Stage 4 with single met to liver

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kfrazier
Posts: 3
Joined: Tue Jan 30, 2024 5:52 pm

Stage 4 with single met to liver

Postby kfrazier » Tue Jan 30, 2024 6:36 pm

I debated if I even wanted to post this here, honestly I'm not even sure what I hope to achieve with posting this, I suppose just ranting into the void is the best thing to do right now mentally for me and this group seems wholesome and supportive.

I was originally diagnosed with Stage 1 and ended up with a liver met a year later. it was small 3.2cm on the left side right on the edge of the liver Onc. at the CCF was kind of shocked but it does happen time to time in Stage 1 patients. CEA was elevated at the time before discovery it was sitting at 24.9 right before surgery which was 33 days later it was at 33.4 once it was cut out CEA dropped to 1.

12 glorious months went by cancer free but sure enough on my 1 year mark i had another recurrence this time the spot was even smaller located just above where the last spot was cut out so still on the edge of my liver. it was just about 1cm. only this time blood panels were totally normal, CEA was 1.8 My surgeon and ONC said ooook at this point we need to consider chemo because that spot came from SOMEWHERE. he feels my body is doing a great job on its own by keeping it in the liver but it's time to bring in the guns.

he gave me the choice as i fall into a medical grey area surgery or chemo but he really wanted me to pick chemo, gave me a bunch of science and generally speaking it seems promising to reduce recurrence. here's one of many studies https://pubmed.ncbi.nlm.nih.gov/33977607/ with 5yr OS as high as 85% of course this was in the adjuvant setting my doctor said NO to adjuvant.

he said we need to see your tumor biology and if we see a response then we will we know what my specific cancer looks like and how it reacts, if we go adjuvant we have no clue if it's even helping you and refuses to give chemo without a appreciable benefit.

I asked timelines, he said given the size and the tumor markers I would need to walk around with my eyes closed for a year maybe 2 before i was impacted, so we have tons of time to really make the surgery count.

so here I am with a 3 month course of CAPOX. i had a reaction to the CAPOX today (first infusion) I ended up in some type of panic attack situation where I couldn't breath and as soon as they gave IV Benadryl 50mg within 30 seconds I was able to swallow and breath again. The Onc said he apologizes for the scare but they never know how things react and hope for the best every time. they will administer more steroids and a Benadryl IV now.

my joints are numb, I'm all butter fingers when typing and holding things and I have minor tremors all of which are easily mitigated. I generally feel pretty good other than the cold sensitivity my appetite is voracious!

water taste a little funny but i just put in some water flavoring to fix that. I hate drinking luke warm things to often but i know I need to hydrate. thanks guys for listening.

Pagola44
Posts: 312
Joined: Mon Jul 03, 2023 7:57 pm

Re: Stage 4 with single met to liver

Postby Pagola44 » Wed Jan 31, 2024 6:05 am

Hey Welcome to the forum
I'm so sorry to hear that, going from stage 1 > stage 4 is not common.
Chemo is tough, but there's a good chance it will destroy that liver tumour and you'll go back to being disease free !
There are some really knowledgeable people on this forum whom i'm sure will chime in with their advice
Wishing you the best, keep us updated
29m Male.
DX: CC, Right Hepatic Flexure, 4cm, T3, G2, M0
Stage III3B , Positive lymph nodes: (2/20)
Baseline CEA value: 1.98
LVI and PNI: absent
Surgical margins: clear
No lynch Syndrome or MSI
Primary surgery type: Laparascopic

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Peregrine
Posts: 255
Joined: Tue Mar 01, 2022 1:18 am

Re: Stage 4 with single met to liver

Postby Peregrine » Wed Jan 31, 2024 8:43 am

This looks like what is called "oligometastatic disease", which is considered likely curable by a number of experts. Here is one member who had oligometastatic disease to the liver and was ultimately cured:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=56936&p=451200&hilit=oligo%2A#p451200

kfrazier
Posts: 3
Joined: Tue Jan 30, 2024 5:52 pm

Re: Stage 4 with single met to liver

Postby kfrazier » Wed Jan 31, 2024 1:31 pm

Peregrine wrote:This looks like what is called "oligometastatic disease", which is considered likely curable by a number of experts. Here is one member who had oligometastatic disease to the liver and was ultimately cured:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=56936&p=451200&hilit=oligo%2A#p451200


according to the Onc and the surgeon they are for sure optimistic they are just attempting to run a small experiment and see if they can get some type of response from the tumor. my surgeon actually wanted me to get chemo after the first surgery. now he won't take no for an answer.

even if the spot vanishes which is possible given how small it is. it was just over 1cm, they are still going to cut. because at CCF what they've noticed as that the tumor is in situ despite having a complete radiographic response, and nearly always recurred.

when the surgical option was on the table my surgeon said the amount of liver he needs to remove is so insignificant that he isn't worried about progression. if this was going to progress into other organs it would have done it already and because I've stayed on top of all of this, they have framed my diagnosis as the best possible picture given the situation.

