My CRC with liver mets journey

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ginabeewell
Posts: 360
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Oct 28, 2019 7:43 pm

boxhill wrote:Keeping my fingers crossed for you. Any idea why this happened?


Sounds like this is an “expected response” when you are displacing such a large chunk of an organ - fluid comes in to fill the void.

But in my case, I had pain and a fever which suggested the fluid may have been infected. In fact, we still don’t know whether or not that’s the case and maybe won’t for another day or so!

I find myself wondering if they discharged me too early? Or maybe I didn’t walk enough? I don’t know, I don’t want to Monday morning quarterback. This recovery has been a doozy but ultimately I should be fine!

The surgeon also revealed pathology report today - he was able to achieve all clear margins, and the treatment response in the tumor that was removed was 99%! Looking forward (sorta) to starting mop-up chemo.
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

Rock_Robster
Posts: 380
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: My CRC with liver mets journey

Postby Rock_Robster » Mon Oct 28, 2019 7:55 pm

ginabeewell wrote:
boxhill wrote:Keeping my fingers crossed for you. Any idea why this happened?


Sounds like this is an “expected response” when you are displacing such a large chunk of an organ - fluid comes in to fill the void.

But in my case, I had pain and a fever which suggested the fluid may have been infected. In fact, we still don’t know whether or not that’s the case and maybe won’t for another day or so!

I find myself wondering if they discharged me too early? Or maybe I didn’t walk enough? I don’t know, I don’t want to Monday morning quarterback. This recovery has been a doozy but ultimately I should be fine!

The surgeon also revealed pathology report today - he was able to achieve all clear margins, and the treatment response in the tumor that was removed was 99%! Looking forward (sorta) to starting mop-up chemo.

Fantastic! Clear margins and a 99% dead tumour is a dream response!

Yes the fluid thing is a bugger but it does happen. I had free abdo fluid after my liver op - surgeon was a bit confused as to why in a young guy without complications, I was terrified it was ascites but as you say - it’s just what happens. It was still there when they tried to do my mapping for radiation therapy several weeks later, but after another week or two of gentle movement and frequent walking, and all resolved itself. Hopefully the same for you!
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

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ginabeewell
Posts: 360
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Tue Oct 29, 2019 5:58 pm

Checking out of MSK - finally!

They told me they would discharge me if I could stay off oxygen all day and maintain a pulse ox of 94 - which I did! I even walked four laps without feeling I was dying.

We meet with Dr Kemeny tomorrow afternoon and had to book out on a 10 pm flight - literally the only way we could get seats together.

Very interested to hear what’s next. Hoping against hope no Vectibix!
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: 282
Joined: Tue Dec 25, 2018 8:08 pm

Re: My CRC with liver mets journey

Postby AmyG » Tue Oct 29, 2019 7:24 pm

Oh hell yeah! Great news!!
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

boxhill
Posts: 392
Joined: Fri Apr 06, 2018 11:40 am

Re: My CRC with liver mets journey

Postby boxhill » Tue Oct 29, 2019 7:45 pm

Good! I had an infusion on Wednesday last week and met an older-than-me woman who was on Vectibix and had the hairiness thing and the rash, and had been in the hospital over the weekend with ascites--7 litres or so. Yikes! She didn't realize why she was so short of breath until her daughter, a NP, told her she looked 9 months pregnant. She and her H were sweeties, but not the research types, LOL!
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
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

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ginabeewell
Posts: 360
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Wed Oct 30, 2019 2:53 pm

I’m super frustrated coming out of my meeting with Kemeny.

Am I NED? She didn’t say so. And all Dr Kingham said was he thinks he got it all. They did do a CT scan to diagnose the fluid build up so I would think someone would have noted if they saw anything there.

She noted that pathology was “very good” and she wants to keep me on my current chemo including Vectibix. How long? Depends. No answer. If I didn’t have this board’s experiences with her treatment tendencies I would have no idea. And I’m not sure I do anyway.

I know I’m in an emotional place right now, in the middle of a tough recovery - but could we have just taken a moment to regroup on where we are right now?

I’m not asking for a celebration. Frankly even just understanding whether at this point I’m considered NED - or if there is some other hurdle to cross - would be helpful.
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

hopefulandstrong
Posts: 55
Joined: Fri Apr 19, 2019 7:11 pm

Re: My CRC with liver mets journey

Postby hopefulandstrong » Wed Oct 30, 2019 5:45 pm

Not the same situation - yours is much better -- but a similar feeling of disappointment, when my triplet therapy stopped working in August, and I was advised to go back on Folfoxfiri. It felt like a major defeat -- not to mention the regimen is way harder, and I loose several days a month to recovering. So, I totally understand wanting that damn Vetibix to go away, and at least have pathway/timetable.

