My wheels haven't stopped turning...

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Monimom
Posts: 46
Joined: Wed Jan 08, 2020 6:15 pm

My wheels haven't stopped turning...

Postby Monimom » Mon Oct 12, 2020 11:08 am

Hi, I am curious, my husband is going for his CT scan tonight to determine what is going on
back in June his CEA started to go up so his Onc ordered a PET scan, results showed nothing ... so she decided to STOP testing CEA as it "caused unecssary anxiety"... 3 months later she decided to check and it has nearly doubled... one thing that changed was my husband switched in Aug. to Xeloda (1800mg twice daily)and they increased his Avastin to 600mg. because hes goin every 3 weeks for it... (he weighs 165 )could that have any bearing on this increase?? is it possible for this increase to be anything besides growth?? this is the CEA numbers she has in his chart

12/20/19- 3208.0

1/20/20 - 1861.8

4/21/20 - 433.1

6/1/20 - 534.6

6/15/20- 582.1

9/25/20- 1474.0


Was waiting to test a careless plan?? I am praying we get good news, my husband said if it has grown, hes quitting chemo...

thankyou , Moni
Oct 2019 56 yo Husband DX'd
Stage 4 MCC
Colon thickening w/ apple core 3.9 cm area
Liver mets both lobes 10.4 x 7.6 cm & 9.3 x 7.7cm
innumerable small lesions
Oct 2019 Liver Biopsy
CEA Dec '19 . 3,028
Dec 2019-present 5FU, Avastin & Oxaliplatin
Jan '20. CEA 1861.8
Feb '20 CT mets 9.4cm x 6.5 & 8.0 x 6.7 cm
April '20 CEA 411.1
May '20 CT mets 8.6cm x 6.3 & 5.7 x 6.1 cm
Colon unchanged

Claudine
Posts: 438
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: My wheels haven't stopped turning...

Postby Claudine » Mon Oct 12, 2020 12:19 pm

I do not have an answer to your question (CEA increasing after chemo changes), but I really hope that you get good news after today's scan XXXXX
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 24.1
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 09/20: nothing to report

boxhill
Posts: 609
Joined: Fri Apr 06, 2018 11:40 am

Re: My wheels haven't stopped turning...

Postby boxhill » Mon Oct 12, 2020 1:11 pm

Where is/was your husband's primary tumor and has it been resected? Does/did he have suspected or confirmed lymph node involvement? Has there been any discussion of a plan to get him to resection and hopefully NED? Have you considered the possibility of the HAI pump?

From what you say in this post it sounds as if his onc decided that since he had liver mets he was "inoperable" by the "not immediately curative" standard and that's that. Are you both satisfied with that? Have you sought a second opinion from, say, Dr. Kemeny at MSK?

Also, what are the genetic characteristics of his tumor, such as KRAS/BRAF/MSS or MSI, and what is his TNM?

I'm sorry, I can't comment on the CEA question, but I think there is a lot of other important info to consider.

ETA: I looked up your earlier posts and now I remember who you are! :) I THINK YOU NEED A DIFFERENT ONCOLOGIST. No matter what the scan says.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

Monimom
Posts: 46
Joined: Wed Jan 08, 2020 6:15 pm

Re: My wheels haven't stopped turning...

Postby Monimom » Mon Oct 12, 2020 5:02 pm

boxhill wrote:Where is/was your husband's primary tumor and has it been resected? Does/did he have suspected or confirmed lymph node involvement? Has there been any discussion of a plan to get him to resection and hopefully NED? Have you considered the possibility of the HAI pump?

Primary is sigmoid colon, no lymph node invlovlvemnt, no this Dr is totally negative about resection, and NED, yes the HAI pump has definately been on the forefront of my mind,

From what you say in this post it sounds as if his onc decided that since he had liver mets he was "inoperable" by the "not immediately curative" standard and that's that. Are you both satisfied with that? Have you sought a second opinion from, say, Dr. Kemeny at MSK? His dr. insists that both lobes of liver having "large " tumors as well as inumerable small extinguish the possibility of surgery , no not satisfied, yes we want to contact Dr. Kemeny and have every intention even more now than prior

Also, what are the genetic characteristics of his tumor, such as KRAS/BRAF/MSS or MSI, and what is his TNM? he is wild type no KRAS /BRAF .. don't know about MSS/MSI or TMN I don't think he had testing for that

I'm sorry, I can't comment on the CEA question, but I think there is a lot of other important info to consider.

