Hi Dynamic Duo,

So sorry to hear of wife’s bowel cancer.

I had FOLFOX in early 2021, 6 fortnightly rounds prescribed but only managed 5 due to severe proctitis. The things I found helped with Folfox were:
Frequently massaging my hands and feet with a good moisturiser – I’m sure the massaging helped keeping peripheral neuropathy at bay.
Are you aware of the throat spasm that can happen almost immediately after the chemo? Make sure your wife wraps up warmly when leaving after chemo and have a warm drink and a hot water bottle to hand if you can.
I went off food and everything I ate tasted of cardboard but I found if food was put in front on me I could usually eat it.
I found wrapping up warm with a hot water bottle and lying or sitting outside (even in cold March) helped me feel better and helped alleviate the sickness feeling.
The thing I found the worst was the tiredness and wearyness, just going upstairs was exhausting. Encourage her to rest as much as she can and nap during the daytime.
Side effects tend to get worse with each cycle but if you keep a diary it helps to see a pattern emerging so you can plan.

Hope some of this helps and please ask if you want more info.

There was a thread on here a while ago on top tips for chemo care but it seems to have been removed perhaps someone else knows where it’s gone?

Best Wishes,
NetX

I had 3 months on folfoxiri from November to February and the good news was that it was really successful, and shrank my tumour down to virtually nothing, easily removed with keyhole surgery so although this chemo is a lot to endure hold on to the fact that it can be really effective. 

I found I only wanted quite bland simple food like eg fish pie or spaghetti carbonara, but only quite small portions. Having lots of little tapas style snacky things from the deli aisle readily in the frudge helped because if I felt I could eat something it was easy to grab something. Don't worry too much about food group balance - to be honest the appetite gets so mucked up that the key priority is to get some calories in and just eat whatever she can tolerate. If all she wants is ginger biscuits that's ok, it's better to eat the biscuits than to sit in front of a plate of food you can't bring yourself to swallow. Just have a variety of things available but don't push her to eat specific things.

Side effects certainly get worse each cycle and it's debilitating and exhausting. I didn't lose my hair but it got very thin. Sending best wishes for your wife treatment. 

Hi NetX

Thank you SO SO much for your advice. I'm so pleased to read those tips as it helps me to know we're doing everything right so far. 

I do love the tip on still trying to sit outside for some fresh air when feeling nauseas as she's tended to stay in when it's been cold, with the odd few days work out does open. But actually sitting outside for a while with her wrapped up in  a nice big fluffy blankie and lots of layers will be good too.

So seeing as you had to stop your treatment, what does that mean for your recovery? How are you doing? What are your next steps?

I hope you can still be treated and helped!

Biz Oz I can't even begin to tell you what your message did for me, and certainly my wife. We're both in tears (GOOD tears!) because we're both keeping so positive and trying to stay upbeat (although whilst still allowing ourselves to have the odd few wobbles) and it's so hard to stay that way with all the 'what ifs' that crap into our minds. We do keep them at bay most of the time but they still do longer in the background as this is all very new and of course frightening territory.

Your message has helped us to get back on the positive train and truly believe this treatment IS going to work!

And the tips on the food is fab. We've done all the prep with bits of food and plans for little and often (tapas style has always been our favourite so thankfully that'll help her). 

I'm so happy for you and your results! Does that mean you're cancer free now then?

Woops. Notice a couple typos. Sorry

Hello again Dynamic duo.

Some more positives for you to hang onto - I was diagnosed Dec 2020, had surgery, LAR with loop ileostomy in early Jan 2021 (Stage 3 with 1 lymph node involvement) then was supposed to have 6 rounds of Foxfox from early March.  Some cycles delayed due to low neutrophils (very common) and advised to stop of after 5 due to proctitis. My scans and blood test in January 2024 came back all clear again, so almost at the 3 year mark from end of treatment.

The chemo was tough at times but there was an end in sight and I tried to 'go with the flow.'  6 weeks after chemo finished I felt pretty good and I continued to improve. Had my ileostomy reversed March 2022.  Had some problems after that re a blocked bowel and more surgery but that's another story.  The main thing is the chemo did its job!

There'll be some good days and bad days during the chemo but remember the bad will pass.

Do ask anything specific you want to know.

Very best wishes,

Net x

Oh Net77 what a brilliantly encouraging message.

We need all the positive outcomes we can get. It's so much easier to go through this with real life stories of people like yourself coming out the other side with such successes.

I truly am grateful to you for taking the time to send that over and I'm so beyond happy for you that it's worked or at least working out well for you. Albeit, with the odd few bumps along the way. To say the least! 

The reversal of my wife's stoma (we call it Shane the sh!thead, for obvious reasons haha) would be that delicious cherry on top of the cake, but we're trying not to be greedy and we're focusing on one step at a time. 

So did your surgery for your blocked bowel resolve the issues?

How are you doing now? I hope really well! 

Hi Dynamic Duo

Just to add a bit more positivity to Nett77’s post.

I had LAR with temporary loop ileostomy in November 2021 (Stage 3 with 11 lymph nodes involved and EMVI positive) followed by 12 cycles of adjuvent FOLFOX chemo.

Scans, blood tests and colonoscopy in late 2023 were all good.

I’ll not sugar coat it, the 12 cycles were tough and got progressively harder. Fatigue was the hardest side-effect to deal with, but six weeks after finishing the last cycle I was back in the gym and my regime today is back now to pre-diagnosis level. I am 67 years old.

Luckily my I did not suffer from side-effects of lack of taste or nausea so was able to eat what and as much as I wanted within the confines of what an ileostomy can cope with. Stangely, a high salt, high dairy, saturated fat and protein diet with no raw vegetables, nuts, sweetcorn or peas, resulted in me being able to come off stTins and blood-pressure medication. I also lost over a stone in weight.

I had a stoma reversal in May 2023. The first month or so was a challenge, but I have settled to my ‘new normal’ and eat and drink whatever I want. I have had several trips abroad with no issues. Off to San Sevastian for fice days this Wednesday!

Apolgies for the typos. Fat finger on a mobile syndrome!!

hahahaha don't worry about the typos 

Oh wow Spider56 that is wonderful news! I am so pleased for you!

We desperately needed some more positives. We've been having a few wobbles - mostly on the positive mindset and staying upbeat, etc but the odd few darker thoughts do creep in from time to time still. So everyone's positives are helping massively! 

And what a diet you were on! Who would've thought weight loss + high salt and saturated fats, etc would be in the same sentence! 

Your message is SO encouraging with the stoma reversal, travels etc. 

Thank you again and I am sending you massive hugs. I hope you had an AMAZING time on your recent trip!