Barbara's Austin Report #2

Yesterday Friday August 8th was the key meeting at Stanford. The meeting which I somehow had the belief would be a 45 minute doctor interview beginning at 10:30am instead was an intense series of meetings with doctor and support specialists beginning at 11:30 and ending only shortly before 5pm. Afterwards all of us had a lot to think about.

We met with a social worker first whose job was obviously to screen incoming patients psychologically, evaluate their support network, get a picture of their lifestyle, and establish their financial condition. Jen and I left when the SW began probing into Austin's emotional makeup. I did not get the impression that she was particularly subtle or gentle with her probing.

The doctor is an Asst prof Med., a slight, Japanese-American woman. (I knew the name Arai was Japanese because of the popular Japanese singer Yumi Arai; I made an offhand comment about Yumi Arai and the doctor did not recognize the name, proving that she had not lived in Japan for any significant time, therefore she must be American born.) She is a asst. professor of medicine at Stanford as well as being a clinical physician. She gave us about an hour and a half, amazingly generous I thought, and every second was a dense flow of data.

Her explanation of the process was detailed. The auto-HSCT process is long, dangerous, difficult and complex. My overriding concern was the nature of the radiation treatments which had proven so effective at NWU. She made it clear that radiation played no part in the pre-BMT process at Stanford. I gave her the key journal article and her eyes first identified the group who were the authors, ("Ah yes, this group... I know them...") then looked at the chemo induction process in great detail. Her first comments were to simply say that Stanford did not use
radiation like this, commenting "This is a variation based on an older method...". But I pressed her a bit for more. She stumbled a bit when coming up with equivalent percentages but was willing to match NWU's excellent 83% 5-year EFS with Stanford's 80%. She added that with younger patients like Austin the OS (overall survival - includes a few patients with a successfully treated relapse or non-progressing disease) was perhaps 90%. That is quite excellent. Still, I worried that for
bulky patients like Austin the radiation might be necessary to get maximum tumor shrinkage. I was impressed that in a matter of moments she had located the chemo agents in the study and could tell me that the NWU group was forced to omit some chemicals because of the radiation, and she stressed that Stanford was able to use them because there was no radiation to interact. So, the tradeoff was less radiation for stronger chemo. Austin later asked for my opinion. Does his bulky tumor swing the advantage to NWU's method? I had to admit that I could not really
judge it with any confidence. The tradeoffs are too complicated for me. But I feel that the difference, if any, is small, perhaps tiny. The doctor stated that the mortality in the BMT at Stanford is less than 3%. That is the lowest I have seen claimed for any hospital. ("Good" is anything under 5%, some facilities are higher. When the procedure was new it was a frightening 15%.) She implied that for a young patient it might be even lower. So what do I tell Austin? I cannot see a clear
advantage in going to NWU. That is not to say that I cannot imagine an advantage. But the stature of Stanford is so high that more than imagining is needed. Dr. Irwin declared that Stanford is the best hospital in the world for lymphoma. I can also imagine a disadvantage for NWU, with dispersed radiation toxicity which could have been avoided. The exchange is... the possibility of increased longterm
radiation toxicity as payment for the possibility of more certain complete remission. Or conversely, with Stanford, the possibility of small lingering tumor mass at the time of BMT as payment for the possibility of lower clinical risk and fewer longterm secondary risks overall. This is what I imagine, but again, the doctorprovided suitable trade-offs for all NWU advantages. One can make a case either way. One can also argue that neither method is a mistake. If there is a
difference in overall success, it is small. I had been afraid that Stanford might be getting a 65% success rate to compare against NWU's 83%, but that is not the case. And NWU's figure was obtained with only 12 patients. The progenitor study for TLI in New York was about 80% in 1993. Stanford might argue the two methods are similar in success rate, but NWU unnecessarily risks some radiation toxicity. In my mind, perhaps the scale tilts slightly in Stanford's favor, or perhaps it is about
equal, but what matters most is Austin's feelings. He is happy with the Stanford treatment, so that is our path.

I must praise Stanford's program. The 5+ hours of meeting, talking, and planning were a masterpiece of patient interaction. Other hospitals might have called us back over and over to meet with a different person each time, but Stanford had arranged it so that it could be done in one day. This is undoubtedly in recognition of the distances traveled by some patients for lymphoma treatment, even halfway around the world I would guess. A massive 3-ring binder with staggering detail, a liason nurse who is preparing a complete calendar, a set of REQUIRED instructional courses for Austin's caregivers... it is awe-inspiring. This is a hospital which must surely be a model for others.

I liked that the doctor wanted to keep the journal article. Also, during a list of chemo agents, she mentioned Carmustine and I said "Is that a mustard derivative?" and Austin jumped in, "Yes, but it is a synthetic version...". The doctor was surprised and said, "You HAVE done a lot of reading..."