My CRC with liver mets journey

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Claudine
Posts: 399
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: My CRC with liver mets journey

Postby Claudine » Thu Jan 16, 2020 2:08 pm

My husband had 6 rounds of Xelox as mop up and it did not work at all, sometimes I even wonder if it made his body weaker and allowed the cancer to spread! He's scheduled for surgery on February 11 and the oncologist isn't planning to resume chemo afterwards, unless his CEA levels go up. I know I'll be nervous about this, but at the same time, why continue chemo and risk developing resistance? If he's off, then hopefully he'll still react positively to Folfiri should cancer crop up somewhere else in his body...
So much we do not know about this disease!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 4.4
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

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

Re: My CRC with liver mets journey

Postby juliej » Thu Jan 16, 2020 6:08 pm

ginabeewell wrote: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!

I hear you! Getting that damn drain out was one of the happiest days of my life! :D :D :D

ginabeewell wrote: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.

The other thing to remember is that you're being monitored very closely. Every two months Dr K will be checking to see if there is the teensiest indication of something wrong. And if there is, she'll deal with it immediately! So - deep breath - your job is just to be as healthy as you can be so your immune system stays strong.

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: 452
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Thu Mar 26, 2020 10:35 pm

My oncologist just called. Last Friday’s scans showed two new spots. My CEA is up to 2.6 - so I guess my little freak out about it being up a few weeks ago was in fact the start of a rise.

They want to do a PET scan next week but between the CT and the CEA, I think I would be surprised / suspicious if anyone tried to tell me this wasn’t a thing.

Both mets are near former cuts. Both about 1.5 centimeters.

Sigh.

She said we would figure it out and treat this but I don’t even know what that would likely entail...and it’s a very inconvenient time to restart chemo.
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?

roadrunner
Posts: 46
Joined: Sun Jan 12, 2020 8:46 pm

Re: My CRC with liver mets journey

Postby roadrunner » Fri Mar 27, 2020 10:59 am

I am sorry you got this news, and just wanted to send a message of support. I’m relatively new to this community, but I’ve read some of your prior posts and there’s no doubt you’ve had a challenging path that you’ve handled with strength, grace, energy, and focus, and you’ve got a fantastic team. Your oncologist also seems to have exactly the right attitude, and I hope and trust that you guys will get over this bump as well as you have those that have appeared in the past.
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.

stu
Posts: 1376
Joined: Sat Aug 17, 2013 5:46 pm

Re: My CRC with liver mets journey

Postby stu » Fri Mar 27, 2020 12:35 pm

Oh I am sorry you have to face this especially just now .
I do trust your team is going to come up with a good plan though and this is a horrible bump along the way , but we are here for you to get you over this .
Take care ,
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 .

Claudine
Posts: 399
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: My CRC with liver mets journey

Postby Claudine » Fri Mar 27, 2020 3:15 pm

I was hoping for "another clear scan" post... I understand how upsetting this must be (what a roller coaster of emotions..) But on the plus side - the mets (if that's what they are) are still small and in the liver, things have not spread elsewhere, and hopefully this is just a small "bump" on your way to long term NEDism! Thinking of you in those difficult times XXXXX
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 4.4
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

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ginabeewell
Posts: 452
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Fri Mar 27, 2020 6:03 pm

Thanks all.

I didn't have the presence of mind to ask what treatment would look like - another resection? Is this small enough for radiation? I would imagine chemo in either case, but wondering if that would be before or after?

Love to hear if anyone had a similar experience and how it was handled. Think earliest I would talk to my oncologist would be Tuesday.
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: 1376
Joined: Sat Aug 17, 2013 5:46 pm

Re: My CRC with liver mets journey

Postby stu » Sat Mar 28, 2020 10:46 am

My mum’s history is possibly dated now . Who knows? She had chemo first then surgery ! No post op chemo. Her recurrence was three months after her first resection. What a blow but that was also the last one in her liver . Nine years ago this summer .
Hold on tight . Sending you all out love .
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 .

Lee
Posts: 6096
Joined: Sun Apr 16, 2006 4:09 pm

Re: My CRC with liver mets journey

Postby Lee » Sat Mar 28, 2020 2:22 pm

(((ginabeewell)))

I am so sorry,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

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ginabeewell
Posts: 452
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Sun Mar 29, 2020 11:36 pm

Thanks, Stu, for the info - and to everyone for the support!

Ok, so here is something weird:

Back in late December I started to experience aching joints and muscles. We tested for every imaginable deficiency but no luck finding anything that supplements helped. Then I went off Actigall - no change. Finally I had my primary care doctor take a look and she screened me for rheumatoid arthritis. One of the tests came back positive!

I was like OMG are you serious first colon cancer now this?! Extra weird because there is a negative correlation between the two - having RA makes it less likely that you would get colon cancer. Which got me thinking... is that just really really bad luck?

