Bowel cancer treatment and side effects

Stacey

FOLFOX side effects...

I am new to the forum.. and am having chemo for secondary bowel cancer - a pelvic mass spread through the lymph nodes...

I feel like I’ve been ‘managing’ everything so far... and trying to maintain normality at home due to kids... however, I’m dreading cycle 4 due to the constant nausea, dizziness, neuropathy and disgusting taste in my mouth... mints are helping slightly..

Is anyone on 2-weekly cycles with FOLFOX and experiencing the same side effects...? Do you have any advice? I have tried three different anti-sickness meds since starting chemo .. the last was daily Emend for 3 days, I think, along with 2 ondensatron, twice daily...

Many thanks 🤢

Polly 1

Hi @Stacey my husband was on Folfox back in 2013 and the side effects you mention are normal unfortunately.
I remember trying to find different things for him to eat as he said everything tasted of cardboard or he had a horrible metallic taste in his mouth.
We made hot marmite, ginger cordial and Ribena drinks which helped. Also hot chocolate drinks like frothy Wispa or black coffee was fine - he went off tea altogether.
Fizzy sweets like love hearts, refreshers etc helped cut through the yucky taste. Also spicy pickley things like lime pickle, pickled onions, picalilli, tomato ketchup etc on everything,
C tried Granisteron(?) and Ondansetron anti sickness but eventually was changed to Emend which he found worked much better
Number 4 cycle was delayed as his neutrophils were too low which was a shock but they were fine every cycle after that.
C was 55 when diagnosed 6 years ago and for all the years before that he wouldn't touch Brussels sprouts or mature cheese. He would only eat very very mild cheddar. After Folfox finished he started eating sprouts and loves them - same with vintage cheese so prepare yourself for possible changes to your taste buds after chemo has ended 😉
All the best :x::x:

ch7091

Sounds a bit random but have you tried scraping your tongue? It worked wonders for the horrid tast in my mouth. Might be worth a try, it worked for me!

Stacey

Thank you @Polly 1 ...

Sounds like you guys have been through so much in the last six years.. I feel for you..

Thank you for the great advice.. I find that I’m craving salty foods, so marmite on toast has been eaten loads and works well to keep the nausea at bay... . but I am also, constantly sucking or eating fruity sweets.. little and often..

Xx
💪💪

Stacey

Thank you @ch7091 ... hadn’t thought of scraping my tongue but that totally makes sense.. am going to try shortly..

:x::x:

Lirio345

Twiglets @Stacey, - helped me through many a bout of nausea/hunger! Take very good care, Kim :x:

Polly 1

Twiglets sound good @Liriodendron345 hadnt thought of those. C is on Cetux/5FU now and dosnt have a problem with taste (so far) but he does like Twiglets 😁

@Stacey just talked to C about the horrible taste and he said the alcohol free Corsodyl daily mouthwash was good (must be alcohol free otherwise stings) like @Salgal mentioned

scruffysheep

I've just finished 12 cycles of Folfox. I only had mild neuropathy that went after a couple of days right up until no 11 then it continued so oncologist cut the oxaliplatin for no 12 . I'm so glad he did as since then it's continued to get worse, my fingers are now permanently like ice bergs which is a real pain. I've also almost lost my finger prints and can't use the touch log in on my phone or tablet . Wearing thin latex gloves for peeling veg helps or preparing meat/ fish
I found M&S sherbet fruits helped with the mouth/ funny taste along with water melon and pineapple. When my tongue got really coated I spoke to my GP who recommend a tongue scraper. It is like an instrument of torture and can make you gag but i found it a real help. I think it was £3.50 from the local chemist.
thankfully I was never sick or nauseous so have no suggestions there.

Hope you get some relief soon.

Stacey

Thank you very much @Liriodendron345 @Polly 1 and @scruffysheep ... all new ideas to me.. so will try them out.. love Twiglets and any fruity sweet..

Feel fine today, other than mouth, and tend to feel ok from Thursday through Sunday, until it starts again on Monday..