But here's the thing, if you're not NED today, you will be soon. You are in a much better place than you were, and will be living a lot longer than you originally thought. That is a huge win.

I hope I can follow in your footsteps.

JC
54, female
1/8/19 DS Stage 4 with Liver Mets; Successful Colon Resect
2/18/19 Started Folfox -- CEA 70
5/8/19 - BRAF mutation -- switch to Triplet Therapy: Encorafenib, Binimetinib, Cetximab
6/13/19 - CEA dropped from 214 to 22
8/29 - CEA jump to 30-- scans reveal liver spread, though still confined. triplet therapy abandoned; some concern about PIC3 mutation interfering with BRAF treatment
9/1 - 10/4 -- no treatment
10/4 -- folfoxfiri to stem further progression; pump placement in January (hopefully)

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ginabeewell
Posts: 360
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Wed Oct 30, 2019 5:51 pm

hopefulandstrong wrote:Not the same situation - yours is much better -- but a similar feeling of disappointment, when my triplet therapy stopped working in August, and I was advised to go back on Folfoxfiri. It felt like a major defeat -- not to mention the regimen is way harder, and I loose several days a month to recovering. So, I totally understand wanting that damn Vetibix to go away, and at least have pathway/timetable.

But here's the thing, if you're not NED today, you will be soon. You are in a much better place than you were, and will be living a lot longer than you originally thought. That is a huge win.

I hope I can follow in your footsteps.

JC


Thank you for that reminder. I know you are right, and frankly I think that’s part of why I feel so terrible feeling shitty. A close friend - the woman who was the gestational carrier for my twins - has metastatic breast cancer and it’s become clear in the past few days that she is terminal. She will leave behind three young boys who have already lost their dad to Alzheimer’s. And who knows the role the hormones we asked her to take to get pregnant on our behalf may have held.

It’s all just so scary sometimes. And I’m like worried about a rash?!
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

radnyc
Posts: 408
Joined: Tue Apr 06, 2010 6:32 pm

Re: My CRC with liver mets journey

Postby radnyc » Wed Oct 30, 2019 7:48 pm

ginabeewell wrote:I’m super frustrated coming out of my meeting with Kemeny.

Am I NED? She didn’t say so. And all Dr Kingham said was he thinks he got it all. They did do a CT scan to diagnose the fluid build up so I would think someone would have noted if they saw anything there.

She noted that pathology was “very good” and she wants to keep me on my current chemo including Vectibix. How long? Depends. No answer. If I didn’t have this board’s experiences with her treatment tendencies I would have no idea. And I’m not sure I do anyway.

I know I’m in an emotional place right now, in the middle of a tough recovery - but could we have just taken a moment to regroup on where we are right now?

I’m not asking for a celebration. Frankly even just understanding whether at this point I’m considered NED - or if there is some other hurdle to cross - would be helpful.


You should really give yourself a break, we all know how hard this point on your journey can be. Remember, you just went through 2 MAJOR SURGERIES in the past 6 months on top of being in chemo and dealing with it’s serious side effects. You’re a champion, most humans NEVER have to go through what a lot of us have on here. Give the team at MSK a break, you’re insides are a mess right now, no CT or PET scan right now can show for certain what your status is, although your surgeon and Kemeny seem over all positive about the outcome. My first CT post hepatectomy was not clear, it wasn’t until the subsequent two that we were confident that I had achieved NED status. Take care of yourself, both in body and mind, things will get better.

Peace

Al
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

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ginabeewell
Posts: 360
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Wed Oct 30, 2019 8:18 pm

radnyc wrote:My first CT post hepatectomy was not clear, it wasn’t until the subsequent two that we were confident that I had achieved NED status. Take care of yourself, both in body and mind, things will get better.

Peace

Al


That actually super helpful to know. I guess I should have just asked but was afraid to on some level I am sure. I did take a peek at my CT and it looked like a mess. I am sure nobody could look at it and confidently tell me I am all set.

I also know that I’m having this angst because I’m exactly where you reference me being - this past year has had three surgeries and 19 rounds of chemo. And complications that were painful, required another procedure, and kept me from going home as planned. I’m freaking TIRED. And I know myself well enough to know I have a much harder time digging out of a funk when I’m just plain tired.

