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Just how bad is it?

Posted: Wed Feb 13, 2019 5:44 am
by Mohrfamily
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?

Re: Just how bad is it?

Posted: Wed Feb 13, 2019 9:14 am
by martd
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.

Re: Just how bad is it?

Posted: Wed Feb 13, 2019 10:25 am
by Jack&KatiesMommy
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.

Re: Just how bad is it?

Posted: Wed Feb 13, 2019 11:08 am
by Mohrfamily
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"

Re: Just how bad is it?

Posted: Thu Feb 14, 2019 7:59 pm
by Milk Tea
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.

Re: Just how bad is it?

Posted: Fri Feb 15, 2019 11:17 am
by Mohrfamily
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.

Re: Just how bad is it?

Posted: Fri Feb 15, 2019 3:11 pm
by Milk Tea
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.

Re: Just how bad is it?

Posted: Tue Feb 19, 2019 5:48 am
by Mohrfamily
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