Brenda: I noticed your progression occured after dropping the Xeloda. Coincidence or contributory??
I recall in a pm that I asked why you had elected to drop Xeloda and you mentioned that you would inquire with your onc when he got back from vacation. What was his response? When I consulted at Dana, it was suggested that Xeloda be given with Tykerb for the brain and as I understand it, Tykerb works best with Xeloda.
Also, what about Patupilone? Cleveland clinic has a trial going on. I stay interested in Avastin. Temodar also.
Any thoughts of a second opinion at MD or Dana, etc? My onc is brilliant, but he always wants all of our best resources when making such a decision and encourages me to go get us some good info, so we can make my best choice. As he reminds me, he is a local onc and not exposed daily to the latest treatments, as they are in research settings. I know you are very close to yours, but two heads are better than one. I also have found varied info and philosophy from rad onc to rad onc. Again, I know you love "Patch Adams," but, maybe some other input from a university facility that offers all types of radiation options and equipment? If you find resistance in getting focalized treatment (I did), I found much more aggressive treatment options using SRS at places like UPMC and UVA and I'm sure you would find like thinking at all of the wonderful places you have access to in Texas.
I know all to well the fears and difficult choices this involves. I am not wanting WBR, but I also think it may help with preventing Lepto, so, I am trying to open my mind to this possibility for myself. Several of my mets are in the posterior fossa region and I worry about spread to the CSF, which is why I will not pursue chemo/biological agents alone without some type of radiation treatment.
I think your time to progression and small number has demonstrated that there may not be a whole tribe of micros living up there up there, so, if you go with focalized treatment and reshuffle the chemo deck, perhaps add back Xeloda or bring in Avastin or Temodar and scan closely, that might be a reasonable course of treatment. Even when I saw Dr Lin at Dana looking for novel ways to use biological agents and/or chemo for micromet prevention, I learned it is not ready for prime time and was encouraged to go the WBR route. I'm still chicken to nuke my whole noggin tough. Cluck! Cluck! Plus I have a hard time with the 25% recurrance rate and no over all survival advantage!?
I had 8 treated in 09/08 and was told to expect WBR if progression was soon or numerous. When my next batch popped up in June, I was offered the choice and didn't feel forced into WBR and since I had not used Tykerb yet, that seemed reasonable to stay with Cyberknife and change up with adding Tykerb and Xeloda. I live in constant fear and scan again the end of September.
Anyway, just random thoughts and continued love and well wishes to a classy, smart dame! I wish we lived closer so we could have some martini therapy! I prefer mine in sugar rimmed glass, but, would consider it in an IV bag!
xoxoxoDarlene