter is very enthusiastic about the effect of both of these supplement regimens on prostate cancer.

• treatment review

The big question for me this week was: how should I modify my treatment -- if at all?? I've been having awful depression and energy problems with Pamela's version of the enzyme therapy, and put this to Dr. Schacter for his opinion. He was marvelously impartial, and really put the decision back to me, with the assurance that everything I've already been doing is right on track. (I'll write more about the treatment choice in a later post.)

• Vitamin C infusions

This is a mainstay at the Schacter Center -- and Dr. Thaller in Germany used them too. The basic principle is that you lure in the cancer cells with glucose (they love it!), and then explode them from the inside out with megadoses of Vitamin C (they hate it!) I got infusions for four days here, and I'll be continuing them in Austin.

• Colorpuncture

This treatment uses a series of colored penlights (as well as traditional needles) on acupuncture points relevant to my condition. It piggybacks on recent developments that show how direct application of light to tumors has a healing effect. Instead of routing fiber optic tubes directly to the tumors as in those experiments, colorpuncture achieves similar results by treating the acupuncture points that correspond to the tumor area.

I also got a Heart Rate Variability test, which measures how quickly and effectively my system responds to stress. The doctor liked the result I got -- he said it shows that there's a lot of "oomph" left in my system to combat the disease. According to this test, at this point the cancer isn't anything more than an annoyance to my system -- it isn't like it's lumbering along underneath an impossible weight.

• Mind-Body Therapy

Serendipity sent me to the most interesting part of visit to the Center. While I was getting a Vitamin C infusion, I was talking about my treatment history with one of the nurses. "Oh my God," she gasped, " you haven't seen Dr. Reznik? Our mind-body guy?? Hang on, I'll see if he has any time available this afternoon!"

Dr. Reznik uses a combination of guided imagery, dreamwork, and other mental trainings to help visualize a positive outcome. I ended up taking an all-day seminar with him on Sunday, and came home with an extensive set of tools to work with -- I am noticing a marked change in my attitude already! I'll be meeting with Dr. Reznik via Skype next week and am looking forward to it!

The Shot

OK, I went into Lone Star Oncology for my 3-month Trelstar shot today.

No big deal. I drop my drawers and the nurse injects it into my bottom and I'm on my way, with only a tiny amount of residual soreness.

I will admit to being a little wistful, though. I had previously been on hormone blockage from last July until this January, when Dr. Shimkus took me off of it because my PSA was so low, down to 1.6. This was a direct result of my combined immune treatment therapy with Dr. Thaller in Germany (OR my custom supplement therapy, OR a combination of the two!)

So being back on the blockage means that things are a bit more serious again.

But it also means another 3 (and probably 6) months without testosterone. And that means no sex. No erections, no nothin', zip, nada. It took me a month to regain my sexual function after going off of the hormone blockage in January…which works out to just a couple of weeks ago. So I get a little bit of tease of what life was like before the hormone blockage therapy, and then back on the wagon.

I have to say, it isn't the sex that I miss so much, though I do. My girlfriend Liz has been fabulously, over-the-top, beyond-the-call-of-duty patient. But even though it's a big part, that is indeed just a part of what I miss.

Strangely (surprisingly!) it's my whole point of view that seems slightly off-kilter. When my testosterone kicked in again last month, I noticed I had a little bit more verve, it was more fun being out and about ("hey, look, half the world is female!")

Oh well, it wasn't like I was a *complete* glump for the last six months -- as drug therapies go, this one feels pretty tame. And the alternatives are definitely deplorable! So here I go again, wish me luck.

Dang!

I just got a call from Dr. Shimkus' office (my oncologist). I have to come in *tomorrow* for another hormone blockage shot (Trelstar) -- my PSA has gone up to 5.8.

Dang, dang, dang!

Last month it was 2.6. Dr. Shimkus said I would need to go back on the Trelstar if my PSA rose above 4.0. This is much higher than that.

Another important measure of prostate cancer is "doubling time" -- that is, how long it takes for your PSA to double. In my case my PSA *more* than doubled in just 1 month -- not a very good sign. The increased PSA is a direct indication that there's increased cancer activity in my prostate. (And especially given my recent widespread bone metastases, it might extend even further than that, although I'm fervently hoping that this isn't the case!)

In the larger scheme of things, a 5.8 PSA is still manageable -- doctors often tell their patients not to worry too much until it gets over 10. And after all, in the first couple of months that I was diagnosed, my PSA was as high as 222.

But still.

Dang.

Whew, Wow, Whoa!!

I've been on the enzyme therapy for a month now. (details in the previous post and another post, probably for tomorrow, on the day-to-day specifics.)

It certainly has meant taking a lot more responsibility for my care: instead of going for treatments once every six weeks or so, I spend several hours each day poking and dosing and feeding myself the right thing so that the therapy lopes along.

All of the research reports on the results of this therapy are excellent, and my nutrition coach, Pamela, has been fabulous in supporting me. She and I have spent a lot of time on the phone together, and she patiently answers every one of my questions about dosage and timing and procedure.

(You can feel a "But" coming, can't you??)

But holy cow -- these supplements are intense!!!

Every time I take one of the larger doses, I get completely spaced out and a little bit queasy for the next couple of hours -- I can tell that my body is spending a lot of energy to process what I'm putting into it.

