maxandersonjr

Thanks to all of the thoughtful and informative responses. The vision thing is still there but hasn’t gotten any worse and she says it’s most just very dry eyes which make her vision slightly blurry. Nothing she can’t tolerate thus far. She was almost completely off her Prednisone for her colitis but as soon as she tapered from 5mg to zero, she was racing to the bathroom. Doctors can’t say for sure if it’s the Braf/Mek or her colitis or a little of both. She says her ‘bumps’ (we hate the word tumor) on her breasts have all but disappeared as did the one in her abdomen so it seems to be work (fingers crossed). Still not sure about the ones on her sacrum and spine since those will require a scan (7 weeks from now). In the meantime, we are going to take a vacation next week since she’s feeling pretty good all things considered.

As for her resuming immunotherapy at some point, her doctor said they’d probably stick with Opdivo but substitute Ativo (sp?) for Yervoy and hope that she has a better response. But he’d like to keep her on the Brak/Mek combo at least through this summer (if it works).

Thank you all! I think the biggest ? mark is what we do when the targeted therapy stops working (assuming it works). Options may change in the interim but with immunotherapy being the one with the greatest durability, we just hope that her mixed response to her lone yervoy/Opdivo treatment doesn’t mean that immunotherapy can’t/won’t work down the line. I guess the name of the game is use the tool we have now (BRAF/Mek) and deal with other options later.

Thank you all for the information.

I’m so sorry about your loss. This is so hard for the families too. My wife is our “North Star” and the thought of losing her levels me. I don’t think she’s allowed herself to consider the prognosis so she’s living her life much as she did before the diagnosis. But she just started having this anxiety that she’s doing something wrong and that she shouldn’t be out running errands, working, etc. – like she should be traveling the world or whatever. But then that is scary because it feels to her that she’s giving up and it all feels forced and morbid. It’s surreal and I don’t have the words to help other than to try to live and be present in the moment and not get ahead of ourselves.

Our oncologist at U of C is Dr. Olsen but he consults with Gajewski on her case as it isn’t a huge group there.

We’re a few weeks into her targeted therapy and she seems to be managing the side effects okay. Some of her palpable “bumps” have disappeared or close to it. No idea about the internal ones though. That will make the scan next month stressful as hell. She’s still slowly tapering off Prednisone for her colitis. It’s not ideal but it’s important that she’s able to eat and keep her strength up. Plus, we sometimes take for granted how much pleasure we get from food. Denying her that and having her contend with an active case of colitis makes life fairly miserable.

If the targeted therapy is working, I think the plan is to keep at it through the summer. I think my wife if hoping to try immunotherapy again with the newly approved drug as she views it as her only hope for long(er) term survival. Her hope is that she tolerates it better without the Yervoy and has a better response. That’s my hope too.

Thank you so much for responding and I’m glad to hear you are doing well! Makes me feel a bit better. When I read vision loss was a side effect, I was a little freaked out.

I guess I shouldn’t characterize as a Hail Mary but I guess I just feel like immunotherapy offered best hope. Still wondering about TIL as I’d read that it can help those for whom immunotherapy didn’t work.