Happier days for S4

Hi Anthony 

What good news! I'm in Cheltenham area and evidently they don't use stage 1,2 3 and 4 terminology but my cancer is inoperable.

Was on Irinotecan and Capecitabine with Panitumumab for a while but now I've stopped the Irinotecan as it was making me feel so rough and depressed.

Anyway like you I stay positive and look forward to each new day. I am well enough now to enjoy visiting my family and life is good. I don't want to know for how long that doesn't interest me I just savour each and every day. 

Ali x

Dear Ali

I read your biographical.detail. i am a KRAS baby so immunotherapy is a non starter.

I do know however that it....

Ihe drugs quoted..are very expensive so that your team are prepared to.make a considerable investment in you.

Did they explore Radiation treatment? That's actually a gas. Fun compared to Chemo

I dont see anywhere in the biog that you secured a second opinion.

12x Capox is an incredible volume and i'm not surprised it proved too toxic to manage.

Hopefully things will work out for both of us if we stay resolute and if not...then we did our best.

.

Hi Anthony 

This is just wonderful and its amazing to see how  chemotherapy is a game changer for a subgroup of patients . My mum has only ever had six in a row with no post op . Only ever 12 in total and with surgery managed to stretch that out 13 1/2 years  so far . But that was without a complete response . They will be writing a paper on you soon ! 

But this is a stunning response given how advanced your cancer was at diagnosis. Your team must be thrilled to bits and your family .

Seeing chemotherapy reign in a spread still amazes me . How did you find having the chemo . My mum was rough . 

 Kettleson  My mum refused a prognosis too . Think it was the right decision for her . She had an unusual take from the start in that she never really thought about the cancer but focused on her wellness . You have a wonderful approach there and I hope you enjoy many special days going forward .

Keep pushing those stats forward !

Going to bookmark this thread as others often wonder if it’s worth trying and they may also be in that group of top responders .

Court 

Thanks Court

You asked about the Chemo experience..

Capec.was fine until cycle 4. Then from 4 to 6 experienced nausea on days 11 to 14.

Oxy was a diffent matter. Bought a gum shield to stop biting my tongue off during the 6 hours following infusion. 

Did not bother with all the other drugs..steroids,painkillers,pooping help. Took 2 tabs cf 3 prescribed for nausea.

If you don't need it then don't take it was my rule.

Hope that helps anyone going into this Caper.

 1.Motorcycle thermal headgear in winter with sunglasses. Only about an inch of head showing.

2. Hot water bottles fot cramps

Good luck

Hello, I just wanted to say that sounds wonderful news. Your post gave me a massive lift as I have had surgery and now pondering quite worrying lab results and told, at this stage, further chemo not suggested. Watch and wait (for the inevitable) seems to be the position and deal with liver / lung mets if they appear. I’d been hoping for ‘mop up’ chemo now. 
Very best wishes to you as you go forward 

Hi Anthony

I'm so sorry I should have read your Bio, forgive me.

I was evidently told all options but don't remember. Have asked for my records but been waiting 2 months so far, I guess their busy and under staffed.

Does everybody ask for a second opinion? Trouble is I'm too scared to do that.

Wishing you the best and keep resolute. 

Ali x

Hi Anthony

There are medical reports now available showing that CAPOX and FOLFOX are recently being recommended as 6 cycles rather than 12 cycles. They looked at efficacy versus short and long term negative side effects.

I think is the SCOT TRIAL report that recaps it and what stages were studied. You can find it published by LANCET.