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 🙌

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@colleenyoung

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

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Hello. I started 2 days ago with cisplatine and jemzar but I couldn't afford the cost of imfinzi it is too expensive 😭 yesterday was not bad but at night I felt nausea and chills with heavy head. Thank you for asking

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@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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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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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

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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@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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@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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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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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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@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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