Colorectal cancer with multiple liver ... - British Liver Trust

British Liver Trust

38,180 members18,723 posts

Colorectal cancer with multiple liver mets. Rare BRAF G469A mutation - anyone similar?

AthomeintheBarn profile image
14 Replies

Hi, Diagnosed in Oct 2018, with Colorectal Cancer and multiple tumours in Liver. Aged 45, farmers wife and mother of two teens. BRAF mutation G469A (v rare) MSS.

10 rounds of FOLFOIRI plus Avastin, 13 rounds of FOLFOXIRI without Oxiliplatin but increased Avastin. Scans showed reduced tumours in Liver, none elsewhere apart from Bowel. However liver still inoperable.

Last chemo on 25/11/19 whilst wait for for SIRT.

Had SIRT on 26/03.2020. During which told 'workup' scan showed multiple new, small, tumours on lungs.

Currently on numerous pain relief meds and waiting to see what happens next.

Has anyone else been through the same or similar?

Written by
AthomeintheBarn profile image
AthomeintheBarn
To view profiles and participate in discussions please or .
Read more about...
14 Replies
AyrshireK profile image
AyrshireK

Hello there, sorry you've not had any replies to your posts. Most folks on here who have experience of liver cancers it has been as a primary liver cancer rather than as a secondary to cancers elsewhere. Sorry to hear of your diagnosis and hope you get positive treatments.

Stay strong, Katie

P13jne profile image
P13jne

Hey my lovely, I don’t have any experience with cancer except for a scare at the start of my journey. That was terrifying.

I just want to let you know that if you need a shoulder please just pm or chat on here.

This site is amazing for supporting people either by just listening or by sharing experiences. Please don’t feel alone. What you’re going through will be enough for 1 person so as they say “a problem shared, is a problem halved”

Stay strong, you’re not alone.

Jane xx

LorraineLouise profile image
LorraineLouise

I have had colon resection surgery, due to diverticulitis, not cancer. I also have PBC. So I cannot compare our diseases. But I just wanted you to know that you will be in my thoughts and prayers🙏🏻🙏🏻🙏🏻

AmericanDemocrat profile image
AmericanDemocrat

Hi there ... I am terribly sorry to hear of your situation. Life has not been very fair to you. 😥 A dear friend of mine has stage 4 colorectal cancer (mets to her bones) ... so I know just a small bit about your journey. I wish my friend could come on this forum to chat with you, as the two of you could likely support each other ... but she is not well enough. So, instead let me just send you my heart-felt wish for release from any pain you may be feeling and strength for the road ahead. ♥️

GrannyDoll61 profile image
GrannyDoll61

Big hugs from me xxxxx

AthomeintheBarn profile image
AthomeintheBarn in reply toGrannyDoll61

Think that’s what I need. Thank you.

ThreeSmiles profile image
ThreeSmiles

Hi there Athomeinthebarn

A belated welcome from me to the fenomenal forum...well I like to think it is 😀

Really sorry to hear about your problems but I have no experience of things like that so can’t comment except to say that I very much hope they can do more to help you 🤞🤞.

Nice name by the way I might change mine to athomeinthecowshed which is where we live...

Good luck, I hope you will keep us informed as to how you get on.

Miles

davianne profile image
davianne

Hi AthomeintheBarn,

Welcome to our friendly forum.

My daughter had a colon resection for diverticulitis, like Lorraine Louise, but fortunately there were no tumors or mets. You will get lots of moral support here, so stay with us.

Stay safe,

David

Hi AthomeintheBarn

As our lovely members have already shown, we are a supportive bunch and you are welcome here.

I'd also suggest CRUK for their information cancerresearchuk.org/about-... and friendly nurse-led helpline.

Sending you strength and hope

Trust1

alfredthegreat profile image
alfredthegreat

Hi Athomeinthebarn and welcome to the forum.

I had HCC, 2 tumours in the liver and had 2 sessions of TACE and 3 years of the drug Sorafenib, this shrunk the tumours and held them stable. Luckily my cancer remained primary although I did have a time when it was thought that there was something on my lungs but this didn't alter in size on scans and was eventually diagnosed as scar tissue.

I was told at the beginning that I wasn't eligible for transplant but 4 years or so later I was put forward for assessment and got a liver transplant.

I hope that your future treatments go really well and they are able to shrink those tumours.

All the very best to you.

Alf

MsJayhawk profile image
MsJayhawk

I was diagnosed with Colorectal cancer in 2016 right after my PBC diagnosis and had my colon resectioned.

The surgeon said they got all the cancer but after being referred to the Cancer Center they found small spots of cancer in my liver.

I too was given the same treatment as you and it did completely clear the spots but I only had 3 small spots to begin with. I was in remission for about one year (2017-2018) and the spots reappeared so I was sent to have them taken out of my liver. They were not diagnosed as being cancerous at this time.

I had been told before they did not want to operate because of PBC but the transplant Doctor in Oklahoma City thought it was safe and I had the operation. They only took out the spots as a resection of my liver couldn't be done because of the PBC. I have been in remission for another year as of March 2020 and they saw spots again but biopsy showed not cancerous and probably scar tissue.

Right at this moment I am still as healthy as I can be with PBC and I do not know what my CT Scan will show this month but I did not have growth in my lungs so I do not know anything about that but hopefully they can help that too. I have read recently they have new treatments for tumors in the lungs.

Try to hang in there and please let me know how you are doing. You can contact me any time you want to. They are finding new treatments for Cancer everyday and you are a young lady and I hope things get easier for you. I am 73 and I am thankful for every day I wake up and I know you are too. Praying for you.

Take care and may God bless you,

Kathey

AthomeintheBarn profile image
AthomeintheBarn

Thank you Kathey. What does PBC stand for? X

MsJayhawk profile image
MsJayhawk in reply toAthomeintheBarn

It stands for primary biliary cholangitis which most on this sight have. They just say PBC here in USA most of the time.

Dogbot profile image
Dogbot

I have not had to go through what you are going through I have had skin cancer that they have been able to cut out so a tiny bit of the worries and thoughts you are going through we will all be thinking of you?

Dogbot 🐶

Not what you're looking for?

You may also like...

Multiple lesions on liver> surgery? Transplant?

The consultant said surgery is not usually offered if there are multiple tumours on the liver but I...
eekk profile image

anyone with fatty liver with physical signs of it on abdomen?

hi, I've been trying to find out about a strange horizontal line on the liver side of my abdomen...
briccolone profile image

Seeking adults with liver cancer for research study

IQVIA, a global healthcare research company, is looking for people with primary liver cancer to...

Elevated ALP and GGT, liver lesions and fatty liver

Hi all, a routine blood test showed prolonged period of elevated Alp and ggt. Due to some other...

Liver Cirrhosis caused by Azathoprine for Ulterative Colitis! Anyone share a similar story xx

Hi, Hope you are all doing OK. I can’t believe I'm here really, but by this us my story and would...
Bucket13 profile image

Moderation team

See all

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.