Liver mets are back; what’s next….

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mwalker
Posts: 10
Joined: Wed Nov 23, 2022 8:37 am

Re: Liver mets are back; what’s next….

Postby mwalker » Thu Feb 02, 2023 8:22 am

OK, so this is a bit shit….

We spoke with a liver transplant surgeon on Monday and he confirmed that surgery is not an option. One of the lesions is right against the primary vein draining the liver. Any damage to that vein is not good.

There is also a difference of opinion between two radiologists as to whether the lesions seen on the live CT during the cancelled ablation are treated disease or disease progression (both her onc and myself believe disease progression).

We have a late scheduled PET-CT tomorrow; this will confirm if the new liver lesions “light up” along with indicating any new possible lesions that may have popped up elsewhere since Dec’22.

Chemo, modified FOLFOX (no Oxaliplatin, no Avastin, no Irinotecan) will begin Monday. (Other chemo drugs will be added as needed after the PET and once a path has been established, there is a focus on QoL)

Recommended treatments moving forward:
CyberKnife then selective SIRT (we have been advised that they can’t do SIRT then CyberKnife)
Surgical RFA (open RFA).

A lot is riding on the PET-CT tomorrow.

I’m guessing she’s not going to be a contender for “Who are the longest stage 4 survivor's on here?”
01/21 DW 54F mCRC IV – MSS KRAS G12S pT4a pN1b pM1c
mets;5 liver,1 lung,1 peritoneal
02/21 high anterior+liver+peritoneal resect+port
02/21 FOLFOX
06/21 chemo pause (8 rnds, 7 +oxi) liver resect - 1 non-resect 4A
08/21 FOLFOX -oxi
08/21 SIRT
10/21 chemo pause - 14 rnds
12/21 Thyroid cancer - second pri – thyroidectomy
03/22 PE (bilateral subsegmental) – Clexane
05/22 SBRT lung met x 4
06/22 Krukenberg tumours - removed, hemoperitoneum+transfusion
10/22 RFA liver
01/23 RFA liver - canned, liver mets

rp1954
Posts: 1863
Joined: Mon Jun 13, 2011 1:13 am

Re: Liver mets are back; what’s next….

Postby rp1954 » Thu Feb 02, 2023 9:19 am

mwalker wrote:Chemo, modified FOLFOX (no Oxaliplatin, no Avastin, no Irinotecan) will begin Monday. (Other chemo drugs will be added as needed after the PET and once a path has been established, there is a focus on QoL

no oxi-, no iri-, no Avastin .... all that is left is basic 5FU - LV with aa loose promise of something as needed.
A lot of approved CRC 3rd-4th line drugs are low performers with side effects. hmmmm

Well, we shrunk, broke up and/or dissolved several 2-3 cm unbiopsied lesions in the liver in the chemo - chemistry iterations after 2nd surgery (months 13-24), perhaps both a surgical benefit with fewer stem cells and cancer enhancing cytokines, and our improving ++ to +++ chemistry, with some very notable nice chemical assault factors.

We may also have damaged these liver lesions in the initial assault the year before 1st surgery, right after diagnosis when our initial (neoadjuvant) immune package apparently generated a huge immune attack, making mush out of a lot of suspicious tissues. The surgeon initially classed my wife as an R2 resection - large leftover residue except they were already necrosed at 4 weeks by a massive granulocytic attack (unusual and weird to drs).

In year 2, our consulting radiologist was impressed about the liver actions, because he marveled about it several times.

1/26 mwalker wrote: I’ve got an s-ton of blood test results; give me a couple of days to collate them.

now or yesterday is the time
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

Rock_Robster
Posts: 1038
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Liver mets are back; what’s next….

Postby Rock_Robster » Thu Feb 02, 2023 6:13 pm

I’m sorry about the news, that is indeed a bit shit.

I had SBRT radiation on a fairly large liver lesion which was hard up against my right hepatic vein - the result of recurrence 2 years after an R1 resection in the same spot. I’m fortunate that my tumour has always been quite radiosensitive but man that stuff blew it out of the water. “Entirely dead” was the assessment on scans about 6 weeks later, and in the view of the oncs that area is the last thing I’m likely to need to worry about. The local control rates from liver SBRT are very good up to at least 2 years out - could be longer but good data gets more limited. It isn’t as good as surgery, but it may not be too far off and is a damn sight better than just chemo. The key is being able to safely get a serious kill dose onto the tumours (I had 100 Gy-equivalent over 3 lesions - techs said it was the highest they’d seen; felt like I’d been hit by a truck, but it’s worked so far). Key is getting a really good rad onc, as there’s some detailed planning required to get the best results without too much collateral damage. Good luck.

