How did you find recurrence after being NED and released by Dr

Please feel free to read, share your thoughts, your stories and connect with others!
angie1975
Posts: 34
Joined: Tue Mar 01, 2016 9:30 pm

How did you find recurrence after being NED and released by Dr

Postby angie1975 » Tue Oct 25, 2022 3:02 pm

Hello All

I do Not get back here and post much, but this forum has given me comfort through some difficult times. I am wondering if anyone can share their experience after you’ve been released from your doctor and have been NED For awhile and had a recurrence. If you weren’t going for regular check ups anymore how did you know you might have a reoccurrence to go back and check?

I have been feeling just generally unwell over the last couple of months had Covid got over that still felt really tired. I just asked my oncologist for some lab work and a CT scan that is coming up this Friday. I was released with no more scans or monitoring in 2021 but after not feeling well I wanted to get checked again. I noticed my white blood cell count dropped from 7.2 to 4.6 from my last labs in July. I know no one can probably tell me anything until I have my scan but has anyone had their white blood cells drop that much with her lab work? It is still within the low normal range however I’m just concerned that it dropped 2.5 points from last July until now.
Stage 3 RC, DX 9/15/15
Prospect Trial, Folfox only
Surgery 2/11/16, successful w/clean margins
1/13 nodes positive
4/11/16clean scan, NED
7/13/16, CLEAN SCAN NED
7/21/21 clean scan released by Doc
6 years NED

roadrunner
Posts: 465
Joined: Sun Jan 12, 2020 8:46 pm

Re: How did you find recurrence after being NED and released by Dr

Postby roadrunner » Tue Oct 25, 2022 3:26 pm

It’s not conclusive, and you don’t advise exactly when you had COVID, but lymphopenia can persist long after recovery. From one study:

“In particular, lymphopenia—being frequently discussed as a result of direct or indirect viral interactions with lymphocytes12,13,14—remained in a considerable part of our study population, even beyond 90 days of follow-up (see Fig. 4). Our subgroup analyses showed that patients with lymphopenia experienced more frequently persistent symptoms. To the best of our knowledge, this is the first COVID-19-related study on the duration of lymphopenia along with other routine lab values going beyond 30 days.”

https://www.nature.com/articles/s41598-021-91270-8
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

angie1975
Posts: 34
Joined: Tue Mar 01, 2016 9:30 pm

Re: How did you find recurrence after being NED and released by Dr

Postby angie1975 » Tue Oct 25, 2022 3:48 pm

Hello Roadrunner

Thank you for your reply. I had Covid 3 months ago at the end of July. I have seen my white blood count fluctuate just not as much as it did this time. I know once I get the scan and results I will feel better knowing it may be nothing but thought I 'd check in with others while I wait for my scan.
Stage 3 RC, DX 9/15/15
Prospect Trial, Folfox only
Surgery 2/11/16, successful w/clean margins
1/13 nodes positive
4/11/16clean scan, NED
7/13/16, CLEAN SCAN NED
7/21/21 clean scan released by Doc
6 years NED

roadrunner
Posts: 465
Joined: Sun Jan 12, 2020 8:46 pm

Re: How did you find recurrence after being NED and released by Dr

Postby roadrunner » Tue Oct 25, 2022 7:12 pm

Looks like you’re well within the COVID window, so perhaps it’s just that. And you’re not even lymphopenic, just lower than before. Of course, it could be many other things, too. But I wish you good luck in the scan; that will likely give you piece of mind!

Like you, I’m interested in others’ stories, but I should add that CRC recurrence is a broad category with really variable facts. In those who’ve had their rectum removed, it’s usually mets, liver or lungs. If on W&W, or an early stage, local recurrence also occurs, and is usually luminal (recurrence sometimes happens in those that have had More radical surgery, but it is obviously of a different sort). I think most colon cancer recurrence is metastatic. All that to say stories will likely vary, and vary widely.
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 75 guests