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!

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.

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!