1. < Liver Cancer

Living with Stage 4 Liver Cancer

Posted by cu2 @cu2, May 17, 2022

Has anyone been diagnosed with Liver Cancer, I'm just seeking knowledge and my emotions are all over the place. Everyday is a gift and I will forever be Grateful, Thankful and Blessed 🙌

Interested in more discussions like this? Go to the Liver Cancer Support Group.

jshirley | @jshirley | Jun 27, 2023
In reply to @lynwarn "Dear Heart, Emotions are good and bad in any situation. I have stage 4 liver cirrhosis..." + (show)
@lynwarn

Dear Heart,
Emotions are good and bad in any situation. I have stage 4 liver cirrhosis with a 1.8 size cancer tumor. I gave to wait until the tumor grows to a size 2, then they will add radiation beads in the tumor, treat the diseased blood and plan on a liver transplant. I'm 66. When I first heard, I remember being overwhelmed, living in chaos and overthinking. My resolution for emotion is sharing with only those I trusted or here. It helped me to get it out, and find support groups. It's okay to cry. Crying relieves stress. Stress can be devastating to the healing process. I'm open to talk more. I've found I need support with others who have experience. I've been in this process since November and have improved emotionally. It's still on the surface daily.

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Hi @ lynwarn,
I am new to this and wondering what type Cancer do you have. Is it strictly HCC or a Mets from somewhere else??
I also have cirrhosis but diagnosed with CCA (Bile duct cancer). I had stable liver disease and just monitor by the Charlotte Transplant team. But all that changed in Fall 2022.
I have been septic with E. Coli and they couldn’t figure out the source. Long story short… I have since had 4 ERCPs, they found the duct tumor on the Third procedure and therefore had to repeat trying to get better biopsies. My liver team immediately sent me to an instate transplant center and Mayo.
Mayo has done many scans and labs. But I’m waiting on next step.

So are you on the LTP list?? Is Mayo treating the cancer? Are you local to the facility you go to?

I am a 7-8 hr. Drive each way to JAX. They mentioned on my consultation the protocol for my situation would 5 wks. Chemo and Radiation then if I am accepted, they keep me on oral chemo until transplant. But my cancer is not well treated without transplant as the cirrhosis disqualifies me a resection.
I’m sorry for lengthy response but when I read you have cirrhosis and liver Ca. I had to reach out.

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jshirley | @jshirley | Jun 27, 2023
In reply to @jalewallen74 "I have Bile Duct Cancer which spread to my liver. I did a year of chemotherapy..." + (show)
@jalewallen74

I have Bile Duct Cancer which spread to my liver. I did a year of chemotherapy and am on immunotherapy currently. My treatment team has me drinking 2 quarts of water a day to keep my kidneys working and flushing out dead cancer cells and the toxic chemo drugs. I like to add lemon juice. It's not easy to drink that much water and it requires a lot of peeing but I remain fairly healthy and it's part of my treatment. A positive attitude is proven to help along with a Spiritual Connection with a Higher Power. I stay socially involved with other patients on this forum and their treatments- working, not working, side effects etc. I have my bad days emotionally too, especially before and after treatment and before doctor visits. I am thankful for treatment that is working. John

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Hi John,
A year of chemo!!! Oh my! I too have bile duct ca and they did a MRCP , MRI, Chest CT scan and a bunch of labs.
My tumor markers are elevated.
So are they or have they done a resection? And is Mayo doing the Chemo?

I can’t have a resection as I also have cirrhosis from Hemochromatosis, Polycythemia, and NASH.
Do you see the oncologist and the Transplant teams? Or just one of those groups.
I do wish you well in you journey.

