Hi Dynamic Duo 

I'm on FOLFOX (second course), just done cycle 5/12. Side effects might get worse with each cycle (it does for me) but manageable. I have mouth ulcers and mucositis and drink Elm tea for it but the chemo nurse will also give some mouth wash. I have stopped sugar and processed food and fast 24h before and 48hr after chemo in an attempt to starve cancer cells before they get hit by chemo (a few studies have been done on that) but I have discussed it with my oncologist first. I find it difficult to eat enough so I go for a little often. My hands can get a bit sore and I just rub 4 drop of almond oil + one drop of turmeric oil. Cold is the main issue with peripheral neuropathy but with the weather getting warmer it helps!

Any questions, just ask

Cecile

Hi Cecile 

Thank you so much for taking the time to reply and I am so sorry for what you're going through also. 

Thank you also for the advice. It's truly appreciated and very much needed. I want to be sure I do everything I can to help her go through this with everything she needs! 

That fasting tip sounds hard but worth it! We will definitely ask our Oncology team about that, as well as the elm tea. My brother mentioned Essiac tea, which I think is pretty much the same thing with the same ingredients, aim, etc, so it's in my shopping bag already! 

I need to look into the sugar advice also as she does love her sugary tea, etc but we have cut it down for sure. 

Thank you also for the tip on almond oil and tumeric oil. Wow, you've been so helpful and I really do appreciate it. 

Wishing you all the VERY best with your treatment. 

Actually Cecile would you mind sharing the Elm tea you're drinking please? I've wanted to buy Essiac tea but can't find the original stuff as it's in the US only. Also I'd rather use something tried and tested. Thanks so much

I am due for a scan in April, mid-way through chemo but my CEA levels look promising: 14 before starting chemo, 13 after 2 rounds, 12 after 3 rounds, and 7 after 4 rounds

That's fantastic Cecile. I'm so so pleased for you! Keep going strong!

I am starting chemo soon. I am not sure if I have the same chemo drug, but was told it would impact my tastebuds.  They said ideally healthy food that is easy to digest but that in reality I may reject it. So then it is better to eat whatever my taste buds agree with, than nothing at all. 

Hi Cyclone

Lovely to hear from you. 

I wish you all the VERY best with your treatment.

And that's a great tip! Very true. Eat whatever you can stomach as opposed to nothing. 

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!