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.