I apologize for the lengthy absence of updates on the site. It has been a busy couple of months.
We are pretty much still where we were after our visit to Dana-Farber in April...hoping that these options we have will work. Elle had a double dose of Cisplatin/Doxorubicin and Etoposide/Ifosfamide in May and early June that all but brought the tumor to a halt. But now she has a little trouble absorbing the fluids used to hydrate her for these chemo rounds. Due to the location of the tumor near her heart, it has to work harder to re-absorb all that fluid. So it makes it much harder.
So now Elle is doing something called metronomic dosing, which is taking smaller doses of chemo every day as opposed to large does over a short period. There is some encouraging literature on this idea. And we are combining that with an increase in anti-angiogenesis treatment. Elle was taking Celebrex to begin with and that is continuing. But we have added two more drugs to the mix that do the same thing (kill blood flow to the tumor/stop its growth).
The first is fenofibrate, which some people may know as Tricor. It's an anti-cholesterol drug that also seems to have a good response in fighting tumor growth. The other is an older drug that raises eyebrows: Thalidomide. Since Elle isn't in any danger of getting pregnant, it is relatively safe for her.
The hope is that these three drugs, in combination with oral daily low-dose chemo (Etoposide and Cyclophosphamide) will halt the tumor's growth and (fingers crossed) begin to even bring it down a little. And there was a good discussion with the radiology department. If we can definitely halt the tumor's growth, we may be able to start targeting parts of the tumor with radiation therapy. And if that happens, who knows...
But with all this, Elle has still been full of energy and life and joy. Here is a picture of her and her brother on vacation in Vermont last week.
And here they are as Ben and Jerry