5/30/2002
Subject: AVS update - "remarkable"!
From: Brian Bulkowski
To: Ann Cancer List

Hi Folks,

This is the first bit of good news we've been able to distribute in a while.

We had a scan two days ago - Tuesday the 30th - and the treatments are working! The main body tumor is significantly reduced, down to about 2.5 cm in length from about 5cm in length (similar reduction in width) two weeks ago. The largest area of secondary tumor (right front, on the ventricle, about the same height) is also significantly reduced. That one was more diffuse, and doesn't really have a body to measure. This is outstanding for just two weeks of treatment! We were hoping for stabilization, or reduced growth. Reduction is amazing!

This is our third scan, each scan about 2 weeks apart. This is *highly* unusual. Most patients get one scan for the diagnosis, and then a scan after 6 weeks of radiation treatment (about 8 weeks total). As the resident said, "Normally, if we did this, the insurance company would shoot us", and Carl said "I'll stand in front of you". This is a side benefit of the UCSF research program we're in - the scans are free. We know the tumors were growing at about a normal rate for the two weeks between first diagnosis and treatment, and shrunk dramatically between start of treatment and now. With most patients, one doesn't know which parts of the treatment had the most effect.

The mixed news is that the "microtumor" sites (left frontal lobe and cerebellum) are roughly unchanged. However, they didn't seem to grow much in the two weeks without treatment, either. Unfortunately, the Spectroscopy part of the MRS doesn't work on the edges of the brain, so we don't have that data for those areas that would help us differentiate between swelling and tumor. Dr. Larson thinks microtumor, probably because swelling would be down by now as an effect of the steroids. If those areas are slow growing or non-growing, then the radiation & chemo won't effect them as well. The MRS isn't showing other areas in the mid-brain of extra tumor activity, which is good.

Talking to Dr. Larson was amusing. We like him quite a lot. He has been out of the country for a few weeks (Prague and Berlin), so we hadn't seen him for a while. I was worried that we wouldn't see him, and kept asking for an appointment. "You're being treated -- you'll run into him", everyone kept saying. Finally I gave up, and figured we would just run into him. So there we were, tuesday morning, come out of radiation treatment, and Dr. Larson is walking across the parking lot, so we all stop and chat. There was a question about exactly what kind of scan, so we resolved that, and he said to page him in the evening when the scan was done, so he knew when to come in and look at it. The scan ran late, and when walking out of the scanning institute, we saw him again, walking down the street. We waved, he came over, and ran into to take a quick look at the scan, leaving us sitting on a bench inside the UCSF parking lot, rather silent and very, very nervous. He reappeared 15 minutes later, and was hard to read. He said he didn't want to talk there, so we went out to the curb, and stood around the fire hydrant, as he sketched the details, and told us the good news. Not exactly the normal hospital experience!

He called the response "remarkable", and whatever we're doing, we should keep on doing it. This is the kind of result you hope for, and rarely get. He sent out email to colleagues, telling them to pull up the scans, and see what can happen. The radiation guys called up to our other doctor, Dr. Prados, and asked in wonder what treatment this Ann Simon was getting that worked so well.

There was the hope that this "screwy tumor" would be unusually responsive to treatment, and that hope has come true. Of course we know Ann is remarkable, but hearing it in this context is ... well, beyond words. Dr. Larson's going to continue with the full brain radiation for another two weeks, take another scan, then focus the radiation on the remaining tumor sites. That'll give us 4000 centiGrays of full brain. The standard treatment limit is 60000 over the whole brain, but everyone has said that the long-term side effects can be disastrous, so we appreciate his approach of a little less full-brain, and focusing as we know more.

In other treatment news, we're starting to ramp off the steroids. We're coming down to 12mg per day from 16mg per day, and have to keep watch for symptoms (like headaches) increasing. They plan to continue the Temodar past the period of radiation, especially as Ann's responding well to something. We've pushed Ann's biofeedback up to twice a week, since it seems to help her quite a lot. Ann's doing transcendental meditation this week, 2 hours a day every day, then once a week thereafter. It's similar to techniques she and I had been using, but the individual instruction is helping her.

We had a short meeting with Dr. Prados, who oversees the whole treatment path, and he looked tired and a bit distracted. It's a hard job he's got, dealing every minute with people in horrible situations. He's helping them, and helping us, but the emotional strain must be tremendous. He encouraged us to think about "aggressive" treatment not as aggressive to the body, but aggressive to the tumor. Treatments that are focused and effective won't be hard on the body. We shouldn't fall into the trap that medicine has to taste bad to work. It's an interesting perspective, but we were hoping to talk to him more about new stuff, like Celebrex and copper therapies, that have been in the news recently. His flip remark was "no positive data", which isn't exactly what the Celebrex drug company would have you believe. We have to do more thinking & research on that front.

The hair's almost gone. Ann's very excited. A certain amount of it (about 10%) is hanging in there, so we're planning on cutting it off -- and mine, and carl's -- in the next few days. I've got a black cowboy hat to wear in the interim, and Ann's got a little hat shopping to do. It's not that we're afraid of looking funny, but that we want weather protection, sun and wind.

Since we've hit this with everything we can think of, it's hard to say what's had the most effect. The radiation? The Temodar? The diet changes? The exercise? The various forms of meditation [love that tibetian bowl]? The prayer and great thoughts coming in from everywhere? Ann's extraordinary dedication? Some unusual synergistic effect?

We'll never know -- but know one thing -- **we can't stop**! It'll still in there, and GBM is tenacious. Every day is another fight. Even if we get a 100% clean scan, it could reactivate at any time. We have to be meaner and even more tenacious than that little bastard, and never forget. Ann and I are getting used to the roller coaster of more news, good and bad, every few weeks, and still don't know what the next scan might bring.

How was Hawai'i? GREAT! In some sense, there's little to tell. No horrible stories of delayed flights, bad food, terrible weather. We stayed at the Royal Hawaiian right on Waikiki beach, in the Historic wing, with an ocean view. We hung out on the beach, had two great dinners (Alan Wong's and Hiro's at the Mandarin Oriental), tripped out to the windward side (Kailua) to see their beaches and ocean kayaking, did a bit of tacky tourist shopping, just hung out in the atmosphere and rode around looking at the scenery. Nothing went wrong, everything went right, we felt relaxed and fabulous. I'm working on updating the web site, and pictures will be available soon.

Finally, the house. Everything's falling into place. We've got keys, and the phone and internet service is getting turned on today. We should be able to move in on the first, as planned, with a fabulous new bathroom. Getting all the addresses changed will be a royal hassle, but we can get to all the little guys over the coming months. We're looking forward to all the invites we'll send out to have folks visit over the summer.

That's about all for now. Our next scan is about two weeks from now, and not scheduled yet. I'll keep in touch though, updates with pictures and house news.

I'm certain that everyone's positive energy and Ann's great determination has helped in creating this excellent news. There's no way to thank you all that's not the most simple. Thank you. We promise to use our lives in the most focused, determined, good ways possible, every day.

infinite love,
-brianb