Stage lll now stage IV, looking for guidance

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Adp0909
Posts: 5
Joined: Thu Jan 07, 2021 3:26 pm

Stage lll now stage IV, looking for guidance

Postby Adp0909 » Mon Dec 06, 2021 12:23 pm

First, you all are the bravest people I know and as a daily lurker you have given me so much support and information over the last year.

This is my first time posting as caretaker for my 38yo husband. Everything at stage 3 seemed to the book and we had so much hope and dare I say confidence as soon as treatment wrapped. Sadly it’s back. After signatera test and scans moved up we are looking at 3 small liver Mets. Needless to say we are in shock and frankly devastated. (but holding it together for our sweet 2yr old gal).

While we seek a broader opinions this time around - we are in the Bay Area, CA so feel blessed to have options around us - I wanted to help set him up for this next round. My capacity is also a bit different this time, I’m 6+ months pregnant due with a boy in March, stakes seem so high. We desperately want to get this gone keep it away and have him around for our young family for a long time.

Here are a few initial questions.

- Plan is 2-3 rounds of Folfori/Avastin then rescan and plan for resection. What do I need to prepare for with this chemo? Any tips? How different is it from Folfox? Onc said it would be harder and supports time off work this time (he never missed a day on folfox but it was hard)

- also I feel we need mental/emotional support this time around. He is still in a curative place but for the first time his Onc seems worried. Maybe bc it came back so fast? Can we get past this? Sorry just so scared and dealing with many sleepless nights at this point. Would love any similar stories of support and hope.

Thank you!!
DH 37yo Dx cc T3N1bMx, Oct ‘20, cea 1.4, Stage IIIb
2/12 nodes positive
11/20 successful sigmoid colectomy clear margins
12/20-5/21 12x adjuvant Folfox last 4 w no oxaliplatin due to counts
2 clear CT scans March ‘21 August ‘21
11/21 Signatera positive :(
Pet, CT, cea 7.1 first time it’s ever been higher than 1.6
MRI confirms small liver mets

Rock_Robster
Posts: 620
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Stage lll now stage IV, looking for guidance

Postby Rock_Robster » Tue Dec 07, 2021 2:59 am

Hi there, I’m sorry to hear the news, but great that the oncologist is optimistic about getting surgery. This is very good news. Has he had a consult with a liver surgeon directly yet? They may also want to be involved in the chemo planning as this can impact surgery too (for example, my oncologist withheld Avastin from the last cycle so as not to further delay surgery; and the surgeon didn’t want me doing more than 4-5 cycles to avoid risk of liver injury before resection).

Depending on surgical opinion, you may also want to consider a consult with a radiation oncologist as a Plan B, in case for some reason the surgeon isn’t able to resect/ablate everything.

Have they done genomic/biomarker testing to confirm any mutations, MSS status etc., and hence most appropriate next line of chemo treatment?

Personally I found FOLFIRI easier than FOLFOX, and Avastin doesn’t add much for many folk in terms of side effects. Hope your experience is the same. The hallmark of FOLFIRI is diarrhea, so keep some Imodium on hand and watch out carefully for dehydration. I did find my fatigue was greater, but that may also be because I had done more chemo overall.

Cheers,
Rob
39M Australia
2018 Dx RC, 12cm from AV
Mod diff, EMVI+, LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then 2.0-3.1. Nov-21: 5.4
11/18 FOLFOX x6
3/19 Liver resection #1
5/19 25x pelvic IMRT radiation
07/19 ULAR w ileo, 1/27 LN+
08/19 Liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection #2
02/20 Ileo reversed
03/20 NED since Dec ‘19
11/21 35mm liver lesion; celiac LN. Some v. small (<2-3mm) lung things
12/21 PVE
1/22 Planned liver & node resection (TBC)

User avatar
Rob in PA
Posts: 2012
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Stage lll now stage IV, looking for guidance

Postby Rob in PA » Tue Dec 07, 2021 6:21 am

I concur with what Rock Robster said....get a liver surgeon involved ASAP. The surgeon may offer suggestions that an onc may not have considered, for example, surgery first and then follow up with chemo. That's if the margins for surgery are okay now.

