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..."

Barbara's Austin Report

We are a bit behind with the updates.

The meeting with Dr. Irwin went well. The meeting started with him saying "The Hodgkin's is still there." He apologized for the week delay, but elaborated on what happened that week, with the difficulties in getting Stanford to commit to a treatment bed.

We immediately (of course) threw the study by NorthWestern University at him (figuratively, not literally). He recognized the TLI method, to his credit. His comment was that other centers don't seem to be going to the TLI method, despite the high success rate, and left it to us to draw our own conclusions as to why. It was not until after the meeting that I realized that the study had only been published in 2007, and phase 3 of the trial was not done yet (in fact I do not know if it is even underway yet) so the method, if it ends up being adopted by others, is still brand new. But - this turns out to be a question to be answered by Stanford.

The overall plan is that Austin will immediately start a series of high dose chemo sessions, each about 4 days long. Each 4 day session he will be an inpatient at Alta Bates Summit Medical Center (not "Sutter" as Austin said earlier, though the hospital is part of Sutter Health Co.) Dr. Irwin reports that the chemo inpatient facilities are dedicated ones with long term nurses who have very extensive experience. On the other hand, Dr. Irwin is about to go on vacation. Two weeks. We were slightly disappointed with that. He has an associate ready to step in if needed, and a nurse Becky who seems to be an asset.

Each 4 day chemo session in the hospital will be followed by a recovery time at home of about 3 weeks, unless Austin is recovering faster than average, in which case it could be as little as 2 weeks. Austin prefers high intensity chemo at the fastest practical rate, an understandable view considering that the tumor began recovering from the Stanford V after only a few weeks.

There will be at least 2 sessions, followed by another scan to measure the size of the tumor mass. If after 2 sessions it is greatly reduced (fairly likely), or gone altogether (possible, not too likely but the best possible outcome) these chemo sessions will stop and he will transfer to Stanford for the Ultra-high-dose chemotherapy, followed by the hematopoietic stem cell transplant, and then the radiation, requiring several weeks of treatment including 4 weeks solid in the hospital. If the mass is moderately reduced after 2 sessions (likely) or slightly reduced (less likely) instead of going to Stanford he will have one or (probably) two more ICE chemo treatments, with the aim of getting the maximum physical reduction in size. If there is little reduction (possible but not too likely) or actual growth (quite unlikely, but the worst case) treatment may be reevaluated with a change in chemical agents, etc.

A lot depends on the meeting with the Stanford doctor on August 8th. We still have the option of taking the ICE treatments at Alta Bates Summit and then going directly to NWU for the integrated TLI/HSCT phase. It is Austin's and my belief that bulky tumor patients seem to do best when their radiation happens as early as possible in the HSCT treatment. Irwin is not certain of how Stanford will do this, but he implies that Stanford is not going to be too flexible in embracing treatment styles advocated by outside institutions. Is that because of bias or because their treatment is clearly superior? We will have to make that judgement once we have the facts.

Chemotherapy works by damaging cancer cells. When they try to fix themselves, the cancer cells can't do it (they are genetically abnormal) and they explode. The body's cells find the pieces of the exploded cells and get the scent, and not only go out to clean up the mess they left behind but they often kill some other nearby cells which smell the same.
     It is like throwing meat at your enemy in the presence of hungry wolves. Your enemy is going to be in trouble! Hodgkin's disease has the blessing that its cells are quite vulnerable to a variety of chemo agents. Hodgkin's cells, if they are exposed to enough chemo, will die, without fail. The only variable is how much chemo the patient can tolerate. Austin's first treatment was at a fairly low level. His tumor did respond, but rather slowly. (Bulky tumors are thought to have an interior environment which adds a little shielding effect to the
tumor cells so they shrink slower.) He was on the borderline between a "PR" (partial remission, now usually called Partial Response) and a "SD" (stable disease, static disease, meaning that the disease shrank some or was stopped from growing.) He is now on the high dose chemo - it is reasonable to expect that his response will also be increased.

Reasonable, but again, not certain. After these ICE steps, his final chemo sessions will be ultra-high doses. These are the doses which are one of the miracles of modern medicine, because they can cure so many cancers - often even the killer disease Acute myeloid leukemia. They were once unusable because they would kill all the patients and it is no victory to cure the disease but have the patient not survive the treatment. But the hematopoietic stem cell transplant procedure restores the destroyed blood system and "rescues" the patient from the effects of the ultra-high dose chemo. There is no such rescue for the cancer cells, though, and therefore they stay dead. The patient receives a complete remission, gets consolidative radiation treatments to forestall any relapse, and goes home for a long recovery period, cured.
     This is what we intend, hope, and expect for Austin.