hi everyone its been a while since i was on i started my chemo on the 10 june iv only had 2 lots of epi and i have had most of the side effects sickness being the worse one iv had ulcers water infection iv no hair and i have been neutrapenic i had to go back in hospital and have injections to boost my white cells does anyone feel as bad as i do i could do with some tips especially for the sickness and the taste in my mouth sorry to go on but it is now getting me down xxx
Please don’t feel the need to apologise - you have seriously been through the mill and I think you have earned your right to have a good old moan… I can’t offer any constructive advice on dealing with what you are going through as I’ve not been through chemo myself. I just want to say sorry you are suffering so badly and hopefully someone with some hints and tips will be along soon to help you with the practical side of it.
I know there is a long thread under the chemo section that others have found very helpful … but if you are feeling really rough then perhaps trawling through hundreds of posts will wear you down so might be as well to wait for ppl to respond on this thread … I’m sure no-one minds repeating what they’ve already posted.
Hope you are on the up soon.
Hi Jaydeek
So sorry you are having a rough time. I had 3 FEC and 3 TAX last year and I have to say there weren’t many side effect boxes I didn’t tick. The first FEC was the worse for nausea but they played about with the anti-sickness drugs till they got it under control. Still could only eat cold food for first week but no where near as bad, have you got a chemo nurse you can speak to or ring the unit and ask if they can prescribe anything else if its not working.
Mouth wise I had diflam and corsodyl mouthwash that you need to use after you eat, first thing in morning and last thing at night and I also had diflam spray that I used whenever I needed. Have you got a soft toothbrush, you can gently brush your tongue if it gets coated [you must be gentle though], taste wise its tricky, much as I wanted to eat good healthy stuff I just went with what I could cope with which included cold baked beans, hard boiled eggs [no good if you’re bunged up], beetroot and drinks ranged from bitter lemon to skimmed milk.
TAX saw my blood count plummet and had to go in for 6 days for IV AB’s but then had the jabs that worked great.
Sorry if this sounds awful but you will get there, I thought I was never going to get to the end but I did [even my onc said I had been through the mill with it], I now have hair, eyelashes, eyebrows, finger nails, toe nails [and a much fatter backside but there we go].
Keep going girl, you can do it
AJxxx
Only thing I can really offer is the sipping water at room temperature is less hard on the stomach and less likely to aggravate the nausea.
Sorry you’re suffering so badly, hope the rest get much easier on you.
thanks everyone for ya advice i was at the end of my tether with it i feel like i cant cope with all this at the moment xxx
You’ll get there, BIG HUGS
{{{{{{{{{{{{{JAYDEEK}}}}}}}}}}}}}
AJxxx
I am so sorry to hear you have been so unwell on epi. I have had four epi and although I did not havre nearly as many problems as you,it make me feel very depressed and I wanted to stop as felt so bad. I am now onto xeloda and am nearly at the end of my chemo. I thought I would write to say that I have come out the other side of epi hell. Yes, i did feel nauseous and had a nasty taste in my mouth. I could only drink water from the tap. As far as sickness goes I did have my vomit filled moments. Your onc should be able to control the sickness. I had the gscf injections too and they do keep away neutrpenia. Wishing you well.
Rach xxx
Hi Jaydeek,
well just so you don’t feel quite so alone, I had epi 3 last week and my tongue feels like I was licking the dog all night - really couldn’t say which end of him either! My gums are mushy and my teeth feel like they are cutting my tongue every time I move my mouth. I have a large bald monks patch on the top of my head and I am supposed to be going to a year 11 prom with 150 16 year olds tomorrow. My focusing power has just moved up to about 4 feet and I spent the weekend with people watching Wimbledon on tv but I could not actually see the ball.
Hope I made you giggle a little or at least not feel quite so out there on your own. I am sorry you are feeling yuk, the Difflam after every time I eat usually helps but not working quite so well this time. The only relief I get from my mouth is to fool it with different textures like crispy toast and soft scrambled egg or crunchy meringues and strawberries. lollies work for some.The other thing with the mouth is to really force yourself to drink or you get the burnt tongue and foam, yuk!!. Epi irritates the bladder so I try my best to drink a lot while in chemo or try to get 2 bags of fluid put through so I don’t have to drink so much myself. I keep thinking it will make me feel worse but then find if I try food or drink I am sometimes surprised by how much better I feel. I haven’t been sick myself but think you need to get on to it so that something better is planned for next time, or they will have written it up before you get there. My friend is having 2 drugs to stop hers, one blocks the brain impulse or something like that!
Best of all this will pass soon. Good days are on their way.
Hugs
Lily x
Yep, echo comments on drinking loads of water. Fresh pineapple is good for the yuk mouth and my BCN told me not to put up with nausea - there’s many options nowadays to control, so they can fix it. Get them on the case!
I’ve just finished 4 x EC and am struggling a bit more on Tax but rest helps and eating small amounts regularly…Lily’s right, you think it’ll make you feel worse but it keeps your strength up and makes you feel better.
