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.

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.

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

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!

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!