Gee it’s quiet here huh…

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Rock_Robster
Posts: 1017
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Gee it’s quiet here huh…

Postby Rock_Robster » Wed Jan 03, 2024 1:13 am

Everyone doing OK out there? Hope this means you’ve all been distracted spending the holiday season with loved ones, or doing something you enjoy!

Rob
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

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

Re: Gee it’s quiet here huh…

Postby Pagola44 » Wed Jan 03, 2024 7:43 am

Hey Rock how you doing?
Happy New Year! :!: :!:

Personally I'm on cycle 8 of 12 FOLFOX
Can't wait to get it done..pretty miserable experience

Hope you're doing well.
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

Rock_Robster
Posts: 1017
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Gee it’s quiet here huh…

Postby Rock_Robster » Wed Jan 03, 2024 8:58 am

Pagola44 wrote:Hey Rock how you doing?
Happy New Year! :!: :!:

Personally I'm on cycle 8 of 12 FOLFOX
Can't wait to get it done..pretty miserable experience

Hope you're doing well.

Nearly there mate! You’re doing well and soon enough this will all be a distant memory.

I’m doing good thanks - back on the weekly FOLFIRI which is a bit rough, but I’m actually feeling heaps better - no more vomiting, way less pain, more appetite and energy. Gained a few kg too. So I’m optimistic that this is doing good things. And the trial hunt restarts again soon…
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

Claudine
Posts: 808
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Gee it’s quiet here huh…

Postby Claudine » Wed Jan 03, 2024 3:48 pm

Well, I was waiting to get results from DH's first cycle on Lonsurf + Avastin before posting, and we just got those today. His onc decided to try this instead of putting him back on Folfiri in the hope that it wouldn't be as taxing on his body, but boy, it was almost as bad (minus the hair loss): extreme fatigue, loss of appetite, diarrhea, nausea... It's pills 5 days on/2 days off/5 days on/16 days off; the first 5 days were ok (luckily, while our daughter was visiting), the second pretty bad. But his CEA dropped significantly, from 28 to 18, which is great news! His onc hopes that the second cycle won't be as bad, but if it is, he'll lower the dosage.
Anyway, here we are nearing 6 years of this mess, but finding happiness in the little things, the shared moments together :D

Thinking of you all XXXXX
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Lonsurf/Avastin 12/23

Rock_Robster
Posts: 1017
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Gee it’s quiet here huh…

Postby Rock_Robster » Wed Jan 03, 2024 8:10 pm

That’s great news about the CEA Claudine!

Lonsurf is indeed a rough drug, but it does anecdotally seem to be doing a lot better recently with Avastin. I think dynamic dosing is super important with these later lines where it’s all about sustainability - if he’s responding well now then that may also be the case with a modest dose reduction, with a lot less toxicities.

We’ve been playing around with the FOLFIRI protocol recently trying to get the same effect.

My body also often does this thing with a new treatment that I call “first round, worst round” - hopefully that’s the same for your husband.

Good luck!
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

Markdale
Posts: 103
Joined: Wed Dec 02, 2020 4:45 pm

Re: Gee it’s quiet here huh…

Postby Markdale » Thu Jan 04, 2024 2:49 am

Hey rob, how are you responding to the treatment? Any shrinkage? How about qol while on continuous chemo?
Happy new year
09/20:Diagnosed after colonoscopy for bleeding.
MRI and ct scan confirmed tumor at rectosigmoid junction aswell as lung nodules in RLL (1X1.2cm) and RUL (3X.5cm)
10/20: LAR tumour t3n2m1 4/24 lymph nodes.
11/20: pet scan confirmed Mets
11/20: folfoxiri - 10/6/21. 12 rounds in total
1/1/21 thoracotomy 1 met removed
2/2022 sabr to 2 lung nodule
09/22 PET scan progression of sabr’d nodules
10/22 phase 1 trial bispecific antibody
9/23 added pd1 blocker
12/23 bilateral VATS all visible (7) lesions removed

