Inoperable liver mets now borderline operable

[TrinBliss]

Hi there,

My name is Trinity and I am the decision maker, my father is the 'caregiver' of my 53 yo step-mom stage IV colon cancer with liver mets.

Carol was diagnosed in 9/16 after a crisis with 98% tumor blockage in her colon. She immediately had a colon resection and the surgeon told us her liver was so full of tumors that maybe she would live two years. We began chemo on Halloween 2016 with a CEA of 192. She had the classic combo of Folfox and Avastin but also did a total lifestyle change health and eating wise. Last month her CEA was down to 25 and her scan showed all but one tumor in the left lobe gone that lies right on the line between lobes and three in the right. When asking her oncologist about options now he said stay on chemo to keep her alive as long as we can. Instead we went to Moffitt to meet with their GI doc Dr. Kim who presented to the tumor board and had determined she is a borderline case and wants to do as follows:

Stop the chemo
Ablate the one tumor on the lobe line
Cut off blood supply to the right lobe
Give the liver 4-6 weeks to grow
If grows remove the right lobe
4-5 weeks chemo after surgery

Steps 1-3 have to work and more tumors can't grow during step 3. I asked why not stay an chemo longer since she is such a great responder and they said the liver surgeon said the longer on chemo the harder for the liver to rebound and this is her best chance.

Today we had an MRI and met with the radiologist at Moffitt. We are three weeks off chemo yesterday. They have scheduled the surgical consult for Monday Feb 13th after the tumor board meets again and they decide if they want to ablate the borderline tumor or the surgeon may take a little extra of that lobe. The embolization is scheduled for Monday Feb 20th. Everything is contingent on the left lobe growing which they don't sound super confident about.

I have concerns about being off chemo so long even though it would seem she would need to be off the Avastin in order for the liver to grow. We had talked about going to MSKCC for a third opinion but it feels like we have a very limited window and we don't want to stay off chemo even longer.

Any experience, guidance or tips????

Trinity -
Patient- Carol
dx 9/2016 CRC stage iv liver mets
colon resection 9/16
Folfox/Avastin 10/16-1/17
(Hope I did that right )

[rp1954]

This has been discussed here and elsewhere as ALPPS, to buy time, or hopefully as curative surgeries.

[stu]

Hi,
Welcome to the forum. Certainly with liver surgery there is a window of opertunity and we were told a similar story five years ago. The risks were spelt out clearly to my mum . At that point I backed off as it was made clear it was not an exact science with lots of variables. My mum weighed up the options and decided to proceed. I was more comfortable that she was fully informed but made a choice for herself. It was a big hit but her liver has remained clear. My mum weighted up the other senario of staying on chemo and despite being a fantastic responder wanted to try surgery.
With other stages in cancer there is treatment protocol to follow . Stage 4 becomes more of a judgement call at times.
What is your step mum thinking about it all?
Such hard decisions for all involved.
Take care,
Stu

[TrinBliss]

This has been discussed here and elsewhere as ALPS, to buy time, or hopefully as curative surgeries.

I have read a massive amount of posts, including yours on supplementing, amazing stuff. I am ordering everything suggested. I guess I am just worried about Moffitt vs. Sloan or just worried period.

[BeansMama]

Like Stu, I wonder what your step mothers thoughts on the options are. Personally I would go for it, but I am currently doing everything I can to get my large inoperable liver met under control so I can have a pretty radical surgery, so my viewpoint may be tainted by that.

I know being off chemo that long is scary, you worry about growth and spread during that time. CRC is usually a slow growing cancer - unless you happen to have Lynch syndrome like I do. Is your step mother Lynch positive? It is amazing how well she responded to the chemo. The issue with long term chemo is the tumors can become resistant to the chemo and that would make treatment more difficult.

Ultimately it has to be your step mothers decision. What are her thoughts on the options? It sounds like your second opinion doctors are more aggressive with their treatment than your first Oncologist was. Aggressive can be a good thing, especially when you are stage IV. To go from inoperable to operable is a wonderful thing.

I will keep you and your family in my prayers.

[Stanfordmom]

While waiting, suggest going to Sloan for a third opinion. Your step mom may be eligible for the implant of the HAI (Hepatic Artery Infusion) pump, which can deliver high concentration chemo directly to her liver. It has gotten people from inoperable to operable, also as adjunct chemo, it has kept quite a people on this board NED for a long time.

Best wishes for her treatment!

Sha

[mariane]

I also recommend forwarding your mom's scans ans labs to Dr Kemeny at MSKCC in NY. I will write again my story. I still remember the dark months without hope when I got diagnosed and searched internet for any stage 4 colon cancer survivors. I desperately wanted to find success stories.
Here is my own
I am relatively newly diagnosed so anything is possible but thanks to Dr Kemeny I have had almost 2 years of good life and keep hope for the future.
I was diagnosed in June 2015 with 10+ liver mets as well. The largest measured 7.5cm. One of my tumors started pressing bile ducts so I had very slight increase of bilirubin. My first oncologist told me I was inoperable, incurable. I was offered and underwent palliative rectal tumor resection to prolong my life (decrease tumor burden ). I sent my scan and lab results to Dr Kemeny and 2 weeks after my resection I had an appointment with her. I flew from Europe to see her.She decided to give me FOLFIRINOX chemo without Avastin. Dr Kemeny usually wants to re-scan after 4 chemo treatments to check the response and do surgery ASAP. I got 95% pathological response to FOLFIRINOX chemo and had hepatic pump implanted in 10/2015. My CEA went down <2 in MSKCC at that time (10/2015) from 140 when I was diagnosed and stayed there ever since. I had 2 stage liver surgery because of tumor burden. I had 100% pathological response after FUDR and I am in remission (no evidence of cancer) since 05/2016. I am off chemo since 10/2016 and had another clean scan and low CEA 1.1 last Sunday.
My children ( twins) were 6 when I got diagnosed. They will be 8 soon and I am here with them.

Good Luck!

[TrinBliss]

We met with Dr Anaya at Moffitt yesterday, he is the liver surgeon. They believe that she is a surgical candidate, their plan is to block her right lobe by PVE on 2/27, on 2/28 do a laparoscopic ultrasound of the left lobe to confirm the MRI was accurate and it is clear, if there are any remnants ablate them at that time and also incise the liver where they intend to resect to encourage the left side to grow. They are concerned that her platelet counts remain low so they will be checking her liver pressure at that point too. If both those go as scheduled we will wait 4 weeks for the left side to grow enough with a CT at that point and if enough growth surgery the following week. We were really impressed with the Radiologist and the Surgeon at Moffitt and they feel pretty positive.

Our plan is if something goes awry and this is cancelled at any point to transfer her care to MSK to Dr Kemeny. We are hoping that if all of this is successful we can reserve going to Sloan for when it reoccurs and still have options if that makes sense. <3