5/7/2002
Subject: Ann cancer update - starting at UCSF tomorrow
From: Brian Bulkowski
To: AVS Cancer list

Greetings folks,

(Again, please forward as necessary, and tell me who else should be on this list)

It's been a quiet few days here, after the blizzard of data and diagnosis of last week. Construction continues next door, and we've only got two firm leads on our next step for housing.

Tomorrow at 9am we've got our first meeting with Dr. Prados. All paths lead to him for the best treatment in our area, although several other UCSF neuro-oncologists commonly come near the top of the heap, such as Dr. Shirley Chang. Carl Simon is back in the area, complete with a 150 page three ring binder of information about GBM. Through his research, only Duke and UCLA are in the same rank as UCSF. We've carefully gone over a few of Dr. Prados' less technical publications, and we're impressed with his communication abilities, and his outlook. He is not a fan of the common, garden variety approaches, and speaks particularly poorly about the most common chemo agent, BCNU.

There are a number of approaches that Dr. Prados thinks well of. One is brachytherapy, which involves implants (chemical and radiological, there are several sorts) during removal of tumor tissue. The Alta-Bates neurosurgeon was unwilling to do surgery, but reading carefully there seem to be better surgical technologies available (such as stereotaxic surgery, done by computer similar to the biopsy Ann got). Similar in concept is Gene Therapy, where modified retro-viruses are placed into the whole where the tumor was (pioneered at UCSF). Also of interest is fractional radiotherapy, where the patient gets radiation throughout the day, instead of once in a day, and anti-angiogenesis treatments. There are many possibilities, and we need an expert to sort it out.

As I mentioned before, there's still some question about 3 vs. 1 tumor bodies. There are techniques - some pioneered at UCSF - to make this distinction, and Prados' arcticle points out the importance of knowing which case we're in. PET scans have also been used in these cases. That's near the top of our discussion list with him.

Doing this research has its highs and lows. GBM is tenacious, and has defence & regrowth mechanisms that other tumors don't have. Yet, the three factors that Dr. Prados identified as the most import to good outcome are: the age of the patient, the Karnofsky rating, and tumor type. Ann is nearly 20 years under the median age for this tumor, which is very promising. The Karnofsky scale is how impared one is by the tumor, from 0 to 10. Ann is about a 9.5 - very high. These are promising signs, even if the tumor type is deeply against us.

We've been moving forward on other treatment areas, as well. Ann had her first Biofeedback session, which helps you meditate (thus clinically reducing stress hormones) through tones and colors. She liked it, did well, and came out more radiant than I've seen her in years. We'll probably continue that once a week. We had an informational session about Trancendental Meditation, which we might continue even though it has strange cult-like elements.

Our two main other areas are diet and herbs, which we've just started delving into. Work on that section is just starting, as we've needed to focus on this Wedsnesday appointment. We've got a few diet resources going, but could use a few more opinions. General thrust is low fat, high selenium, high vitimin E, B complex is tough -- depends on cancer type, and the whole Pauling Vitimin C controversy which hasn't been fully resolved.

This morning, I skimmed Michael Lerner's "Choices in Healing", which seems a little dated now (1996) but does a great job of covering different treatment modes in cancer. Particularly interesting was the section about different national theories, and how France, Germany, the UK, the US, and Japan all have different treatment regiemes (and there are no cross-correlated studies about relative effectiveness). The book is not specific to brain tumors or GBM, but I thought it was a good read. However, I would say that it's comments on western therapy are so many years out of date (focusing on standard beam radiation and BCNU) that they don't apply to the treatment we'll get.

Ann continues to be in good spirits and high function, which is a great blessing. Last night we got a tofu cheese, pesto, mushroom, onion pizza and watched Shrek, while the night before we went out to the marina and watched the sun set over the golden gate. She wrote a bit of poetry last night, too. We need to make use of these days, find a little calm moment occasionally, as well as struggle for survival.

It's hard to state how much the outpouring of love and concern means to me and Ann. The calls, emails, cards, and other notes of support help us in those hard moments when it all seems too much. For me, doing the technical research has been especially hard, as I have to be aware of the technologies and help choose the treatments, yet can't be infected by the grim outlook. Ann says that she physically feels the love being showered on us, and it has touched her deeply. No matter what happens, you have changed her life.

infinite love,
-brianb