Just how bad is it?

Please feel free to read, share your thoughts, your stories and connect with others!
Mohrfamily
Posts: 245
Joined: Tue May 22, 2018 4:04 pm

Just how bad is it?

Postby Mohrfamily » Wed Feb 13, 2019 5:44 am

DH has innumerab lesions on every section of his liver, his biggest was just over 6x6 cm. We are trying to work with doctor Kemeny at MSK to get him to a point of resection. Thus far treatment has gone over well he still had many points to attack on the liver yet but some areas are calcified.

I just wondered because everyone is different how bad was your liver journey?
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

martd
Posts: 118
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: Just how bad is it?

Postby martd » Wed Feb 13, 2019 9:14 am

When I was diagnosed I had 17 tumors, 14 were on the right side of the liver 3 were on the left side the largest was 7 cm. When I first met with my liver surgeon I was told with a good response from chemo he could do the surgery. The plan was to first resect the left side tumors then PVE surgery allowing the liver to regenerate big enough to survive removing the right side of the liver. So far everything went well , this was without the pump. I was told a couple of times in the beginning that I wouldn't get to surgery next step would be maintenance chemo even after my first scan showing a decent response. But it was a different story from the surgeon. I did 12 rounds of folfox, 9 before and 3 in-between surgeries.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT Tp53 LOF
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9
04/19 clear scan CEA .9
07/19 clear scan CEA 1.0

User avatar
Jack&KatiesMommy
Posts: 607
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Just how bad is it?

Postby Jack&KatiesMommy » Wed Feb 13, 2019 10:25 am

You know my story by now. But I had dozens and dozens of tiny tumors throughout every lobe of my liver that could not be seen on CT scan in addition to tumors on every lobe of my liver that were visible on CT Scan.
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,

Mohrfamily
Posts: 245
Joined: Tue May 22, 2018 4:04 pm

Re: Just how bad is it?

Postby Mohrfamily » Wed Feb 13, 2019 11:08 am

Jack&KatiesMommy wrote:You know my story by now. But I had dozens and dozens of tiny tumors throughout every lobe of my liver that could not be seen on CT scan in addition to tumors on every lobe of my liver that were visible on CT Scan.


I am so very thankful for your story, I think yours was the driving force that pushed my husband to MSK when I told him what you said about MSK AND your story he mumbled "sounds like me"
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

Milk Tea
Posts: 29
Joined: Wed Feb 13, 2019 1:14 pm

Re: Just how bad is it?

Postby Milk Tea » Thu Feb 14, 2019 7:59 pm

My husband had 10+ live mets at dx, and our Oncologist didn't want to count them after lesion number 10. The biggest one was 7.9 cm. He did a MRI post 6 cycles of chemo to prepare for the liver surgery, that MRI report says there were 12 lesions, 8 on the right lobes, 4 on the left lobes and biggest one has shrunk down to 5.5 cm. During the open liver surgery, his liver surgeon was able to cut all of them out but one deep inside segment 5, he used MRI guided microwave ablation to burn it. Please definitely request to a consult appointment with an experienced oncology liver surgeon, not only listen to an Oncologist, after all, Oncologist is chemo expert not a liver expert. That made a world of difference in our case.

My husband has been NED since his liver surgery two years ago.
Wife to DH
09/2016: Dx at 50, CC Ascending colon, 10+ liver Mets
KRAS-Mut G12V, MSS, CEA 8
09/2016: Nearly blocked, Emergency colon surgery (LAR)
FOLFOXIRI+Avastin: 6 before and 6 after liver resection
01/2017: Liver resection, open, both lobes, 40% total liver cut, tumors either cut out or microwave ablation burn, all tumors are out
02/2017-01/2019 : Clean CT every 3-4 months, CEA between 2-3
06/2017-Present: Maintenance Chemo: Xeloda + Avastin

Mohrfamily
Posts: 245
Joined: Tue May 22, 2018 4:04 pm

Re: Just how bad is it?

Postby Mohrfamily » Fri Feb 15, 2019 11:17 am

Milk Tea wrote:My husband had 10+ live mets at dx, and our Oncologist didn't want to count them after lesion number 10. The biggest one was 7.9 cm. He did a MRI post 6 cycles of chemo to prepare for the liver surgery, that MRI report says there were 12 lesions, 8 on the right lobes, 4 on the left lobes and biggest one has shrunk down to 5.5 cm. During the open liver surgery, his liver surgeon was able to cut all of them out but one deep inside segment 5, he used MRI guided microwave ablation to burn it. Please definitely request to a consult appointment with an experienced oncology liver surgeon, not only listen to an Oncologist, after all, Oncologist is chemo expert not a liver expert. That made a world of difference in our case.

My husband has been NED since his liver surgery two years ago.


Who was your liver expert? We are currently on a path with MSK in hopes of the HAI pump but the oncologist mentioned not being able to remove anything.
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

Milk Tea
Posts: 29
Joined: Wed Feb 13, 2019 1:14 pm

Re: Just how bad is it?

Postby Milk Tea » Fri Feb 15, 2019 3:11 pm

liver expert is a liver surgeon with GI Oncology department in any top ranking cancer hospitals who focus only on operating liver mets from GI cancer. MSK is definitely one of the best but we are far from New York. Any of the top ranking cancer center has those liver surgeons in GI Oncology Department.

We were told by two oncologists my husband is no way a candidate for liver resection based on the fact that he had more than 10 mets and in both lobes. Both oncologists told us to finish 12 cycles of chemo and then review the possibility again. We didn't take oncologists no for answer and insisted strongly on a consultation appointment to see a liver surgeon. Liver surgeon reviewed his CT scan and MRI post 4 cycles of chemo and said " congratulations, I think we can take everything out" and he wanted to do it sooner rather than later while the liver is still in good shape. He wanted us to finish 2 more cycles of chemo (total 6) and do the surgery. He didn't want us to wait till finish the total 12 cycles our oncologists original suggested.
Wife to DH
09/2016: Dx at 50, CC Ascending colon, 10+ liver Mets
KRAS-Mut G12V, MSS, CEA 8
09/2016: Nearly blocked, Emergency colon surgery (LAR)
FOLFOXIRI+Avastin: 6 before and 6 after liver resection
01/2017: Liver resection, open, both lobes, 40% total liver cut, tumors either cut out or microwave ablation burn, all tumors are out
02/2017-01/2019 : Clean CT every 3-4 months, CEA between 2-3
06/2017-Present: Maintenance Chemo: Xeloda + Avastin

Mohrfamily
Posts: 245
Joined: Tue May 22, 2018 4:04 pm

Re: Just how bad is it?

Postby Mohrfamily » Tue Feb 19, 2019 5:48 am

Milk Tea wrote: " congratulations, I think we can take everything out" and he wanted to do it sooner rather than later while the liver is still in good shape. He wanted us to finish 2 more cycles of chemo (total 6) and do the surgery. He didn't want us to wait till finish the total 12 cycles our oncologists original suggested.


This is something I dream of being told something my husband and I wait for So badly its painful to hear anything less than that. We saw a liver surgeon at Cleveland Clinic twice in the middle of the first 6 months of chemo and at the end and while he talked about surgical options in August he didn't discuss it at all in December. We are more hopeful with MSK but still have a couple hoops to jump through (new MRI and colonoscopy) I just want a doctor to say that to US
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


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



Who is online

Users browsing this forum: Claudine, Majestic-12 [Bot] and 29 guests