My CRC with liver mets journey

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ginabeewell
Posts: 239
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Tue Jun 04, 2019 9:39 pm

Pyro wrote:I’ve been here a couple of times, cannot recommend it enough, it’s on the NE side of the island:
Taormina

https://en.m.wikipedia.org/wiki/Taormina


We went there on our last trip - maybe 15 years ago. Loved it!
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

Lee
Posts: 5938
Joined: Sun Apr 16, 2006 4:09 pm

Re: My CRC with liver mets journey

Postby Lee » Tue Jun 04, 2019 10:47 pm

TOTALLY enjoy your upcoming vacation, looks AWESOME!!

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Mohrfamily
Posts: 114
Joined: Tue May 22, 2018 4:04 pm

Re: My CRC with liver mets journey

Postby Mohrfamily » Wed Jun 05, 2019 4:43 am

I hope you have a happy birthday Gina! I'm so jealous of your trip but I'm afraid of flying... So is DH lol but this year we've planned a bunch of mini trips.

From 1 mom to another huge kudos on someone else doing most of the cooking :wink:
DH dx officially stage IV with liver mets largest measuring 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
4/3/19 consult radiologist for possible radiation treatment.

Danielito82
Posts: 28
Joined: Sat Aug 11, 2018 1:53 pm

Re: My CRC with liver mets journey

Postby Danielito82 » Wed Jun 05, 2019 9:02 am

Enjoy your holiday and don't forget " la granita e brioche "

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LPL
Posts: 649
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: My CRC with liver mets journey

Postby LPL » Wed Jun 05, 2019 12:24 pm

Gina I loved to hear about your plans :)
Wishing you a wonderful time with your family!
Wow a personal Chef included!! :lol:
Happy birthday!
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb lung met

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Maggie Nell
Posts: 1117
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: My CRC with liver mets journey

Postby Maggie Nell » Sun Jun 16, 2019 1:31 am

Going to post some holiday snaps?
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
July 2019 : pending liver U/S, colonoscopy
rut roh

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ginabeewell
Posts: 239
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Sun Jun 16, 2019 5:56 am

Maggie Nell wrote:Going to post some holiday snaps?


Yes if I could figure out how?? We are on our way back now, it was a really wonderful holiday. : )
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

User avatar
ginabeewell
Posts: 239
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Sun Jun 16, 2019 6:10 am

Pyro wrote:I’ve been here a couple of times, cannot recommend it enough, it’s on the NE side of the island:
Taormina

https://en.m.wikipedia.org/wiki/Taormina


I was wrong, we only made it as far as Cefalu last trip. We did spend our last day in Taormina this time; it was beautiful! We had a lovely lunch overlooking the sea, then walked around for a few hours. It was super hot or I think the kids would have lasted longer. The retail was a little too high end for them (and to be honest, for me too - much as I would have loved a Pucci bikini and a set of Jimmy Choo slides to match!!). But I’m very glad we had a chance to make it there!

And I did some damage in duty free at the La Mer counter at Heathrow today. This Vectibix rash is really driving up my personal care budget...
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

Pyro
Posts: 259
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: My CRC with liver mets journey

Postby Pyro » Sun Jun 16, 2019 7:33 am

ginabeewell wrote:
Pyro wrote:I’ve been here a couple of times, cannot recommend it enough, it’s on the NE side of the island:
Taormina

https://en.m.wikipedia.org/wiki/Taormina


I was wrong, we only made it as far as Cefalu last trip. We did spend our last day in Taormina this time; it was beautiful! We had a lovely lunch overlooking the sea, then walked around for a few hours. It was super hot or I think the kids would have lasted longer. The retail was a little too high end for them (and to be honest, for me too - much as I would have loved a Pucci bikini and a set of Jimmy Choo slides to match!!). But I’m very glad we had a chance to make it there!

And I did some damage in duty free at the La Mer counter at Heathrow today. This Vectibix rash is really driving up my personal care budget...


Did you go to the ruins above the town? I spent most of my time at the end of the town, on the water, people watching and buying up the paintings the local artists complete right there. I was amazed how the locals dressed, to the 9’s even if they are just walking around. Sicily to Heathrow? Yikes, it’s that the long way home? I was lucky and flew my own airplane into Sicily the few times I was there, we came home through the Azores. Definitely recommend the Azores, but it’s out of the way for most travelers.
Aug 2015- Diag Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail, CEA @36
Jun 2019 - FOLFURI until I can’t stand it

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ginabeewell
Posts: 239
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Sun Jun 16, 2019 9:56 am

Pyro wrote:Did you go to the ruins above the town? I spent most of my time at the end of the town, on the water, people watching and buying up the paintings the local artists complete right there. I was amazed how the locals dressed, to the 9’s even if they are just walking around. Sicily to Heathrow? Yikes, it’s that the long way home? I was lucky and flew my own airplane into Sicily the few times I was there, we came home through the Azores. Definitely recommend the Azores, but it’s out of the way for most travelers.


No ruins for us - I think the kids were historically weary by the time we were on our last day! So we just ate and wandered the main drag.

