My CRC with liver mets journey

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Gravelyguy
Posts: 151
Joined: Thu Jul 05, 2018 6:03 pm

Re: My CRC with liver mets journey

Postby Gravelyguy » Fri Mar 08, 2019 2:39 pm

It amazes me what people are willing to do for you if you let them in. I have worked for the same school district for over 31 years and been fairly active as not only a teacher but a coach of various sports and volunteer.

When I let my church, school, and teams that I coach know what was going on, the outpouring was nothing short of amazing. My wife put up all of the cards we received around our bedroom on a string so that when I woke up I was reminded of how many people cared for me. The cards wrapped several times around the room by the end of treatment.

We ended up with more meals in the freezer than we could ever eat. People came and plowed snow and cut wood. It was an overwhelming experience to have that many people show that they care. I vowed not to wait until things were bad to show that I care for people.

Glad you were able to share what you are going through!
6/17 dx mCRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!

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

Re: My CRC with liver mets journey

Postby juliej » Fri Mar 08, 2019 5:28 pm

ginabeewell wrote:I feel so lucky to work in an organization that honors this type of experience and is supporting me through it. The folks in the NY office (whom I don't know as well) were all asking what they could do while I was in town for surgery. I told them find me good bone broth for my post surgery liquid only diet! They also promised to figure out business reasons for me to be in NY so they my company covers my travel for upcoming chemo treatments there. : )

This is brilliant! Kudos for them for supporting you in every way possible!

You'd be amazed at how many stories I've heard on this forum about companies abandoning/firing employees as soon as they found out they had stage 4 cancer. It's technically illegal, but is a chemo-stricken patient who's worried about just being alive next year really going to sue them? That's what they count on. I hope your company is rewarded with lots of good karma (and those other companies get what's coming to them! :evil: ).

Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 2/1/2019, CEA<1

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ginabeewell
Posts: 177
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Fri Mar 08, 2019 7:36 pm

My CEO has been nothing short of incredible. She's the one who convinced me to go to the doctor in the first place.

And once diagnosed she's given me all kinds of gifts with stars, my healing icon: light fixtures she had hung in my office, a cashmere sweater with stars on it, a star-shaped purse filled with "what I love about Gina" notes to read at chemo. She even gave me a Dyson heater / air purifier so I would be warm and my office germ free. And then she gave 30 other senior leaders the same thing - so that any office I visited would be purified. I mean, who does that??

I've only worked with her for 3 years and been her direct report for 1. But she will have my loyalty forever!

The rest of her team is following her lead in terms of support, Meal train meals, etc. I've worked at this company my whole career, just shy of 25 years. So I have lots of folks who love me there, and it is keeping me energized to be supported by them.
45 year old mom of twins (7) and lucky stepmom of 13 and 15 year olds
9/11/18 colonoscopy
9/17/18 DX stage 4 CRC with inoperable liver metastasis (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan picked up typhlitis - hospital stay for 7 days - but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6!
1/14/18 Resume chemo (rounds 6-8)
3/27/19 Surgery: HAI pump placement / colon resection; liver resection to follow
CEA 2.6!!

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ginabeewell
Posts: 177
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Mar 11, 2019 8:21 am

We are in NY today for pre-surgical consults with Drs Kingham and Patey.

Did it right - came in early yesterday, had lunch at Lupa (sat next to Anthony Edwards and the woman who played a mess on St Elmo's Fire) and had an excellent meal before doing some shopping (two knit blazers that have been haunting me on Facebook) and seeing Mean Girls. The big surprise at Mean Girls was an appearance by Tina Fay afterwards! So great, I am not a big Broadway fan. But my husband insisted and I am glad he did.

We just ordered Ess-a-Bagels to pick up en route to MSK (and a dozen to take home).

Hoping for a good day today and clarity moving forward.
45 year old mom of twins (7) and lucky stepmom of 13 and 15 year olds
9/11/18 colonoscopy
9/17/18 DX stage 4 CRC with inoperable liver metastasis (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan picked up typhlitis - hospital stay for 7 days - but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6!
1/14/18 Resume chemo (rounds 6-8)
3/27/19 Surgery: HAI pump placement / colon resection; liver resection to follow
CEA 2.6!!

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juliej
Posts: 2952
Joined: Thu Aug 05, 2010 12:59 pm

Re: My CRC with liver mets journey

Postby juliej » Mon Mar 11, 2019 6:39 pm

ginabeewell wrote:We are in NY today for pre-surgical consults with Drs Kingham and Patey.

I was just in for pre-surgical testing for removal of my HAI pump. :D

The nurse who did the exam said she got "goosebumps" when she read my file and realized how far I had come -- from Stage 4b with multiple mets to my liver and my lungs and a 5% chance of survival to making the arrangements for the removal of my HAI pump and chemo port because I am NED. She hugged me and ask if she could tell my story to others. I was like, "Are you kidding???"! It's everything I can do not to shout it from the top of the Chrysler building! :D :D :D

Gina, this will be your story too in a little while. Hang in there! Be as strong mentally, physically, and spiritually as you can before the surgery and let the excellent MSK docs do their thing!

