Cea on the rise

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Mohrfamily
Posts: 267
Joined: Tue May 22, 2018 4:04 pm

Re: Cea on the rise

Postby Mohrfamily » Tue Feb 25, 2020 12:15 pm

The FUDR isn't helping the liver everything seems connected right the new doctor checked everything on the scan. FUDR just isn't effecting us like we hoped. He estimates that 1/3 of the liver is still good and agrees FOLFIRI is where to head next.
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm 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.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

Mohrfamily
Posts: 267
Joined: Tue May 22, 2018 4:04 pm

Re: Cea on the rise

Postby Mohrfamily » Tue Feb 25, 2020 12:19 pm

Mohrfamily wrote:The FUDR isn't helping the liver everything seems connected right the new doctor checked everything on the scan. FUDR just isn't effecting us like we hoped. He estimates that 1/3 of the liver is still good and agrees FOLFIRI is where to head next.


He mentioned the fluid might be stemming from the amount of tumor growth happening. He said it accounts for his fatigue most likely also.
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm 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.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

Mohrfamily
Posts: 267
Joined: Tue May 22, 2018 4:04 pm

Re: Cea on the rise

Postby Mohrfamily » Tue Feb 25, 2020 5:36 pm

Well this is it. my liver has ben taking over by cancer. and still climbing at very fast rate. so to all my friends and family.. now would be the time at ur convence to come say good byes. thank u.

My husband's Facebook post today, and just like that my world crashes all around me and our son has a music program for 2nd grade tonight
Last edited by Mohrfamily on Tue Feb 25, 2020 5:56 pm, edited 1 time in total.
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm 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.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

Claudine
Posts: 492
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Cea on the rise

Postby Claudine » Tue Feb 25, 2020 5:44 pm

Wait, what??? What about Folfiri? This is so very sudden! I sent you a PM too...
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 75.5
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 03/21: stable

Mohrfamily
Posts: 267
Joined: Tue May 22, 2018 4:04 pm

Re: Cea on the rise

Postby Mohrfamily » Tue Feb 25, 2020 5:51 pm

I don't know how to answer that. Hes doing folfiri tomorrow that's all I can wrap my mind around.
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm 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.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

Claudine
Posts: 492
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Cea on the rise

Postby Claudine » Tue Feb 25, 2020 5:54 pm

And that's the thing to do - one step at a time! My husband is also very much a pessimist and whenever there's a setback, it sends him spiraling down... Until a new plan is put into place, and then he rallies back up. Hopefully your husband will too. I hope you can lose yourself in your son's music program tonight 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 75.5
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 03/21: stable

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

Re: Cea on the rise

Postby juliej » Tue Feb 25, 2020 6:22 pm

Mohrfamily wrote:Well this is it. my liver has ben taking over by cancer. and still climbing at very fast rate. so to all my friends and family.. now would be the time at ur convence to come say good byes. PM me. thank u.

My husband's Facebook post today, and just like that my world crashes all around me and our son has a music program for 2nd grade tonight

It's well documented that patients with positive attitudes are better able to cope with disease and treatment-related problems. His attitude is one of resignedness to his "fate" and in the long run that's his choice. When the cancer is growing, you're in pain, and chemo is causing its own brand of misery, resignation can be very seductive. You are tired, scared, and sick, and the chemicals coursing through your veins also affect your emotions. I don't blame him, even though I know of others who would love to be in his place since he still has options and they don't.

At the risk of sounding judgemental though, I think you are being subjected to emotional blackmail which is making things worse for you both. This choice is his and you are in no way to blame for whatever decision he makes.

I think you need to have a long, honest conversation with him about what he wants instead of getting your info from his Facebook page. Does he want to stop treatment and go into palliative care, despite the fact that he hasn't run out of options yet (including clinical trials)? Would he like to speak with a counselor about that decision to make sure he understands what that entails?

And, frankly, you need support too. This is emotionally draining for you. You can only do so much for him. Don't make yourself ill because of this. Your son needs his mum. I hope you can get the support (counseling, family, close friends) that you need to get through this. That is key.

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

stu
Posts: 1461
Joined: Sat Aug 17, 2013 5:46 pm

Re: Cea on the rise

Postby stu » Tue Feb 25, 2020 6:37 pm

Thinking about you both . Lots of good advice and I am holding out for chemo to start working again on his tumours .
Maybe a bit of distance between this hurdle and a few chemos under his belt he will feel a bit more reassured .
Take care ,
Court
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: 267
Joined: Tue May 22, 2018 4:04 pm

Re: Cea on the rise

Postby Mohrfamily » Tue Feb 25, 2020 7:47 pm

juliej wrote:
Mohrfamily wrote:Well this is it. my liver has ben taking over by cancer. and still climbing at very fast rate. so to all my friends and family.. now would be the time at ur convence to come say good byes. PM me. thank u.

