Invasive mucinous adenocarcinoma---formerly mucinous BAC---Stage IV - 1272033

Hi nanita,

Welcome to GRACE. I'm sorry that your brother has not shown a better response to treatment so far, but I think it is good that he is at MD Anderson, since the oncologists there have access to the latest treatments, as well as connections to many of the top oncologists at other institutions, which is a valuable resource upon which to draw. Of course, the doctors at MD Anderson aren't the only ones who are well-connected, but there are many oncologists who do not have access to such a network of expert opinions.

This type of lung cancer, though not rare, is not seen by any individual oncologist very often. Dr. West estimated that "most oncologists who have treated about 3-5 patients with mucinous BAC in the last couple of decades", while those "who have more experience with BAC [have seen]10-20 patients with mucinous BAC in the past decade or two." - http://cancergrace.org/forums/index.php?topic=8756.msg91242#msg91242

In that same post, Dr. West stated:

"The real measure of benefit is prolongation of survival, and the only true way to assess that is to have a bunch of patients with mucinous BAC, give half chemo and the other half a placebo or just all of the supportive therapies but no chemo, and see whether the people who receive chemo live longer. Honestly, that trial will probably never happen."

So although that post is from 2011, since trials simply aren't being conducted in these small patient groups (it's difficult to assemble enough patients at any given time to test a specific therapy), unfortunately it's just trial and error to see what may work, with the choice of therapy perhaps guided by anecdotal evidence from oncologists who have treated a few more patients than the average oncologist. That's why the networking can be helpful. When my wife was diagnosed near the beginning of the EGFR testing era, her oncologist networked frequently to get ideas.

I hope that the next regimen works well.

JimC
Forum moderator