Monitoring after FolFox

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polluxx
Posts: 50
Joined: Thu Jul 10, 2008 9:41 pm

Monitoring after FolFox

Postby polluxx » Sat Aug 22, 2020 10:53 am

I only have one more round of FolFox to go. Yay me! But now I need to get with my oncologist about what happens next. First she told me that I would have an appointment with her and she would check CEA every 3 months and I would get a scan every 6 months. I told her I wasn’t comfortable with that because CEA isn’t a good indicator for me, and she agreed to order scans every 3 months instead.

Now I’m trying to figure out if CT scans every 3 months is enough or if I need to ask for alternating types of scans, and blood tests looking for different markers.

I think I’ve figured out what the issue is. I feel like my oncologist is treating me like I’m lumped in with all stage 3 patients. And I feel like although we think we caught the cancer and did the surgery and chemo before it spread, I am much closer to stage 4 than I am to a stage 3A. That is why I feel like I need to be monitored more closely.

I’m waiting on my genetic testing results. The initial screening indicates that my cancer is unlikely to be genetic in origin. Other than that, when I read my path report and look up the terms, everything says “worse prognosis”.

On the other hand, from my oncologist”s perspective the surgeon feels he got all of the cancer during the initial surgery and I’m completing 12 rounds of FolFox so I’m done. She was going to schedule taking my port out. I told her I’d prefer to keep it for 3 years, but I’d compromise and agree to 2 years instead. I know that a reoccurrence would be overwhelming. The thought of also having to get a new port put in would push me over the edge.

I’ve been doing research on alternating CT scans with PET scans. I asked my nurse about the advantages of doing that. She said that in her own cancer journey, her insurance company wouldn’t approve the PET scans because unlike someone with Mets, there isn’t something to monitor with the PET scan. That makes sense to me. I think I could agree to getting a CT scan every 3 months and then getting a PET scan if there is anything of concern on the CT scan.

I need to do more research on ctDNA (liquid biopsy) which looks like it is FDA approved for situations like mine.

It is weird. I held up, emotionally so well throughout this whole process, but the closer I get to finishing chemo, the more depressed I feel. People act like in 2 weeks, I will be done with cancer forever. It will just be a little rough patch in my past, but I feel like, at best, there is only a 50% chance of that actually happening.

It is as if I have a fork in the road. I have no idea which way my life is actually going to go. I’m just struggling with how to hope for the best while being prepared for the worst.

Can anyone relate to that?
Stage 3c
2/2020 Right colon hemicolectomy (invasive adenocarcinoma with micropillary features)
Moderately differentiated
Tumor size: 4.4 in greatest dimension Metastatic Carcinoma in 12 out of 28 lymph nodes
Extranodal extension identified
Margins negative

3/2020 Began 12 rounds of FolFox

User avatar
beach sunrise
Posts: 287
Joined: Thu Mar 05, 2020 7:14 pm

Re: Monitoring after FolFox

Postby beach sunrise » Sat Aug 22, 2020 1:18 pm

I know exactly where you are coming from! I was not part of the trial of 500 something people, not male, not over age 65 and to be grouped and monitored based off that to me is insane but it lays down SOC for stage III's. But at least we have that to "go by." What I read into it is SOC is a "guideline", not set in stone, and that is what I argued with my onc about. He did come around to my way of thinking after about an hour of discussion :) If cea is not a good marker for you maybe you could read back on CRguy, CEA wasn't a good marker for him either and he monitored other markers. After folfox I also consulted with Lexington ND's and it was very informative.
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

nomoretacos
Posts: 51
Joined: Sun Mar 27, 2016 5:57 pm

Re: Monitoring after FolFox

Postby nomoretacos » Sat Aug 22, 2020 6:30 pm

Firstly well done on nearly finishing chemo!

As a fellow 3c'er I thought I'd chime in with my own experience. I was fixated on the stage 3c prognosis and my chances of recurrance, i felt i had a very high probability of it coming back. I wanted one foot still in the cancer centre whilst the other explored the return to some sense of normality. It's a very common thing people feel after treatment.

When i finished chemo my onc mentioned YEARLY CT scans which I didn't feel was regular enough and similarly CEA was not a good indicator for me. Her reason for yearly was the amount of radiation from a CT scan is huge and can cause additional cancers. However my Onc wasn't doing my monitoring so when I was placed back in the care of my Surgeon he wanted 6 monthly scans and 3 monthly CEA and that's what I went with. I had 6 monthly scans for the first 3 years then switched to yearly which is what I'm on now after 4 years NED.

I also did not want my port taken out, I had a terrible time putting it in and did not want to potentially go through it again but my Onc convinced me otherwise and looking back now it was the right choice.

I personally feel 3 monthly CTs is too much, not just all that radiation but I get massive scanxiety so to go through it at a higher frequency would be miserable for me.

Understand you need to do what is right for you and what you are comfortable with. Wishing you all the best!
03/16 Dx Stage IIIC, sigmoid resection surgery,T3 N2b M0, 7/20 nodes, 4 tumor deposits, CEA 3.7, age 31
04-10/16 Folfox with delays and reductions
10/16 Post chemo CT scan shows two non specific spots (one liver, one lung)
11/16 Port removed
12/16 CEA 0.9
09/17 NED
03/18 NED

4us4
Posts: 19
Joined: Tue Aug 13, 2019 2:58 pm
Location: Oregon USA

Re: Monitoring after FolFox

Postby 4us4 » Sat Aug 22, 2020 7:22 pm

polluxx wrote:It is weird. I held up, emotionally so well throughout this whole process, but the closer I get to finishing chemo, the more depressed I feel.......Can anyone relate to that?


Totally relate to this!!! For me, as long as there a “plan of attack” I felt like i could weather the storm. It was the “no next step” that felt/feels hard. Just sending ❤️❤️❤️❤️
DX@39yo in April19: Stage 4 Sigmoid Mets to peritoneum, ovaries, spleen
June-Oct 2019: FOLFOX, Avastin, 5FU (9 infusions)
Nov19: Cytoreductive+HiPEC at UCSD, PCI score= 8
Jan20: FOLFOX, Avastin, 5FU (3 infusions)
April,June,Aug2020: watching several small growing lung nodules

Married w/ two sons (5,1). Oregon coast-USA. Solid in my faith & firmly believe WHATEVER the future holds, God is with us & THAT is enough...while praying my socks for full recovery & chance to raise my kids to adulthood.


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