My husband's Facebook post today, and just like that my world crashes all around me and our son has a music program for 2nd grade tonight

It's well documented that patients with positive attitudes are better able to cope with disease and treatment-related problems. His attitude is one of resignedness to his "fate" and in the long run that's his choice. When the cancer is growing, you're in pain, and chemo is causing its own brand of misery, resignation can be very seductive. You are tired, scared, and sick, and the chemicals coursing through your veins also affect your emotions. I don't blame him, even though I know of others who would love to be in his place since he still has options and they don't.

At the risk of sounding judgemental though, I think you are being subjected to emotional blackmail which is making things worse for you both. This choice is his and you are in no way to blame for whatever decision he makes.

I think you need to have a long, honest conversation with him about what he wants instead of getting your info from his Facebook page. Does he want to stop treatment and go into palliative care, despite the fact that he hasn't run out of options yet (including clinical trials)? Would he like to speak with a counselor about that decision to make sure he understands what that entails?

And, frankly, you need support too. This is emotionally draining for you. You can only do so much for him. Don't make yourself ill because of this. Your son needs his mum. I hope you can get the support (counseling, family, close friends) that you need to get through this. That is key.

Juliej


Our little 5 year old girl watched me cry I'm ashamed to say but she wouldn't leave my side. And our son did great in his play, had me laughing with his unscheduled air guitar.
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm 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.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

JJH
Posts: 301
Joined: Mon Apr 24, 2017 7:26 am

Re: Cea on the rise

Postby JJH » Wed Feb 26, 2020 8:03 am

juliej wrote:..And, frankly, you need support too. This is emotionally draining for you...I hope you can get the support (counseling, family, close friends) that you need to get through this. That is key.

Juliej

14 Ways Caregivers Can Care for Themselves
https://health.usnews.com/health-news/patient-advice/slideshows/14-ways-caregivers-can-care-for-themselves
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

boxhill
Posts: 693
Joined: Fri Apr 06, 2018 11:40 am

Re: Cea on the rise

Postby boxhill » Wed Feb 26, 2020 9:51 am

I completely agree with Juliej.

I am worried about you and your children, and your husband.

I think that many of us have gone through times when the thought of just giving up crosses our minds. I was on a drug last year that honestly was beginning to make me feel that death could be the best option. I was in so much pain last fall that I just couldn't imagine living like that for much longer.

I hope that you and he can find a way out of this emotional pit. Has he had therapy? Any discussion of an antidepressant?

Posting a message if impending doom on Facebook somewhat out of the blue...it sounds like he is in crisis.
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
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

Mohrfamily
Posts: 267
Joined: Tue May 22, 2018 4:04 pm

Re: Cea on the rise

Postby Mohrfamily » Wed Feb 26, 2020 3:56 pm

He claims he was overcome by what he heard. Has since taken the post down and kinda apologized but I've made it clear that text message apologies won't do. I haven't really talked to him yet today, saving it for face to face confrontation.
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm 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.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

Claudine
Posts: 492
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Cea on the rise

Postby Claudine » Wed Feb 26, 2020 4:12 pm

Has he received his Folfiri treatment yet? How did that go?
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 75.5
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 03/21: stable

Mohrfamily
Posts: 267
Joined: Tue May 22, 2018 4:04 pm

Re: Cea on the rise

Postby Mohrfamily » Wed Feb 26, 2020 6:25 pm

He had it, mentioned that he was almost life lighted to a bigger facility I've been to stubborn to get details yet.
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm 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.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

radnyc
Posts: 439
Joined: Tue Apr 06, 2010 6:32 pm

Re: Cea on the rise

Postby radnyc » Wed Feb 26, 2020 6:38 pm

This is why I refused to let my significant other or family get too involved in my treatment, I felt that as the person undergoing the rigors of cancer I was not going to dump on them more than they already have to deal with. I did my own research, found the medical facility and treatment that I wanted on my own, went through all of the chemo sessions on my own except for the first one. At that one I let my parents come, but after seeing their pained expressions while I was being treated I said NEVER AGAIN. This is how I feel, not judging. I chose to own my cancer not share it so much.
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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