As we haven’t told my kids the whole story, mostly to protect my 11yo daughter who is starting secondary school soon, I am rarely talking about it... which in some respects is good but sometimes it’s quite hard pretending everything is fine especially when I’m not able to do anything at home...and then having certain worries build-up in my mind..

I am trying to stay positive and taking each day as it comes..

Does anyone have children that age.. 11 or 16? If so, what did you tell them? My son is oblivious, as they are at that age.. and only really helps if I go on at him..

It’s a tricky one!

Stacey :x:

WendySue

Hello @Stacey I also found this tricky and the most difficult aspect of my diagnosis. My sons were 13 and 18 at the time. I decided to tell them that I was going to have some difficult treatment but I stopped short of further detail on stage and prognosis. I am glad I did so as I am still here 5 years on and they are now more of an age where more can be shared. Nevertheless there have been times when both have been upset and it seemed my hair loss on FOLFIRI was a trigger for my younger son to get angry. I have told them they are free to ask any question but they don’t ask. My counsellor had suggested early on that it would be best to be absolutely frank with them but my gut feeling was to feel my way through one day at a time.
Good luck with your treatment :x::x:

Stacey

Thank you @WendySue for your advice ..

My hair is thinning constantly at the moment.. I’m trying not to wash it too often or brush it.. so it’s a good thing I prefer a natural look!

I, too was advised to be honest by my nurse and oncologist but I decided against it... As my kids know I had a growth removed in January, we decided to say that it had returned and that now I need very strong medicine to make it go away.. This seemed totally plausible to them and they have accepted it without asking any questions..! On my bad days they know they have to help prepare dinner and cut vegetables due to the cold and my nausea..

Glad to hear you’re in the clear..
All the best
:x::x:

Stillme

Hi @Stacey - I have come into this conversation a bit late so I am still advising on the side effects! One thing that seemed to make a huge different to my nausea is that after I was hospitalised after my first chemo due to severe sickness, I was also given emend and ondansetron but they put the steriods and anti sickness apart from emend, into my drip before the chemo and that seemed to work wonders.:x::x:

scruffysheep

@Stillme I always had the steroids and anti sickness in a drip before the Oxy, I presumed that was what was always done. Perhaps that's why I never had any nausea.

Stacey

Thanks @Stillme and @scruffysheep

They are giving my the Emend and steroids prior to Oxaliplatin.. and I’m fine until Wednesday.. maybe it’s because I have a pump with the folfiri until the Wednesday .. God knows!!

Anyway. I’m dreading Monday but am also worried that my platelets will be too low.. and if there’s a set back, we won’t be able to go to Norfolk for a few days as planned!!

I want my life back! 🙁

Stillme

Hi @Stacey - you hit the nail on the head! My platelets were too low a couple of times and it throws everything off, obviously we are doing this to survive but the little things we plan in between to retain some enjoyment and fun are what keep you going :x::x:

charleyb

Morning @Stacey so sorry to read about your recurrence and i hope the new anti sickness help. I know when my husband had folfox his platelets plummeted around the same time cycle 4. He ate papaya, every day the week before chemo, half a fruit a day. He also took multi vits, and went for a walk daily, or tried to at least get outside to increase natural Vit D. Not so easy now we have this rain! He also tried to get as much rest and sleep as possible (again not so easy with a busy family and the effects of the steroids) All of which have naturally been shown to increase platelets. His dropped to 78 (his clinic go to 75 before stopping) and after doing the above they went over 100, and the next cycle they were 120 ish, i can not rem the exact values but i know they went up and up.
:x::x::x:

Stacey

Ahh.. thank you both for your advice @charleyb and @Stillme...

I am taking Vit D supplements, but fear I’ve probably left it too late to eat enough papaya, as we have been away in Lyme Regis for a last minute break.. I’ve been drinking pomegranate, as read that it too helps..

I shouldn’t be moaning.. you guys have been through worse.. your husband @charleyb.. clearly had his world turned upside down and you have young children. That must have been so hard.. mine are a daughter of 11 and son of 16.. my son is oblivious to most things.. I worry more about my daughter as she is far more observant and just trying to manage keeping her busy in the holidays on my worst days, is tough.

