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Life with bowel cancer

HH79

BRAF Mutations

Hi all,
Just wondered how those with BRAF are getting on?
:x::x:

HH79

Hi @fnkyf8 @david watt @Jaynesr I did hear this week of someone with BRAF living 4 years which was mainly maintenance Chemo, Cape and Avastin
:x:

HH79

@Jamodebs35 @Jacey Connell think you two also BRAF :x::x:

david watt

@HH79 Hi,
Got CT-scan results on Tuesday, No shrinkage or growth so now stable, previous two scans had shown reductions in cancer. Biggest bit is 15mm, another bit 8mm, no organs involved mainly lymph nodes in para aortic region I think. Hospital phoned on Tuesday and said they wanted me to come in for a few tests. I got there and they had a bed for me in acute oncology and seemed to think I would be spending the night there, news to me.
They did ECG, ok, Blood tests, Blood pressure low, Xray. They were concerned about my lungs from the ct-scan, not cancer but possible immune system attacking them, known possible side effect of immunotherapy. Have had a lot of bright green Flem for two weeks, either bad cold, chest infection or bad hayfever. One junior doctor said I would be staying the night, another was not sure, consultant gave me antibiotics and let me go home after 3 hours.
My consultant is on holiday this week and will see her a week monday, I expect will have to stop treatment for 2 to 4 months and see what happens. Most people on my treatment remain stable for 6 to 8 months after stopping treatment.
Regards
David
p.s anyone ever completely recovered from secondary braf colon cancer?

HH79

Hi @david watt gosh you've been through it. Great that you're stable and also that stability willl be so long after a break. I did hear there's a new trial coming over to Birmingham showing initial good results in US, think Spring time? My mets are also para aortic lymphs and peritoneum. I'll be back on Folfirinox (all 3 agents) from next week as worked well for me last time. I don't know about BRAF survival for secondary cancer. I think people with liver mets often do ok as can cut it out completely but not sure of any BRAF specificially. Maybe us!!!!! Maybe that miracle is round the corner. :x:

StaceyH

Very interested in this thread,my partner is BRAF,dontou have any more details on the Birmingham trial? Not that it will be great for us being treated in Southampton but willing to go wherever!

HH79

Hi @StaceyH I'll find our name of the trial but all I've heard is won't be available until Spring time earliest. How is your partner doing? Will keep you tagged on this BRAF thread :x::x:

StaceyH

He's had 6 months of Folfiri that has left only scar tissue in both bowel and lungs so is now on 3 month treatment break

HH79

Hi @Kirsty85 I just read your post about your hubby under young persons sectiI'm so tagging you here as a few of us BRAF. Like Brad Pitt 'Fight Club', The rule of BRAF club is you don't google BRAF!!! Joking aside, cancer for good and bad is so unknown and unpredictable, it just won't help at all googling. I'm so sorry about all your hubby going thro. Just hang in there, do things you enjoy when you can and get each cycle done, get through it together and keep optimistic the scans will be positive and there's always other treatments too. Get all help going. I have counselling as does my hubby as a carer support too. Keep going and sending hugs :x::x::x::x:

Kirsty85

Love the fight club rule thank you!

Quote from @HH79:
Hi @Kirsty85 I just read your post about your hubby under young persons sectiI'm so tagging you here as a few of us BRAF. Like Brad Pitt 'Fight Club', The rule of BRAF club is you don't google BRAF!!! Joking aside, cancer for good and bad is so unknown and unpredictable, it just won't help at all googling. I'm so sorry about all your hubby going thro. Just hang in there, do things you enjoy when you can and get each cycle done, get through it together and keep optimistic the scans will be positive and there's always other treatments too. Get all help going. I have counselling as does my hubby as a carer support too. Keep going and sending hugs

Buzylizzy

Hi all, off for CRS and HIPEC on my mets tomorrow. Feeling a little anxious but praying it'll go fine. Love to all my mutant friends :x::x:

GD1962

Hi @Buzylizzy

As a fellow CRS & HIPEC candidate good luck and I'll be keeping you in my thoughts and prayers during your procedures. Good luck :x::x::x:

HH79
Quote from @Buzylizzy:
Hi all, off for CRS and HIPEC on my mets tomorrow. Feeling a little anxious but praying it'll go fine. Love to all my mutant friends

Ah ha Liz! Be thinking of you :x::x:

Chris82

Wishing you all the best for tomorrow @Buzylizzy. Let me know if I can be of any help. I'm not a mutant but I've had HIPEC twice! :)

Clancy

Good luck @Buzylizzy.:x::x:

HH79

There's good HIPEC experience here @Buzylizzy also @vt @Bridget55 @E81 @Baxter2 @Pitstop everyone is rooting for you and sending enormous hugs for tomorrow :x::x:

Baxter2

Sending you all my very best wishes for your CRS and HIPEC tomorrow @Buzylizzy! I had it done back in March at Basingstoke. You can do it! Lots of love and hugs 💜💙💚💛❤️

Pitstop

Good luck for your CRS and HIPEC tomorrow @Buzylizzy. I've had CRS & HIPEC, take your Ipad to keep you occupied, & some earplugs so you can sleep. You will probably be in ICU for the first 24hrs, but that's actually quite nice as it's quiet!! Good luck 😘 :x::x::x:

DianeS

Best of luck @Buzylizzy hope all goes well for you ❤️ Diane :x:

springer michelle

Best of luck for tomorrow :x::x:

Bridget55

Good luck @busylizzy. Are you in Basingstoke or Christies. Welcome to the HIPEC club :x: