Today was the day!

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beach sunrise
Posts: 121
Joined: Thu Mar 05, 2020 7:14 pm

Today was the day!

Postby beach sunrise » Mon Jun 01, 2020 11:42 pm

Hi All, today was suppose to be last of FOLFOX6. CEA is still high at 11.4, inflammation markers still high. Onc came in and said "Today is last treatment." I said "We need to have a hard talk about things." So, long story short, we put off last round of chemo for this week because of high liver markers (mid 100's) and inflammation markers (100's). Did a CT w/ contrast scan instead with extra emphasis on liver by a diff scan protocol. Apparently there are 2 ways to scan, didn't know that. Scan shows absolutely nothing. I shared with onc that I feel cancer is camping out somewhere waiting to start a community. He said there is nothing we can do but wait until if/when something shows up on a scan. I requested scan be sent to major hospital where I had surgery to be reviewed by an eagle eyed radiologist who can find a needle in a haystack. Onc didn't say anything about that but wasn't going to move on it either I don't think until I told him I had already let my surgeons know scan is headed their way for second opinion. Now we wait on second look. I also asked my surgeons for recommendation on a top notch up to date onc who is aggressive/progressive for a second opinion. I have never gotten an oncology second opinion but feel I need one now. I can't just do last round of chemo and sit around and wait for cancer I know is still inside me to take hold God knows where and not find it until 6 mths down the road. What are your thoughts? I would sure like to hear them.
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surg 1-21-20 APR ostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj mFOLFOX6, cea 7
8 rds 6-10 CEA 11.4, 4 more no oxa
6-17: CEA 11.1 AFP 11.2 CA125 25.7 CA199 9
7-2: CEA 11.1 AFP 5.3 CA125 24.8 CA199 8
MHL1+
PMS2+
MSH2+
MSH6+
Chemo sensitivity test NCI "Test failed, neo-adj chemorad did its job. Not enough ca. cells to test."

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CRguy
Posts: 10179
Joined: Sun Feb 10, 2008 6:00 pm

Re: Today was the day!

Postby CRguy » Tue Jun 02, 2020 12:07 am

beach sunrise wrote:What are your thoughts? I would sure like to hear them.


My thoughts :shock:
be careful what you ask for homie !!!!
Seriously, I will just post a reply of mine from a few years back when someone asked about doing a CT / or too many CTs etc. or NOT doing them and having a port removed too soon ...
CRguy wrote:"since he's assuming all is good." and we all hope he's correct BUTT that should be based on medical tests and imaging facts not assumptions
If he's wrong WHO has to get another port put in ..... him ?????
Ok now I'm getting gnarly :twisted: WHEN a doctor says to me "I wouldn't worry about .... OR IF it were me ..... "
I say It is NOT you AND if it were YOU ..... I wouldn't worry either !!!!! :twisted: ... and Yes in fact I have said exactly that,
the second time around after my lung met was missed on a CT

CT radiation : yes it is a real risk BUTT again the newer CTs are way lower exposure than when all the "warnings" first started circulating back in my day (10 years ago )
I once told my Onc ( when he balked at keeping 3 month scans versus 6 month scans for a year )
" I would rather die from too much radiation than another missed cancer met because we didn't do the scan.
My life, so it is my choice. "


We did the scans ... because as I have said many times here ...
" You WILL MISS more for NOT looking ... than not knowing !"

Second opinions ... HELLYEAH !!!
It IS your life after all

Cheers and best wishes
CRguy on the Journey
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

User avatar
beach sunrise
Posts: 121
Joined: Thu Mar 05, 2020 7:14 pm

Re: Today was the day!

Postby beach sunrise » Tue Jun 02, 2020 12:26 am

Thank you for your input. It is so much appreciated! I have had one CT, one MRI and one PET. Last one (MRI) mid Jan before surgery, nothing after.
Second pair of eyes and second opinion is in the works. Its been a stressful day for sure.
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surg 1-21-20 APR ostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj mFOLFOX6, cea 7
8 rds 6-10 CEA 11.4, 4 more no oxa
6-17: CEA 11.1 AFP 11.2 CA125 25.7 CA199 9
7-2: CEA 11.1 AFP 5.3 CA125 24.8 CA199 8
MHL1+
PMS2+
MSH2+
MSH6+
Chemo sensitivity test NCI "Test failed, neo-adj chemorad did its job. Not enough ca. cells to test."

