Bowel cancer returned now with BRAF mutation

Hi 

Welcome to the forum . I am so sorry to hear about your mum . If you click on my user name you will see my mum has had a few recurrences and it’s difficult to pick yourself back up from that so I can understand your mum’s reasoning. I think the approach my mum used was chemo could be reduced or stopped so she would try and work with her team but the control was always with her if the benefits outweighed the gains . 
A cycle by cycle approach !

I think there are some people currently using Flofiri. Francesst might be able to give some insight .

I think there are also some people with the Braf mutation and might be around to address that .

Take care and I wish your mum every success .

Court 

Hi, my husband has just finished cycle 10 of folfoxiri, the same as your Mum will have but he has oxi added too. It's a tough regime, but he's been an absolute trooper, and had very few side effects, heartburn from the steroids, sore/dry mouth, and tired after treatment. We've taken all the precautions people have shared and his oncology team take care of potential nausea, diarrhea with drugs, so it's been very doable. He has the 5FU pump for 46 hours after chemo, the nurse comes and disconnects it at our home. He finds the first couple of days after chemo rough, but picks up quickly after this. We walk daily after these couple of days and life is pretty much normal until the next cycle. If you have any further questions, more than happy to help if I can, love Frances xxx 

I have stage 4 colon cancer with BRAF mutation that has spread to the liver and some lymph nodes in the neck and abdomen, yesterday I found out that the chemo I was on for the last 5 months is no longer working as they found new activity in the liver. Obviously I was gutted but was not really surprised as I was expecting this out come.

I will now be given the BEACON treatment and will be getting info on what it entails but it basicly just slows it down and gives you upto 9 months if it works at all.

I don't know much about it but I would assume it is offered or available to anyone who's chemo no longer works but I'm not sure. 

Some of you might be interested in a recent post by  who is on a new drug called Braftovi. Sometimes helpful to know of options even for a later date .
I remember having a quick look at the research for the Beacon trial . It seemed encouraging.

Take care 

Court 

Hello Court, Aydin,

Cautiously I can report that the Braftovi has tangibly done what Folfiri and whatever the Chemo I had before that, failed to do.

I now have close to zero stomach pain that I was previously taking daily buckets of paracetamol and Ibuprofen to relieve. Reasons to be cheerful. I was warned of the new side effects that can come with Braftovi and given the medication to combat this - primarily creams and pills for body rash and irritation. I have had zero of either.

But I haven't got away Scot free. The peripheral neuropathy has worsened but I'm told that this will improve to a greater or lesser degree when the Chemo stops at the end of the month. Otherwise I suffer the same lethargy as everyone else, I battle to maintain my weight (I have a prescription powder that I make into a milkshake. It's bearable) and I take a Laxido a day so that I can remain a regular guy.

I'm heartened by the above and determine to help myself by doing something physical - walking mostly.

Finally, listening to the radio yesterday Tracy Emin was telling (graphically true to character) of her battle with cancer of just about everything below her chest and how she was winning. I was inspired. Smiley face.

Gaul. 

Hi  that’s sounding promising and a bit more tolerable. Got to be good news . Especially since it targets the Braf mutation . To achieve reduced stomach pain is a very good result in itself !

Your writing still is still making me smile ! 
Hope your having a good weekend . Nice evening last night but like winter today !

Take care ,

Court 

I'm glad to hear about the lessened pain, to be honest I'm a little worried about the side effects, they seem to be pretty much the same as the chemo I was on but with a bunch of very worrying others, I think I got lucky with the chemo as all I really had was very bad nausea, some constipation and I did have very bad fatigue, worried I won't be so lucky with the beacon treatment. I have a meeting soon to disscuse the treatment, I will be telling them I don't intend to do it for long, don't know how much time I have if I don't do it, but all I really want is 5 months if possible so I can go on holiday abroad with my family for the first time.

I now need to tell my kids about the latest development, I was honest from the start and let them know that I was gonna die from this but was hopeful for maby 2 years, but the chemo only lasted 5 months, I'm honestly not sure how to tell the I may have only a few months.

I'm not scared of being dead, although the process of dieing does scare me, the thing I find most upsetting is knowing they will have to go on with out me there and not be able to support them, that's what really gets me upset. Death is worse for those who must go on after some one dies and that hurts the most.

Hello Julia,. Hope your Mum is doing well and hope you are coping ok too.   I just wanted to say in case you find it useful that a lady I follow on Instgram has the BRAF mutation,. Her page is called Bowel babe,. 

 She seems to respond well to her treatments and hopefully youmight find herposts encouaging.  Though Instagram is not everyones cup of tea! 

Best  wishes Rachel xxx

Hello Julia, I’ve got stage 4 bowel cancer and the BRAF mutation. I have written about my history on this forum before so this is an update. This is how I am today after 8 fortnightly treatments at the hospital and 3 capsules of Braftovi every morning.

Good news: zero stomach pain, reduced size of tumours, appetite returned, escaped the common side effect of skin rash and irritation. I feel well in myself but I lack energy.

Bad news. My biggest moan is the neuropathy in my hands and more particularly in my feet, a hangover from previous chemo types (one was Folfiri) but not helped at all by Braftovi. My balance is is fairly poor - I walk like a drunk and write like a doctor and because of this I’m giving chemo a complete break as of 2 days ago to see what happens. I will then be given a CT scan to see to see how it’s affected my innards. I haven’t been given a date for the scan yet but it’ll be in August. Here’s hoping.

This is the second time of typing this today - the first, nearly-completed attempt disappeared into the void when I took a break. Whoever designed this website needs to be shot.

SO in conclusion tell your mum to take the Braftovi - it’s working for me, it seems that it’s  all about getting the dosage right for each person.

Hi 

Sounds as though you have achieved shrinkage so that’s great . Hope you get some relief whilst you are off chemo !

I have just had a post that has disappeared too! Think I hit the alert moderator button by accident though!!

Another beautiful day here but with a nice breeze !

Take care ,

Court