My CRC with liver mets journey

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dmytroua
Posts: 1
Joined: Tue Nov 03, 2020 3:10 am

Re: My CRC with liver mets journey

Postby dmytroua » Tue Nov 03, 2020 3:22 am

Hi Gina, I'm a caregiver for my mom stage 4 crc and our story seems to be very similar to yours. We also had liver resection and first post op ct scan showed 3 new tiny liver mets. It was decided to do 3 cycles of xelox + avastin and then RFA them but scans after chemo was clear so there is nothing to rfa or operate so another 4 cycles and everithing was still clear. Tomorrow we will have ct scan 9 month from beeing ned hope it will come back clear but I'm not sure whats next as mom is still on chemo and struggling with side effects she does not want to be chemo for life. Sorry for my eng :oops:

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ginabeewell
Posts: 552
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Tue Jun 15, 2021 11:13 pm

I made the mistake of not posting here and starting other threads about specific issues so a quick recap:

Kemeny gave the ok to stop chemo in Dec after 3 consecutive clean scans.

Then a questionable scan in March, a trip to Hawaii, and a small met confirmed in April. Dr K talked about one chemo and then ablation, but later decided 4 chemo, a scan, then ablation.

Thanks to WBC I was able to do 2 5FU + Vectibix and 2 Vectibix alone.

Had an MRI and a PET today. Both appear clear! Waiting to hear from MSK what that means: the ablation may not be possible if nothing is visible, and then it seems like we are back to playing a game of Whack a Mole, as this is exactly what happened last time.

I’ve been reading about Signaterra tests. My NW onc said not as helpful for someone like me for whom CEA is very sensitive. But could it be used here to determine if I need to do additional chemo vs break and monitor?

I know it’s ridiculously optimistic but I still feel like I will be well again - just a question of when!
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

Claudine
Posts: 698
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: My CRC with liver mets journey

Postby Claudine » Thu Jun 17, 2021 12:17 pm

I know it’s ridiculously optimistic but I still feel like I will be well again - just a question of when!


I wouldn't call it "ridiculously optimistic", Gina! From many stories I've read, here and in other forums, many folks have to keep hacking away at the beast before it finally succumbs. Look at Stu's mom, she had some recurrences but is now out of the woods. I can totally understand that you'd want it over with now, for good, but I'd say clear scans is great news! Enjoy your summer!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary
Lytic met 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
Multiple small lung nodules (03/19) now gone/calcified
L3-L4-L5 fusion surgery and partial corpectomy 05/20
CEA since 03/19: high 81.1, low 3.2, now 66
MRI 2/11/22: rectal adenocarcinoma pT3 pN0 stage 2A
LAR surgery April 11

Punky44
Posts: 492
Joined: Mon Oct 01, 2018 4:29 pm

Re: My CRC with liver mets journey

Postby Punky44 » Fri Jun 18, 2021 12:01 am

Happy to see this update Gina!
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1; 3.4; 3.0
Latest update: 6/29/22 - Clear CT with CEA 3.0

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

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ginabeewell
Posts: 552
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Fri Jun 18, 2021 11:33 pm

Finally heard from Dr Kemeny’s office: no ablation, continue chemo.

My oncologist at NW had a different perspective: 6 week break, labs after 3 weeks, then a scan. Most likely something would recur, and then ablation or resection would be on the table again.

After my last recurrence, I think I did 8 chemo cycles after my first clean scan. And I still recurred. So is there reason to believe that THIS time the chemo will wipe it all out?

I have labs Monday at 8 and a telemedicine conversation with Dr K at 9. Depending on what she shares as context for her reco, I’ll need to make a to-chemo-or-not decision after that. Hopefully my head will be clearer after this weekend.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

boxhill
Posts: 787
Joined: Fri Apr 06, 2018 11:40 am

Re: My CRC with liver mets journey

Postby boxhill » Tue Jun 22, 2021 3:34 pm

Damn, Gina, you have had a LOT of chemo. It would be so great to be done with it for a good long stretch, if not permanently!
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
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

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ginabeewell
Posts: 552
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Tue Jun 22, 2021 6:29 pm

boxhill wrote:Damn, Gina, you have had a LOT of chemo. It would be so great to be done with it for a good long stretch, if not permanently!