Wewillfight
Posts: 26
Joined: Sun Mar 03, 2019 5:27 am

Re: Today was the day!

Postby Wewillfight » Fri Jun 05, 2020 5:26 pm

Would recommend repeat PET scan every 6 months reviewed by 2 different radiographers, if money was no issue would do this for 3years and revert to yearly PETs, 30% of CRCs spread to peri which cant be picked up on normal scans.

PET only way
Feb 2017 (35yr) stage IIIc, surgery, colostomy, 2 nodes ( crohns colitis since 17yr
6 months FOLFOX
MSS - low mutation burden, TMB=1
NED
Rejoin June 2018
December 2018 symptoms
March 2019: recurrence , surgery , some spread to pertineum
Jan-June 2019 Folfiri+Cetux
No spread.
August 2019: partial blockage symptoms
Nov 2019: Aborted small bowel resection, venting gastronomy fitted , home TPN
Dec 2019- Jan 2020: Keytruda
Feb 2020: reaction
Feb 2020: treatment ceased, TPN withdrawn
March 18 2020: RIP Brother.

User avatar
beach sunrise
Posts: 121
Joined: Thu Mar 05, 2020 7:14 pm

Re: Today was the day!

Postby beach sunrise » Fri Jun 05, 2020 10:22 pm

Thank you so much, Wewillfight!!! Its in my notes for onc discussion.
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surg 1-21-20 APR ostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj mFOLFOX6, cea 7
8 rds 6-10 CEA 11.4, 4 more no oxa
6-17: CEA 11.1 AFP 11.2 CA125 25.7 CA199 9
7-2: CEA 11.1 AFP 5.3 CA125 24.8 CA199 8
MHL1+
PMS2+
MSH2+
MSH6+
Chemo sensitivity test NCI "Test failed, neo-adj chemorad did its job. Not enough ca. cells to test."

michelle c
Posts: 1898
Joined: Wed Dec 02, 2009 3:58 am

Re: Today was the day!

Postby michelle c » Tue Jun 09, 2020 5:45 am

Hi there,

I think you are definitely doing the right thing by being proactive and getting a second opinion. I am a bit concerned about your CEA result. Have you ever had a CA19-9 test? My CEA was 4.7 prior to surgery and then was always between 0.5-2.0. However, I do realise that other people’s results can be in a different range and still be NED. Have you had a PET scan? I do remember speaking my my oncologist about CEA results and him saying that if my CEA result showed a continued upward trend he would order a PET.
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair

User avatar
beach sunrise
Posts: 121
Joined: Thu Mar 05, 2020 7:14 pm

Re: Today was the day!

Postby beach sunrise » Tue Jun 09, 2020 1:07 pm

Hi Michelle, Thank you for your input. I am worried too. CEA still not posted to portal as of now. I went out on my own and got ca19-9, it came back at 8. I also had AFP, ca125 markers done. AFP was high at 12.x, ca125 was 28, inflammation markers were also high. Had a PET in Nov '19, showed no spread past the primary and ct's, mri's show no spread but CEA, AFP and imflammation bloodwork shows something going on. I am going to stay on it and make them monitor the heck out of me by looking and monitoring bloodwork.
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surg 1-21-20 APR ostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj mFOLFOX6, cea 7
8 rds 6-10 CEA 11.4, 4 more no oxa
6-17: CEA 11.1 AFP 11.2 CA125 25.7 CA199 9
7-2: CEA 11.1 AFP 5.3 CA125 24.8 CA199 8
MHL1+
PMS2+
MSH2+
MSH6+
Chemo sensitivity test NCI "Test failed, neo-adj chemorad did its job. Not enough ca. cells to test."

User avatar
beach sunrise
Posts: 121
Joined: Thu Mar 05, 2020 7:14 pm

Re: Today was the day!

