Anyone have experience of 5-FU treatment??

Hi Nettie123

Just want to reassure you about the “chemo “ brain aspect . My mum had chemo for two years and I certainly did not notice anything too obvious . She was certainly able to carry out a lot of reading and all her finances etc ! There was nothing I would have been overly concerned with . She maybe had to work a bit harder to maintain her concentration but it was not out with her control or noticeable to me . She would perhaps be more aware of it but it certainly did not impact her cognitive ability . 

Your hobby sounds amazing . How interesting. 
Chemo can be altered if the side effects outweigh the benefits . My mum had hers reduced and it actually made such a difference. They do monitor and reassess as required . 

I will leave others to share their experiences and tag in Kareno62 as she might be able to give you direct experience.

Take care ,

Court 

Hi Court

Thank you so much for your reply. It's certainly good to know that chemo levels can be altered. 

Best wishes

Nettie123

Hi Nettie,

I'm currently on 5FU, just had my eighth cycle, also had it over 2 years ago. Chemo fog has not been an issue for me, I sometimes find just the first few days a little wearing because of tiredness but definitely no cognitive issues and concentration isn't an issue for me. Energy levels usually perk up again after 4-5 days. Hair loss always seems to happen but am used to that.

Everyone has their own experiences of their treatment but hopefully you will manage really well, pace yourself and listen to your body and check out any worries with your chemo nurses.

Best wishes

Martin

Hi Mnb62 (Martin),

Many thanks for your positive reply. I think you're right everyone has a unique experience of chemo. Good to hear that you've never experienced cognitive problems.

I'll aim to be positive, keep as active as possible and hopefully retain a sense of humour!  

Totally agree 'hope is a superpower' - cool phrase.

Best wishes 

Nettie123

Hello Nettie123,

I had a resection in early January and started chemotherapy in early March. I’m on Folfox as Capox not suitable due to having a stoma (hopefully termopary).

Folfox is Folinic Acid, Fluorouracil (5FU) & Oxaliplatin and mine is given in 2 week cycles – all given in infusion as outpatient on day one, then sent home with 48 hours pump with more 5FU. I’m on my 3rd cycle now. My second cycle had to be delayed for as my neutrophils took 4 weeks to return to a safe enough level for treatment and because of that they have reduced the chemotherapy drugs to 80%, this seems to have worked as neutrophils returned to safe levels after 2 weeks now.

I have some brain fog but I think a lot of it is caused by a combination of being so tired and the steroids I have to take for a couple of days- day 2 & 3 (which make me feel like a zombie), things certainly improve from the 5th day after chemotherapy. Brain fog is maybe too strong a phrase as I have no problem reading, writing and I do some arty hobbies and have noticed no difference in concentration other than tiredness, however my husband says I’m not remembering things as normal (as you’ll know women are better at muti-tasking and keeping things in their head and even though I’m not retaining as much information as normal, I’m still better than he is normally).

Regarding the hair loss. My oncologist said my hair would thin but I wouldn’t lose it all. I’ve noticed it’s very thin at my temples and thinner maybe on top too but only noticeable to me. I have very fine thin hair anyway which doesn’t help. Although I’d prefer not to lose my hair I’m happy to embrace this knowing it will grow back; my biggest concern is peripheral neuropathy, but so far I’ve been lucky.

Everyone’s experience is slightly different and the not knowing is hard but hope my experience helps you. As Mnb62 says listen to your body, pace yourself and don’t be afraid to ask questions, seek reassurance.

Best wishes
Net77

Hi Net77,

Thank you so much for such a clear and comprehensive insight re: your experiences. It's so helpful to know what everyone is experiencing. Somehow makes it easier to weigh up and ultimately deal with.

I love the bit about still being better, than your husband, at remembering things! 

Totally agree re: 'listen to your body'. I'vr been doing that. Was quite lazy yesterday as really tired. Did loads of things today, including some transplanting of seedlings, light housework, walking, simple gentle morning workout and work on my laptop.

Very best wishes for your treatment.

Nettie123

Hi Nettie123, I had 5FU , see my profile for details. Towards the end of the 30 weeks I did have some brain fog, but I must admit it has been far worse with long covid! No hair loss, slight palmar plantar erasure, ie sore hands and to a lesser extent feet. It was this with any of the chemo I was most worried about, as I work with my hands. The brain fog never crossed my mind! I did manage to work all through chemo, though I slowed down . Any questions please ask. I too always prefer to know what I am up against !

Hi Gemmary 

Thank you for your reply. Wow, cool that you managed to work all through your Chemo, especially as you work with your hands and had some issues with palmer plantar erasure. Glad you didn't have brain fog until towards the end of your Chemo; also, no hair loss (my two worse fears, but must face them!)  It must be really hard recovering from long Covid. Thank you again for your reply, it's so helpful to hear from everyone who has experiences this.

Very best wishes for future good health

Nettie123

I'm also on cycle 11 of FOLFOX which includes 5FU.  I did not experience hair loss - the main symptoms have been dry skin, largely affecting hands and feet.  Despite using lots of moisturisers, etc., this was cumulative and I often get fissures on fingers and cracked heels.  You should definitely chat with your oncologist if it becomes too problematic, because dosages can be amended.

My mum had 10 rounds of Folfox and Cetuximab last year and had bad face rash ( Cetuximab), loss of feeling and tingling in fingers and toes, terrible sore mouth, and loss of taste/disturbances, extreme tiredness, very sick when she came home from chemo clinic, bit forgetful/ confused, but she is dpd deficient, so the chemo is extremely toxic to her. The chemo put her in hospital with sepsis twice, but with the dpd deficiency I'm not surprised. She's just literally come through liver resection and repair of diaphragm ( cancer removed), and cancers back growing already so, the picc lines going back in and she's starting another 6 rounds of chemo this summer. She is not looking forward to it one bit! Some people sail through chemo, so I think my mum is not a good example of most people experience.