Friday, September 26, 2008

LA2

Cecily and I spent yesterday afternoon at LA2. Here’s what I learned:

1. It is an impressive, well organized facility.

2. They claim that chemicals known to cause cancer, birth defects, or reproductive harm are plated up in the cafeteria.

3. Their sarcoma specialist asserts that conventional chemotherapies are effective against liposarcoma. This is in conflict with medical opinion I have previously received in New York. Perhaps the ongoing controversy centers on the definition of “effective”. Some organizations define “effective” as meaning stabilization or regression of tumor size (also referred to as “response”). Unfortunately, this does not always translate to increased life expectancy.

4. They indicate that a number of chemotherapy approaches should be considered. I have listed them below along with their delivery protocols, alleged “response” rates, and serious toxicities:

Adriamycin; heart toxicity; 40-50%; outpatient delivery every 21 days.

Ifosfamide: kidney and neuro-toxicity (causes hallucinations); 35%; 5-day inpatient delivery every 21 days;

Adriamycin + Ifosfamide; heart, kidney, and neuro toxicity; 55%; 5-day inpatient delivery every 21 days;

Adriamycin + AMG655 (clinical trial); above damage plus who knows what else; (“effectiveness” to be demonstrated); outpatient delivery every 21 days;

5. Their protease inhibitor trial is not their first choice for me because in their view liposarcoma is considered responsive to conventional chemotherapy.

6. They do not seem to be fans of LA1’s Trabectadin trial, expressing the opinion that the drug will not be approved for use in the US because of high liver toxicity.

7. The average life expectancy for someone in my position is 12-14 months from diagnosis. Officially, that was two months ago. But without getting into details, the window of opportunity for this to have been diagnosed already dates back several years. So I’ve already kicked the shit outta that theory.

8. If the cancer responds to one of their chemotherapies, life expectancy can be increased up to one year beyond the above numbers. Whoopee!!!

9. They would not treat me until surgical action is taken to address the hydronecrosis of the left kidney.

Summary & Conclusions:

Of the two conventional therapies that LA2 recommends I consider, one produces heart toxicity and the other kidney toxicity. Both systems are already compromised in my body and I do not look forward to damaging them any further.

LA1’s drug trial produces liver toxicity and they won’t treat me until a heart doctor signs off. LA2’s drug of first choice produces heart toxicity and they won’t treat me until a urologist signs off.

Meanwhile, I am trying to schedule an appointment with my doctor at NY1 to get his opinion regarding all this new information. I’ll squeeze him in next week between visits to the outlaw doctor.

And if anybody can recommend a good witch doctor, that will be my next consultation.

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