Then the scans with two new mets.

And tonight more googling as I started to wonder - RA is an autoimmune disorder where your immune system goes on overdrive. Could my immune system have been triggered by the recurrence of cancer?

And I guess that is in fact a thing! Paraneoplastic syndrome can mimic RA all the way down to a positive lab test. And it can often be present months or years before a met is visible on a scan.

So, I guess if I restart chemo, potentially at least my “RA” will go away!
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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beach sunrise
Posts: 218
Joined: Thu Mar 05, 2020 7:14 pm

Re: My CRC with liver mets journey

Postby beach sunrise » Sun Mar 29, 2020 11:44 pm

You have had one heck of a cancer journey so far, highs and lows. Interesting about the RA factor. Knowledge is a powerful thing! Keep going and be your own advocate.
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1-21-20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
mFOLFOX6 CEA 7
8 rds 6-10 CEA 11.4 4 more no oxa
6-17 CEA 11.1
7-2 CEA 11.1
7-16 CEA 10.3
7-28 CEA 8.8
8-11 CEA 7.8
9-1 CEA 8.8
9-8 CEA 9
9-16 CEA 9
9-22 CEA 8.6
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

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 Mar 30, 2020 12:12 am

Ginabewell, this is super interesting, and particularly for me as I also had a positive RA test before I was diagnosed with CRC. I was having joint pain in my hands (which turned out to be tendonitis from the gym), but my doc screened for RA and I had a positive anti-CCP test, which is very specific for RA. I went down the rheumatology path and almost started methotrexate, when they did a repeat test which came back negative (my hand MRI was also negative). My symptoms stopped when I started wearing gloves at the gym, and they and I were happy to write this off as a testing anomaly. About 3 years later I got a stage IV CRC diagnosis.

Like you I did my digging and found the inverse correlation between the two, so was confused by that. It may just be a coincidence, but I do believe if it walks like a duck and quacks like a duck...

Rob
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: 452
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Mar 30, 2020 12:23 am

Rock_Robster wrote:Ginabewell, this is super interesting, and particularly for me as I also had a positive RA test before I was diagnosed with CRC. I was having joint pain in my hands (which turned out to be tendonitis from the gym), but my doc screened for RA and I had a positive anti-CCP test, which is very specific for RA. I went down the rheumatology path and almost started methotrexate, when they did a repeat test which came back negative (my hand MRI was also negative). My symptoms stopped when I started wearing gloves at the gym, and they and I were happy to write this off as a testing anomaly. About 3 years later I got a stage IV CRC diagnosis.

Like you I did my digging and found the inverse correlation between the two, so was confused by that. It may just be a coincidence, but I do believe if it walks like a duck and quacks like a duck...

Rob


That’s the same test that was positive for me: the anti-CCP test. The RA screen was negative. So you may have experienced the same thing: your body mounting an immune system response to early stage colon cancer. Oh also I read that MRI would be negative for RA in a case like this. Crazy right?! But I’m choosing to think of it as a sign of my body’s natural power. I could never shake the feeling that the pain was related to my cancer; but I guess I assumed it was the treatment vs the cancer back itself. So fascinating.
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?

AmyG
Posts: 350
Joined: Tue Dec 25, 2018 8:08 pm

Re: My CRC with liver mets journey

Postby AmyG » Mon Mar 30, 2020 10:43 am

Gawd. You've had to deal with so much!

How are other things in your life going? Are you guys all stuck in the house? Rationing toilet paper?

Hang in there.
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
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

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ginabeewell
Posts: 452
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Mar 30, 2020 2:10 pm

AmyG wrote:Gawd. You've had to deal with so much!

How are other things in your life going? Are you guys all stuck in the house? Rationing toilet paper?

Hang in there.


I'm really glad that we started to take COVID-19 seriously at the first indication that we needed to be social distancing. We "locked down" that first Friday and enforced with all the kids immediately in spite of the fact that many families were not. My husband did a big shopping trip very early on, and we were lucky enough to have been negligent updating our Amazon subscription for toilet paper, so we had plenty in our basement!

My neighbors have been great, offering their teen to do shopping for us; I did a month-long meal plan to allow her to shop once a week.

Our cottage is a few hours away, so that's been a nice change of scenery. It's in a different state so we are being cautious about not taxing the local community - we take all the food we need and basically stay put once we arrive. My husband and I have both been WFH and have been SWAMPED (his major client is a grocer, I'm working with our CEO to understand revenue implications as our clients all pull back) so getting to a different place has been key in us not working from the moment we wake up until we finally pass out in bed.

I did a PET scan today - hopefully results tomorrow but not expecting anything but confirmation of what we think we know. It was freaky to be at Northwestern today - like a ghost town and everyone enforcing 6 feet separation, all the receptionists with masks on, etc.
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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