Stopping chemo early

Hi am just wondering if anyone stopped chemo early it’s been working well so far but finding it v hard with se and kids hols I’ve 2 more to go and it will be no fun for my son I’m tn with sec to lungs so this prob won’t be a one off my oh as to work no real family surport so treatment is v hard I just don’t know what to do any advice be great Laura

HI Laura
I totally sympathise as have 4 kids 1,3,11,14 and is exhausting but we have to give it our best shot. I had recurrence within wqeeks of last chemo EC and so want to complete the course if possible to ensure all micro cancer removed. Seems to return very quickly so am sure Oncolgists say carry on but is up to you to balance side effets with prospect of recurence. Could you extend gap between them for hols to give some respite ?
Jo

Hi don’t think so every 3 wks I had return with in a yr of last chemo I only one 12yr old and he very gd just makes u feel guilty got so many pains today can’t move off sofa one part of me wants to say give me a break one wants to just get it over with prob just down day it always seems to come up in sch hols

Oh Laura - what an awful decision to try and make. As Hope says could you extend the gap a bit would that help.
I see you live in Brighton if I lived closer I’d come and give you a hand but London is just a bit too far. I wonder if anyone else on the Forums lives close by and has finished their treatment and could help you out. Any chance of your son’s friends parents helping you? Do you have any friends of your own who could help or have you tried contacting Macmillan?
Sending a big hug- Diana

Oh Laura I feel for you, I have just finished my Tax, it was so hard and I don’t have young family ! I did have a reduction in dose on my last one , 5 days ago , and I have been much better re SEs , could you not ask for a reduction, I have lung mets too and worry that if treatment stopped they would show progression, so please try to continue if you can , I wish I could help you but I live in Nw England too far away !Its an awful place your in at the moment, I hope you find the strength to carry on.
Sending you a big gentle hug
Jean

I was down for 8 x fec but only completed 5. I was reasonabley well for the first 3 but struggled with number 4 and and was hospitalised twice with number 5. Two oncologists told me that continuing was not wise as my body was reacting badly and i was breathless, had sores all over my feet and mouth and had a white cell count of 0.3 that would not rise. I had a 2 and a 1 yr old and i can honestly say i was so relieved they decided to finish the chemo early. I do worry but i feel they are the experts and i was literally falling apart.

S
x

Hi Laura

It’s a horrible decision to make.

I was prescribed 4xAC and 4xPaclitaxel. Managed the 4xAC but gave up after 3xPaclitaxel. I just couldn’t do anymore, everyone was suffering and I decided another month of hell might damage family relationships irreparably. I had an awful time on AC - terrible gastro-intestinal problems, rotten finger and toenails, hospitalised once, and was pregnant. The Tax was easier as I wasn’t pregnant anymore, but by then I was ground down to nothing.

I was being treated for a regional recurrence. But I decided that even if the cancer came back, I probably wouldn’t think if only I’d had Tax no.4 I wouldn’t be here. I’m not sure, but my onc seemed happy that 7 cycles were plenty and told me that it was just the way things were done, that there was no evidence to show that 8 cycles were better than 6.

Wishing you well, it’s so tough to put yourself through it when you just want to be able to carry on as normal. xxxxxx

hi laura, i would ask if you can have longer gap between …they can only say no… i mean if your bloods get low then they leave a gap and it doesnt affect the regime so just ask … give you time to pick up a little xx

Hi Laura,

I don’t envy you with this, I had a decision to stop made for me by my Onc.
I had 3 FEC 75 and 1 FE as I was having problems with WBC recovery even with lenograstim injections, I was due 6 FEC. Plus my Asthma had deteriorated quite badly. However I had a grade 3, no node involvement and the ONC was OK about me stopping when I did.

You really need to talk to your Onc as the gap between sessions can only be lengthened a certain amount (I was outside the effective window at 6 weeks for FEC). Can you have a phone appt if it’s not possible to see them quickly?

Good Luck with the rest of your treatment and I’ll be thinking of you.
XXHelenXX

i was due to do 6 FEC, but i did 4. I have lots of other health issues, and ended up collapsing on the floor, and being rushed to a and e by ambulance.

im on tamox. now. finished my fec in Feb 2010, 15 rads, tamox. i had 2 wle surgeries- er+
eva

Hi there

I feel for you, i really do…

I had 3 x FEC and 3 X tax, and after tax 1, i was ready to quit!
My loss of hair, having once breast, and all the SE effects had got to me.
I had two children, who were 5 adn nearly 2 at the time, and it was hard going,so totally know how you are feeling.

Have a good chat with your oncology team, and see what it means for you, if you do decide to call it a day early.

Have you any friends who can help you out at all?
Speak to your Macmillan nurse or your BCN nurse and tell them you are struggling and that you need some help.

I wish i could help, but i am in Cheshire…:frowning:

All the very best to you…

Naz xx

That’s awful when you have small children as they just dont understand :frowning:

I’ve been looking after my stepdaughter who is 12, her Mum is working and has childcare issues. I try and do some stuff with her like play board games, cooking, chatting, but I still feel guilty that I just dont have the energy to do more. She doesn’t have any friends at ours either.

