My CRC with liver mets journey

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AlexandraZ
Posts: 178
Joined: Fri Aug 23, 2019 8:25 am

Re: My CRC with liver mets journey

Postby AlexandraZ » Wed Nov 27, 2019 8:19 am

So good to hear an update from you, Gina! Sorry this recovery is taking longer. But man, your body has been through a lot this year! I hope you have lots of cozy plans this Christmas. Honestly, Jesper and I had a pretty cozy time during this last chemo. Christmas movies on Netflix, lots of candles because it starts getting dark around 3pm here, and lots of warm drinks. Sounds like your lake house is the perfect place for that.

Hugs and stars to you from Copenhagen
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

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ginabeewell
Posts: 464
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Dec 09, 2019 4:35 pm

Well, over Thanksgiving weekend, I decided to go back to work the following week - no matter how I felt. I was really starting to get mad at myself and being alone at home didn’t help.

Not sure if it was the act of returning or the fact that I was suddenly 7 weeks out, but I FINALLY feel human again. My appetite was ok for most of the week; then on Thursday i was actually hungry, repeatedly, throughout the day.

This past Friday I had a drain replacement procedure. And Dr Kingham wanted to look for a bile duct leak and put a drain in there too - he’s not happy with the amount still coming out of my drains. Well, the surgeon couldn’t find it, so I woke up to news of there needing to be another procedure - where they go in via endoscopy and put a stent in where my bile duct meets my stomach.

I was there today for follow ups and a meeting with Kemeny to discuss this - and they managed to get the second procedure scheduled tomorrow morning! So we are sticking in NY to get that done.

Dr Kemeny confirmed my last scan was clear, so she’s not worried about me taking time to heal. Sounds like chemo would resume after the holidays. So our trip to Instanbul looks like it’s on! And plenty of holiday eating to get my weight up. : )
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?

stu
Posts: 1383
Joined: Sat Aug 17, 2013 5:46 pm

Re: My CRC with liver mets journey

Postby stu » Mon Dec 09, 2019 4:44 pm

I would love to go there . I watch a lot of TV shows based there .
Glad to hear your good news . Have a great time .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

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ginabeewell
Posts: 464
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Sat Jan 11, 2020 9:49 am

Checking back in with an update:

Istanbul was very cool! We only had three nights and two days there, but the historical sites are concentrated in one area. We hired a guide for half a day and that was the highlight of the trip. The guides in Turkey are required to go to college to get their certification; so she was extremely knowledgeable and was able to provide great context to the beautiful places we saw.

The next day we went to the Grand Bazaar and the Spice Bazaar. We were in search of towels - you would think they would be everywhere in Turkey! - but mostly the offerings included fake designer handbags. We wound up buying a lot of almond-studded Turkish delight.

I was worried about the food, but it was delicious, and I am still thinking about the lamb kebabs on eggplant yogurt I had our first night there (and I don’t even like lamb!).

We walked a TON, and right around this time I started to feel really sore in my muscles and joints too. But it lasted for weeks - in fact I’m still feeling it - and I started to suspect I might not have enough of something in my system. I checked out as low in magnesium and iron and had infusions of both, and am feeling a little better now.

We are on our way to MSK for a big week:
Saturday (today): stent removal procedure
Sunday: CT scan
Monday: appointments with Drs Kemeny and Kingham and hopefully a return to chemo!
Wednesday: drain replacement procedure

My drain output is now down to 5-10 ml a day, very low output. But Kristina, Dr Kingham’s nurse, said she thought he would insist I keep the drain in until it is actually DRY. Ugh!! I guess at least it is moving in the right direction.

Feeling nervous about the CT scan: it’s now been over three months since I had chemo, which feels like too long. Every pain I feel seems like a potential met.

My “cancer buddy” who has pancreatic cancer, got an NED coming out of surgery in early November. But this past week, her cancer markers tripled. She’s resuming chemo and is seriously bummed as she tries to come to grips with it all. “I knew it could come back, but I didn’t think it would be so soon.” I feel terrible for her, and scared for myself, as it is hard to not feel like our fates are intermingled.
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: 608
Joined: Fri Apr 06, 2018 11:40 am

Re: My CRC with liver mets journey

Postby boxhill » Sat Jan 11, 2020 11:13 am

Glad you had a great trip. Hope all goes well this weekend.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
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 lymph nodes 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
8/20 MRI NED

Mohrfamily
Posts: 267
Joined: Tue May 22, 2018 4:04 pm

Re: My CRC with liver mets journey

Postby Mohrfamily » Mon Jan 13, 2020 1:58 pm

ginabeewell wrote:it is hard to not feel like our fates are intermingled.


I like to think of myself as a very empathetic person where DH is concerned. I feel a lot of random things and when I talk to him about it its something that he's feeling or felt. It makes me nervous sometimes.

Recently though DH lost his grandmother, mid week last week. Tough woman, she'd had a stroke and wasn't found for 2 DAYS. Her health improved in the hospital she wanted steak and more importantly to go home and all of the sudden she called in hospice. My husband became freaked out, he's doing well now (seemingly... on the outside) could he just stop progress tomorrow like that. I tried hard to remind and reassure him she was just shy of 85 and her frail body had been through a lot that's different from what he's going through.
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm 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.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

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ginabeewell
Posts: 464
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Jan 13, 2020 6:25 pm

Just wrapped up my day at MSK, and suffice to say it was not the day I expected!

Scanxiety hit in a big way after yesterday's scan - I got so worried I think I freaked my husband out, because I don't usually get that worked up. Going into the day's appointment, we were hoping for 1) a clean scan, 2) clearance to resume chemo and 3) approval for my drain to come out. But that was a tall order so I joked I would be happy with even one of the three.