I’ll sleep in my own bed tonight and I’ll wake up feeling better tomorrow.
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

Gravelyguy
Posts: 251
Joined: Thu Jul 05, 2018 6:03 pm

Re: My CRC with liver mets journey

Postby Gravelyguy » Thu Oct 31, 2019 11:11 am

ginabeewell wrote:
radnyc wrote:My first CT post hepatectomy was not clear, it wasn’t until the subsequent two that we were confident that I had achieved NED status. Take care of yourself, both in body and mind, things will get better.

Peace

Al


That actually super helpful to know. I guess I should have just asked but was afraid to on some level I am sure. I did take a peek at my CT and it looked like a mess. I am sure nobody could look at it and confidently tell me I am all set.

I also know that I’m having this angst because I’m exactly where you reference me being - this past year has had three surgeries and 19 rounds of chemo. And complications that were painful, required another procedure, and kept me from going home as planned. I’m freaking TIRED. And I know myself well enough to know I have a much harder time digging out of a funk when I’m just plain tired.

I’ll sleep in my own bed tonight and I’ll wake up feeling better tomorrow.


Just want to echo what Radnyc wrote. I don't think they are being coy. I think they don't know because your surgery does such a number on your liver that it would be very hard for a scan to show anything. We have had different treatments but my first scan after surgery was over 6 months after surgery and 8 more rounds of chemo. It wasn't until then that they said the magic words "no evidence of disease"!

You have been through a lot and the unknown gets so mentally tough and add to it the beating our bodies take with all of these treatments, it is no wonder you are tired. You have made it past the next hurdle. Take a moment to celebrate that if you can before looking down the road to the next one.

Hope this helps,

Dave
Last edited by Gravelyguy on Thu Oct 31, 2019 3:02 pm, edited 1 time in total.
6/17 dx mRC 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!
6/11/19 clear scans CEA 1.0

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ginabeewell
Posts: 360
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Thu Oct 31, 2019 2:43 pm

Gravelyguy wrote:Just want to echo what Radnyc wrote. I don't think they are being coy. I think they don't know because your surgery does such a number on your liver that it would be very hard for a scan to show anything. We have had different treatments but my first scan after surgery was over 6 months after surgery and 8 more rounds of chemo. It wasn't until then that they said the magic words "no evidence of disease"!

You have been through a lot and the unknown gets so mentally tough and add to it the beating our bodies take with all of these treatments, it is no wonder you are tired. You have made it passed the next hurdle. Take a moment to celebrate that if you can before looking down the road to the next one.

Hope this helps,

Dave


Thank you so much - in fact, both of your experiences gave me some much better perspective and understanding of what’s being communicated and why. And being able to wrap my head around it goes a long way to feeling better about it all.

Not to mention being back in my own home thank goodness!

It’s my husband’s birthday today plus Halloween. I have costumes to finish up! Luckily my mom is here to help me!
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

User avatar
ginabeewell
Posts: 360
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Nov 04, 2019 10:43 pm

I’m 18 days out from surgery (a few less from the drain installations) and still feeling pretty tired and beat up.

I went down to NW today for a pump flush and a check in with the nurse practitioner, just to bring them up to speed on surgery and plans for mop up chemo.

While we were in the waiting room, I felt a drop of liquid roll all the way down my side. What the? I unzipped my sweatshirt to find my t-shirt soaked! Ack!

In short order we figured out that my drains were leaking, one quite a lot. Eventually we heard back from MSK, who weren’t concerned and suspected it might be due to internal wounds closing up (a good thing). But we had several tense hours trying to figure out why it happened and what the hell to do about it - specifically should we leave NW before having someone take a look?

The answer was no: go home and redress it. Keep it dry in the meantime. Which is how I turned into a lady with a giant maxi pad taped to my chest - a solution that worked shockingly better than gauze or paper towels should you find yourself in a similar position!

My husband changed the dressings tonight with about 500% as much care and accuracy as yesterday’s home nurse. So that’s our last home nurse dressing change as far as I am concerned!

That said, I think it was stressful - he sweated all the way through and when he was done announced he was going to make himself a drink! Fair enough, kind caretaker!

My appetite still hasn’t recovered, and I’m craving weird things. Drinking a ton of milk, eating Kraft Mac and cheese, and just asked for a sliced apple. Maybe I’m eight again?

Trying to stay patient and give myself time. My parents come back tomorrow and I would like to get a little walking in with them.
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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