Bowel Cancer - woken up after first set of chemo and clear CT Scan ( as in nothing visible)

Hi 

Husband, and dad are two very important focuses in your life that can give you great determination to push forward despite very difficult circumstances. 
What I can say they are getting better at managing stage 4 disease in a bowel cancer setting than a decade ago . But even then my mum had a spread to her liver in 2009 and used only ever Oxaliplatin and cap tablets . She required it over two years . Folfox is similar but includes three components but similar with a different mechanism of administering it .

Oxaliplatin is a big hitter in some ways and brings with it cold sensitivity and requires you to wrap your face up in a big scarf after your infusion to prevent and cold air making contact . Fridges and cold drinks and handles are also problematic. So I would add just a little hot water to drinks to bring the temperature up . You will see lots of innovative discussions around handling cold handles from specially made clothes to open them with , socks over handles or wearing light gloves .

Neuropathy can be an issue but they keep a close eye on it .

It was however incredibly good at shrinking the visible spread for my mum. There are many people using chemo in a chronic disease setting over the long term with skilful care of the oncologist.  You will see some people embracing their six year etc . After chemo my mum Sought a surgical opinion and went from inoperable to operable twice with the of chemo . All surgery does come with criteria but you might find it interesting to look at what some people are achieving with hipec surgery following chemo . It all depends on location and size of spread but there are others here in treatment with the same prognosis.

In terms of handling a difficult diagnosis I can only really speak as a carer and I will be honest I was in a panic but my mum quite calm . My sister took me aside and said whilst there was chemo on the table we treated it as a chronic condition and not until the doctor considered no more benefit to be had from treatment would we address it otherwise .  The fortunate thing is bowel chemo has a lot of options and combinations . She advised me not live under the shadow of death but to consider it a difficult chronic condition that might be held at bay with the help of sound clinical judgements and seeking out the window of opportunity where they presented in terms of surgery ! 
One way or another six months became a year , became two and here we are at twelve years this summer , 

Others report preferring to address it from the other angle of preparing for the worst and possibly being surprised by a good response . A patient did tell me to keep my mind where my body was and to bring it back from the worst possible outcomes . Small gesture but it actually worked . But obviously only as a carer my mum had a totally different approach. 

With chemo it really depends on your own individual responsiveness to treatment . For me there is hope in that ! Given your organs are clear I would think that’s positive in itself as they are not compromised in terms of their function .

process might be able to share a bit with you if she is around !

Some people achieve shrinkage that might open up other treatment possibilities like surgery , others achieve shrinkage but still require to use chemotherapy as maintenance therapy . Others achieve stability and continue under the care of the oncologist whilst sadly some don’t get the desired response but they would maybe try a different treatment .

We are most certainly here to support you to work your way through this . Your team and scans become a big part of your life but we can reduce some of the fear when we have good information and a bit of hope helps too ,

Much love to you and your family . Ask anything you like .

Take care ,

Court 

• Hi, I had op to remove cancerous tumour in February which was successful, then was told cancerous cells in lymph nodes and lining of the stomach so having the same treatment as you and just finished the first cycle.  Bloods test the day before treatment then if ok treatment the day after it’s ok tingling in the fingers and toes if you touch anything cold I feel a bit nauseous but not actually sick and I’ve had an upset stomach as in going to the toilet a lot but you get medication for it.. they’ve not told me much other then you do your bit we’ll do ours and leave the rest in the hands of god so it’s just a waiting game to see if the treatment works now xx

Hi Cat Lou

So are you on FolFox, 12 fortnightly sessions? I'll not be having Cetuximab now, replaced by Oxy...

And as you say, let's see how it goes, hopefully no severe adverse reaction, good bloods, and repeat sessions.

Warm socks and gloves for neuropathy, feeling the cold side effect of the new chemo, Oxy....

Trips to Burton and back, I can drive the route blindfolded I think.

First 12 sessions were good, no adverse reactions, just hope this will be the same, the nurses, doctors and support staff are all so supporting and caring, makes it easier to cope and get through it all.

Keep on touch, hopefully it goes well for you, and we both come out the other side smiling.

Ian

Thanks for the reply Ian, definitely keep in touch and good luck xx