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.