I have been sofa and bed bound since the third epi. This has got to be the worst so far. The constipation started straight away so my stomach felt like it was getting bigger and bigger and very sore. Tried lactolose and laxatives what a flippin nightmare. Managed to go by sunday what a relief.
Flo same as you. The bed feels like i am on the rough seas with the nausea feeling and i also have the acid reflux going on and it is so painful, plus i keep burping my OH also thinks its funny. I had some honey last night before i went to bed and that seemed to line my throat as my mouth is incredibly dry as well. My toungue feels like a shepherds sandal whatever that feels like.
I am really not looking forward to the fourth as i feel i will have to go full circle again and start all over again and that is so frustrating.
I can relate to ‘no taste’ and nausea with epi. Everything tasted awful, absolutely awful. Taste came back for a few days until the next cycle started. No problems on xeloda though. I lost my appetite too and managed to lose the weight that I’d been trying to lose for ages. It won’t be long now. Once you get the last out of the way… I am still suffering from nausea but only ‘low level’ not like epi at all.
Hi Mal and Felix…oh Felix - it’s grim huh…really feel for you at mo and if it’s not one effect it’s another huh. Re the constipation I had something called Movicol…yep it moved it made everything so ‘passable!!’ worked within 24 hours. Re the acid reflux in oesophagus. My chemo nurses were brill yesterday. I phoned at 8.10am - they hadn’t even got there coats off ha …I think they realised was in rough way. They prescribed something called Lansoprazole. It’s taken two doses (1 a day) for me to see any signs of ‘help’ I still feel very ‘burnt’ between throat and belly button and eating and drinking is still a bit interesting but just had breakfast of bran flakes and banana and it’s not as bad. Wasn’t like eating glass like yesterday!
Feel very achy and boy does the hip and leg bones and lower back hurt. Think I may be a bit like Lizziemum it’s day 9! Assume its because was couch potato for last few days and limbs have stopped working!
Like you AM NOT looking forward to next chemo. I just feel it’s going to be the worst yet…but hey must stop moaning - see the bright side.
So Felix - epi on Tuesday next isn’t it. Mine’s monday day before. Bloods on Friday to quicken up things( well from the 4 hours to 3 by the time I arrive to leaving.)
So Mal - this nausea - is it continuous on Xeloda like you’re pregnant? or is it less? Do you still have the fuzzed head and blurred vision. (I can’t get my eyes to focus much - thought it was my glasses being varifocal (age thing) but now not sure.
hope the rest of you girls are okay…momathome? Lizziemum?
Does anyone else feel a bit ‘don’t know what to do’ each day. Want to do lots of things - tidy/sort/plan xmas shopping even practice flute but just have that 'can’t be bothered or don’t feel like it
Come on girls - as Felix said you can do this. If I can, you can. There’s nothing to say it will be as bad next time. My 2nd epi was truly awful and I was dreading the next, but the 3rd and 4th were not as bad. The tiredness was worse but the side effects were less (except the taste).
Honestly xeloda is MUCH better. The nausea is constant (for me) but the pills do sort that out. And NO you don’t have the ‘messed up head’ (as I called it). I felt as though I couldn’t walk a straight line on epi. As I said before I am working 5 hours a day and I certainly couldn’t do that on epi.
If you don’t feel like doing anything - then don’t. I’ve just got round to getting rid of the cobwebs which were taking over. In the great scheme of things cobwebs etc don’t matter.
You will get over this (I know it’s hard and the light at the end of the tunnel seems a long way off) but once you get over the half way mark you’ll feel phsycologically so much better.
Hi Mal - was just having a down moment earlier - and you’re right - I know I will get over this in 5 months. Its okay when you feel okay and everything seems twice as bad when you feel cr*p, so don’t listen to me - I’m fine.
I think the hardest thing is trying to keep going with the children. So many activities to get them to plus get dinner sorted in between so that they have eaten before 7pm! Sometimes it’s just a logistical nightmare and that was before the chemo! Hubby works from home for an American co so most pm’s he’s on telephone constantly and does not rear his head until 6pm to eat then back to work or then sits down for most of evening in front of TV. He does do most of the ferrying after dinner, but this has only since I’e been diagnosed with BC and most of the initial stages ie surgery was in the holidays so it wasn’t so tight on timings etc… He just doesn’t really have the time to do things when the children need it because of work commitments and getting food on the table is just not in his thought patterns or work patterns…so it’s really up to me.
