LA1

A traffic accident on the 101 caused us to arrive 15 minutes late for the appointment at LA1. It didn’t matter as the medical director wasn’t available to see us for another 45 minutes. The hustle-bustle of a cancer treatment facility makes Grand Central Station look like a country church at three in the morning.

The director was pleasant and personable. Whatever ego he may be saddled with is effectively managed. He briefly thumbed through the stack of medical records in front of him and decided an interview would be more efficient. Like me, he found the 7 to 8 year recurrence frequency intriguing. He also seemed somewhat surprised that I am not taking any heart medication.

He escorted me to an examining room where he conducted a brief physical exam. On the way there we passed a couple of patients connected to their IV drip bottles. One woman was eating a cheeseburger and fries. After stifling a laugh, I almost cheered as I interpreted it to be a big “F-You” to the medical community. But I dunno – it may be part of the treatment protocol these days.

This center is conducting clinical trials of a number of chemo agents and protocols, two of which he felt might be applicable to my situation: Trabectedin (the sea squirt derivative) and Brostallicin. Both are low toxicity agents, meaning that they do not result in hair loss and are relatively unlikely to damage critical organs. He didn’t offer up results of the trials so far so I had to ask. Trabectedin, for which they have compiled a significant body of data, has succeeded in arresting or reversing tumor growth in 30-40% of cases. Although they have much less data for Brostallicin, early indications are that it is performing at about the same rate. The proof of the pudding is in terms of changes in long term survival rates, but I didn’t ask that question because it was obvious that they do not yet have any long term data.

Trabectedin is administered for 24 hours every 21 days, requiring the surgical installation of a shunt under the collar bone so that the patient may take an infusion pump home with them. Brostallicin is given for one hour every 21 days, so it is administered in the conventional IV drip fashion.

What’s the standard chemo treatment for liposarcoma? “Adriamycin and Ifosfamide”. What’s the likelihood of that regimen stopping or reversing tumor growth? “20%”. Toxicity? “Very high”. Any advantages over Trabectedin and Brostallicin? “If the tumors do shrink, they shrink much faster.”

He is definitely in favor of clinical trial enrollment at his facility in lieu of the “standard” treatment. This is hardly surprising given that this is what he does, and I would tend to concur anyway. He recommends that I start with Brostallicin because that trial excludes patients that have first tried Trabectedin. Then proceed to Trabectedin, which only excludes patients that have previously undergone high-dose conventional chemo. Then on to Adriamycin and Ifosfamide if desired. And I thought I abused my body in college.

Regarding the exclusion criteria for patients with cardiac issues, as I suspected that can be worked around. But before he agrees to treat me, he insists that I first see a cardiac specialist to determine if I require heart surgery prior to undergoing chemo treatment. If the heart doctor says that I need surgery prior to chemotherapy, and I choose not to have the surgery, he will still treat me but will require a liability release from me attesting to the fact that I am aware of the risks and have refused cardiac surgery. I guess he wants to be sure that if I drop dead on the floor of his treatment room while connected to an IV and dining on a cheeseburger and fries that he won’t end up in a courtroom someday listening to expert testimony on the interactions of experimental drugs and Happy Meals in high-risk cardiac patients.

Dr: “The easiest, of course, is if you would have the surgery first.”
Paul: “I thought that involved open heart surgery.”
Dr: “Easy for me. Not easy for you or the surgeon.”
[laughs all around]
Dr: “But I would treat you either way.”

In one respect, I left there pleased that I would not be denied access to one of these two drugs if I were to refuse surgery should it be recommended by a cardiac specialist. On the other hand, I was slightly underwhelmed by the whole experience.

Factoid 1: “Pharmaceutical companies often pay a "bounty" of around $8,000 per patient when doctors refer them to drug makers' trials.”
Factoid 2: “Less than 5 percent of cancer patients in the United States participate in clinical trials.”
Source: http://www.wired.com/science/discoveries/news/2002/10/56072

Next up: an appointment with a local oncologist on Thursday to discuss his recommendations and various statistics such as life expectancies and long term survival rates.

After that: an appointment with LA2 on 9/24 to discuss their clinical trials for liposarcoma.

And somewhere in between: try to get an appointment with SF1 and/or SF2 regarding the question of open heart surgery.

I really need to get a punch card started here. Visits to the 13th specialist come with a free burger.