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NED: the highs and lows of No Evidence of Disease
Pancreatic Cancer | Last Active: Apr 21 7:19am | Replies (25)Comment receiving replies
NED is wonderful to hear but in my experience I would be asking second opinions on at least a maintenance option.
Does the CA19-9 track for you?
If you are talking the difference in CA19-9 from 12 to 83, that could be many things, including inflammation or pollen attack(if you lived in the TRUE south😂).
Stay healthy, keep walking and deep breathing around your beautiful new home.
I did the RM drugs in clinical trial for 7 months. They were effective in keeping things at bay until late January. They are good-but I think the final answer will be pairing with existing chemos we have.
I know people doing it with folfurinox and with gem/abraxane. Have not heard of anyone doing it with the maintenance pill form. Perhaps Michael Francis will know of this
Replies to "NED is wonderful to hear but in my experience I would be asking second opinions on..."
Hello gamaryanne,
I hope you are doing well after your radiation treatment.
CA19-9 has always been a good tracker for me. Mutations change I guess ( something I didn’t know before). My Guardant360 or liquid biopsy test didn’t show any pancreatic mutations other than TP53 which was noted to be probably benign and at an occurrence of 0.3% so I’m surprised that my oncologists aren’t correct about the NED, but on the other hand I always say this disease has been like a roller coaster ride for me. I have t done much walking g lately as I went I to a deep depression for 2 days, but y day 3 I had to lift my spirits up since I had an interview to be an environmental consultant subcontractor that a friend set up for me so I’ve been pretty busy preparing my proposal. I hope you are doing wonderful!
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After the trial stopped being effective are you back on chemo?