PS: just to confirm - CyberKnife is a brand rather than a technology; it’s effectively a type of SBRT/SABR radiation. In the Australian context patients - particularly in WA - will often be pointed to the private CyberKnife clinics in Claremont. CyberKnife was cutting-edge (pun intended) at the time it came out in 2001 and still does very good branding/marketing, but these days it has arguably been surpassed by the newer Varian TrueBeam machines that use the same concept. The main advantages are the ability to deliver larger doses over much shorter periods (so you have far fewer treatment days, and less time for tumour regrowth in between), and the ability to do concurrent cone-beam scanning which can reduce the need for fiduciary markers and (potentially) improve treatment accuracy and effective dose delivered. You do need to be immobilised more as it doesn’t do live tumour tracking, but this isn’t typically a big issue for livers where breath-hold (exhalation) is typically sufficient (and Varian have a visual breathing tracking system too which works very well). If you’ve been referred for CyberKnife, I would also have a consult somewhere like Icon or GenesisCare (or one of the major public hospitals like SCGH) that all use the newer machines to compare what they’re offering you. Overall results don’t appear to differ greatly on average, but the patient experience and impact might.

To give you an idea of their marketing reach - I even had one doctor in Brisbane suggest I fly 5 hours to Perth to get CyberKnife, when I live 15 mins from an Icon centre that has Varian equipment. SMH.

PPS: there are things that can be done surgically with tumours that abut veins - eg removing entirely, or reconstructing the vein. I’m not saying it’s necessarily the best idea, but make sure the surgeon you’re talking to has all these tools in their bag - many don’t. Ideally head of HPB or Upper GI at major public teaching hospital or cancer centre would be the way to go. I can suggest some east coast names if you don’t mind a plane ride.

One other dimension to consider is that you can do SBRT/SABR after surgery, but once you’ve had SBRT/SABR most surgeons would want to wait at least ~6 months before operating/ablating on the same organ - so sequencing of options can be important.
Last edited by Rock_Robster on Fri Feb 03, 2023 7:31 pm, edited 2 times in total.
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

stu
Posts: 1614
Joined: Sat Aug 17, 2013 5:46 pm

Re: Liver mets are back; what’s next….

Postby stu » Fri Feb 03, 2023 5:56 pm

It sucks the life out of you to see someone you love hit these bumps on the road .
But just to encourage you my mum was inoperable not once but twice . The second time it was abutting a large blood vessel . It shrank away in the right direction to allow the skilled surgeon a reasonable margin .
I also credit chemo for doing it’s job well and giving her many good years .

I had days where I just did not think it possible . I decided every day counted in the overall process and we focused on that .
I hope chemo does a good job shrinking in the right direction .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

mwalker
Posts: 10
Joined: Wed Nov 23, 2022 8:37 am

Re: Liver mets are back; what’s next….

Postby mwalker » Tue Feb 07, 2023 9:14 am

Thank you for the sincere replies; rest assured that I follow up any potential lead.

The PET from last Friday shows that the new mets in the liver have lit up (up to SUVmax 10.4) along with new additional peritoneal mets (at least 6; upper left quadrant, right iliac fossa, left iliac fossa, etc) - (mostly around SUVmax 5).

From the CT on the 01/18/23 and the PET/CT on the 02/03/23 (16-days) the liver lesions have all grown between 3-5mm. (18mm -> 21mm; 8mm -> 14mm, you get the picture)

Chemo would’ve restarted Monday; however her onc changed the chemo prescription Sunday evening; she’s now going straight to FOLFIRI+Avastin and that starts tomorrow. When I asked about HIPEC the response was “not right now”.

She had an excellent response to chemo last time; we need the same this time and hopefully a little bit more.

We’ve also contacted Prof David Morris; sent him a lot of details and just awaiting a response; we’ll call his office tomorrow morning.

----------

As for the CyberKnife; we have two locations here, one in Claremont (private) and the other at SCGH (public).

And cheers for the heads up on the TrueBeam (also a registered name) – from what I can tell we have one in Perth (SCGH) and there’s 3 in Australia (the others are in Melbourne and Sydney). From what I now understand is that TrueBeam is much more modern (roughly 10 years) than the CyberKnife; but the difference between the two still mainly depends on the person who is running the machine.

