Cea on the rise

Please feel free to read, share your thoughts, your stories and connect with others!
Mohrfamily
Posts: 249
Joined: Tue May 22, 2018 4:04 pm

Re: Cea on the rise

Postby Mohrfamily » Fri Feb 21, 2020 3:16 pm

Just got confirmation: FOLFIRI starts next week but the insurance will not approve vectibix. The hits just keep coming.
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: 352
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Cea on the rise

Postby Claudine » Fri Feb 21, 2020 3:52 pm

This is nuts! Did they give you a reason for this?
Would they approve Avastin instead? it's not the same thing, but has been shown to do a better job on mets than Folfiri alone.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - 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 7.6
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 small uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

Mohrfamily
Posts: 249
Joined: Tue May 22, 2018 4:04 pm

Re: Cea on the rise

Postby Mohrfamily » Fri Feb 21, 2020 6:34 pm

Claudine wrote:This is nuts! Did they give you a reason for this?
Would they approve Avastin instead? it's not the same thing, but has been shown to do a better job on mets than Folfiri alone.

The oncologist is still trying to get it. They're looking at the numbers having risen as not medically sound to continue, but he wasn't ON vectibix when the numbers went up. I wondered about the Avastin myself he goes in for FOLFIRI education Monday and 5FU +FOLFIRI Wednesday.
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

User avatar
ginabeewell
Posts: 414
Joined: Wed Oct 24, 2018 10:30 am

Re: Cea on the rise

Postby ginabeewell » Fri Feb 21, 2020 9:51 pm

Mohrfamily wrote:Just got confirmation: FOLFIRI starts next week but the insurance will not approve vectibix. The hits just keep coming.


Ugh was so sorry to read the update. Vectibix was awful for me but it sure did a number on my mets, so I think you are right to keep pushing for it. I cannot think of why insurance wouldn’t approve unless his genetic type is the type that doesn’t respond to it (which his doctor would know so guessing that's not the case).

Good luck, will be pulling for you.
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

Mohrfamily
Posts: 249
Joined: Tue May 22, 2018 4:04 pm

Re: Cea on the rise

Postby Mohrfamily » Sun Feb 23, 2020 8:10 am

ginabeewell wrote:
Mohrfamily wrote:Just got confirmation: FOLFIRI starts next week but the insurance will not approve vectibix. The hits just keep coming.


Ugh was so sorry to read the update. Vectibix was awful for me but it sure did a number on my mets, so I think you are right to keep pushing for it. I cannot think of why insurance wouldn’t approve unless his genetic type is the type that doesn’t respond to it (which his doctor would know so guessing that's not the case).

Good luck, will be pulling for you.


Thanks Gina, I get the impression from the new surgical oncologist that OSU wasn't monitoring DH right, if at all. This is so frustrating. DH has been pretty tight lipped, makes me feel like he might be blaming me or maybe it's my own guilt I can't help but feel. I ask him what he's thinking because there's a lot going on he always says nothing with a half hearted smile.
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: 249
Joined: Tue May 22, 2018 4:04 pm

Re: Cea on the rise

Postby Mohrfamily » Mon Feb 24, 2020 10:50 am

So my hubby got more details on the scans, it's showing fluid in his abdomen and that there pump doesn't seem like it's in the right place.
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: 432
Joined: Tue Apr 06, 2010 6:32 pm

Re: Cea on the rise

Postby radnyc » Mon Feb 24, 2020 11:11 am

Darn! Sorry to hear this, sounds like the team at OSU weren't up to speed. Any chance you two can go to MSK to address these issues? I'm sure they'll know what to do fast.
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

Claudine
Posts: 352
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Cea on the rise

Postby Claudine » Mon Feb 24, 2020 11:16 am

Mohrfamily wrote:So my hubby got more details on the scans, it's showing fluid in his abdomen and that there pump doesn't seem like it's in the right place.


Which is terrible, but at least better than if the pump had been in the right place but your husband unresponsive to treatment! Hopefully this issue can be corrected soon (another surgery??) and the pump can start doing its job!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - 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 7.6
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 small uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

Mohrfamily
Posts: 249
Joined: Tue May 22, 2018 4:04 pm

Re: Cea on the rise

Postby Mohrfamily » Mon Feb 24, 2020 3:12 pm

Fluid in the pelvis and upper abdomen (where he's had bad pain). He's pretty sure he wants the pump out. It's been one problem after another
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

User avatar
Jack&KatiesMommy
Posts: 613
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Cea on the rise

Postby Jack&KatiesMommy » Mon Feb 24, 2020 3:34 pm

Yikes....I understand how upset you both must be...it sounds like some mistakes were made. However, you may want to think long and hard before removing the HAI pump. Maybe you could consult with MSK before you make a decision. It sounds like your husband has a high tumor burden in his liver....and the HAI pump may be the very thing that can get rid of the liver tumors (which are the most pressing.)

