My CRC with liver mets journey

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cartech78
Posts: 58
Joined: Thu Oct 25, 2018 6:22 pm

Re: My CRC with liver mets journey

Postby cartech78 » Thu Mar 28, 2019 12:00 pm

ginabeewell wrote: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!

Hi Gina, glad to hear your doing well. After my pump placement
3 weeks ago it seems like appetite takes a little while to return. I definitely noticed a bloated feeling after eating for a couple weeks. Next up will be your pump study! Its a pretty uneventful test that you will lie on a scan table for about an hour or so and they will fill your pump with nuclear dye. Its not to bad getting the pump filled at all so don’t worry about pain. Kingham is a great surgeon and did my pump as well as resection of one liver met. They wanted to resect more but couldn’t on me because they found a bunch of small mets scans didn’t show. It looks like i found someone at University of Chicago to service the pump in the off weeks. Strangely Kemeny told me she didn’t know of anyone to help at Northwestern. The Dr at u of Chicagos name is Dr.Polite if you end up needing to use him. Good luck with your recovery and let me know if you need anymore info.
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon T3N1bM1a
Histologic grade-G2
7 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/12/18 3rnds
Report back to MSK on 12/18/18 for further instructions.

heiders33
Posts: 338
Joined: Sat Nov 04, 2017 11:08 am

Re: My CRC with liver mets journey

Postby heiders33 » Fri Mar 29, 2019 6:10 am

Glad the surgery went well! I also had a slow time getting my appetite back. Make sure to walk as much as you can for a faster recovery. If you have muscle spasms in your abdomen like I did, ask for Ativan or Toradol if your kidney can handle it. It was the only thing that allowed me to get out of bed without pain those first couple days.
36 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy
10/17 - 2/18: XELOX six rounds
3/18: reversal
5/18: CT liver spot, blood counts normal
8/18: Abnormal PET, CEA 2.4
9/18: liver resection/HAI pump
10/18: Clear CT/sigmoidoscopy
10/18 - 4/19: 6MO FUDR/5FU

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ginabeewell
Posts: 145
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Fri Mar 29, 2019 11:37 am

I’m off the pain pump and onto oral painkillers. Still need to pass gas but other than that I’m ready for discharge! I’m eating a little and my stomach is gurgling so it seems to be “waking up.”

There was a pump study cancellation this afternoon so I’m going to do that today instead of Monday.

Too funny about Kemeny not knowing anyone at Northwestern, I wonder if my contact just slipped her mind?! I actually had a first meeting with Dr Blaise Polite; he is supposed to be very good.
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!!

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: My CRC with liver mets journey

Postby AppleTree » Fri Mar 29, 2019 11:41 am

All sounds like good updates. Safe travels home. I like to time my pain meds before car trips...just to cover all my bases. Speedy recovery.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

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ginabeewell
Posts: 145
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Sat Mar 30, 2019 5:39 pm

The pump study went well, the follow told me it was working perfectly.

In other good news we learned to hack these terrible beds. I swear the bed is giving me more pain than the surgery!

Still no bowel movement, so they don’t want to discharge me. But I’m feeling good so I may insist on it tomorrow even if that hasn’t happened yet. I know I would be more active OUT of the hospital than in, walking laps around the halls.
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: 586
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: My CRC with liver mets journey

Postby LPL » Sat Mar 30, 2019 6:09 pm

ginabeewell wrote:The pump study went well, the follow told me it was working perfectly.

In other good news we learned to hack these terrible beds. I swear the bed is giving me more pain than the surgery!

Still no bowel movement, so they don’t want to discharge me. But I’m feeling good so I may insist on it tomorrow even if that hasn’t happened yet. I know I would be more active OUT of the hospital than in, walking laps around the halls.

Hi Gina, good news about the pump study :-)
I hope your ‘system’ will wake up before you go home.
Sorry to hear about the bed. I have only one experience of hospital beds in the USA. It was 2016 at SFGH (San Francisco General Hospital) and I still remember the wonderful!! bed. I even asked hubby to take a photo of it.
Image
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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ginabeewell
Posts: 145
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Sat Mar 30, 2019 6:27 pm

LPL wrote:
ginabeewell wrote:The pump study went well, the follow told me it was working perfectly.

In other good news we learned to hack these terrible beds. I swear the bed is giving me more pain than the surgery!

Still no bowel movement, so they don’t want to discharge me. But I’m feeling good so I may insist on it tomorrow even if that hasn’t happened yet. I know I would be more active OUT of the hospital than in, walking laps around the halls.

Hi Gina, good news about the pump study :-)
I hope your ‘system’ will wake up before you go home.
Sorry to hear about the bed. I have only one experience of hospital beds in the USA. It was 2016 at SFGH (San Francisco General Hospital) and I still remember the wonderful!! bed. I even asked hubby to take a photo of it.
Image


That’s the same terrible bed!! No support at all! But we figured out how to put it on “max fill” for 30 minutes ata time, which has helped tremendously.
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: 586
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: My CRC with liver mets journey

Postby LPL » Sun Mar 31, 2019 2:55 am

Oh wow :shock: I presume they had my bed on max the whole time then. I could feel how the mattress changed now and then.
Good that you figured out how to make it better.
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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ginabeewell
Posts: 145
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Apr 01, 2019 8:18 pm

I’m now five days out from surgery. They discharged me yesterday at noon, and my mom arrived in New York late last night. I feel so much better. I’m down to 5 mg of Oxy during the day, and sometimes I’m going extra hours between doses without noticing. But I’m taking Tylenol too.

