NED: the highs and lows of No Evidence of Disease

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

I have been on Zeloda for 5 years as maintenance. Michael

Hi Joie,
Yes, I’m not really NED. The chemo and radiation were keeping my cancer at bay. It is now 6 months since my last radiation treatment so I think technically that means it is no longer active though we are hoping it decimated the lesion that was radiated. I took my 2nd session of chemo last month (totaling a 1 month absence) in order to make a smooth to our new abode. When I returned for my gemzar last Monday and my blood CA19-9 and CEA were taken the results were normal for CEA and 80 for CA19-9. My dr says CEA detection lags behind the CA19-9. Before my chemo vacation my CA19-9 was 12. In January I got the Guardant 360 test and the only pancreatic mutation it showed was a TP53 mutation (benign or likely benign at 0.3% occurrence). I do have a CT scan on Monday to hopefully clarify the differences. I feel well with the exception of a new subtle pain that appears to be below the area of the liver - Hope it’s inflammation. Thank you for your support and may you and your husband have some respite from this disease during this Easter and beyond!

Hi Joie,
Yes, I’m not really NED. The chemo and radiation were keeping my cancer at bay. It is now 6 months since my last radiation treatment so I think technically that means it is no longer active though we are hoping it decimated the lesion that was radiated. I took my 2nd session of chemo last month (totaling a 1 month absence) in order to make a smooth to our new abode. When I returned for my gemzar last Monday and my blood CA19-9 and CEA were taken the results were normal for CEA and 80 for CA19-9. My dr says CEA detection lags behind the CA19-9. Before my chemo vacation my CA19-9 was 12. In January I got the Guardant 360 test and the only pancreatic mutation it showed was a TP53 mutation (benign or likely benign at 0.3% occurrence). I do have a CT scan on Monday to hopefully clarify the differences. I feel well with the exception of a new subtle pain that appears to be below the area of the liver - Hope it’s inflammation. Thank you for your support and may you and your husband have some respite from this disease during this Easter and beyond!

After the trial stopped being effective are you back on chemo?

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!

Congratulations!!!!!!!!!!!!!! That's all fantastic news given where you've been.

My husband's markers have gone from normal in Nov 24 to about 200 this month. We hope it is due to the inflammation from the tibia fracture. Blessed Easter!

Hello, yes. The plan was SBRT 5 rounds on small module in my lung then 4 rounds of Naliri. My CA19-9 has dropped from 600s to 200s. I have one more round then we will scan again.