Jewel

Ed, may I ask what tumor burden if any you had when you started this trial, and if your Braf + or -. Thanks.

Thank you so much for clarifying for us. So happy that you got such a wonderful response from Nivo. Nothing wrong with being stubborn!! 🙂

Again thank you so much Celeste!!

Thank you so much again Ed for taking the time to reply. Kens LDH level has always been between 125(lowest) & 155(highest). Like you pointed out living in the woods is a concern, but part of living in the woods is what makes Ken sane when he’s going thru all this stuff. Our oncologist is on vacation so our follow up appt isn’t until the 27th. Lots too think about until then. Thrilled to hear you’ve done so well on the combo…thanks again Ed!

Thank you studiodad for your reply. This site gives me the chance to bounce ideas, fears and listen to other’s experiences. Everybody’s case is obviously different. Comforting to be in the same room where others no where your coming from. Best of luck with your treatment!

Edwin thank you for your reply. It truly is a tough decision for sure. Very happy that your maintaining a stable response!

Wow John that’s incredible. Blessed for sure!! Keeping Ken around is the plan. Thanks again!!

Rich thank you so much for your reply. Sorry you still suffered some horrible side effects but thrilled you are having a great response. It’s a tough decision.

It’s a big decision, we appreciate your reply.

As always Celeste thank you so much for your reply. Our oncologist just wants to give Ken the best available treatment out there. Because Ken faired well side effects wise with the IPI he feels he has a good shot with the combo. We live in the woods in the Adirondacks a 90 min drive to the hospital. We are just trying to make the best decision here. We thought we had this kicked.

How did you make out with the combo? Thanks for the reply.

Thanks Mike, I’ve been paying attention to your posts and hoping you get what you want…..Finally!!!
Jewel

Hi Ed, so if I’m understanding Dr Tawbi correctly Ken would be a great candidate for the Nivo alone. Doing my homework. Thanks Again.
Jewel

Hi Mark,
I’m very glad to hear that your remaining stable on the Nivo. Prayers that will remain so on your next scan. May I ask how your side effects have Been? My husband was one of the lucky ones who was able to tolerate IPI. Sadly the response only lasted 4 years. Not that we aren’t grateful for that time. Thanks Again.

Jewel