So it’s pasta tonight - quick easy and ‘nutritional’
I’ve vegged all day - listened to talking book for most of the day and then had two friends turn up and had a cuppa with them and now children are home so things a bit better on the I don’t know what to do. It’s the whacked feeling that takes it out of me when I’m just so busy normally. I don’t think I ever sat down before 9:30pm before all this BC stuff. So It’s a big learning curve!
It’s OK you’re allowed to feel down sometimes. You wouldn’t be normal if you didn’t.
The fatigue is the pits and I really feel sorry for you girls with children to look after. It’s bad enough having my grandkids for a few hours! Don’t know about you but I’ve felt much better in the mornings until lunchtime and the slow cooker has been wonderful. I prepare the meal in the morning when feeling brighter. As for the ferrying about do you not have family/friends who can help out? Failing that you’ll have to drag your OH to help out. My son works from home and has 6 kids, but his wife has him doing all the fetching, carrying and cooking!
Can I ask your son to come here then HA I don’t think my OH will ever change - 14 yrs marriage and nothing has changed yet. He was great in the first couple of weeks expecially when I had that episode with Chrisites…but it seems to have wained. I put it down to feeling okay for a while but now I just have to get on with it. Life sucks and then you get BC HA !! I think my sense of humour is fat becoming warped… Off to get tea for brood. Hot apple and blackcurrant seems to help the nausea and reflux…so will keep drinking it.
Love and hugs from a very wet and grey South Manchester…and cold too but then it is the north. (I’m a southerner by birth so always moan about the weather up her ha ha)
F. x
Thanks for the remedy on the constipation flo is that by prescription or over the counter? If it moves in 24hrs thats for me.
I really dont know how you are finding the energy or the motivation to look after your brood but hats off to you girl you are doing. I do think you need to kick your OH into touch and remind him why your in the situation you are and ask for that little bit of help otherwise you are going to keep getting ill. My OH has been my rock and he has really looked after me through this and you need that support especially on down days.
Keep the lady of leisure going Flo x
I keep saying to myself only one more to go my little mantra to myself and then hopfully what you are telling us Mal it all gets a little better.
Felix xx Also grey in the midlands and i am also a (southerner at birth)
HI everyone
Glad you are all progressing towards the end of chemo.
Just back from a very very windswept Isle of Skye - but uit was a lovely break Oh did cooking and spoilt me ( doesn’t usually - just leaves me to get on with it) He had the time and was more relaxed than I’ve seen hime sincde diag in April.
My GP prescribed Movicol for me otherwise my hospital would havfe givrn it to me as it comes in a big box.
My 3rd epi was the worst I think this one was a lot better but I was away. I even went for a walk on day 9 - unheared of previous 3 - in bed… Like Mal I have been working as and when I felt like it - great boss - he just leaves me to do what I want to.
Blood test Tuesday and hopefully ist xeloda on wed
best wishes
Liz
Well the nausea got much worse a couple of days ago so I phoned the trials nurse. She told me that my dose was too high and cut it by 20%. I asked if it was OK to cut it she said that they always start you on the maximum dose and see how your body reacts. What a difference! No nausea. No nothing. I feel perfectly well now. Wouldn’t know I was taking anything.
Your break in the Isle of Skye sounds wonderful Liz. Xeloda next week? As I said even with the nausea it was nowhere near as bad as Epi. So if you get any side effects don’t be afraid to call your nurse.
Hope you’re OK Fiona and taking it easier. Have you roped your OH in to help out yet?
sorry haven’t posted for a while. I must admit it makes me feel so much more normal when I hear that you’re all having similar problems to me.
Acid reflux was vile but onc prescribed lanzoprazole and at only 1 a day it’s worked wonders.