But luckily she understands about me feeling tired etc, but I can still see the look of disappointment and feel guilty.

It’s really tough xxxx

Personally. I would carry on.
Speak to your oncy and tell them what you are telling us. They can help. My youngest is 13, and she’s been fab, very mature about things. I wouldn’t consider stopping now. I want to see my girls grow up. (OK, shoot me down in flames!)

Have many of your son’s friends’ mum said “let me know if I can do anything to help?” I know it’s a stock phrase but now is the time to take them up on their offer. If your son can go to a friend’s house for the day, or even for a sleepover, you will know he’s amusing himself with his mates so you don’t have any cause to feel bad.

And if you’re not taking him out here there and everywhere he won’t be any worse off than millions of kids across the country whose parents don’t, or can’t, play taxi-driver and full-time entertainments organiser during school hols.

At 12 I’m sure he has his own opinions on what he might want to do, so give him a bit of responsibility for his own entertainment and see what he can find to keep himself amused. If you can afford it perhaps suggest he goes to the cinema with a few mates, or if you think he’ll be sensible with tidying up afterwards get him to invite some friends over, and show him how to use the oven so he can cook a pizza or two while you stay out of their way and relax. At that age they don’t need masses of entertainment laid on for them, and often appreciate the little things like just chillin’ with mates more than the big things.

Have a chat with him to find out what he’d like to do, and see if there’s any way you can help him to organise to do those things without your heavy involvement. You never know, he might enjoy the challenge!

If he has friends round and you just want to snooze for an hour or two, go for it. If he goes out, take the chance to have a rest and read that book you’ve been thinking about. The big thing is to remember to be as kind to yourself as you would be to anyone else. All too often we’re our own hardest critics, so look at what you are currently trying to do and imagine it’s someone else you’re looking at - what would you say about someone in your position who’s trying to do absolutely everything they would have done without all the chemo SEs? You’d probably say they were nuts and should rest, wouldn’t you?

Good luck with fighting your way through the SEs. It’s really horrible, but please don’t feel guilty that you’re not able to do stuff with your lad, instead try to listen to what your body is telling you and give yourself the time and space to rest and recover. I’ve been so lucky with SEs, but even so I found I had to rest, rest and rest, and let the kids take on some chores and responsibilities. My youngest now makes THE BEST cup of tea on the planet when previously she had difficulty boiling a kettle!

Hi Laura, just a thought but how about an extra week or two off? Give you some quality in the middle of the p**. I’m on weekly treatment, but having two extra weeks off in august, so week on, week off, week on etc… I am going on holiday, but could just as easily be staying at home. My onc was happy, nd me too!!

Hugs,

Sadie Xx Xx

Hi all thanks for y comments think I was just having a down time se are getting to me and as I’ve sec don’t know how long I’ll be chemo free but I’m delaying the last one so I can have a few days away with oh and son so scan thurs num 5 wed after end aug off on me hols to try gather sum strength . Sadie I’m on 3 weekly so it’s a bit harder for me to have weeks off as have to delay them all thanks for y surport I’m sure I’m gona need it again tc Laura xx

Hi laura
glad you’re feelin a bit better + have a holiday planned. Delaying chemo is a great idea + should give you a bit of a break. Just stay focussed on those fantastic scan results you had recently + that should get you through tge difficult se’s and down days. Fingers are crossed 4ur next scan hopefully all is still going well + tge chemo is worthwhile :slight_smile:
it is hard though as there is no end in sight, tnbc is a nightmare. Just wish the big tn treatment breakthru would bloody hurry up!!! I’m expecting to be back on the chemo after my hols. Can’t face it but it’s gota be done we’ve gota do all we can to stick around haven’t we…
Love Tina xx

Basically YES, we do whatever we have to to hear our kids laugh nd watch them smile!!

Sadie Xx Xx

Hello Laura, really sorry you are thinking along these lines. I understand how you feel, but think you should continue with your chemotherapy. I know as a mum, you want to put your sons happiness first, and want him to have fun during the school break, but
it’s more important for your son that you’re around for as long as possible. I could understand you wanting to have quality time, if your treatment was not working, but you say yourself that the chemo has been working well. Finally, chemo is not something that you can stop and start, willy nilly, as cancer cells can become resistant to chemo, so it has to be used with care.
I’m not sure about your chemo regime, but I had six cycles every three weeks, and began to feel better about half way through each cycle. So maybe you could plan outings to coincide with when you pick up.

Hi yea thanks I know I did spk to bcn about how gd was 5 to 6 treatments and was it any better she sd they do sometimes stop at 5 if se are bad or if u were having v gd response as there is no hard and fast rule that 6 are better than 5 so I’m gona wait see what my scan says next wk have chat with onc my fingers and feet are quiet bad at moe so not sure what they do but also they are gona delay my last one for a wk so I can go away for a few days chemo is hard going like u know and my se are hell so it’s not easy but thanks anyway tc Laura x