Hugs to you!
Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 2/1/2019, CEA<1

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ginabeewell
Posts: 177
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Mar 11, 2019 7:42 pm

We had a really good day today.

Another consult with Kingham but no real new information. He did say I had a "normal" artery flow which not many people actually do, and was happy about that. He confirmed he will do the procedure laparoscopically and thought Dr Paty would as well.

We met Dr Paty for the first time and thought he was really great in terms of bedside manner etc. He started by sharing a similar case and warning us about the possibility he may want to remove ovary and/or uterus if the tumor is near that area. Yikes, we were not expecting to hear that but ok.

Then he did an impromptu colonoscopy - my first enema ever - and took a look at the colon. He seemed shocked that the tumor there was gone. Only a circle of scar tissue remained. He and his fellow were clearly super excited and said it was more evidence of phenomenal response to the chemo.

He cited my last CEA score of 5 down from my initial measure at 941 and said, that suggests there is just not much active cancer left in your system.

Just now our new labs from the day came back, and it is at 2.6!

And someone else offered us an apartment - after leaning the original apartment wouldn't be available the first week we were there.

All feels like we are moving in the right direction!
45 year old mom of twins (7) and lucky stepmom of 13 and 15 year olds
9/11/18 colonoscopy
9/17/18 DX stage 4 CRC with inoperable liver metastasis (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan picked up typhlitis - hospital stay for 7 days - but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6!
1/14/18 Resume chemo (rounds 6-8)
3/27/19 Surgery: HAI pump placement / colon resection; liver resection to follow
CEA 2.6!!

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ginabeewell
Posts: 177
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Mar 11, 2019 7:54 pm

juliej wrote:Gina, this will be your story too in a little while. Hang in there! Be as strong mentally, physically, and spiritually as you can before the surgery and let the excellent MSK docs do their thing!

Hugs to you!
Juliej


I do think it will be my story! I have a strong feeling this will work, and have felt this way since I first read about the HAI pump just weeks after diagnosis. We will look so cute on their success story brochure right?!
45 year old mom of twins (7) and lucky stepmom of 13 and 15 year olds
9/11/18 colonoscopy
9/17/18 DX stage 4 CRC with inoperable liver metastasis (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan picked up typhlitis - hospital stay for 7 days - but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6!
1/14/18 Resume chemo (rounds 6-8)
3/27/19 Surgery: HAI pump placement / colon resection; liver resection to follow
CEA 2.6!!

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ginabeewell
Posts: 177
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Mar 25, 2019 8:34 am

We are in New York! Surgery scheduled for Wednesday.

Brought all the kids (it’s their spring break) and have been playing tourist. The apartment we were loaned is incredible: 3 bedroom, 3 bath, on the edge of Central Park with the most amazing views and a playground right across the street.

The first day we did some walking and had a crazy dinner at Bar Masa where our pickiest eater tried everything including sashimi and uni (sea urchin) with black truffle. The kids were all in great moods and it is a dinner we will remember forever.

Yesterday we did MOMA, hand-ripped Chinese noodles for lunch, shopping for the teens, and pizza and pasta for dinner at a neighborhood place. I broke down and cried for about 20 minutes at MOMA - I hate that our family has to go through this. My husband and stepdaughter hugged me through it.

I’m nervous about surgery but so glad to be able to spend all this time with my husband and the kids.
Last edited by ginabeewell on Mon Mar 25, 2019 9:27 pm, edited 1 time in total.
45 year old mom of twins (7) and lucky stepmom of 13 and 15 year olds
9/11/18 colonoscopy
9/17/18 DX stage 4 CRC with inoperable liver metastasis (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan picked up typhlitis - hospital stay for 7 days - but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6!
1/14/18 Resume chemo (rounds 6-8)
3/27/19 Surgery: HAI pump placement / colon resection; liver resection to follow
CEA 2.6!!

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LPL
Posts: 595
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: My CRC with liver mets journey

Postby LPL » Mon Mar 25, 2019 3:35 pm

ginabeewell wrote:We are in New York! Surgery scheduled for Wednesday.

Brought all the kids (it’s their spring break) and have been playing tourist. The apartment we were loaned is incredible: 3 bedroom, 3 bath, on the edge of Central Park with the most amazing views and a playground right across the street.

The first day we did some walking and had a crazy dinner at Bar Masa where our pickiest water tried everything including sashimi and uni (sea urchin) with black truffle. The kids were all in great moods and it is a dinner we will remember forever.

Yesterday we did MOMA, hand-ripped Chinese noodles for lunch, shopping for the teens, and pizza and pasta for dinner at a neighborhood place. I broke down and cried for about 20 minutes at MOMA - I hate that our family has to go through this. My husband and stepdaughter hugged me through it.

I’m nervous about surgery but so glad to be able to spend all this time with my husband and the kids.