That's nothing, though, compared to the depression that I've been feeling. Several times a week I am seriously hammered by intense sadness. Several times a week I find myself in tears at inconvenient moments for no particular reason. (or for some normal here's-what-life-throws-us-all reason, but I let it completely get to me and incapacitate me.) I'm a zillion miles behind on just about everything in my life, and in contacting just about everyone I should be getting in touch with. (so to all of my friends out there, hello, I haven't forgotten about you, I still love you!)

It's not the supplements in and of themselves. I've been taking over 120 supplements per day since last August, and the enzyme therapy has me on about the same amount now -- and there's a lot of overlap in the substances that I'm taking.

I've hesitated to write about the depression, because I wasn't quite sure what was happening. My dad died a couple of months ago, so of course I initially thought that I was sad about his passing. And every individual incident seems to have a perfectly reasonable proximate cause that I can pin it on. ("I can't believe that *X* did *Y*!!" etc. etc. etc.)

But what's happening is much more than that, or that, or any other one particular explanation. Something is going on here that is *intensely* depressing me, and I need to figure it out.

My initial suspicion is focused on the humongous dose of pancreatic enzymes that I'm taking every day. I asked Pamela about it and she said the depression is "normal" for patients on enzyme therapy; the body is going through an intense detoxification process, and great gobs of toxins are being thrown into my bloodstream.

OK, I suppose I find that to be a sensible explanation…but I also find it really tough to keep subjecting myself to this level of (perceived) emotional duress. I am going to keep investigating this, and try some tweaks to bring myself back into some kind of equilibrium. Any suggestions are most welcome!

A Day in the Life -- Part 1

Here's a quick outline of the procedure I go through every morning to keep things rolling for my enzyme treatment.

6:30am -- Turn on near-infrared sauna so it can warm up to 110 degrees.

Meditate for (at least) 20 minutes.

6:50am -- Take 5 chlorella tablets. Enter sauna for 20 minutes. (It's like a rotisserie -- I bake each side for 5 minutes, then rotate 90 degrees!)

7:15am -- take 2 tablespoons of post-sauna electrolytes.

Take AM supplements (20 tablets total, plus tinctures):

• aloe vera extract
• blue-green algae
• Cytozyme-THY (thymus gland extract)
• Immune System Activator (beta-glucan)
• Coriolus PSP
• 5 Mushroom Extract tincture
• Bach Flower remedy (Gentian, Rescue Remedy, Chestnut Bud, Scleranthus)
• Caprobiotics (probiotics)
• PanAlone (pancreatic enzymes)
• ProstaSol (herbal hormones -- see http://www.clearfeed.com/pfeifer/prostate-cancer.html )
• Prostabel (pao pereira + rauwolfia vomitoria extracts -- see http://www.beljanski.com/eng/beljanski.html)

7:25am -- start coffee enema (prepared the night before)

8:35am -- eat 14-grain raw cereal + fruit (prepared the night before)

9:15am -- take post-breakfast supplements (29 tablets total)

• Perque2 Life Guard (multivitamin + mineral)
• Perque Bone Guard (calcium + other minerals for bone supplementation)
• Strontium (for bones)
• gingko biloba
• Vitamin D3
• Vitamin C
• alpha lipoic acid
• Master Amino Acid Pattern
• Omega-3
• Montiff Liver Protec (silymarin + d-alpha tocopheryl succinate + quercitin)
• PanAlone (pancreatic enzymes)

…and that's it for the morning! I'm ready to head off to work for a few hours.

(procedure to be continued!)

Treatment Update

Hi everyone -- I'm still here! Things are going well -- I'm starting the second month of my pancreatic enzyme treatment, my last PSA reading was below 3, and I feel great most days.

This has been a *very* wild month -- the pancreatic enzyme treatment is turning out to be much more difficult than I thought. Parts of it are easy and parts are definitely not. In the next post I'll give a sketch of what the treatment looks like on a daily basis. (As my nutrition coach, Pamela, says: "it's a full-time job!")

I just wanted to check in and wish all of you a happy Texas Independence Day (March 2nd) Enjoy!

On the Right Track!

Good news from the oncologist today. My bone scan from a couple of weeks ago came back, and most of the bone metastases have retreated considerably! My normally reserved oncologist broke into a rare use of positive phrases: "it's remarkable -- we almost never see the metastases diminish."

Also, at the end of December my PSA had declined again, to 1.6 (*almost* normal!)

Apparently most of the time, the "standard" treatment I'm on (the hormone blockage therapy that zeroes out my testosterone) merely slows the metastases down. (Or in the best case, brings it to a halt). The bone scan instead shows that the spots have almost disappeared -- the doctor says that some of what's left is evidence of arthritis rather than cancer (I'll take that choice any day!)

This confirms what the technician said a couple of weeks ago when she printed out the film of my scan and exclaimed -- 'wow, we never see that happen!"

Apparently all the effort (and expense) that we went to to get to Germany for the treatments by Dr. Thaller have paid off handsomely -- what he did had an amazing effect! Thanks to all of you who contributed for making this possible!

Now comes the hard part, which is keeping these gains intact, and continuing to work on the cancer that remains. Today is the start of my enzyme therapy treatment, which is a *lot* more labor-intensive, but reportedly very effective! (More on that in a later post.)