Cancer Journey Update

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crikklekay
Posts: 134
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Cancer Journey Update

Postby crikklekay » Mon Oct 11, 2021 6:49 am

This year has been so incredibly hard for many reasons, and I can’t believe it’s already October. I’ve popped in several times all year with John’s CEA troubles so I thought I’d post an update.

Recap: John’s routine blood work came back with elevated CEA so he was given all the basic scans/tests/etc while continuing to monitor CEA. It kept climbing and the tests were all negative until his first PET scan which showed a spot on his liver that was then confirmed by an MRI.

We had difficulty finding someone who would remove the spot on his liver as it was high up on the dome and had to travel to get the procedure done. Then we had more delays as that hospital’s cancer team didn’t want to remove the spot but do chemo first, the thought being they could see if the chemo was working to shrink it before removal. His normal team argued that we couldn’t get a biopsy to confirm what it is, and since other cancers can make CEA rise they didn’t want to blindly give him chemo and weaken his body to the point he may not be able to get surgery down the line. In the end they agreed the best course was to remove the spot to know exactly what it was. It took a very long surgery and a week in the hospital with an ileus complication but the surgeon confirmed he removed the spot and found nothing else on his liver or in/around his abdominal cavity in the area he was working. It was confirmed as mCRC and he started Folfiri with Avastin last month.

His oncologist did a “blood biopsy” and sent samples out to two labs prior to his surgery and confirmed there are cancer cells floating around in his bloodstream. Neither one was covered by insurance and I’m terrified to get the bills in the mail based on what the EOB says we owe. I wonder if she will want to repeat them after chemo to see if there are still cells floating? I would hope so, though the idea of paying for them out of pocket a second time is not great.

The good news is his CEA dropped after surgery! From over 25 down to just over 2. The hope is the surgeon got everything and all that’s left is to kill the floaters. So far chemo isn’t kicking John’s butt, though he hates how every other weekend now consists of him being too tired to move on the couch. That and his hair is falling out which makes him mad. I know his side effects may become more of an issue down the line as the chemo builds up in his system, but I hope it’s a slow process for his sake.
Caring for DH John
Stage IIIC, Lymph nodes: 6/22
Chemo: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/MSSA infected port, PICC line inserted, chest CT scan showed septic emboli & blood clots
03/18 Hospital w/CDIFF
08/18 CT Scan Clear, NEMD
2018/2019/2021 Colonoscopy Clear
2019/2020/2021 CT Scan Clear
2021 PET scan & MRI show one spot on liver
08/21 Liver surgery to remove spot, confirmed mCRC. Now Stage IV
09/21 Start Folfiri + Avastin

Hooandtrue93
Posts: 17
Joined: Tue May 11, 2021 10:28 pm

Re: Cancer Journey Update

Postby Hooandtrue93 » Mon Oct 11, 2021 8:12 am

Do you know if your doctor can do a ctDNA test instead? I think medicaid/medicare cover those. It looks for tumor dna in the bloodstream and may actually be more sensitive than a CTC test (looking for cells in the blood stream)
28 year old, son of 62 year old mom
Stage 3B Duodenal Adenocarcinoma.
7/13 lymph nodes positive
02/22/2021: Whipple Surgery
04/08/2021: Port Surgery. CtDNA test sample taken (positive)
04/13/2021: Folfox-6 begins for 6 months
07/16/2021: ctDNA cleared. Continue with 3 more months of adjuvant chemo
09/21/2021: Last cycle of adjuvant chemotherapy.

crikklekay
Posts: 134
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: Cancer Journey Update

Postby crikklekay » Mon Oct 11, 2021 7:44 pm

I don’t know, I haven’t heard of that before. I’ll ask at his next appointment, thank you!!
Caring for DH John
Stage IIIC, Lymph nodes: 6/22
Chemo: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/MSSA infected port, PICC line inserted, chest CT scan showed septic emboli & blood clots
03/18 Hospital w/CDIFF
08/18 CT Scan Clear, NEMD
2018/2019/2021 Colonoscopy Clear
2019/2020/2021 CT Scan Clear
2021 PET scan & MRI show one spot on liver
08/21 Liver surgery to remove spot, confirmed mCRC. Now Stage IV
09/21 Start Folfiri + Avastin

catstaff
Posts: 165
Joined: Wed Mar 03, 2021 11:37 am

Re: Cancer Journey Update

Postby catstaff » Tue Oct 12, 2021 6:10 pm

About CTC https://www.mayocliniclabs.com/articles/features/ctc/ It's FDA approved so could be covered. ctDNA may be more for looking at targeted drugs https://www.cancer.gov/news-events/canc ... d-approval (colorectal doesn't seem to be included there, however).

Folfiri usually doesn't cause all the hair to fall out; it will fall out for several weeks then usually stabilizes (but much thinner than before).

CEA going to normal is very positive.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

DarknessEmbraced
Posts: 3649
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Cancer Journey Update

Postby DarknessEmbraced » Sat Oct 23, 2021 7:30 am

I'm sorry that a spot showed up in his liver and that he's having a hard time. *hugs* I hope he feels better soon.
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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