My CRC with liver mets journey

Please feel free to read, share your thoughts, your stories and connect with others!
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:

User avatar
ginabeewell
Posts: 506
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!
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

Claudine
Posts: 538
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 (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: low 3.2, now 81.1
Scan 03/19: Multiple small lung nodules, now gone/calcified
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 06/17/2021: stable

Punky44
Posts: 484
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
Latest update: 6/28/21: Clear CT with CEA 3.1 (attributed to emphysema)

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

User avatar
ginabeewell
Posts: 506
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.
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

boxhill
Posts: 730
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
5/19 MRI stable/NED
Stop Key
All MRIs NED

User avatar
ginabeewell
Posts: 506
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!!
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

Nor Cal
Posts: 25
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. BRAF mutation. CEA 120
July 2020 - July 2021 17 cycles chemo (FOLFOXIRI x9, FOLFIRI x6, 5-FU x2)
December 2020 - February 2021 Radioembolization, Chemoembolization x2

User avatar
ginabeewell
Posts: 506
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!!
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 2 guests