Rock_Robster
Posts: 1017
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Gee it’s quiet here huh…

Postby Rock_Robster » Thu Jan 04, 2024 6:25 am

Markdale wrote:Hey rob, how are you responding to the treatment? Any shrinkage? How about qol while on continuous chemo?
Happy new year

Hi Markdale, happy new year! I’m just about to start on the 2nd three-weekly cycle, so haven’t done any new imaging yet but will get some bloods tomorrow which will hopefully be in the right direction. QoL is quite good as I’m only doing ~35% of the irinotecan dose in each of 2 weekly doses out of 3 weeks (I have Gilbert’s Syndrome) - main side effect is just fatigue really, and lots of other things have improved (nausea, pain, appetite etc.). Although I’m not quite sure how this is meant to go with returning to work after the holidays, given I’m now effectively in treatment for 2 out of every 3 weeks! Will have a chat to the boss tomorrow, but thankfully that isn’t my primary concern right now.
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

utahgal7
Posts: 195
Joined: Fri Sep 11, 2020 12:04 pm

Re: Gee it’s quiet here huh…

Postby utahgal7 » Thu Jan 04, 2024 9:49 am

Happy New Year, Rob! I hope 2024 is a good year for you and for all of us. Good luck on FOLFIRI. Hope it is not too rough on you.
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles

utahgal7
Posts: 195
Joined: Fri Sep 11, 2020 12:04 pm

Re: Gee it’s quiet here huh…

Postby utahgal7 » Thu Jan 04, 2024 9:52 am

Claudine,

Sorry to hear about your husband's nausea on Lonsurf/Avastin. That's tough. A cancer friend of mine says Aprepitant really helps her with chemo nausea, although she is not on Lonsurf/Avastin. Maybe this medication could help your husband's nausea and vomiting.
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles

Rock_Robster
Posts: 1017
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Gee it’s quiet here huh…

Postby Rock_Robster » Thu Jan 04, 2024 11:14 am

utahgal7 wrote:Claudine,

Sorry to hear about your husband's nausea on Lonsurf/Avastin. That's tough. A cancer friend of mine says Aprepitant really helps her with chemo nausea, although she is not on Lonsurf/Avastin. Maybe this medication could help your husband's nausea and vomiting.

Aprepitant is great. Even more so when taken as netupitant/palonosetron, branded Akynzeo. I have it before all chemos now.
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

Claudine
Posts: 808
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Gee it’s quiet here huh…

Postby Claudine » Thu Jan 04, 2024 11:36 am

Thanks guys! He's on something that does help with nausea; the main problem is diarrhea - he was finally doing much better with his LARS (1+ year post ileostomy reversal), and now it's back to living on the toilet/wearing Depens... He's taking Imodium, and we've been very careful with food; I hope things improve a bit each day before the next cycle.

I think dynamic dosing is super important with these later lines where it’s all about sustainability

Yep, that's the idea - he's taking the maximum dose right now, but if it hits him as badly the next go around, it can be reduced. Fingers crossed it's like for you and does get better. I hope you get good news and shrinkage/low CEA with your Folfiri experimentation!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Lonsurf/Avastin 12/23

User avatar
O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: Gee it’s quiet here huh…

Postby O Stoma Mia » Thu Jan 04, 2024 11:29 pm

Rock_Robster wrote:Everyone doing OK out there? Hope this means you’ve all been distracted spending the holiday season with loved ones, or doing something you enjoy!

Rob


Yes, I noticed that this message board was particularly quiet from Christmas through New Year's Day.

I was expecting to see some New Year's greetings from old-timers here like weisssoccermom, but nothing showed up on the board. Hopefully everybody is safe and sound and just enjoying the holiday season.

Happy New Year to all, and best wishes for a healthy and happy year.

Take care ...

ӧʂɱ

Siti
Posts: 269
Joined: Thu Aug 01, 2019 10:58 am

Re: Gee it’s quiet here huh…

Postby Siti » Fri Jan 05, 2024 6:51 am

Hi Rob,

Glad to hear you're feeling better and I pray that your current treatment works well again.
I hope you had a good break during the holiday season and wishing you and yours a Happy New Year!