Liver is the next step for progression so its not that untypical and hopefully you'll find an experienced surgeon.

Best to you and your husband.
Rob in PA
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

Adp0909
Posts: 5
Joined: Thu Jan 07, 2021 3:26 pm

Re: Stage lll now stage IV, looking for guidance

Postby Adp0909 » Tue Dec 07, 2021 5:17 pm

Thank you so much for your replies, it helps a great deal. Pleased to know for the most part we might know what to expect for the Folfiri stage based on his experience with folfox. We do have 1 of 2 liver surgeon conversations booked tomorrow following MRI and biopsy today. Hoping they concur after todays results that surgery is the way forward.

Also curious how they determine how long to do chemo post surgery. Is this a forever thing or if we get clean margins maybe it’s considered mop up again?

Rock Robster- he is MSI and I’d have to look back at additional initial tests for any mutation information - I don’t recall any.

Impressed with your journey Rob in PA - can only pray for the same.

Thank you, thank you.
DH 37yo Dx cc T3N1bMx, Oct ‘20, cea 1.4, Stage IIIb
2/12 nodes positive
11/20 successful sigmoid colectomy clear margins
12/20-5/21 12x adjuvant Folfox last 4 w no oxaliplatin due to counts
2 clear CT scans March ‘21 August ‘21
11/21 Signatera positive :(
Pet, CT, cea 7.1 first time it’s ever been higher than 1.6
MRI confirms small liver mets

radnyc
Posts: 441
Joined: Tue Apr 06, 2010 6:32 pm

Re: Stage lll now stage IV, looking for guidance

Postby radnyc » Wed Dec 08, 2021 7:01 am

Your husband’s situation sounds very much like mine. I’d definitely look into HAI treatment, hepatic arterial infusion, I had it done in NYC at Memorial Sloan Kettering, they’re the leaders in this treatment. They cured me, I’m 11 years out. I’m not sure if there’s a hospital in the Bay Area doing this, but I would definitely consider it. Best of luck.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

Claudine
Posts: 582
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Stage lll now stage IV, looking for guidance

Postby Claudine » Wed Dec 08, 2021 1:54 pm

Onc said it would be harder and supports time off work this time (he never missed a day on folfox but it was hard)


Welcome to the forum, I'm so sorry about the recurrence, but the liver has one advantage over other sites - it can be chopped off and it'll regrow!
Re. Folfiri/Avastin, that's interesting the onc said that; my husband suffered a lot more while on Xelox (and now has permanent neuropathy from it). By comparison, his 18 cycles of F/A were a breeze; and he did not take any time off (for either chemo). Hopefully in 11 years you can post an update like radnyc :)
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 81.1, low 3.2, now 51
Scan 03/19: Multiple small lung nodules, now gone/calcified
L3-L4-L5 fusion surgery and partial corpectomy 05/20
PET 12/17/2021: uptake in upper rectum, colonoscopy next

roadrunner
Posts: 204
Joined: Sun Jan 12, 2020 8:46 pm

Re: Stage lll now stage IV, looking for guidance

Postby roadrunner » Wed Dec 08, 2021 6:24 pm

When you state: “He’s MSI,” that’s potentially a very important point. It may open up significant therapeutic options that many of us can’t access, e.g. immunotherapies. You should definitely have a discussion with your oncologist about the implications of that.
7/19: Rectal cancer: Staged as IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (side effects/reduced size est. 70-75%)
neoadjuvant chemorad 11/19
4 rounds of FOLFOX July-August 2020
ncCR found 10/20; biopsies negative
TAE 11/20, small amount of tumor removed, lung nodules orig id’d 6/20 stable Nov 2020
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
VATS 12/8/21 to remove sub-pleural met 7mm. Considering SBRT for remaining nodule.

