Well, its been a minute

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Mohrfamily
Posts: 254
Joined: Tue May 22, 2018 4:04 pm

Well, its been a minute

Postby Mohrfamily » Tue Jun 09, 2020 9:13 am

... for those who've followed my husband's story here is an update and its not good.

He has all the symptoms if liver failure except for coma and jaundice. The FOLFIRI isn't working even with vectibix the numbers started rising again. Doctor talked about adding oxaliplatin on top of FOLFIRI and vectibix but that didn't sound like a good idea considering oxaliplatin is part of its own regimin. He's been having more and more issues going to the bathroom and tells me he feels like his insides are coming out. He says the oncologist have him maybe 3 months less if he chooses not to continue treatment.
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

boxhill
Posts: 555
Joined: Fri Apr 06, 2018 11:40 am

Re: Well, its been a minute

Postby boxhill » Tue Jun 09, 2020 10:51 am

I'm so sorry to hear this.

Is he still getting the HAI infusions?
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

Claudine
Posts: 385
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Well, its been a minute

Postby Claudine » Tue Jun 09, 2020 10:57 am

The treatment his onc is thinking of sounds like folfoxiri. There are publications and trial results if you google it; it seems that it may be better than just folfiri or folfox, but with intense side effects.
I'm really sorry that your husband is struggling so much and is in a difficult situation. As a spouse, I also am very sorry for you. Those are difficult moments. Hopefully you both can find some support and help through the medical community, friends, and relatives. Thinking of you all 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

User avatar
ginabeewell
Posts: 420
Joined: Wed Oct 24, 2018 10:30 am

Re: Well, its been a minute

Postby ginabeewell » Tue Jun 09, 2020 11:00 am

I know a few patients who were on FOLFIRINOX so it’s not without precedent - not sure about that AND Vectibix however, that sounds like a lot.

A friend of mine is working with the U of St Louis which is apparently doing tests for live liver transplants. Early on this was something I explored at the Cleveland Clinic, which I know had some success with this, too. Is this anything your husband has explored?
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: 254
Joined: Tue May 22, 2018 4:04 pm

Re: Well, its been a minute

Postby Mohrfamily » Tue Jun 09, 2020 5:14 pm

He won't return to Cleveland clinic. For anything I feel like he's looking for and excuse to quit now
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: 420
Joined: Wed Oct 24, 2018 10:30 am

Re: Well, its been a minute

Postby ginabeewell » Tue Jun 09, 2020 6:06 pm

Mohrfamily wrote:He won't return to Cleveland clinic. For anything I feel like he's looking for and excuse to quit now


I forgot you guys had an experience there already. It's University of St Louis who is doing this new test, but sounds like he may not be in the right frame of mind to explore?

I'm sorry. It's so, so hard. I remember at the beginning of all this thinking i would do anything i had to do to stay alive, but it is amazing how quickly that enthusiasm can be zapped with the daily onslaught of feeling yucky. It's just a lot to manage both emotionally and physically. I hope he gets a second wind.
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

Nordy1
Posts: 40
Joined: Tue Oct 02, 2018 11:45 pm

Re: Well, its been a minute

Postby Nordy1 » Tue Jun 09, 2020 10:45 pm

I’m so sorry to hear this, my thoughts and prayers are with you

nordy1
jan 2018 emergency room via ambulance rectal bleeding event
dx Feb 2018 sigmoid adenocarcinoma 2.5 cm, 3 small extranodal foci resected march 2018
stage 3A T1 n1c
multiple indeterminent nodes in liver, lungs and kidney
11 rounds folfox with oxyplatin stopped with full nephropathy of hands and feet
currently waiting next scan in Feb. 2019

Rikimaroo
Posts: 297
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Well, its been a minute

Postby Rikimaroo » Wed Jun 10, 2020 9:54 am

Mohrfamily wrote:He won't return to Cleveland clinic. For anything I feel like he's looking for and excuse to quit now


I am sorry this is happening. Like your husband my cancer keeps coming back and now I am going to have to be on maintenance chemo for life. Excuse to quit or not, no one knows how hard and difficult it is doing chemotherapy other then the recipient. No one can share or feel the agony, distraught, pain, agitation, fatigue, disturbed, nauseous, tummy aches, weird peeing habits, mouth sores, jaw pain, thin hair, hair falling out, hyper pigmentation, neuropathy and many many others to name a few. I understand you want your husband to keep going and keep trying, but it sounds to me he is at his wit's end where many of us has been. At a certain point you have to choose quality of life vs longevity of life and be able to spend time with your loved ones at a more balanced and less depressed state. Ginabell made a statement regarding liver transplant and surely there are other major centers that do this other then Cleveland Clinic (which is where I go). Is this an option for him. This is so difficult I truly understand.

Chemo is so brutal. Cancer is also. I wish more can be said and things can be done to rescue your husband from the possibility of not being here given the circumstances. These thoughts also circulate my head and my wife is staying strong. At some point, there is not much that one can do and its best to spend every last minute with the person you love and cherish the moments as much as possible in a positive manner.

Rikimaroo
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
FolFiri 11/6 - 5 rounds
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
Maintenance Chemo begin 6/3/20 FolFiri

Mohrfamily
Posts: 254
Joined: Tue May 22, 2018 4:04 pm

Re: Well, its been a minute

Postby Mohrfamily » Wed Jun 10, 2020 4:37 pm

He's under 200lbs now they have given him a small dose of the oxaliplatin this week but plan to up that for next time. The plan is still FOLFIRI with vectibix and oxaliplatin
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

DarknessEmbraced
Posts: 3465
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Well, its been a minute

Postby DarknessEmbraced » Sat Jun 13, 2020 12:01 pm

I'm so very sorry he's having such a hard time!*hugs* I hope his chemo goes well and that he feels better soon!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Mohrfamily
Posts: 254
Joined: Tue May 22, 2018 4:04 pm

Re: Well, its been a minute

Postby Mohrfamily » Sun Jun 28, 2020 8:55 am

Well scans came back bad showed he has 5% left of his liver before he could go into failure, it's also spread to his brain now. His numbers did show a drop from 6-7000 down to 3-4000. He's been having a lot more pain during an after chemo now to that they've added oxaliplatin
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: 385
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Well, its been a minute

Postby Claudine » Sun Jun 28, 2020 10:22 am

I’m very sorry about the spread, and the pain. But its positive that numbers are going down, hopefully that will be followed by liver tumor shrinkage. Are they planning to treat the brain mets (cyberknife? Surgery?). Wishing you strength for the days ahead 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

AmyG
Posts: 338
Joined: Tue Dec 25, 2018 8:08 pm

Re: Well, its been a minute

Postby AmyG » Sun Jun 28, 2020 10:37 am

Well that just sounds like total bullshit.

Are you doing as well as can be expected? Kids okay?
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!

DarknessEmbraced
Posts: 3465
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Well, its been a minute

Postby DarknessEmbraced » Sun Jun 28, 2020 10:46 am

I'm so very sorry his cancer has spread more and he's in pain!*hugs* I hope his doctors can prescribe something for the pain and that his chemo goes well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Mohrfamily
Posts: 254
Joined: Tue May 22, 2018 4:04 pm

Re: Well, its been a minute

Postby Mohrfamily » Sun Jun 28, 2020 5:53 pm

It's been rough.

I don't think surgery options have been brought up.
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


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