Looking forward to hear good news from you.

Best wishes,
Siti
DH (54) DX on 5/7/19
Sigmoid|G3|LN:30/31|MSS|WT KRAS, NRAS, BRAF
7/19 PET distant LN para-aorta neck hip (0.5-1.5cm)
7/19 Lap resection
26/8 to 20/12/19 CAPEOX+Bev 7x
6/11/19 CT 3 cycle LN shrunk
1/20 Cap+Bev
4/20 TS-1+Bev due to bad HFS
NED 4 years
8/23 PET recurrence chest LN growing since Feb. CEA May(4.5>5.1>5.9)
9/23 Stopped Bev, CEA Sept(8.7) Radio 17x
11/23 PET 1+ supraclavicular LN, CEA (3.4>2.5)
12/23 Lymphadenectomy
1/24 Narrow margins, 1/5 +LN, 1.4cm +tissue, TMB (19)

AmyG
Posts: 371
Joined: Tue Dec 25, 2018 8:08 pm

Re: Gee it’s quiet here huh…

Postby AmyG » Thu Jan 11, 2024 1:30 pm

Howdy strangers!

All is going well in my neck of the woods. Nicholas will be *5* in March. He starts school this fall. Idk what I'm going to do with myself. And to think, at one point we didn't think either of us would survive to even meet. Time is flying by and I'm savoring every minute of it.

The farm is continuing to grow. We put one steer in the freezer, have a pig on the way to the freezer next month and I lucked in to a 2 day old calf this week that will also go in the freezer in about 18 months! I'm overrun with chickens and have plans to start raising heritage breed turkeys this year.

Kids are all doing well, super active in sports. My oldest daughter blessed me with a grandson this year. Both active duty sailors are nearing the end of their enlistments, had another kid graduate high school and she's doing well in college.

As for me, I have my annual scans coming this spring and I'm not overly concerned. Will be nice to hopefully read that I'm "unremarkable" again! I had a Google Photo "Remember This Day" thing pop up on my phone last week, I was BALD and getting chemo. I'm glad I have pictures to remind me of what it was like to be in the trenches of treatment and to see how far I've come since then.
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

Siti
Posts: 269
Joined: Thu Aug 01, 2019 10:58 am

Re: Gee it’s quiet here huh…

Postby Siti » Fri Jan 12, 2024 3:31 am

AmyG wrote:Howdy strangers!

All is going well in my neck of the woods. Nicholas will be *5* in March. He starts school this fall. Idk what I'm going to do with myself. And to think, at one point we didn't think either of us would survive to even meet. Time is flying by and I'm savoring every minute of it.

I had a Google Photo "Remember This Day" thing pop up on my phone last week, I was BALD and getting chemo. I'm glad I have pictures to remind me of what it was like to be in the trenches of treatment and to see how far I've come since then.


You’re an inspiration Amy! I’ve been following your journey since my husband was diagnosed in 2019 and loved reading your stories. So nice to hear an update from you again and I wish you NED forever!
DH (54) DX on 5/7/19
Sigmoid|G3|LN:30/31|MSS|WT KRAS, NRAS, BRAF
7/19 PET distant LN para-aorta neck hip (0.5-1.5cm)
7/19 Lap resection
26/8 to 20/12/19 CAPEOX+Bev 7x
6/11/19 CT 3 cycle LN shrunk
1/20 Cap+Bev
4/20 TS-1+Bev due to bad HFS
NED 4 years
8/23 PET recurrence chest LN growing since Feb. CEA May(4.5>5.1>5.9)
9/23 Stopped Bev, CEA Sept(8.7) Radio 17x
11/23 PET 1+ supraclavicular LN, CEA (3.4>2.5)
12/23 Lymphadenectomy
1/24 Narrow margins, 1/5 +LN, 1.4cm +tissue, TMB (19)


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