Wednesday, March 16, 2011

I Read It In "Oprah"

Yes, I do browse through Meagan's monthly "Oprah" magazine. I've found some good vegetarian recipes in it and some health articles which have been helpful and corroborate information we've received elsewhere. In the most recent edition there is an article from a woman who has ovarian cancer which reflected our experience and the direction cancer treatment is heading.

Essentially she got the standard treatment for ovarian cancer (chemo, radiation) but then started wondering why the treatment wasn't customized to her DNA. So she started a foundation that is helping ovarian cancer patients get their genetic profile and then matching clinical trials to the various mutations they might have. This is right in line with where we've been heading. Standard treatments didn't work (the standard treatments for melanoma are not particularly effective anyway) and the latest drug, Ipilimumab, is a general purpose solution, that although more effective initially for many patients, did not work for Meagan. The latest thinking around cancer is to customize the treatment based on DNA profile, not the location from whence it started.

So we are heading down the clinical trial route (likely starting at the National Cancer Institute in very early April right after her scan scheduled for late March). Which clinical trial we will be eligible for will be a function of a few things - some of which we know and some of which we don't. We do know some are based on particular mutations you have and we know for sure she has one type that they are targeting. But they also are using different mechanisms to deliver the drugs - some are vaccine based and some are infusion based. They have multiple trials running. The question is: who is going to be looking out for our best interest and say, this is the right trial for you given your history and mutations and keeping the most options open for down the road if it doesn't work? When you look at the clinical trials there are many principle investigators and all the studies are "recruiting" volunteers. I don't want us recruited into a trial just because they need a few more numbers in that trial  - I want Meagan in a trial that is right for her.

So we will be prepared to advocate on our own behalf, with some advance discussion with Dr. Kaplan in hand. I'm also going to prepare a one page summary of Meagan's disease and treatment history to hand to each person we discuss her condition with under the theory they won't have read her file (I know, I'm cynical). I'll also prepare a list of questions for the Institute people when it comes to deciding which trial makes sense.

I think we are long past the days when doctors were authoritarian figures and you did what they said without discussion. In our territory it's clearly uncharted waters, they know a little, but they don't know you that well, and it's important that you take ownership and control of the situation. It's not that we aren't grateful for the opportunity or the work they are doing. It just needs to be a partnership with a balance of power and decisions based on mutual concurrence.

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