I’m walking a half mile at a time (and napping plenty too). My husband’s sister, a chiropractor, came to give me a massage and an adjustment. OMG that helped tremendously!

Tonight I felt good enough to make a simple pasta sauce for dinner, the one I make once a week at home. I ate a little more than I’ve been eating, still not a normal amount, but I suspect that’s because I’m still very swollen. I’m weirded out by my belly! I can’t even see the pump because my bump is obscuring it.

Hope the weather is a little better tomorrow, and we can walk again. New York is a great city for walking and my mom hasn’t been here since she was a teen so that’s fun! Not much else planned until a CT scan on Thursday and post-op appts next Monday.
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: 145
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Fri Apr 05, 2019 5:06 pm

I had a CT scan yesterday and Sandy called me today to say there was a blood clot on my spleen vein. Back to MSK for syringes full of blood thinner - I gave myself a shot in the bathroom and then we took a bus tour of NY!

I’m now 9 days out. My swelling has been reduced significantly, and I’m walking about two miles a day. I took next week off, but I could probably go back to work if I wanted to. I’m off Oxy during the day and just using Tylenol. My appetite is at about 3/4 strength.

Dinner in Little Italy tonight, I hope. A friend is coming down to meet us and I’m hungry!
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!!

Pyro
Posts: 152
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: My CRC with liver mets journey

Postby Pyro » Fri Apr 05, 2019 9:27 pm

ginabeewell wrote:I had a CT scan yesterday and Sandy called me today to say there was a blood clot on my spleen vein. Back to MSK for syringes full of blood thinner - I gave myself a shot in the bathroom and then we took a bus tour of NY!

I’m now 9 days out. My swelling has been reduced significantly, and I’m walking about two miles a day. I took next week off, but I could probably go back to work if I wanted to. I’m off Oxy during the day and just using Tylenol. My appetite is at about 3/4 strength.

Dinner in Little Italy tonight, I hope. A friend is coming down to meet us and I’m hungry!


Congrats! So you weren’t on blood thinners to begin with? My major cancer surgeries all had 30 days of injections afterwards, wonder why that is?
Aug 2015- Diag Stage 4 CC with mets to liver (38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not a surgery candidate for liver
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery, Dr. Vauthey
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, CEA @30, shit still here

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LPL
Posts: 586
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: My CRC with liver mets journey

Postby LPL » Sun Apr 07, 2019 2:35 pm

Pyro wrote:
ginabeewell wrote:I had a CT scan yesterday and Sandy called me today to say there was a blood clot on my spleen vein. Back to MSK for syringes full of blood thinner - I gave myself a shot in the bathroom and then we took a bus tour of NY!

I’m now 9 days out. My swelling has been reduced significantly, and I’m walking about two miles a day. I took next week off, but I could probably go back to work if I wanted to. I’m off Oxy during the day and just using Tylenol. My appetite is at about 3/4 strength.

Dinner in Little Italy tonight, I hope. A friend is coming down to meet us and I’m hungry!


Congrats! So you weren’t on blood thinners to begin with? My major cancer surgeries all had 30 days of injections afterwards, wonder why that is?

My husband was also put on bloof thinners and after he came home it continued for ? (a while, don’t remember exact now).
But he did not have a pump implanted if that is different?
All the best to you Gina.
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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ginabeewell
Posts: 145
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Sun Apr 07, 2019 6:22 pm

Interesting, sounds like blood thinners post surgery is pretty common. I had Heparin while I was in the hospital but nothing after that - until they called me about the clot.

I have post op appointments tomorrow and will get the pump filled with saline.

I’ve been doing well, skipped painkillers today and didn’t miss them. I’m glad I stayed in NY because I think all the walking helped. I’m probably walking two miles a day here. But definitely ready to get home tomorrow night!
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: 145
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Apr 08, 2019 9:54 am

Well I must be doing well because they want to start the pump chemo TODAY. We were just expecting saline. Glad I had sushi yesterday!

Sounds like they only found one affected lymph node, near the colon, which was removed during surgery. Pathology on all the other nodes was negative. I was a bit surprised by this, I assumed stage 4 went hand in hand with lymph nodes being more broadly impacted.

One more post op to go (with Dr Paty) and then will get the pump filled.
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: 586
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: My CRC with liver mets journey

Postby LPL » Mon Apr 08, 2019 3:29 pm

ginabeewell wrote:Well I must be doing well because they want to start the pump chemo TODAY. We were just expecting saline. Glad I had sushi yesterday!

Sounds like they only found one affected lymph node, near the colon, which was removed during surgery. Pathology on all the other nodes was negative. I was a bit surprised by this, I assumed stage 4 went hand in hand with lymph nodes being more broadly impacted.

One more post op to go (with Dr Paty) and then will get the pump filled.

Sounds good this Gina.
I like your positive approach to things!
Best of luck with the pump chemo.
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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