My CRC with liver mets journey

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AmyG
Posts: 264
Joined: Tue Dec 25, 2018 8:08 pm

Re: My CRC with liver mets journey

Postby AmyG » Thu Jul 18, 2019 8:22 pm

Omg, you had an open resection and you're up and at it already?

Can I get a HOT DAMN up in here??

Tell me all about it, as mine is up and coming. No date yet, but should have one soon.
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

stu
Posts: 1205
Joined: Sat Aug 17, 2013 5:46 pm

Re: My CRC with liver mets journey

Postby stu » Fri Jul 19, 2019 2:42 am

Oh well done Gina . That’s incredibly good news to hear you are safely through the resection .
Doing laps too . What a star .
Wishing you a speedy 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 .

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juliej
Posts: 3048
Joined: Thu Aug 05, 2010 12:59 pm

Re: My CRC with liver mets journey

Postby juliej » Fri Jul 19, 2019 1:10 pm

ginabeewell wrote:Surgery went well yesterday and I was already doing laps today - which I didn’t do after my last surgery for sure! Too bad it’s going to be so insanely hot while I’m supposed to be walking outside!

I’m going to make a few notes just in case we get some reasonable days... and start researching museums in the meantime!!

If I make it to Le Bouchon, I will be getting the foie gras!

Sounds like you're making a fantastic recovery!!! :D

I recommend the American Museum of Natural History. I got a membership there when I was recovering (and still have it) because it was a great place to walk around in both the heat and the cold. There are benches when you need a short rest and food available at several cafes and a cafeteria. The "T Rex" and "Unseen Oceans" special exhibits are both great! And if you've got kids, they'll absolutely love everything there!

Of course, there's the MET but sadly no MoMA right now. However, MoMA PS1 is open (and free on Friday nights from 4:00 to 8:00 pm). And there are many other excellent museums. Try to stay cool and make sure you hydrate!

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 9/23/2019, CEA<1

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Maggie Nell
Posts: 1134
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: My CRC with liver mets journey

Postby Maggie Nell » Fri Jul 19, 2019 5:54 pm

There's the American Folk Art Museum. The Aquarium would be nice and cool on a hot day, although probably
not in walking distance. Not that I would know, never been stateside. :roll:

Great to hear that you're going strong!
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: 322
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Sun Jul 21, 2019 4:49 am

AmyG wrote:Omg, you had an open resection and you're up and at it already?

Can I get a HOT DAMN up in here??

Tell me all about it, as mine is up and coming. No date yet, but should have one soon.


I ran into someone here who had a resection the same day I did. They took 40% of his liver vs 15% of mine, and I’m sure his recovery was impacted by that. He said he was having a really rough time having the energy to walk etc. and it sounds like he keeps in better shape than me, so we chalked up the difference in experience we were having to the relative size of our resections.

I do know that walking during my recovery made a major difference for me, however; so I was very highly motivated to do it! I’m adding four laps a day so I was up to 12 yesterday (3 sets of 4) and will aim for 16 today. Hoping to check out today but I had irregular heartbeats last night so they may opt to keep me one more night.

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ginabeewell
Posts: 322
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Jul 22, 2019 1:42 pm

I did end up getting discharged yesterday (Sun) so it was a day less in the hospital than I had for the colon resection / pump placement.

We are in our friend’s apartment at 94th and CPW. Really she’s just a former colleague of my husband’s, but she saw his post seeking accommodations and said she knew there had to be a reason she saw it. Her daughter went to MSK for treatment when she was only four! She’s been a thoughtful and accommodating hostess.

We just walked from there to a burger place at Columbus and 85th so 10 blocks or so, not nothing in this heat and I thought I might die! I wasn’t much for conversation but we made it and can cab back. I ordered chicken soup and mashed potatoes. I know I need more protein but so far I’m eating what I can get down...

The pain is manageable between Tylenol and Oxi, and I’m trying to limit how much I use the latter. Looking forward to a big nap after lunch!!
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT 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 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

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juliej
Posts: 3048
Joined: Thu Aug 05, 2010 12:59 pm

Re: My CRC with liver mets journey

Postby juliej » Mon Jul 22, 2019 5:27 pm

ginabeewell wrote:The pain is manageable between Tylenol and Oxi, and I’m trying to limit how much I use the latter.

I don't know if they mentioned it, but alternating Oxi and Tylenol increases the effect of the Oxi. Try that and see if it helps. Also, make sure you time your outings to your med schedule. Taking an Oxi about 30 minutes before a walk/dinner/museum visit makes it much less painful to walk around.

Also, I was like you - very reluctant to take Oxi. Then my surgeon's nurse explained that I would heal much slower if I was in pain. So that was a wake-up call to not be afraid to take it when I needed it. And sure enough, my healing sped up afterwards!

Keep up the good recovery! :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 9/23/2019, CEA<1

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ginabeewell
Posts: 322
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Thu Jul 25, 2019 12:52 pm

I have been having a tougher time with this surgery than my last one. I’m a week out and my appetite is still non-existent. I think that’s making everything else harder: I don’t have the energy to stay awake or walk.

I’m kind of blaming myself instead of giving myself a break. I mean I have a huge L-shaped incision and they removed chunks of my liver on both sides. But I didn’t work out ahead of it like I did the first time so there’s that.

This morning I finally took a pot mint and ate a reasonable breakfast. I also got high as a kite with my mom, maybe because I had taken an Oxicontin too? OMG embarrassing. Thank goodness she is a good sport.