boxhill
Posts: 767
Joined: Fri Apr 06, 2018 11:40 am

Re: Stage lll now stage IV, looking for guidance

Postby boxhill » Fri Dec 10, 2021 2:50 pm

I'm assuming that the MSI was a typo and you meant MSS, otherwise there is no way they'd be fooling around with chemo with a person with mets. He'd be going straight to immunotherapy.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
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 LNs 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
6/20 Stop Key
All MRIs NED

roadrunner
Posts: 204
Joined: Sun Jan 12, 2020 8:46 pm

Re: Stage lll now stage IV, looking for guidance

Postby roadrunner » Fri Dec 10, 2021 3:49 pm

Well, it’s worth clarifying, since it’s also in the signature. You never know.
7/19: Rectal cancer: Staged as IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (side effects/reduced size est. 70-75%)
neoadjuvant chemorad 11/19
4 rounds of FOLFOX July-August 2020
ncCR found 10/20; biopsies negative
TAE 11/20, small amount of tumor removed, lung nodules orig id’d 6/20 stable Nov 2020
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
VATS 12/8/21 to remove sub-pleural met 7mm. Considering SBRT for remaining nodule.

Adp0909
Posts: 5
Joined: Thu Jan 07, 2021 3:26 pm

Re: Stage lll now stage IV, looking for guidance

Postby Adp0909 » Sat Dec 11, 2021 10:31 am

You’re probably right. Will update information as we get it back from this larger round of tests for clarity.

For now - we had a positive meeting with a surgeon who can resect this now but does see some benefit in a couple rounds of Folfiri/Avastin to check response of Mets before surgery so that we know it’s “working” post surgery.

Thank you again for all input on chemo tips for this round.
DH 37yo Dx cc T3N1bMx, Oct ‘20, cea 1.4, Stage IIIb
2/12 nodes positive
11/20 successful sigmoid colectomy clear margins
12/20-5/21 12x adjuvant Folfox last 4 w no oxaliplatin due to counts
2 clear CT scans March ‘21 August ‘21
11/21 Signatera positive :(
Pet, CT, cea 7.1 first time it’s ever been higher than 1.6
MRI confirms small liver mets

jens22
Posts: 1013
Joined: Wed Jun 09, 2010 9:26 am
Facebook Username: jspirio
Location: Long Island, NY

Re: Stage lll now stage IV, looking for guidance

Postby jens22 » Sun Jan 02, 2022 6:59 pm

Please Have MSK ) Memorial Sloane Kettering Consult. HAI Liver Pump has been very successful for those with mets to the Liver. You can call them and they will tell you what you need to send to them.
Colonoscopy 3/10 for ? hemmorrhoid.
Diag Colon Cancer 3 days later
Colon Ressection 3/30/10
Stage 3B 5/14 Nodes positive.
Power Port and 7 months of Chemo
Port removed 11/11
8 negative Cat Scans..... 10 years cancer free and Discharged from Sloane Kett!!
Diag age 47 , now 57 Mom of 3 boys.

Adp0909
Posts: 5
Joined: Thu Jan 07, 2021 3:26 pm

Re: Stage lll now stage IV, looking for guidance

Postby Adp0909 » Mon Jan 03, 2022 8:02 pm

Thank you jens22. Based on the several comments here suggesting the same thing I did call. They are unfortunately only doing consults in person so we are thinking through that given I am 8 weeks from my due date and DH doesn’t really want to travel by air during this Covid surge and on his own. I did however find two cancer centers that offer HAI pump in CA so I have reached out to ensure that we should continue down the path of resection this month with continued systemic treatment vs. the addition of the pump. Assuming it’s still recommended even if you’ve had successful resection?

Thanks again!
DH 37yo Dx cc T3N1bMx, Oct ‘20, cea 1.4, Stage IIIb
2/12 nodes positive
11/20 successful sigmoid colectomy clear margins
12/20-5/21 12x adjuvant Folfox last 4 w no oxaliplatin due to counts
2 clear CT scans March ‘21 August ‘21
11/21 Signatera positive :(
Pet, CT, cea 7.1 first time it’s ever been higher than 1.6
MRI confirms small liver mets


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