UPDATE

Hi BevA 

Sending you lots of love and support .

Have joined the stage 4 group on the colon club forum ?

They are quite good at having information on recent research . My limited understanding is there has been some ongoing research for triple edge treatment currently being investigated , I also think they would be more up to date on the Beacon trial results . If I remember right there is a particular oncologist who specialises in Brad V600 . Making sure you know all the relevant people and details can be helpful . Particularly if you feel she may want to consult others opinions as the process goes on .

What I would say to you . 17 years hanging out on these forums there is always survivors in every subgroup even when the odds are firmly against them . I take it she will be starting chemo and I sincerely hope it achieves significant shrinkage .

Here to listen and support you . It’s a very painful situation for you all .

Court 

 Thank you so much for your advice and kind words , it really helps when your mind is racing all over and life no longer seems real. I will start to research all of this and join the forum. She is only 37 so we have to believe there is a chance of living a longer life and keep battling. 

It was all a bit overwhelming yesterday but I'm sure  there was mention of triple action ( (chemo and targeted therapy) but I will defo clarify that today and ask about the Beacon trial results.

I truly hope that being on these forums for seventeen years you are either close to a cure or cured.

Sending you love and I hope your own personal journey is a positive one

Bev

Hi BevA 

I came back in 2009 when we discovered my mum had a spread . Despite her significant spread to the liver then her lung she responded to the first line chemo which was the only thing available back then .

She got 15 years , not disease free at times but certainly doors opened and windows of opportunity popped up . Her last treatment was not even used when she started the journey . It was only in the pipeline .

I think there is a current trial ongoing for your daughter’s cell type . I will try and find out the name . 
Court 

Hi BevA 

The Breakwater trial is the most recent trial and study and some encouraging results . I had previously heard some patients referring to a dr who was very informed on Braf v 600 . It stuck in my mind so I asked AI . This was the first name it came up with . He seems to have been involved with the recent studies . But there was also a few others too in different  locations .

Your daughters is entitled to a second opinion and sometimes it’s helpful to make sure the right clinical path is the best but you may also be able to ensure this just by being informed .

It’s also not that expensive to do this privately if you so desire. What I would say is find out the names of the drs working on it so it’s the best people to consult with .

The other thing I had to balance out particular when it comes to survival stats is to remember these are mean survival stats  , there are always patients outlying who continue to do very well . Despite the odds my mum ended up in that group . Her GP always started her referrals with “ This remarkable lady “ 

The only response and outcome that matters is your daughters . She is a stat of one and as my husband always says stats are good for health economists to plan budgets but not so good to predict individual outcomes .

My mum had a different cell type but another patient mentioned it .

Wee bits of information seems to stick on this forum . The sharing of information .

You are doing incredibly well supporting your daughter . One day , one step at a time .

Court 

Thank you for this, it is certainly good to read indpiring stories. You are absolutley right everyone is an individual and responses different to treatment. After talking to the oncologist yesterday Laura as decided to ho for the chemo and targeted treatment first

Oxaliplatin

Irinotecan

Bevacizumab

Fluorouracil

Unfortunately you cannot have the BARF V600 targeted treatment, Encorafenib + Cetuximab with chemo as fist line line in the UK, but we can have  Encorafenib + Cetuximabas as second line if no improvement.

Thank you for the google search. I did the same this morning and came up with the same result so I will be asking for a second opinion. 

For now I am grateful she as made yo treatment which she starts today. The rest, as the saying goes..... is in the hands of the gods. Plus a strong body, healthy diet and plenty of research.

Thank you once again for your valuable input. It means a lot.

Hi BevA,

You mentioned about the stage 4 group.

will it be possible to obtain the link please? I am a daughter of a mother who has been recently diagnosed with stage 4 rectal cancer (3 small liver spots and snall lung volume) 

she recently completed 5 sessions of radiotherapy and unfortunately experienced side effects from radio-treatment requiring hospitalisation.

I had posted other threads here and everyone has been so helpful

thank you so much.

https://www.bowelcanceruk.org.uk

This is the U.K. forum with a stage 4 group which is helpful . The colon club is more international but good to keep up with the developments as they are normally a little ahead of us. 

Just incase you wanted to get started .

Court 

Hi Monica

So sorry to hear about your mum. It is so hard watching a loved one tryjng to navigate this awful disease without added complications. I hope she gets a suitable treatment plan sorted soon.

I have not yet joined the group so I'm afraid I don't have the link.

Take Care