James

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dbamos1945 | @dbamos1945 | Jun 28, 2023

Hi cu2@cu2!
Many months ago I recall we shared a post regarding our stage 4 liver metastases. My primary NET tumor is small intestine, as I think your’s is too. I haven’t been offered any procedures except the monthly Lanreotide (SamoDepot) shot. I offer you hope and a hug that your tests come back stable. The “unknown” try’s to drive us crazy so don’t listen to any negative thoughts! Results only confirm that…“It is what it is!” Many hugs… Bette

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1 reply
maro6 | @maro6 | Nov 24, 2023

I ve been diagnosed with liver cancer and I will start chimo and immunotherapy next week. Can you help me with more info. It would be much appreciated

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 24, 2023
In reply to @maro6 "I ve been diagnosed with liver cancer and I will start chimo and immunotherapy next week...." + (show)
@maro6

I ve been diagnosed with liver cancer and I will start chimo and immunotherapy next week. Can you help me with more info. It would be much appreciated

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Hello @maro6 and welcome to Mayo Connect. I am glad that you found this forum. Being diagnosed with cancer can be frightening and this is a good place to find support.

You mentioned that you would be starting chemo and immunotherapy next week. Do you know the name of the chemo drug(s) you will be taking? If so, other members who are taking the same meds might be able to help you with information.

How frequently will you be given the chemo and immunotherapy? What type of information are you looking for?

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1 reply
maro6 | @maro6 | Nov 26, 2023
In reply to @hopeful33250 "Hello @maro6 and welcome to Mayo Connect. I am glad that you found this forum. Being..." + (show)
@hopeful33250

Hello @maro6 and welcome to Mayo Connect. I am glad that you found this forum. Being diagnosed with cancer can be frightening and this is a good place to find support.

You mentioned that you would be starting chemo and immunotherapy next week. Do you know the name of the chemo drug(s) you will be taking? If so, other members who are taking the same meds might be able to help you with information.

How frequently will you be given the chemo and immunotherapy? What type of information are you looking for?

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Imfinsy and sisplatine I am not sure what else

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1 reply
ricki8 | @ricki8 | Nov 27, 2023
In reply to @dbamos1945 "Hi cu2@cu2! Many months ago I recall we shared a post regarding our stage 4 liver..." + (show)
@dbamos1945

Hi cu2@cu2!
Many months ago I recall we shared a post regarding our stage 4 liver metastases. My primary NET tumor is small intestine, as I think your’s is too. I haven’t been offered any procedures except the monthly Lanreotide (SamoDepot) shot. I offer you hope and a hug that your tests come back stable. The “unknown” try’s to drive us crazy so don’t listen to any negative thoughts! Results only confirm that…“It is what it is!” Many hugs… Bette

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Hi dbamos1945
When was your diagnosis and how long have you been on Lanreotide?
I also have stage 4 liver metastases with primary in my small intestine. Found by accident in late March 2023. We are all different (esp. with NETs), so it would be nice to compare, but somewhat difficult. I started in Aug. with every 4 weeks of Lanreotide, but moved it down to every 3 weeks (after 2 months). Going in for Bland Embolization tomorrow and then PRRT for 32 weeks. There is a newly approved system of non-invasive ultrasound - available any day now in designated locations in the U.S.
https://histosonics.com/
I found this and my surgeon and oncologist suddenly perked up.
It is very important to be pro-active and be your own advocate for all your treatment. The medical system is overburdened with all the aging boomers.

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ricki8 | @ricki8 | Nov 27, 2023

Hi Cu2
It might be helpful if you read my comment to dbamos1945.
BTW, most of us do a freakout when we first learn that we have cancer inside us. Turn that into action and it will be better both for your mindset and your success.
💕

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dbamos1945 | @dbamos1945 | Nov 27, 2023

Ricki8 & Cu2:
Dx 10/22 by endoscopic biopsy. 11/22 Oncologist began Samotuline Depot and tomorrow I begin Lanreotide every 28 days. Tumors shrank on 8/23 MRI.
I will keep Ricki in my thought for surgery. When are you scheduled for PRRT to begin? I know you have a lot on your plate now, but would like to know what lab tests led them to embolization and PRRT treatment.
Best of luck and improved health to you Ricki! Reach out to me anytime to chat.
Take care, Bette

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 1, 2023
In reply to @maro6 "Imfinsy and sisplatine I am not sure what else" + (show)
@maro6

Imfinsy and sisplatine I am not sure what else

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Hi @maro6, when will you be starting treatment with cisplatin and durvalumab (Imfinzi)? How are you doing today?

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