Treatment options for Stage 4 with BRAF

 KimLondon 

Are you able to shed some light on this situation . If I remember correctly you had a similar situation . Plus I hope you are well !

Court 

Hi Sar_helen 

Welcome and so sorry you have hit this bump. I have tagged in Kim as I think she has more understanding on the Braff aspects than me .

I did support my mum as she went through two liver resections . Her second was at a centre of excellence where they removed 73% of her liver . It regenerated and she had no further issues with her liver . Functioned well and did a good job right up until she passed . The centres of excellence have surgeons who are highly skilled and the high dependency staff are all geared up for more extensive liver resections in my opinion . 
It gives you such a fright and as a family we were searching for Hope . Stabilising the disease is a good plan and they do rescan and try and add in other options .

I will see if Star74 is around as she has navigated treatment and surgery with a young family in tow and is inspirational too .

Take care and we are here to support you to move forward and help you navigate this difficult stage .

Take care ,

Court 

I would like to follow this post as my partner is stage 4 with liver mets (20+) he's currently on FOLFOX chemo but has BRAF V600e mutation gene. He had no symptoms prior to emergency surgery on his bowel and is still generally fit and healthy. He is having some side effects from chemo but it's powering through. The unknown is so scary. He is 41 and we have 2 young daughters. I'm not coping too well but I am being strong for him.

Hi Sar_helen  & Poptart24 

So sorry to hear of your diagnosis, but I'm glad you found yourself here, it's a supportive group and has pulled me out of dark places many times.

I was diagnosed in 2020, my boys were 6 and 3, the youngest one turned 7 yesterday!  It's tough with kids but they have also been my strength and kept me going.

I'm was on folfoxiri from the beginning as I had spread to the liver, it's the big guns as my Onc called it, it can be hard going but it shrunk my liver tumour enough for surgery.

I'm not BRAF but if you are on Facebook there is a group called Living With Stage 4 - Bowel Cancer UK, its run by Bowel Cancer UK and it has a subgroup for BRAFers called Breaking BRAF.  There are a lot of members on there on a treatment called Beacon (a combination of Cetuximab & Encorafenib) and many continue to do well on it.  May be worth having a look or mentioning this combo to your Onc.

Good luck with the treatment, please keep us posted and we're always around for a chat/advice.

Thank you for your reply I will have a look at the group on FB. My partner has been offered the Beacon treatment as a second line treatment if folfox stops working. I'm hoping the chemo works wonders for him to maybe have surgery. 

That's good Poptart24 , sounds like a plan is in place for him.  Hopefully the chemo will do its stuff and it can open up surgical or radio options.  His age and fitness will also play a positive part if surgery becomes an option in the future, it really helped me staying as active as possible. 

Thank you so much, stories like yours give me so much hope. You’ve been through so much! I just read your profile. Amazing fighting woman. I hope I have your strength! 

can I ask, did you lose your hair with Folfoxorini? It’s a small price to pay and I ultimately I don’t  care, I’ll do anything to get better for my kiddies,  just trying to work out if I need to get a wig!! 

Poptart24 thinking of you and your husband and family too. Cancer is so hard on everyone xx

 Sar_helen , you will surprise yourself how strong you can be, it is tough, mentally and physically but we keep going.  Kids have a great way of keeping you grounded and in the moment. 

I did loose some hair but it was more thinning, i still had hair on the top of my head and I kept my lashes and brows which I was pleased about.  I didn't get a wig, because I still had a bit of hair I was able to get away with a hat in the winter and cap in summer.  I went for a wig fitting but none of them felt comfortable, I think if I lost hair again I would look at hair toppers, they look natural and a less heavy.  Mine has grown back now, I'm still really careful with it, I try to only wash it once a week and don't use a lot of heat.

Really wish you all the best, try to take one day at a time, it's overwhelming but we're always here for a chat.x

Hi Both- Sar_Helen I'm very sorry you have been diagnosed and have all of this to deal with- people here are very kind and helpful so I am glad you have found us here. I am as Court says also Braf with spread and was diagnosed late 2023. I had Folfox chemo first (like capox but with the pump you will have for folfoxiri) then a bowel resection with an ovary removal- and then folfoxiri to work on my liver. I am now waiting for a date for liver ablation as they are happy with what the chemo has done in terms of shrinking the liver mets. There is a targeted treatment for Braf commonly  called 'Beacon' as that was the trial name- those drugs are usually for after chemo so I have not had them yet but it's good for you to know there is Braf specfic treatment. There is a group working to highlight Braf bowel cancer called Breaking Braf- if you google this this may also help as there is helpful info about treatments and so on. I am sure folfoxiri will do good work on your liver and you can have an operation or ablation or it might even melt it. Keep in touch and I hope your first cycle of FFI goes well

Hi my story is almost identical to yours and I’m braf as well. I’m 45 with an 8 year old. I had 6 rounds of folfox post operation (stage 3) and all was looking good. I’ve just had the circulating dna blood test and it came back positive. So now more than likely to have another 6 rounds of chemo. 
there is the braf group but I find it too hard to look at. 
I prefer to carry on and enjoy my family and love each day.