Oh Gina I understand the mixed feelings of experiencing nice things (including a wonderful apartment!) and having to think about upcoming surgery. I will be keeping my fingers crossed for a successful day for you on Wednesday!!!
All my Best wishes sent to you <3
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 for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

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juliej
Posts: 2952
Joined: Thu Aug 05, 2010 12:59 pm

Re: My CRC with liver mets journey

Postby juliej » Tue Mar 26, 2019 5:40 pm

ginabeewell wrote:We are in New York! Surgery scheduled for Wednesday.

Brought all the kids (it’s their spring break) and have been playing tourist. The apartment we were loaned is incredible: 3 bedroom, 3 bath, on the edge of Central Park with the most amazing views and a playground right across the street.

The first day we did some walking and had a crazy dinner at Bar Masa where our pickiest eater tried everything including sashimi and uni (sea urchin) with black truffle. The kids were all in great moods and it is a dinner we will remember forever.

Yesterday we did MOMA, hand-ripped Chinese noodles for lunch, shopping for the teens, and pizza and pasta for dinner at a neighborhood place. I broke down and cried for about 20 minutes at MOMA - I hate that our family has to go through this. My husband and stepdaughter hugged me through it.

I’m nervous about surgery but so glad to be able to spend all this time with my husband and the kids.

I was at MOMA when I got the call from Dr. Kemeny that her team wanted to do the surgery on me. It was everything I could do not to fall to my knees in front of Monet's Water Lilies paintings (and all the tourists) and start crying. I will never forget that day if I live to be 100.

You got this, Ginabeewell!!! You're about to start down a path that will lead to the end of your cancer nightmare. Try meditating before the surgery and ask a higher power to guide your surgeon's hands so you have the best possible outcome. I'll be thinking of you and sending many good thoughts your way!

xoxo,
Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 2/1/2019, CEA<1

stu
Posts: 1065
Joined: Sat Aug 17, 2013 5:46 pm

Re: My CRC with liver mets journey

Postby stu » Tue Mar 26, 2019 5:52 pm

All the very best for your surgery .

Hope it all goes smoothly . Looking forward to hearing you are safely through the other side and onto full recovery .

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 .

Mohrfamily
Posts: 98
Joined: Tue May 22, 2018 4:04 pm

Re: My CRC with liver mets journey

Postby Mohrfamily » Wed Mar 27, 2019 10:29 am

Saying a prayer for you now and also my hubby gets to this point as well. He isn't ruling out MSK because he's still responding to chemo (slowly) but with its risks and worry about if something were to happen 950+ miles away he still is committed that if it's absolutely necessary he'll go to MSK.

I feel MSK would be a no brainer but I understand his concern as long as he didn't completely closer the door on Kemeny. Good vibes and so happy for you and your family.
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.

brokenwings
Posts: 56
Joined: Mon Jan 07, 2019 1:50 am

Re: My CRC with liver mets journey

Postby brokenwings » Wed Mar 27, 2019 10:37 am

Thinking of you and sending you positive vibes!

Hugs.
DX January 2019
Adenocarcinoma - Sigmoid colon
Met to right ovary or borderline cyst?
Obstruction during hospital stay, just after colonoscopy. Emergency surgery. Temporary colostomy. Primary tumour still there (French protocol...)
Folfirinox: 4 cycles
CT Scan/PET Scan: ok for surgery
Surgery (CRS + HIPEC) scheduled for 04/29: let's hope my surgeon doesn't find any nasty surprises when he opens me up...
Nasty surprises found: peri mets all over my colon, irresectable.
2nd ptotocol: IP chemo + IV chemo.

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ginabeewell
Posts: 177
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Thu Mar 28, 2019 11:13 am

Surgery went well yesterday, both surgeons are happy.

The pump placement went first and sounds like it went flawlessly, with the blue dye flowing to the liver and nowhere else.

The colon resection turned out to be a little trickier, they ended up having to remove one ovary.

They started me on a very low dosage of pain medication because I have only one kidney, so between that and a nurse who wasn’t getting my signals, it was an excruciating night. They finally got things sorted out this morning and I feel much better and have been able to get up, go to the bathroom, etc. Still don’t feel like eating but Dr Kingham said to take my time with that.

All in all feeling glad to have surgery behind us!
45 year old mom of twins (7) and lucky stepmom of 13 and 15 year olds
9/11/18 colonoscopy
9/17/18 DX stage 4 CRC with inoperable liver metastasis (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan picked up typhlitis - hospital stay for 7 days - but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6!
1/14/18 Resume chemo (rounds 6-8)
3/27/19 Surgery: HAI pump placement / colon resection; liver resection to follow
CEA 2.6!!

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LPL
Posts: 595
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: My CRC with liver mets journey

Postby LPL » Thu Mar 28, 2019 11:41 am

Thank you for udate Gina !
I have been thinking about you and I’m glad it sounds as you are ok after having had this surgery. I hope the pain will go away soon and you will have a speedy healing !!
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 for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets


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