Third epi last thurs, and it’s knocked me about like the first one. I feel nauseous and don’t know what to eat, but don’t eat a lot of anything. Drinks are a pain too, can’t do coffee, can’t do orange juice, it’s just lemon squash, and grapefruit juice, I’m looking forward to feeling more normal in a few more days.
I’m so much more tired this time too, I think the GCSF injection has actually made my bones ache this time, my legs feel like I’ve run a marathon. I’m so glad I’ve only got 1 more left of these because the veins in my arm hurt too so I’m glad I haven’t got to have CMF intravenously. Has anyone started Herceptin yet as I believe mine will start at the same time as I’m on xeloda, and I’d love to know how it’s going.
love to you all
Mo
xxxxxxxxxxxxxx
Good to hear from you Mo but sorry you’ve been feeling so rough. As you say only one more epi to go! I know I couldn’t wait to finish it. I’m well on into my 2nd cycle of xeloda now and I keep telling myself ‘only 2 more needles’ for the blood tests. My arm is still sore from having epi and it can take a while to go by all accounts. I won’t be on Herceptin, so can’t help you there, but will be on Arimidex after rads. Look forward to the Xeloda it really is much easier. I’ve had a brilliant week-end, now that I’ve had the dose reduced I don’t feel any ill-effects at all other than the tiredness - my afternoon nap has gone from 1 hour to 2! It’s lovely to be able to enjoy my food & drinks again.
Well the fourth epi was a complete nightmare. They could not get the last 10ml into my veins as they started to go into spasm. Prof Grieves decided not to try and put another line in thank goodness as my arm is so painful and they can not use my other arm as they took out all my lymph nodes.
I have been on the movical since and nothing yet, so i am feeling quite nauseous and i haven’t bothered to get out of bed today.
Hi Felix
Oh so sorry for you
Hope you are feeling a bit better now. At least on the bright side that was youe last epi so only good things to look forward to…
Hi mal
Got my tablets yesterday and took the first dose last night. So far so good but tired though.
Am on 2000 milligrams of capcetabine ( Ht 5ft weight 66.2 kg) 4 tabs morning and eve.
Also on metoclopromide 10mg 1 tab 3 times a day.
How does that compare with you?
I am just back from the dentist - one of my fillings fell out - great but my onc nurse said ok to go so long as remind them on chemo…
Hi Mo
Sorry can’t help as not getting herceptin
MOG Felix so sorry for your nightmare chemo. As Liz says it’s the last one - hurray! Xeloda to look forward to now. Hope you’re feeling OK.
Liz - I was given 2300 mg morning & evening to start with (5ft 3" & 70kg) but the nausea although low level was getting me down. The registrar told me that it was too high for me and reduced it to 2000mg morning and 1500 mg evening. I was also given the anti-nausea pills and was having 2 x 3 times a day before they reduced the dose. Now I just take 2 about 11am and I feel great. Fingers tingle a bit but nothing else. I’m finishing 2nd cycle this week-end and back for 3rd next Friday. Feel human compared to Epi. Hope you tolerate it just as well but don’t struggle as the onc told me that they always start you on the highest dose and see how your body copes. They’re allowed to cut the dose by up to 20% although they cut mine by more as initially I was on a higher dose than I should have been.
Mo - hope you’ve surfaced from the chemo fog now and the nausea has gone.
Fiona - are you OK? Hope so. You’ve not been on for a while.
Hi Mal
If you see othr thread feel better thatn epi but lots little annoyances. 2000mg am and pm forgot to say. The worst part is the 12 hors between tablets and I cannot face getting up at 6am for my breakfast. may have to change as 7/7.30 is too late to eat my supper.
What a moan I am
Take care all
Liz
Hi again Liz - I agree that the 12 hours between is a pain. I do 7am and 7 pm and really begrudge having to set the alarm at week-ends! Still I get 3rd on Friday and then only one more - yippee. And you’re allowed to moan. It goes with the territory!
I have just started Xeloda this morning… I was told I didnt have to wait 12 hours between tablets. As long as I ate my meals at sensible times just to have them with Breakfast and Dinner. I decided to have a look at a few sites online and it appears that you should have 8 hours between tablets. It may mean that you could have a bit of a long lie in the mornings if it helps
