Zig2017 wrote:Yes Robino that is a very thoughtful take on it. We are on this trail together and I sincerely hope your 2018 is smooth and you continue to move forward and enjoy life. The highs and lows for anyone going through cancer can be extreme sometimes. Like a rollercoaster. Mr Ziggy has highs and lows as we hear and read things our doctor tells us. She said if anything goes south she would start something else for him chemo wise, but wants to do what’s best and give this a chance to work. The fact that CEA dropped 1600 points and his CA19-9 I just found out dropped 95,500 points (they said this one was actually at 138,000) is amazing. If you ever need a clinical trial, Dr Yaeger at Sloan in NYC is an awesome scientist and doctor. You can ask her anything and if she doesn’t know she will find out. They are all that way. Lovely people, can’t say enough about the NY campus. It’s a good trial Robino. Very thorough. Getting Brain MRI this afternoon since Mr Ziggy’s left eye is drooping. Looks smaller than the other one. Could just be infection or something but they have to check of course. I’m not worried.i noticed it yesterday and told Dr Yaeger. They are not worried about lung.
Zig2017 wrote:Robino yes cancer cells dying off I believe may show them in circulation from die off and CEA can rise as your going through chemo and then drop back down. At least that’s how I understand it from my breast cancer stint. Yes it is quite the winding road and cancer patients have my full heart due to all they go through. As for Dr Yaeger, she is an excellent doctor and is very proactive. She’s brilliant and a good part of her focus is on BRAF. We have been fortunate with kind care givers, our previous oncologist was a gem, too. She’d call me on the sly to give updates so I’d have a heads up and not be blind sided when we got in there. She’d also speak more frankly and technical to me then hubby and give him encouragement. But unfortunately I had to move him to Sloan because this was out of the scope of our local hospital and we needed this clinical trial. I’m so encouraged by your continued good news Robino! Blessings, Mrs Z.
Zig2017 wrote:...She said if anything goes south she would start something else for him chemo wise, but wants to do what’s best and give this a chance to work
The fact that CEA dropped 1600 points and his CA19-9 I just found out dropped 95,500 points (they said this one was actually at 138,000) is amazing.
Robino yes cancer cells dying off I believe may show them in circulation from die off and CEA can rise as your going through chemo and then drop back down....She’d call me on the sly to give updates so I’d have a heads up and not be blind sided when we got in there. She’d also speak more frankly and technical to me then hubby and give him encouragement.
Zig2017 wrote:Yes they probably do die at different rates, but like you said I don’t want any viable cancer in there! So conflicting as this disease stabilizes and hopefully dies. Do you think he can be NED after this mess or is stable our best bet? I know you don’t cure metastatic disease always,but wondering if we can get to manage it. Until this Einstein level shit decides to use a different signaling pathway or mutate. How long would supplements work or does the cancer work around that eventually? Dunno. Above my pay grade. Question of the ages, I know.
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