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Jay Lake
Date: 2013-03-06 04:51
Subject: [cancer] Yesterday's second opinion consultation
Security: Public
Tags:cancer, child, documentary, family, health, personal, radiantlisa, texas, travel
Yesterday, Dad, Lisa Costello and I met with an oncologist at M.D. Anderson. Donnie Reynolds was there, too, documenting.

The oncologist conducted a very thorough physical examination of me, and discussed my medical history in some detail. They then went over their view of my treatment options, focusing as my medical oncologist back in Oregon has recently come to do on treatments for life extension rather than treatments for cure.

Basically, there are two options. One is to continue with the treatment guidelines which we have been following. The other is to engage in investigational/experimental treatments.

Regarding option one, the oncologist at M.D. Anderson believes that the right way to proceed is to shift directly to Regorafenib, which is third down the line in the current treatment plan at my home hospital. Their logic for this is that we have effectively proven that the proposed continuation of Vectibix will be ineffective given my most recent metastases, and they feel it will be a waste of my time and effort.

The other option is to embark on a investigative/experimental clinical trial. The oncologist said if I were local to Houston, they would enroll me in a current trial combining Erbitux (Cetuximab, a close cousin of Vectibix/Panitumumab) and Aflibrecept, which the investigators believe will facilitate the effectiveness of the Erbitux.

The challenges of enrolling in an investigative/experimental clinical trial out of state are immense, and we are still working to understand the rewards. As the oncologist here in Houston said, there's no particular guarantee of success down any path. They declined to give a firm recommendation, saying this choice was up to me. My parsing of their comments about effectiveness is that none of my choices have an especially high probability of success.

I did speak to a knowledgeable friend afterwards about the question of why I would choose to go the route of investigational medicine when there were still approved treatments available. Their response was that for late stage patients such as myself, Stage III clinical trials can sometimes be more effective. My cancer has proven resistant to most of the available drugs within the clinical guidelines, so doing something new has a better shot. Also, patients in clinical trials are monitored much more closely than patients in mainstream treatment, which can have a positive effect on outcomes.

I also spoke on the telephone yesterday evening with the M.D. Anderson oncologist, who confirmed they have talked to my medical oncologist back in Oregon about the treatment recommendations. I'll be seeing the medical oncologist at home on Friday, so we can review these outcomes and consider next steps, such as whether to make a serious effort at working out the logistics of a clinical trial in Houston. This very much includes significant questions about the impact on [info]the_child, should I need to relocate to Houston for a while, not to mention chemo caregiving, finances, and so forth.

There's still the potential wildcard of the genomic testing results, which I am expecting to see any day now. Also, we have a meeting today with the chief scientists from the group doing the clinical analysis, which will both shed more light and further muddy the waters.

At this point, it is very unclear to me which direction I might choose to follow. I have questions out to both the M.D. Anderson oncologist and my home hospital oncologist, and am awaiting more answers from them, which may influence my choices. It's a tough call at best.

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mlerules: Brain
User: mlerules
Date: 2013-03-06 15:20 (UTC)
Subject: (no subject)
This very much includes significant questions about the impact on the_child, should I need to relocate to Houston for a while,

This issue is what immediately popped up in my mind, too. (Great minds...)
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Debbie N.
User: wild_irises
Date: 2013-03-06 15:41 (UTC)
Subject: (no subject)
I just want to say that any decision you make will be a wise one.
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User: saveswhat
Date: 2013-03-06 16:44 (UTC)
Subject: (no subject)
I'm in favor of your participation in a clinical trial. Often they enroll at multiple sites throughout the country. It might be worthwhile to see whether the trial in question has investigator sites in Seattle or San Francisco and enroll at one of those.
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Perdix: Buffy
User: perdix
Date: 2013-03-06 22:38 (UTC)
Subject: (no subject)
For what it's worth, my parents effectively relocated to Houston for several months while my father was at M. D. Anderson getting treatment for his rare and extremely aggressive adenocarcinoma of the parotid gland. He had a radical neck dissection first, then a course of radiation prior to three months of chemo back home in DC. As a result, I spent quite a bit of time there myself that fall/winter/spring.

Our experience was that M. D. Anderson is a pretty amazing place to be a cancer patient or a cancer patient's caregiver. I'm not saying the place is perfect or their doctors are infallible or anything, just that they really do go the extra mile to make life easier for the people who seek treatment there. My parents had a very pleasant suite in the Rotary House that was well appointed for their needs, and I don't think any of us ever met anyone who was less than friendly and helpful.

That said, my parents (a) had no children still living at home, (b) were able, from a professional/financial standpoint, to afford this, and (c) did not have a potentially equally good treatment option in DC. So, very different circumstances. But, FWIW!
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