Ha, I know! I’m above 30 rounds now.

Kemeny’s take was that my response to chemo has been so unexpectedly good that she thinks a chance 4 more rounds will wipe it out completely. So I did one yesterday, 3 to go. Then we will stop and see what happens.

Wondering if I go all out this round: diet, acupuncture, supplements, everything I possibly can to knock this out once and for all. But still stay sane!!
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

Nor Cal
Posts: 64
Joined: Sun Dec 06, 2020 8:18 pm

Re: My CRC with liver mets journey

Postby Nor Cal » Tue Jun 22, 2021 7:18 pm

ginabeewell wrote:
boxhill wrote:Damn, Gina, you have had a LOT of chemo. It would be so great to be done with it for a good long stretch, if not permanently!


Ha, I know! I’m above 30 rounds now.

Kemeny’s take was that my response to chemo has been so unexpectedly good that she thinks a chance 4 more rounds will wipe it out completely. So I did one yesterday, 3 to go. Then we will stop and see what happens.

Wondering if I go all out this round: diet, acupuncture, supplements, everything I possibly can to knock this out once and for all. But still stay sane!!


Are you able to still stay on schedule with Folfiri? All of mine are delayed at least one week due to low platelets. Also had one case of neutropenia. Not sure if there's anything I can do for the platelets.
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. CEA 120.
BRAF+ TMB 5% MSS TDL1-1%
July 2020 - Present: 34 cycles chemo (All the various 5-FU regimens)
December 2020 - February 2021 Y90 Radioembolization, Chemoembolization x2

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ginabeewell
Posts: 552
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Tue Jun 22, 2021 9:51 pm

Nor Cal wrote:
Are you able to still stay on schedule with Folfiri? All of mine are delayed at least one week due to low platelets. Also had one case of neutropenia. Not sure if there's anything I can do for the platelets.


I took neulasta when I was on FOLFIRI which helped, but I had a tough time tolerating it. So we dropped it after 8 cycled and I have done my last few without irinotecan and with just 5FU and Vectibix. I’ve done all kinds of combos and it seems like Vectibix is the magic drug for me; works better than irinotecan. (I did 4 FOLFIRI, 4 FOLFIRI + Vectibix, 4 5FU + Vectibix - and after seeing all the results Dr K and I agreed it seems to be the last combo that works best at the lowest toxicity.)

I should add that lately I’ve had to alternate full cycles with Vectibix only because my WBC is low and they don’t want my body to be dependent on neulasta.

And yeah, I’ve had low platelets and not much you can do about that but wait. I tried slamming juices etc to no avail!!
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

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ginabeewell
Posts: 552
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Sat Jul 16, 2022 4:07 pm

I've been neglecting updating this thread for a while, posting instead on separate threads that are more specific to what I am going through.

My latest update (already shared) is that my June 2022 scan picked up a spot where I had radiation this past November, so I am headed next week to MSK for an ablation.

I've also taken my Facebook support group and converted it into a live blog, so that it can be read / accessed by anyone. I recently added a page that shares the bare bones of my diagnosis and treatment to make it easier to follow all the specifics, and it can be found here:

https://www.weareallmadeofstars.net/col ... nt-journey
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

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ginabeewell
Posts: 552
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Sat Jul 30, 2022 11:54 pm

Monday’s ablation was successful - yay!!

Got the official biopsy report today: both the tumor cite and margin around it (10mm) were negative for malignancy. And the PET scan directly after was clear, too - will rescan in a month, but I’m feeling really optimistic.

With my blog now live, I’m starting to want to post links to updates I think may really resonate, and I have a doozy from last night. Of course feeling good about the result, but with spiking liver enzymes, I am back on pump steroids, and man… has it been messing with me!

If misery loves company, please be my guest! LOL

https://www.weareallmadeofstars.net/pos ... -star-save

(Earlier posts give more detail on the ablation - including a pregnancy scare - which may also be of interest, and cause yourself to ask why there hasn’t been a cancer-focused dramedy out there yet? Because I think this past week and a half gave us at least three episodes!)
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts


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