--------

Sucking the life out of you is an apt metaphor. Cars and stuff don’t get the attention they need, lawns don’t get mowed as much as they need to. Home renovations and repairs get pushed back; heck, everything gets pushed back.
01/21 DW 54F mCRC IV – MSS KRAS G12S pT4a pN1b pM1c
mets;5 liver,1 lung,1 peritoneal
02/21 high anterior+liver+peritoneal resect+port
02/21 FOLFOX
06/21 chemo pause (8 rnds, 7 +oxi) liver resect - 1 non-resect 4A
08/21 FOLFOX -oxi
08/21 SIRT
10/21 chemo pause - 14 rnds
12/21 Thyroid cancer - second pri – thyroidectomy
03/22 PE (bilateral subsegmental) – Clexane
05/22 SBRT lung met x 4
06/22 Krukenberg tumours - removed, hemoperitoneum+transfusion
10/22 RFA liver
01/23 RFA liver - canned, liver mets

stu
Posts: 1614
Joined: Sat Aug 17, 2013 5:46 pm

Re: Liver mets are back; what’s next….

Postby stu » Tue Feb 07, 2023 10:59 am

You are so correct . It’s hard to keep everything going when processing this information.
Reach out to the people around you to help . Most just don’t know what to do but welcome the opportunity to help out .

Given that she has responded well to chemo initially that’s a strong position to be going back into it .
take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Rock_Robster
Posts: 1038
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Liver mets are back; what’s next….

Postby Rock_Robster » Tue Feb 07, 2023 11:40 pm

No worries at all. For completeness of your list, I believe Icon in Midland and Rocky also have Varian equipment. GenesisCare branches may well also as I believe they have a partnership with them. All the Icon sites here in Brisbane use Varian, along with most of the major public hospitals (RBWH, PA, etc.). You’re hard-pressed to find a CyberKnife facility on this side of things.
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

mwalker
Posts: 10
Joined: Wed Nov 23, 2022 8:37 am

Re: Liver mets are back; what’s next….

Postby mwalker » Sat Mar 04, 2023 12:48 am

So Prof Morris wasn’t able to help; we sent all the stuff they requested (including getting hospitals to rescan unclear operation reports) he did give us a call, however he didn’t appear engaged and basically said there’s nothing they could do.

Her CEA before FOLFIRI+Avastin commenced a couple of weeks ago was 3 (with at least 5 x new liver mets and at least 7 x new peritoneal mets), I’ve got a feeling hypothyroidism effected the CEA as her levothyroxine medication was just bumped from 400mg to 600mg per week just before the CEA blood test.

CEA was 11 in Jan 2021 and 16 in Feb 2021

Onc mentioned there may be a biological change.

Her thyroid cancer (second, primary malignancy) excludes her from pretty much all trials as there was hurthle cell involment.... (it is considered fully treated even without iodine-131 as her TgAb is stable at 0.4 for 12-months, but the trials require 36-months)

On an upside, she appears healthy, she looks good, she is alert and she is doing normal things; she is maintaining her target weight of 48kg. (I’m trying so hard to get her to lift her target weight to 55kg)

Our daughter turns 18 in June, that’s our next target.
01/21 DW 54F mCRC IV – MSS KRAS G12S pT4a pN1b pM1c
mets;5 liver,1 lung,1 peritoneal
02/21 high anterior+liver+peritoneal resect+port
02/21 FOLFOX
06/21 chemo pause (8 rnds, 7 +oxi) liver resect - 1 non-resect 4A
08/21 FOLFOX -oxi
08/21 SIRT
10/21 chemo pause - 14 rnds
12/21 Thyroid cancer - second pri – thyroidectomy
03/22 PE (bilateral subsegmental) – Clexane
05/22 SBRT lung met x 4
06/22 Krukenberg tumours - removed, hemoperitoneum+transfusion
10/22 RFA liver
01/23 RFA liver - canned, liver mets

nmorgen
Posts: 82
Joined: Sat Nov 05, 2022 10:31 am

Re: Liver mets are back; what’s next….

Postby nmorgen » Sun Mar 12, 2023 3:52 am

Sorry to hear you didn’t get the news you were hoping for. Hopefully the folfiri/avastin will knock her cancer back down. Are you still looking at hai pump?
DH age 47
DX 10/22 stage 4
2 tumors in sigmoid colon 2 Mets liver
adenocarcinoma
MSI-H, TMB-H 38, KRAS G13V, ERBB2 neg, BRCA2, Lynch Syndrome
Grade 1 well differentiated
12/1/22 Yervoy and Opdivo CEA 5.4
12/19/22 Yervoy & Opdivo CEA 4.6
01/12/22 Yervoy & Opdivo CEA 3.9
2/13/23 Yervoy& Opdivo CEA 3.4
3/7/23 ct scans no change
3/9/23 Opdivo CEA 3.4
4/4/23 Opdivo CEA 2.3
6/1/23 Opdivo CEA 2.6


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