Update for Sunday, June 17

Nanc is now 3 weeks out of surgery and healing well. She was able to walk one of the dogs this morning for the first time since the surgery so that is exciting. There is obviously still discomfort but it is getting better by the day. Weight loss continues to be a concern as she is now down to 116 from over 125-130 about a month before the surgery. We bought a bunch of regular type foods to try and put some weight on before chemo starts.

We have added quite a few new words to our vocabulary lately: optimally debulked, intraperitoneal chemical therapy, chemial in fusion, intravenous chemical therapy, Gynecologic Oncology Group, cisplatin, carboplatin, taxel, paclitaxel, neurologic toxicity, port catheter, pick line, metastasis, stage IIIc, and so on....

And speaking of chemo, we saw Dr. Linda Roman over at USC Norris Cancer Institute Friday for a second opinion hoping to confirm what Dr. Leuchter had prescribed as a course of treatment and what we got (surprise) was not only a second opinion, but a different one.

Leuchter prescribed the text book treatment as outline in the GOG 172 I wrote about last week. Roman is suggesting something slightly different. She is suggesting IV only for four treatment, 3 weeks apart, same drugs as in the other protocol. However, she wouldn't start the IP for 12 weeks. Now it is a proven fact that IP treatment is vital for treating this form of cancer. However, the toxicity rates for the GOG 172 protocol is very high and "brutal" as Roman described it. She wouldn't use the taxal via the IP, only one of the platinum chemicals. The word she used was "humane" for this route.

One note we read about the GOG 172 is that most women never make it through the full 6 treatments as it is so toxic. The results are still good, but the quality of life for the first year is somewhat lower than other courses without IP. Roman feels that it's because of the taxal being introduced directly into the abdomen. She wouldn't have even put the port in until just before starting the IP treatments 3 months in.

So, what to do, what to do????????

Good question. We are going to talk with a Dr. at NYU who specializes in chemo treatments for gynecological cancer. We are also going to talk to Leuchter again. However, he did say up front that Nanc needs to go where she is comfortable for the treatments. He even recommended Roman as a second opinion...

Of course there is not one sure fire way to be sure that whichever we choose, it will be 100% guaranteed to kill all the cancer. There is no way of knowing that with any treatment. So which is most effective in increasing the chances of a full recovery? No one can say for certain. there are lots of opinions but no head-to-head studies to prove any of it. They only know for certain that a combination of IV and IP using the two drugs is so far the most effective. Beyond that, it's still partly a crap shoot...

So pluses and minuses as I see it today:
Doctors:
Leuchter is an amazing surgeon but a bit of a clinician. Roman is very personable and would treat Nancy as a person, not another patient. I think she would be much more deeply involved in her care than Leuchter would. Plus she would be easier to reach in an emergency.

Protocols:
Obviously one is more toxic and harder and the other is longer but not as brutal.

Treatment centers:
Cedars is definitely nicer and closer to shopping, etc. However, Norris is 15 minutes from my work and I know folks on that campus.

Gift shops:
Cedars is definitely bigger and longer hours (it's Beverly Hills after all) but Norris has cooler cancer stuff.

So, we have some phone calls to make tomorrow and will know where she will be going for treatments in a couple of days. Roman wanted to start her tomorrow but Nanc is committed to going on her retreat next weekend. If she were to have chemo on Mon or Tues, she'd be out of commission for a few days and possibly not able to make the trip. Why does she want to start right away? Because this disease is a "wily enemy" as she put it, and she doesn't like to waste any time in killing it.

That's about it for our week. I will continue to bring you all updates as time allows me the luxury of sitting and typing. My ultimate goal is to set up a web blog for Nanc and I and the kids to keep everyone updated. It's frustrating not being able to return all the calls. A blog would keep everyone in the loop more quickly and easily.