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

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.

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.)

Eek, symptoms!!

Ever since I got the first shot in my hormone blockage therapy a few months ago, I've been relatively symptom-free. This is a wonderful thing -- the symptoms I was experiencing in July were *awful* -- real difficulty in peeing, unearthly constipation -- all kinds of wonderful dinnertime topics.

The shots (which go under various names -- I've had Eligard and Trelstar) -- last for about three months. Because of traveling to Germany, I hadn't been able to schedule my 2nd shot until this week. Since I was a few weeks behind, I started to notice the gradual reappearance of -- eek, *symptoms*!

It wasn't bad -- a slight difficulty in peeing and slight constipation -- but it was enough to bring me up with a start and remind me that the cancer wasn't just some abstract entity. It's a real, creeping thing in my system, and unless I find a way to destroy it by the time the hormone blockage runs out, I'm in a heap of trouble.

Fortunately, the Trelstar shot* has calmed down the symptoms. And I'm confident that the treatments I'm seeking will really do a number on the cancer that's remaining. But it was definitely a wake-up call to feel what the effects of cancer can be.

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* a few weeks ago, I mentioned that I would be substituting the supplement ProstaSol for the hormone blockage therapy. It turns out I received bad information -- the doctor who came up with the ProstaSol protocol recommends staying on hormone blockage therapy while taking ProstaSol. So I'm taking his advice.

Back Home Again...Sheesh!

Today I go for my monthly visit to Lone Star Oncology, where I get an IV drip of Zometa (a bisphosphonate that will strengthen my bones, which are weakened both by the metastasizing prostate cancer, and the hormone therapy that I'm on).

I also talk with Dr. Shimkus about the results from my CT scan last month. (amazingly, just like with my bone scan a couple of months ago, there are *no visuals* provided with this scan -- even though the test itself consists of taking a picture! All that's provided is a very technical description of the my internal situation, which someone has painstakingly constructed from the picture itself. The visual scan (which would clearly show how serious a pattern of cancer is, and already exists in a file somewhere) would be an extra charge! My doctor in Germany is astounded at this practice and considers it unethical.)

Dr. Shimkus appears to be a bit surprised that I am going to change my hormone therapy by substituting the herbal compound Prostasol* for the Eligard shot that I am due to receive again this month. He gently tries to dissuade me from making the switch, but I am insistent (it will have fewer side effects -- specifically, less night sweating).

I ask a few more questions of him (such as, are there any therapies that I should be considering that I'm not on now?), and at some point after our meeting passes the 15-minute point, he appears to become a little impatient and tells me point blank: "You know, you are *always* going to be dealing with these bone metastases."

I'm slightly taken aback by this, but it isn't until later that I process what he was trying to convey to me: "hey, you've got inoperable cancer, there's nothing we can do about it -- get used to it!!"

Now don't get me wrong, I'm not in denial: I know I've got very serious advanced metastatic prostate cancer, and "statistically" my prognosis is poor. But I also know that there are *many* examples of people who have gone into remission from where I stand, and that there are also many fruitful lines of treatment that lie completely outside what the official "statistics" measure. So I refuse to be categorized by any kind of "get used to it!" diagnosis.

Even beyond this, the reason I get angry at attitudes like this is that there's simply no need for doctors to discourage their patients with this kind of framing. Take the example of Dr. Thaller: his stated *intention* to me is that "the tumor must vanish!" He of course gives me the necessary caveats that he can guarantee no such thing. But I walk away from that conversation with confidence, and a knowledge that my caregiver is fighting for me.

Conversely, when someone tells me to "get used to it", I'm discouraged, and it tells me only that my doctor wants to *manage* me. It honestly takes me four or five days to readjust my attitude after this encounter.

Sadly, I see this attitude everywhere in the States. Even the billboards for Proposition 15 (a Lance Armstrong-backed cancer research initiative) feature a bald cancer patient. That doesn't tell me that "we intend to cure cancer" -- that tells me that "all cancer patients look like death warmed over because we give them chemotherapy."

Don't vote for Proposition 15 -- it will just give more money to the same pharmaceutical and insurance giants that already poison people with chemotherapy and radiation.

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* I'll be taking the Dutch version of Prostasol -- the American version was found to be tainted with estrogen.