uh-oh, problems are advancing

I had a visit with Dr. Sunkara's team today, and it reinforced my sense of urgency to find (and start!) another treatment plan very soon.

My PSA has jumped to 659. That doesn't have an impact on me by itself -- it just means I have a lot of cancer floating around my system. What worries me is my low (and dropping) red blood cell and platelet counts. I'm coming in to the doctor's office to have them tested every week or so; when they drop below a specified level, I'll need to get a blood transfusion to boost my red blood cells. This will actually be great, as I am starting to feel very weak in the afternoons because of the anemia.

I definitely want my next treatment to get started before I get stuck in some hospital hooked up to a machine. As long as I'm ambulatory and independent, there are things I can do to put the cancer in check.

oh great, another personal record

(click to enlarge)

OK, in today's "DO NOT LIKE" department, I just got results from my latest PSA test, and it's a sky-high 410. Let's see, that's over 40 times the accepted "danger" level for a PSA reading. The little cancer cells are going crazy. Fortunately, the cavalry is riding in this weekend with various immunotherapy injections and sodium bicarbonate IVs. (more details on that when I know them).

I'm also applying to a trial of an experimental drug called abiraterone that's being administered at M.D. Anderson in Houston. I don't know if I'll be accepted, but I fit all of their criteria.

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.

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".

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.

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!

Researching the Next Step

OK, now that the last visit to the PraxisKlinik is under my belt, I can turn to the question at hand: what's the best way to continue my treatment going forward?

One option is to continue the visits to Dr. Thaller every 6 weeks or so. The three treatments I'll continue with would be the fevertherapy, the Newcastle Disease Virus injections, and the Dendritic Cell injections. (Alongside these there are the additional treatments of vitamin C and ozone infusions, and local hyperthermia).

Liz and I have 20 vials of the virus with us here in the States, so the injections with those will continue through January in any case.

A second option is to work with Dr. Pfeifer at the Aeskulap Klinik in Switzerland. He has a very interesting-sounding protocol for prostate cancer, which consists of high dosages of four different supplements. (I've already started taking one of these -- ProstaSol -- and my PSA went down by over 50% in one month! )

The third option is to go with the enzyme therapy that Dr. Gonzalez is known for. This is an intensive self-care program consisting of supplements (mainly pancreas enzymes), a strict diet, and detoxification procedures. I'm strangely drawn to this path, as it is a way that 1) I can take responsibility for controlling my own health, and 2) is something that I can maintain over the long term, as I manage this cancer as a chronic condition. (I don't imagine that there will be a sudden cure for what I have, and the costs of Thaller's treatment -- around $15,000 a visit -- make it extremely hard to envision continuing to do it over the long term!)

In any case, I'm going to be getting some help in sorting these issues out -- I'll be doing another phone consultation next week with Dr. Ralph Moss, the über-researcher that keeps his finger on the pulse of all the new cancer therapies that are being tried.

PSA down

Good news today when I retrieved my PSA score -- it was down to 2.2 on October 30th. (compared to 4.2 on October 5th).

This is really good news for a couple of reasons. Most obviously and simply -- the PSA is down, which is always the goal. This is actually the lowest it's been since I was diagnosed in July.

The other bit of good news is that the only change in my therapy between October 5th and October 30th was that I started taking ProstaSol. (In fact, my hormone blockage therapy was wearing off between those two dates, and I didn't get my next shot until October 31st. So I wouldn't have been surprised if my PSA had gone *up* instead!)

This means that I can pretty clearly attribute an almost 50% drop in my PSA to the ProstaSol. For now, it is *definitely* staying on my supplement list -- even though I have to order it from the Netherlands!

Last Day in Markt Berolzheim

I had one last intense fever therapy session today. The shivering was intense (over 30 minutes!), and the fever got up to 104.4°. Also local hyperthermia on my scapula.

Kristina packed up the supplies we'll need to continue injections of the Newcastle Disease Virus until we return to the PraxisKlinik in six weeks. Tanya and Kristina and I had a long "conversation" (them in German, me in English) about my flight times and the time difference with Texas to determine if we had enough dry ice to protect the virus for the whole trip. It doesn't seem like it will be a problem.

Then came "die Rechnung", the bill for the past two weeks. Because of the start of the dendritic cell therapy, this will be our most expensive trip here: the total was $24,887. Yow! Liz wryly noted that this would be a down payment on an apartment in the South Bronx…but then, I'd still have cancer, and I'd be stuck in the South Bronx!

All in all a really great trip. Herr Doktor Thaller gave me the highlights of my laboratory results from this week: my liver functions have *dramatically* improved since the last visit. And my PSA is down to 4.2, less than half of what it was the previous visit. Yippee!!