I feel like walking again so I think we will go to Central Park this afternoon.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT 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 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

stu
Posts: 1205
Joined: Sat Aug 17, 2013 5:46 pm

Re: My CRC with liver mets journey

Postby stu » Thu Jul 25, 2019 5:15 pm

Mmm my mum had not even been discharged from hospital at this stage . 73% removed right enough but she was barely awake at this stage .

I think you should take a wee bit of advise from my mum who advocated listening to her bodies needs . If it needs to heal by sleeping , so be it . If it benefits from a walk , great .

You have been beyond incredible but if you need to rest I for one think you have earned it . Also if you have had additional chemo since your last surgery then you need to factor that in .

Your doing great ,

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: 322
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Thu Jul 25, 2019 10:02 pm

stu wrote:Mmm my mum had not even been discharged from hospital at this stage . 73% removed right enough but she was barely awake at this stage .

I think you should take a wee bit of advise from my mum who advocated listening to her bodies needs . If it needs to heal by sleeping , so be it . If it benefits from a walk , great .

You have been beyond incredible but if you need to rest I for one think you have earned it . Also if you have had additional chemo since your last surgery then you need to factor that in .

Your doing great ,

Stu


Thanks Stu. I had a good walk this afternoon but then we went out again after dinner to get ice cream and I could tell a few steps in I was overdoing it. My dress was rubbing my incision and nothing felt good. I told my mom and we took a quick walk thru a few blocks worth of park and came out at home. We rested several times.

Tonight I checked my iPhone and it said I went 2.5 miles today. Today was definitely a turning point for me in my healing so I am feeling happy! I think up until today there was a part of me worried if I could do this again but I know I can.

Really missing my husband though. He’s too busy at work to even text much. He shoots in LA tomorrow and then takes the red eye home.

Kemeny wants a CT scan on Sunday, and then we have follow ups with her and a surgeon (maybe Dr Angelica filling in for Kingham) and a pump fill. And then we go home.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT 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 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

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ginabeewell
Posts: 322
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Jul 29, 2019 12:00 pm

Just had my follow ups with Dr Kemeny and Dr D’Angelico (who filled in for Kingham). Everyone seems happy with the surgery and the healing.

The pathology for the tumor that was removed came back and it was 95.5% dead - which sounds good I guess? I mean not as good as 100% dead!! But everyone here seems happy about it. My scans hadn’t shown any shrinking since December, but this suggests the chemo was still working.

I told them I was having a tougher time bouncing back after this surgery vs my last one, and it basically sounds like that’s pretty normal.

My weight is down pretty significantly so they may put some steroids in my pump. Just need to get that filled and we can be on our way back home!
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT 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 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

AmyG
Posts: 264
Joined: Tue Dec 25, 2018 8:08 pm

Re: My CRC with liver mets journey

Postby AmyG » Mon Jul 29, 2019 1:14 pm

You're doing amazing.
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

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Zackattack
Posts: 39
Joined: Mon Jul 15, 2019 4:28 pm

Re: My CRC with liver mets journey

Postby Zackattack » Mon Jul 29, 2019 5:17 pm

Keep up the great work and positive attitude! We're all on your side
Colonoscopy due to occasional blood in stool.
DX: Rectal Cancer, 7-12-19 @ age 36, male
CEA Levels of 3.0, seems to be T1 at first glance (and hopefully forever?).
Moderately differentiated cells. 12 to 15cm from anal verge
7-26-19 --Dr. calls to advise upon rerunning pathology, sm3 depth...
TME surgery scheduled for 8/21/19
Successful surgery and feeling good so far
2/15 Lymph nodes had cancer.
Stage 3A T1cN1M0

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ginabeewell
Posts: 322
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Aug 05, 2019 10:39 am

I am now almost three weeks post resection surgery and starting to feel human. I got a reasonable appetite back a few days ago, and that made a huge difference. I even made it to Lollapalooza yesterday with all the kids! My husband got me a little transport wheelchair which helped us to jump the line in and always gave me a place to sit.

I didn’t make it the whole day, but we stayed for a few hours and then I took my 8-year-old son back home. The other three stayed with my husband to see Arianna Grande!

I had blood drawn today to see if I will be ready to resume chemo next Monday. Wrapping that up and then heading to the office for the first time in three weeks. I’m tired but going stir crazy at home; so glad to be heading back even if I don’t make it a whole day.

Tomorrow I am SO EXCITED, I made a brow appointment. Vectibix has made my brows go crazy, and after 7 weeks without chemo, my rash has finally settled down enough to go get them waxed. Maybe I’ll do a facial this weekend too. My derm wants me to start on the super high powered steroid on Monday when I restart Vectibix. The goal is to do that for two weeks and hopefully prevent the rash from breaking out this time. Dr Kemeny gave me a hard no when I inquired about Accutane, so let’s hope this works!!
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT 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 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

kandj
Posts: 261
Joined: Sun Sep 27, 2015 11:29 am

Re: My CRC with liver mets journey

Postby kandj » Tue Aug 06, 2019 1:00 pm

ginabeewell wrote: Dr Kemeny gave me a hard no when I inquired about Accutane, so let’s hope this works!!


That is probably wise. Accutane is nasty drug when you are perfectly healthy with no ongoing treatments. Hopefully the cream your derm comes up with will help as well. Keep chugging water. It does wonders for the skin. Enjoy the facial!
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
chemo break, nothing seen on scans 6/19 or 8/19 Hopeful


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