I already got a full PET because my Onc was sure it was somewhere else. but nope, totally clear except the liver spot which had an SUV uptake of 3, so it isn't even that aggressive.

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Rob in PA
Posts: 2022
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Stage 4 with single met to liver

Postby Rob in PA » Wed Jan 31, 2024 4:33 pm

Sounds like you have a great team and are on the right track. Wishing you the best from a fellow liver met survivor.
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

rp1954
Posts: 1846
Joined: Mon Jun 13, 2011 1:13 am

Re: Stage 4 with single met to liver

Postby rp1954 » Wed Jan 31, 2024 4:45 pm

kfrazier wrote:]I was originally diagnosed with Stage 1 and ended up with a liver met a year later...[then]another recurrence... had a reaction to the CAPOX today ... where I couldn't breath ...my joints are numb, I'm all butter fingers... and I have minor tremors

Thanks for your post. Sorry for your setbacks.

it was small 3.2cm on the left side right on the edge of the liver Onc. at the CCF was kind of shocked but it does happen time to time in Stage 1 patients. CEA was elevated at the time before discovery it was sitting at 24.9 right before surgery which was 33 days later it was at 33.4 once it was cut out CEA dropped to 1.

To me, you have probably experienced several system failures that are driven by a number of factors. Often designed for economy and convenience, only a slight part of it yours, rather than for reliability. Std medicine says you were just an unlucky stage 1 pt, too bad.

First is their likely failure to gather adequate baseline blood data. What anomalies were there that were either correctable, treatable and/or monitorable? Might not have seen anything but if you don't look, you won't see much. prior baseline suggestions.

Second is the failure to identify chemisty(s) that might have alter the probability, speed and degree of recurrance or metastasis. Many possibilities, we've little information about your case (yet). Two tissue/blood targetable examples are vitamin D and aspirin, amongst many possibilities.

Third is the failure in monitoring design. Especially since you were stage 1, they will trot out claptrap about de minimis standard monitoring whereas my point of view is that this was a massive design failure at the individual level with about 3-5 doublings of CEA (post surgery #1, your CEA low was ___? e.g. some minimum CEA 0.8 to 3). No telling what other markers would have picked up.

12 glorious months went by cancer free

*symptom free*, met not detected yet (perhaps not monitored well enough)

he feels my body is doing a great job on its own by keeping it in the liver...

If it's just standard medical advice, your body could do (could have done) even better.

he gave me the choice as i fall into a medical grey area surgery or chemo but he really wanted me to pick chemo, gave me a bunch of science and generally speaking it seems promising to reduce recurrence. here's one of many studies https://pubmed.ncbi.nlm.nih.gov/33977607/ with 5yr OS as high as 85% of course this was in the adjuvant setting my doctor said NO to adjuvant.

he said we need to see your tumor biology and if we see a response then we will we know what my specific cancer looks like and how it reacts, if we go adjuvant we have no clue if it's even helping you and refuses to give chemo without a appreciable benefit.


There is often some tension between testing and treating, but a lot of it is an artifact of "standard" care and much more testing could be accomplished better and/or sooner.
The real problem to me is that they are just now starting to try to get some biological information where substantially more testing should have been done in the first two years.

he said given the size and the tumor markers I would need to walk around with my eyes closed for a year maybe 2 before

You've had one fast CEA rise and one slow CEA rise, with lots of other missing data (nada here).

I would not be so complacent as spin the bottle. I would use a little time to make some efforts to really make the surgery count. Even less informed than we are now, we could do a lot in 6 weeks or several months (before surgery #2). You could do a lot in one day just on better blood testing for the first two blood test levels. (3 levels: "expanded baseline", liquid biopsy, and cytokine+immune function)
To me, the choice of level is a reflection of economic and willing effort available for incremental benefits.
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

kfrazier
Posts: 3
Joined: Tue Jan 30, 2024 5:52 pm

Re: Stage 4 with single met to liver

Postby kfrazier » Fri Feb 02, 2024 4:03 pm

SO to respond they did do some testing, my liver met when they cut it out was fully encapsulated with dense fibrotic stroma, this was the principle reason for no chemo the first time. However even still they can still come back even in the the case of good news. the second tumor looks a lot like the first however it's more obvious they aren't going to do a biopsy as they don't want to disturb anything in the area.

my cytokine immunochemistry was conducted i was CK20 and CDX2 is diffusely positive in tumor cells, and CK7 was negative.

so they understand a bit about my tumor biology but not enough and that is why they are doing chemo, to see if they can get a reaction. I can pull the rip cord anytime I want which gives me piece of mind but obviously i want to do all 3 months if possible. but Dang CAPOX first week of infusion is killer. I have been able to work though despite it. but the general feeling of unwellness sits on me and increases anxiety. also i think my nausea meds enhanced some anxiety as well. Chemo brain seems to be prevalent although that could also be anxiety but simple tasks seem daunting sometimes for me at least on day 4 from infusion, i was told by my ONC and nurse that generally speaking you feel more normal the closer you get to the next infusion lmao.


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