Postby beach sunrise » Fri Jun 19, 2020 11:43 pm

2nd look of cap ct scan by hosp where I had surgery at is in. No evidence of metastatic disease. Everything was "normal" except the finding with ab/pelvic vessels it is worded "No significant abnormality." On after surgery report back end of Jan it was noted that I was high risk of venous thromboembolus. Is this connected? I will research but want you guys take on it also pretty please.
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surg 1-21-20 APR ostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj mFOLFOX6, cea 7
8 rds 6-10 CEA 11.4, 4 more no oxa
6-17: CEA 11.1 AFP 11.2 CA125 25.7 CA199 9
7-2: CEA 11.1 AFP 5.3 CA125 24.8 CA199 8
MHL1+
PMS2+
MSH2+
MSH6+
Chemo sensitivity test NCI "Test failed, neo-adj chemorad did its job. Not enough ca. cells to test."

Rock_Robster
Posts: 507
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Today was the day!

Postby Rock_Robster » Sat Jun 20, 2020 7:05 am

beach sunrise wrote:2nd look of cap ct scan by hosp where I had surgery at is in. No evidence of metastatic disease. Everything was "normal" except the finding with ab/pelvic vessels it is worded "No significant abnormality." On after surgery report back end of Jan it was noted that I was high risk of venous thromboembolus. Is this connected? I will research but want you guys take on it also pretty please.

Pretty standard I think... Most of us are basically in the same category - for the “big C’s” of clots (cancer, chemo and a catheter), plus major abdominal surgery which results in elevated clotting factors and reduced mobility. If it was back in Jan then you’re certainly out of the higher risk period now (first month or two after surgery, for which anticoagulants are often prescribed). But still no harm in being cautious with anything that may be a clot.

Sounds like a great scan result! Congrats!

Cheers
Rob
38M Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic VMAT radiation; complete met. response
07/19 Robot ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect #2
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope

User avatar
beach sunrise
Posts: 121
Joined: Thu Mar 05, 2020 7:14 pm

Re: Today was the day!

Postby beach sunrise » Sat Jun 20, 2020 1:53 pm

Thank you so much, Rob!!! I feel better about it now. I researched a lil bit and had to stop because I found 2 papers that were not so good but really didn't apply to me :) ya know!
On another note: A few appts ago with onc, he forgot to bring my copy of bloodwork in to exam room so we had to snuggle up to go over it. On the way out I asked for my copy so he just gave me his. WELL, he also gave me his notes page by accident and it said "Patient is abnormal w/ thinking/questioning." LOL, he has no idea, but he nailed it!!!!! Cancer is nothing to mess with...as CRguy says "You miss more by not looking...than not knowing"
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surg 1-21-20 APR ostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj mFOLFOX6, cea 7
8 rds 6-10 CEA 11.4, 4 more no oxa
6-17: CEA 11.1 AFP 11.2 CA125 25.7 CA199 9
7-2: CEA 11.1 AFP 5.3 CA125 24.8 CA199 8
MHL1+
PMS2+
MSH2+
MSH6+
Chemo sensitivity test NCI "Test failed, neo-adj chemorad did its job. Not enough ca. cells to test."

User avatar
beach sunrise
Posts: 121
Joined: Thu Mar 05, 2020 7:14 pm

Re: Today was the day!

Postby beach sunrise » Tue Jun 23, 2020 3:33 pm

I've been studying quit a bit. One thing I read was cancer cells normally divide at night. I am going to research this more to see what I come up with. Has anyone read this too or know more about it?
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surg 1-21-20 APR ostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj mFOLFOX6, cea 7
8 rds 6-10 CEA 11.4, 4 more no oxa
6-17: CEA 11.1 AFP 11.2 CA125 25.7 CA199 9
7-2: CEA 11.1 AFP 5.3 CA125 24.8 CA199 8
MHL1+
PMS2+
MSH2+
MSH6+
Chemo sensitivity test NCI "Test failed, neo-adj chemorad did its job. Not enough ca. cells to test."

DarknessEmbraced
Posts: 3466
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Today was the day!

Postby DarknessEmbraced » Sun Jun 28, 2020 10:59 am

Congratulations! :D
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)


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