My husband and I are both Exec Platinum with American Airlines so we wanted to fly AA to Europe to use our systemwide upgrades and ideally requalify for next year. London proved to be cheapest / easiest of the possible routes - and no red eyes. We booked direct to LHR and then took Norwegian Air to Sicily and British Air back to London. The Sicily flights departed from / returned to Gatwick so we had some crazy transfers and two overnights in London airport hotels, too. Thank goodness the kids are such good travelers, they were total troopers on not much sleep!

Last year my husband and I did an end of year weekend in Hong Kong to maintain status and the year before it was Dubai. Guessing we will do it again if I feel ok. Having status makes a big difference when you travel regularly. I actually was super sick in Hong Kong - I suspect I had an infection by then that got diagnosed two weeks later - so if I can manage that I feel like I can manage anything. We just see where is cheapest for max qualifying miles and make it happen. Lately it really feels like life is too short!
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

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DocSavage
Posts: 45
Joined: Wed Jun 08, 2016 5:00 pm

Re: My CRC with liver mets journey

Postby DocSavage » Sun Jun 16, 2019 6:20 pm

Gina -

Thank you for posting about your ‘journey’. My first go round I found it so helpful to get at least an idea what is happening and how to cope. It made it a lot less scary.

Having said that - it seems much more complicated when you have a recurrence with liver mets or even just liver involvement!

Keep us posted....

Onward through the fog.

-Andy
Embrace The Suck
Diagnosed at age 61 - Male
DX: CC 05/19/2016
Tumor Location: sigmoid colon
Tumor type: Adenocarcinoma
Tumor size: 3.9cm
Tumor grade: G2: Moderately differentiated (intermediate grade)
TNM code: T3N2aM(N/A)
Stage: Stage IIIc
Positive lymph nodes: 4 out of 26
Mets: N/A
Baseline CEA: 1.7
Surgical margins: clear
Primary surgery type: laparoscopically assisted sigmoid-colectomy 06/01/2016
FOLFOX started 06/22/2016
NED: 12/14/2016

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ginabeewell
Posts: 239
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Jun 17, 2019 2:08 pm

Just got my CT scan results to see progress after 2 rounds of pump chemo and 3 of systemic.

No change.

Ugh.

Dr Kemeny sat with us, and we reviewed my scan history. I had such great initial response but it seems to have plateaued now, and the pump chemo didn’t do much to improve it. We discussed the pros / cons of upping dosage or adding Oxi back into the mix - but with a scheduled surgery and just one treatment beforehand, the cons seem to outweigh the pros.

Dr Kingham thinks he can still operate but will have to do two surgeries instead of one. And it’s hard not to look back at the last five rounds of chemo and wonder why we bothered.

Dr Kemeny points out that stable is good / better than progression. Yes I suppose so. But hard not to Monday morning quarterback. Was it taking Oxi out of the mix? Discontinuing the Chinese supplements?

In truth the plateau started to happen Dec / Jan / Feb when I was off chemo for 7 weeks due to infection and then resumed for a treatment or two pre-surgery. I was on supplements at the time so at minimum I guess we can assume they didn’t work alone.

I’ve had such good response thus far that it’s throwing me for a loop to not continue in that vein, even though I can see from many journeys that’s it’s almost never a straight line. Mostly just trying to process I guess.

Liver resection surgery #1 planned for July 17th. It will be a combo of cutting, ablation and microwave heat and remove 10-15% of the liver - all of this on the sides of the liver. The next one would focus on the big mets in the middle of my liver about three months later. I’ll do my last pre-surgery chemo (pump chemo) this afternoon.
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

Pyro
Posts: 259
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: My CRC with liver mets journey

Postby Pyro » Mon Jun 17, 2019 2:43 pm

The Oxi is terrible, worst chemo I’ve ever tried. It works though and I’m guessing you could go back on it.
Aug 2015- Diag Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail, CEA @36
Jun 2019 - FOLFURI until I can’t stand it

User avatar
ginabeewell
Posts: 239
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Jun 17, 2019 3:18 pm

Pyro wrote:The Oxi is terrible, worst chemo I’ve ever tried. It works though and I’m guessing you could go back on it.


Dr Kemeny said she didn’t want to introduce it prior to surgery because it could damage the liver too much. I will bring it up again after surgery. Or maybe I’ll move to FOLFIRI by then.
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

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LeonW
Posts: 355
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: My CRC with liver mets journey

Postby LeonW » Mon Jun 17, 2019 5:02 pm

ginabeewell wrote:Dr Kemeny said she didn’t want to introduce it prior to surgery because it could damage the liver too much..

That's consistent with the approach of my surgeons took (though I had Oxi in mix): my liver surgery was 2½ month after end-of-chemo

Sorry to hear that the chemo stopped being effective.
Best wishes L
Dec 2012 - CC, 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen, 2/26 nodes, IVa T3N1bM1a MSI-low
Feb-Aug - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Sept - 2 failed PV embolizations
Oct 2013 - R liver resect 28d hosp (liver failure/delirium, lung emboli, encephalopathy), cancer dead (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town, new life
June 2018 - 5 yr mark, scopy: 2 new polyps
1.3-1.4 CEA/clean CT: 4x2014, 6x2015-17, 2x2018-19 :D next June 2020


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