Dr Kingham came in first and told us the scan looked good. He was optimistic about the drain coming out, but wanted me to maintain Wednesday's appointment with IR - "They will either pull it or reposition it depending on what they see - but even if they do the latter, I would think it would be out within the next two weeks."

Great! I'll take it.

Then Dr Kemeny came in, and after a little check-in, I told her I was hoping to start chemo today. "How long have you been off now?" she asked, and then left the room to look at a calendar. When she returned, she told me that the point of mop up chemo is to start right after surgery, because you don't know what will happen. In my case, it's been more than three months, so she doesn't see the point of resuming chemo. She wants to just monitor me with CT scans every two months.

I about fell off my chair - this is the LAST thing I was expecting!

It feels a little scary - I think the chemo maybe provides a false sense of security - and maybe too good to be true. I'm still trying to process, I guess. Anyway, now trying to decide where to have a little celebratory dinner in light of the news!!
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?

Rock_Robster
Posts: 517
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: My CRC with liver mets journey

Postby Rock_Robster » Mon Jan 13, 2020 7:09 pm

ginabeewell wrote:It feels a little scary - I think the chemo maybe provides a false sense of security - and maybe too good to be true.

Great news! Congratulations :D

I think what you’ve said above is very accurate. I had surgery, did my standard adjuvant chemo, then had another liver resection for a small spot. I asked my onc for more chemo and he refused - he said there is basically no established evidence of any benefit of ongoing chemo (beyond the standard adjuvant) in stage IV once NED, and refused to give it to me. I do think there is a large mental component to this - it’s a terrifying disease and we feel like we should be doing “something”. Sometimes acceptance and doing ‘nothing’ is the hardest part (actually though are you doing something - active surveillance, plus healing and living your life!).

Enjoy the celebration!
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope
09/20 NED (PET)

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ginabeewell
Posts: 464
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Tue Jan 14, 2020 11:17 am

Rock_Robster wrote:I do think there is a large mental component to this - it’s a terrifying disease and we feel like we should be doing “something”. Sometimes acceptance and doing ‘nothing’ is the hardest part (actually though are you doing something - active surveillance, plus healing and living your life!).


That's exactly it. And you know the old "pride comes before a fall" - it's like I don't want to celebrate too much or tell too many people for fear of jinxing it. (Cue my mother telling me she doesn't believe in jinxing, things either happen or they don't - which I KNOW is true, but...)

I was so wired / worried last night I tossed and turned the entire night. Hoping that things sort of settle in today. Tomorrow I'll head to IR for either a drain pull or replacement. I'm almost afraid to hope they will pull it, it would be like all my cancer dreams coming true!
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?

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: My CRC with liver mets journey

Postby juliej » Tue Jan 14, 2020 7:52 pm

ginabeewell wrote:I was so wired / worried last night I tossed and turned the entire night. Hoping that things sort of settle in today. Tomorrow I'll head to IR for either a drain pull or replacement. I'm almost afraid to hope they will pull it, it would be like all my cancer dreams coming true!

Good scan, no adjuvant chemo, and maybe - just maybe - the freaking drain will be coming out too! That's a triple hitter!

Even if they don't pull it tomorrow, he said it'll be out soon so hang it there. Things are looking up - way up!!! :D :D :D

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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ginabeewell
Posts: 464
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Wed Jan 15, 2020 11:18 am

juliej wrote:Good scan, no adjuvant chemo, and maybe - just maybe - the freaking drain will be coming out too! That's a triple hitter!

Even if they don't pull it tomorrow, he said it'll be out soon so hang it there. Things are looking up - way up!!! :D :D :D

Juliej


Thank you - you kept me sane through this journey on more occasions than I can count. Not just as an inspirational story but with real concrete experiences to help me feel like the stuff I was slogging through was truly just temporary. Maybe someone did the same for you, and if they did, you know what a big deal it is. Just wanted you to know how much I appreciated it.
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?

AlexandraZ
Posts: 178
Joined: Fri Aug 23, 2019 8:25 am

Re: My CRC with liver mets journey

Postby AlexandraZ » Thu Jan 16, 2020 7:10 am

So happy for you, Gina!!! What amazing news. :D :D :D :D :D
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

Mohrfamily
Posts: 267
Joined: Tue May 22, 2018 4:04 pm

Re: My CRC with liver mets journey

Postby Mohrfamily » Thu Jan 16, 2020 11:20 am

Gina I worry about the mop up time frame with my hubby he hasn't been back on systemic since before surgery just the hai
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm 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.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

User avatar
ginabeewell
Posts: 464
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Thu Jan 16, 2020 12:23 pm

juliej wrote:Good scan, no adjuvant chemo, and maybe - just maybe - the freaking drain will be coming out too! That's a triple hitter!


The drain is out! And, like yours, my body just sort of pushed it right out when they went to remove it. I wore a tight dress to the office today for the first time in three months. Yippee!
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?

User avatar
ginabeewell
Posts: 464
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Thu Jan 16, 2020 12:30 pm

Mohrfamily wrote:Gina I worry about the mop up time frame with my hubby he hasn't been back on systemic since before surgery just the hai


I can totally appreciate that. As the calendar slipped away while we were waiting on chemo for my drains to be out, I started to get more and more stressed about not starting my mop up chemo. And now that I know I won't have it, I'm sort of terrified - but I know part of the issue is that chemo gives a false sense of confidence that you're at least doing something. I just have to keep reminding myself that the confidence is false.
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?


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