Cynthia
Cynthia
Mommy to Jack (8) now (17) and Katie (4) now (13)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

radnyc
Posts: 432
Joined: Tue Apr 06, 2010 6:32 pm

Re: Cea on the rise

Postby radnyc » Mon Feb 24, 2020 7:11 pm

Think hard about removing the pump at this point, remember once it’s out it CAN NOT BE PUT BACK AGAIN, ever.
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

User avatar
juliej
Posts: 3106
Joined: Thu Aug 05, 2010 12:59 pm

Re: Cea on the rise

Postby juliej » Mon Feb 24, 2020 8:24 pm

Mohrfamily wrote:I get the impression from the new surgical oncologist that OSU wasn't monitoring DH right, if at all. This is so frustrating. DH has been pretty tight lipped, makes me feel like he might be blaming me or maybe it's my own guilt I can't help but feel. I ask him what he's thinking because there's a lot going on he always says nothing with a half hearted smile.

First of all, your DH should not be blaming you. You are supporting him in the best way you know how. And please don't feel guilty! Cancer is hard enough on everyone -- the patient and the caregiver -- without second-guessing the hard decisions that have to be made. All any of us can do is get the best information we can, make the best choice for us, and then see what happens. Don't let guilt eat you up. You are incredibly supportive to him! (((Hugs)))

It certainly sounds like OSU dropped the ball on HAI pump follow-up care. I would contact their "Patient Representative" (or whatever they call it at OSU) and file an official complaint. Then they will investigate it and see what happened. They may be able to come up with a plan to reposition the pump if that's the issue. The definitely owe you an explanation.

I agree with the others about thinking twice before removing the pump. If it was "inexpertly" implanted, or if it moved around for some reason, a surgeon might be able to correct the situation. But there is no correction if the pump is the only thing that will kill his liver tumors and it is removed.

You also need to find out what's causing the ascites (fluid in the abdomen). That could be related or not.

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

boxhill
Posts: 522
Joined: Fri Apr 06, 2018 11:40 am

Re: Cea on the rise

Postby boxhill » Mon Feb 24, 2020 8:57 pm

Sounds like it's time to go straight to MSK and find out what the hell is going on.

Far from an expert here, but I had the impression that the pump with FUDR is supposed to work in tandem with systemic chemo, and for some reason your H was left off of systemic chemo for months, and his HAI pump has apparently not been managed correctly by the locals.

Before acting impetuously, he should go to the experts at MSK and see if he can get back on track.

And this business of blaming you is completely out of line. I don't mean to be mean, but it is time that he take responsibility like a grownup and stop acting out, burying himself in denial, etc. He owes it to you, the rest of your family, and himself.

Am I overstepping? Maybe, but I have Stage IV disease myself, so maybe I get to just say it.

My best to you and your family.
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 CT NED
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
Suspend treatment

radnyc
Posts: 432
Joined: Tue Apr 06, 2010 6:32 pm

Re: Cea on the rise

Postby radnyc » Mon Feb 24, 2020 11:00 pm

boxhill wrote:Sounds like it's time to go straight to MSK and find out what the hell is going on.

Far from an expert here, but I had the impression that the pump with FUDR is supposed to work in tandem with systemic chemo, and for some reason your H was left off of systemic chemo for months, and his HAI pump has apparently not been managed correctly by the locals.

Before acting impetuously, he should go to the experts at MSK and see if he can get back on track.

And this business of blaming you is completely out of line. I don't mean to be mean, but it is time that he take responsibility like a grownup and stop acting out, burying himself in denial, etc. He owes it to you, the rest of your family, and himself.

Am I overstepping? Maybe, but I have Stage IV disease myself, so maybe I get to just say it.

My best to you and your family.


Well said!
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

JJH
Posts: 290
Joined: Mon Apr 24, 2017 7:26 am

Hepatic arterial infusion (HAI) pump complications

Postby JJH » Tue Feb 25, 2020 12:20 am

boxhill wrote:Sounds like it's time to go straight to MSK and find out what the hell is going on...

Here is a review article on HAI pump therapy that mentions the different kinds of complications that can occur and what can be done for different kinds of problems. The article mentions MSK as a leader in HAI therapy issues.

Hepatic arterial infusion pump chemotherapy for colorectal liver metastases: an old technology in a new era
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3921035/
"The darkest hour is just before the dawn" - Thomas Fuller (1650)


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Alex83, beach sunrise, LynnMarie and 34 guests