ETA: I looked up your earlier posts and now I remember who you are! :) I THINK YOU NEED A DIFFERENT ONCOLOGIST. No matter what the scan says.
Thank you, I feel like a broken record when I share my concerns here , but I appreciate every reply. and I TOTALLY agree about the DR. we have had insurance issues, lost ours and are paying for COBRA $$ at the moment, DH had finally gone back to work and was just laid off again... when it rains it pours.
Oct 2019 56 yo Husband DX'd
Stage 4 MCC
Colon thickening w/ apple core 3.9 cm area
Liver mets both lobes 10.4 x 7.6 cm & 9.3 x 7.7cm
innumerable small lesions
Oct 2019 Liver Biopsy
CEA Dec '19 . 3,028
Dec 2019-present 5FU, Avastin & Oxaliplatin
Jan '20. CEA 1861.8
Feb '20 CT mets 9.4cm x 6.5 & 8.0 x 6.7 cm
April '20 CEA 411.1
May '20 CT mets 8.6cm x 6.3 & 5.7 x 6.1 cm
Colon unchanged

rachelfromnyc
Posts: 57
Joined: Fri Oct 04, 2019 11:32 am

Re: My wheels haven't stopped turning...

Postby rachelfromnyc » Mon Oct 12, 2020 11:59 pm

I can relate to the CEA stress. My numbers aren't the same magnitude but I've read that the trend may be more important than the value. My CEA was 12 at diagnosis then dropped immediately after starting chemo and it was in the "normal" range for a bit. Then it started creeping up and up and up some more, starting in April of this year. My last three readings have leveled off at around 15 but that is even higher than at diagnosis! Oncologist said the same thing. CEA causes too much anxiety and because she doesn't make treatment decisions based on CEA alone, she recommended we only look at CEA every three months at the same time there is a scan so we can look at results together. However I was not ok with that and I ask for CEA to be taken every month. Up to now, CEA is still high but scans are clear. I continue take CEA each month because I like having the data.

I will echo what others have said about a second opinion. I'm at MSK but still work with two other oncologists. One I go to after a scan to see if her treatment plan aligns with MSK's. And the third doc is for if the other two don't agree which has only happened once so far.
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin

boxhill
Posts: 609
Joined: Fri Apr 06, 2018 11:40 am

Re: My wheels haven't stopped turning...

Postby boxhill » Tue Oct 13, 2020 9:58 am

Regarding health insurance, can he get an ACA policy that might be cheaper than COBRA? I know the latter are usually very expensive... I have also heard that those of us who are stage 4 may be eligible for SS disability and Medicare...

I know that there is a group with a lot of expertise that addresses insurance issues in Colontown, the hidden FB colon cancer support/information community. There is also a liver group, a stage 4 group, and so forth. One can belong to as many as are useful. I cannot recommend it too highly and I think you and your H could really benefit from it. If your H isn't interested, you can still join as a caregiver.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

miketom
Posts: 1
Joined: Wed Oct 14, 2020 8:19 am
Facebook Username: gina.brewton

Re: My wheels haven't stopped turning...

Postby miketom » Wed Oct 14, 2020 8:20 am

I hope things turn around soon

Monimom
Posts: 46
Joined: Wed Jan 08, 2020 6:15 pm

Re: My wheels haven't stopped turning...

Postby Monimom » Fri Oct 16, 2020 11:48 am

Thank you, today is the day we learn the scan results ... it's been heavy on my mind, I will post when I can

Moni
Oct 2019 56 yo Husband DX'd
Stage 4 MCC
Colon thickening w/ apple core 3.9 cm area
Liver mets both lobes 10.4 x 7.6 cm & 9.3 x 7.7cm
innumerable small lesions
Oct 2019 Liver Biopsy
CEA Dec '19 . 3,028
Dec 2019-present 5FU, Avastin & Oxaliplatin
Jan '20. CEA 1861.8
Feb '20 CT mets 9.4cm x 6.5 & 8.0 x 6.7 cm
April '20 CEA 411.1
May '20 CT mets 8.6cm x 6.3 & 5.7 x 6.1 cm
Colon unchanged

NHMike
Posts: 2503
Joined: Fri Jul 21, 2017 3:43 am

Re: My wheels haven't stopped turning...

Postby NHMike » Fri Oct 16, 2020 8:27 pm

My CEA rose through chemo and I was on Xeloda and Oxaliplatin. The oncologist was also concerned with the rise and ordered a CT and found nothing. I believe that the rising CEA was related to increasing exercise and maybe the Xeloda.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Claudine
Posts: 438
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: My wheels haven't stopped turning...

Postby Claudine » Fri Oct 16, 2020 9:07 pm

I hope you get good news XXXXXXXXXX
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 24.1
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 09/20: nothing to report

DarknessEmbraced
Posts: 3499
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: My wheels haven't stopped turning...

Postby DarknessEmbraced » Sat Oct 17, 2020 12:36 pm

I hope you get good news.*hugs*
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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