I realized after I posted my last message that I should have used a more specific subject line so that those with Taf/Mek knowledge and experience would see it better. Here is my original post. I am wondering about the timing of the targeted therapy – is it better now when I have a low tumor burden or is it OK to wait until there is more progression? Thank you for your feedback.
Original post:
I recently posted that I have 4 new tumors in my right leg, hip, and lower back and that I also just recently found out I am BRAF positive. I did 3 doses of ipi/nivo and have been on just nivo for almost a year.
At my last appointment my doctor mentioned Tak/Mef, but now it seems she is pushing me to stay on nivo and postpone the targeted therapy. All I can get her to say when I ask why is that the progression is
"slow" and Tak/Mek only stops progression for 10-11 months (in most people).
I have 2 pressing questions/thoughts.
1. While I know it's good that there is no progression to the lungs, etc. I am not understanding how 4 new tumors in 3 months (since the last PET scan) is "slow." Is that actually slow?
2. Why isn't it better to do the targeted therapy now when the tumor burden is low than to wait until it spreads more? I don't understand that part.
I have a nivo infusion tomorrow and will ask the nurse to make an appointment for me with my doctor so we can talk about this in person. (After our initial appt when she told me about the targeted therapy, I developed new questions and emailed her twice. Both times I got a one-sentence "answer." I know she is busy and generally just terrible at email, but this is important to me. I know she'll be better in person.)
So, what would you all do or recommend? Start Tak/Mef now or wait? I know you can't tell me what to do, but I guess I want to know if I'm wrong or unreasonable to think now would be better.
It's so hard to know what to do. I hate this disease.
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