1. < Pancreatic Cancer

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.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

joiedevivre | @joiedevivre | 4 days ago
In reply to @mnewland99 "Hi Joie, Yes, I’m not really NED. The chemo and radiation were keeping my cancer at..." + (show)
@mnewland99

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 It is now 6 months since my last radiation treatment so I think technically that means it is no longer active though we are hoping it decimated the lesion that was radiated.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!

Jump to this post

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!

REPLY
1 reply
mcharlesfrancis | @mcharlesfrancis | 5 days ago

I do not have BRCA I am not aware of TP53 is working. I went thru 18 weeks of chemo on the triplet and 33 days of radiation. Diagnosed on Nov 26 2018 mcharlesfrancis Phoenix Az you can contact me on Seena Magowitz Foundation web site.

REPLY
marienewland | @mnewland99 | 5 days ago
In reply to @mnewland99 "Hi Joie, Yes, I’m not really NED. The chemo and radiation were keeping my cancer at..." + (show)
@mnewland99

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!

Jump to this post

I skipped (not took) one of my chemo sessions in April!

REPLY
marienewland | @mnewland99 | 5 days ago
In reply to @mcharlesfrancis "I have been on Zeloda for 5 years as maintenance. Michael" + (show)
@mcharlesfrancis

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

Jump to this post

mcharlesfrancis,
They’d wonderful news about the 5 year mark - that’s a wonderful place to be and you are a rarity! Do you mind sharing what your mutations are? Do you have BRCA gene? I tried to research it, but couldn’t tell from the studies whether Zeloda is a help or hindrance for TP53. I haven’t really decided if I want to do the trial that my oncologist seems to be encouraging me to go on even though my dear husband keeps asking me my thoughts on it. If Xeloda is one of the drugs they give you during the trial it’s a consideration for me; but it’s also a gamble and I’m not sure I’m willing g to take the risk at this time. I’m waiting to get my CT next week to make that decision. Continued good results for you! How often do you get a CT scan?

REPLY
marienewland | @mnewland99 | 5 days ago
In reply to @gamaryanne "NED is wonderful to hear but in my experience I would be asking second opinions on..." + (show)
@gamaryanne

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

Jump to this post

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!

REPLY
1 reply
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)
@dalegantous

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?

Jump to this post

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.

REPLY
marienewland | @mnewland99 | 5 days ago
In reply to @joiedevivre "Docs were wrong about the NED?" + (show)
@joiedevivre

Docs were wrong about the NED?

Jump to this post

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!

REPLY
2 replies
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)
@gamaryanne

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

Jump to this post

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

REPLY
1 reply
montyd | @montyd | Apr 15 9:28am

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

REPLY
mcharlesfrancis | @mcharlesfrancis | Apr 15 9:21am

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

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.