School shoe and trainer shopping today with a fussy 11yo wish me luck!

:x::x:

charleyb

Yeah it has been a pretty crazy year @Stacey, i don`t think i will ever forget that pain and devastation hearing the diagnosis, but you know what we are doing ok at the moment, and life has gone back to a normal (not the old one but a new normal). Charlie is pretty incredible, he is so strong and so positive and i think that helps me as i`m the worrier and the over thinker. Plus so far his treatment has been really successful, obviously we are not naive and we know this can come back but at the moment we are celebrating this win over stage 4!!
In some respects having smaller children has been easier, my boys were 1 and 3 when he was diagnosed and i never let them see him in hospital, so they don`t really understand it. They are so used to his scars and stoma that its actually normal for them. But we will have to have a chat about it all as there is a risk for them, and when that will happen i have no clue.
Good luck with school shoe shopping!! My son is 4 and so starts school in september so we have this to come, and he is extremely fussy about what he likes and doesn`t!!!
I`ll keep everything crossed that your platelets come back up, but if not as annoying as it is to have a break, its not the end of the world, just more annoying if you have plans. Oh and btw the injections they give you to boost wbc do help raise platelets, so if all your bloods have dropped maybe ask your team about it. Take care :x::x::x:

cara

HI just noticed this post I was on Folfox for 8 cycles. They put me on this after my original chemo caused me so many problems (lived in hospital) Folfox was slightly better for me but still ended up in hospital almost every cycle. I had terrible sickness/nausia and was given anti sickness meds via a syringe drive an also had an injection every day for anti sickness . I had nurse come to my house every day to do this and this is the only thing that got me through it. I suffered with almost every possible side effect. They had to give me this because they decided that my body would not absorb the tablet form. Ask to be referred to a palliative consultant/nurse and they can arrange this for you. They have excellent anti sickness drugs and nobody needs to suffer from the sickness or nausea. Hope this helps. lots of love Cara :x::x::x:

1234annie

Hi @Stacey
I had 8 sessions of folfox with Oxaliplantain and a further 3 with just 5fu. My neuropathy was bad and still isn't great now 9 months on buy has improved. My kids were 11 & 8 at diagnosis. We decided to wait till after surgery which I had straight away, I don't think I could have hidden it as you have the pump on at home and the nurse arrives to disconnect. I'm sorry you are feeling so sick, you have to keep into of the meds and take them even if you don't feel sick if that makes sense. I wish you well Annie :x: :x: :x:

jinnyp

Hi @Stacey I don’t know why I didn’t see this before! I hope by now your nausea has improved but just in case it hasn’t..............
I had 12 cycles of Folfox although the oxy was reduced by 20% for the 11th and then omitted for the 12th cycle due to neuropathy. I had quite a lot of nausea especially after the 5fu pump was disconnected. Do you get given ant sickness meds to take home? Sorry if you’ve already said and I missed it! I used to have a loading dose of dexamethasone and ondansetron as a premed before my chemo and then took dexamethasone and domperidone at home for 3 and 5 days respectively. I stupidly thought that once the chemo stopped there was no chance of nausea but in fact the nurses told me that was the time it was most likely to be a problem. I also used to take ondansetron regularly for the first few cycles and also had cyclizine to use if I needed it. I found that the nausea improved after about 4 cycles and towards the end I was only using the dex/dom combination with a very occasional dose of ondansetron. As @1234annie says, keep taking them even if you don’t feel sick, it’s easier to keep on top of it than to get rid of the nausea once you have it.
My twin daughters were 16 when I was diagnosed - I was completely honest with them and they are pretty much aware of all of it although I have skimmed over the prognosis as much as possible because on paper it’s not great! They know they can ask me anything and I've said that I'll be honest with them. One wants to know everything, she’d even staged me before I saw the oncologist (to be fair I had done that too!) - she operates better when she knows all the facts; the other one asks me very little and just takes it day to day. I do think that often what they imagine can be even more frightening than the reality, I certainly found that at the beginning. You will probably have had a lot of advice but you know your children best and will instinctively pitch it right for them.
Take care, Jane :x::x::x: