NED: the highs and lows of No Evidence of Disease

Posted by marienewland @mnewland99, Apr 14 1:47pm

NED, No Evidence of Disease are 3 words that are music to my ears. I heard them last week and it was a joy to hear, but the practical side of me knows what up I’m up against. I’ve been off my 1 drug chemo for 1 month due to a move to a new place - shangrila I call it because we have a view of a lake yet live in a beach town. I didn’t want to get too excited until I got my CA19-9 results today - it is no longer in the normal range and way higher than I expected. When I first looked at the number it took my brain a few seconds to process it and then a few seconds later we had an earthquake here adding to the drama of it all. Good news is that the Revolution Medicines trial, phase 3 will be beginning any day now. However, being phase 3 you have a 50% chance of getting the “placebo”. Some will probably freak out when I use that term and say it’s not so - but it really is. This test is randomized so 50% will get the trial drug RMC 6236 and 50% will get some chemo drug they are trying out (but gemzar doesn’t come in pill form that I know of). My scan has been rescheduled to this month instead of next minth so I’m grateful to my dr for that, and I’m also grateful that he already put me on the trial list. Lastly, I’m grateful that I get to see my daughter graduate next month as I didn’t think last year that I would be here at all. Well, I’ll continue holding my head up high and carrying the torch for new beginnings. Prayers and blessings for all.

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markymarkfl | @markymarkfl | Apr 14 9:14pm

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

marienewland | @mnewland99 | Apr 14 10:26pm

In reply to @markymarkfl "Congratulations!!!!!!!!!!!!!! That's all fantastic news given where you've been." + (show)

That was last week. Today my antigen was 83 (up from 12); so not so good. My point is that the docs were wrong.
Asked my doc if phase 3 of RMC6236 would admit someone with TPN and he said difficult, but not ruled out. You could start yours here at Mayo Clinic and then continue in Florida!

joiedevivre | @joiedevivre | Apr 15 6:56am

In reply to @mnewland99 "That was last week. Today my antigen was 83 (up from 12); so not so good...." + (show)

Docs were wrong about the NED?

dalegantous | @dalegantous | Apr 15 7:11am

Marie, best of luck and boy are we ever rooting for you. Question: Can you just go back on Gemzar and would that be able to keep it under control?

gamaryanne | @gamaryanne | Apr 15 8:14am

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

mcharlesfrancis | @mcharlesfrancis | Apr 15 9:21am

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

montyd | @montyd | Apr 15 9:28am

You just made my day! That's incredible NEWS!!!!!

chrk | @chrkuh | 6 days ago

In reply to @gamaryanne "NED is wonderful to hear but in my experience I would be asking second opinions on..." + (show)

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

marienewland | @mnewland99 | 5 days ago

In reply to @joiedevivre "Docs were wrong about the NED?" + (show)

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!

marienewland | @mnewland99 | 5 days ago

In reply to @dalegantous "Marie, best of luck and boy are we ever rooting for you. Question: Can you just..." + (show)

Thank you for your kind words dalegantous! Yes, I did go back on gemzar last Monday. My oncologist seems anxious for me to go on the RM6236 that COH will be receiving soon and said that often they want you to be off chemo for a few weeks, but I elected to go back on gemzar (really I was only taking a break from it was my opinion) . Wishing you a wonderful Easter.