Good luck and stick with it, Jaydeek! One day the clouds will parts and a few rays of sunshine will creep though…and better things will follow.
L x
Hi Jaydeek
Sending you big hugs, Jaydeek, that you are going to be feeling lot better very soon. I had my first FEC nearly two weeks ago and felt awful. Sick as a dog. Had awful thrush. Spots. Dry eyes. I found pineapple great and also I drank loads. The eat little and often idea worked for me and I can now eat for Britain again and feel fine. Im sending you positive energy that will be feeling well very very soon.
Love Claire x
Thinking of you Jaydeek -
I’m about to have 2nd TAC and am dreading all the symptoms again - cos I’ve been lucky and this wek I’m fine.
For the nausea - def get more drugs from the onc. i had something beginning with o (not helpful I know…) on the day and the first evening then Dom Peridone regularly. Ice helps to block nausea pathways - lots of ice in drinks helped me. I drank 2 litres of water a day (always on the loo) plus other drinks. Lollies helped esp Smoothie lollies, so did sorbet.
I also had extreme heartburn (to the extent that I thought I was having a heart attack!) - Omaprazole sorted that out. I too has gscf injections - I did them myself at home.
Ditto for Difflam and Cordysol and difflam spray…
i did get a prepay cert for my prescriptions… £27 for 3 months. Seemed like a bargain!
hang on in there. It’s gotta be worth it
Td xx
hi jaydeek, oh dear poor you epi is one of the nasty chemos…re mouth try anything difflam, rinse mouth keep mints by u if u can take em even toothpaste hurt my mouth the sickness has`nt your bc nurses given you any anti enemics? domperidone? as for being neutropenic u sound like what i went thru daily injections being admitted to hospital etc remember to take your temp if it goes over 38 phone your bc nurses, it does get better these are early days hun
so keep in there …all the best caroleann
There are so many anti-sickness drugs out there that should help to minimise the nausea. I was on ondansetron for a couple of doses and then metoclopramide three times a day. The GP wrote me up for more of the ondansetron (they are expensive so the hospital tend to be a bit tight with them) and the oncologist said to up the metocloprmide to two tablets four times daily. Before ondansetron came ontot the market they used to give enormous doses of metoclopramide. I also used domperidone suppositories. All of that helped but the side-effect of those drugs is constipation which I found more distressing so it was trying to fiddle around with the drugs until I got a decent balance!!!
I hated the taste and soreness of my tongue which is why I have put on weight since I stopped chemo - everything tastes wonderful!
Hope the rest of your treatment goes well
Lots of hugs xx
I know this may sound counter intuitive but me and OH were talking about how I’m getting off so lightly in comparison and he reckons it’s the sausage and egg muffin I have before each dose ie something lining my tummy before they pump in the drugs so it doesn’t hit so hard. And drinking copious amounts of water before hand too.
Joanne42 (I think) also suggested that sucking lollies during the chemo acts a little like a cold cap for the mouth which should help stop the epi getting into the gums so much etc. I’m trying that on Monday but haven’t had as many problems with the mouth this time. I think that the amount you gets ulcers etc is directly related to your immune system and mine’s been OK this time, last time it was a fight to keep it under control.
So do make sure you try to have something to eat before the fill you with drugs. even just a little oat bar would help as it’s slow release energy and easy to eat. I appreciate not everyone craves a full english before this stuff (I know… I’m odd).
OMG reading all this is bringing it all back, all those drug names that I had forgotten.
The key word there is FORGOTTEN, so hang in there ladies, its vile but you’ll get the job done.
hi everyone thanks for all your kind words and advice and lily thanks i have not giggled like that for a while i have now got your image of licking the dog stuck in my mind !! i know its a long road and so everyone tells me its worth it in the end im sorry but its easy for the people who have not had this to say that , i have worked it out that it is taking a week after chemo to get over the sickness today is the first day i have not felt like iv been hit by a steamroller i appreciate all your advice thankyou xxxxxxx
Hey Jaydeek,
any time you want to switch the current taste in your mouth for the rear end of a 9 year old Tibetan Terrier, say the word and I’ll email the dog. I could do with a rest!!!
Good days are on their way, we are on the UPPPPP enjoy every good second
Lily x x
thanks for the offer lily but i will stick to ice lollies im looking forward to the good days xxxx
Hi there Epi ladies
Vomitting and sickness was horrendous for me as well.on number 3 and 4. of EC.
I vomitted for 3 days. The only relief I got was from Nozinan.(injection) Its very strong but works a treat. Strong in that it sedates as well and can lower bp. But I was in bed anyway. Went to sleep insatntly slept all night. Different woman the next day. Could drink anything and take steriods and antiemetics.
To get sorted I phoned the district nurses and palliative nurses, they asked the palliative consultant, for the prescription. but they use it a lot for vomitting and nausea. My GP was happy to prescribe it again as was my Oncologist. Ive had it as tablet form this time. A quarter of a tablet on a night day of my chemo and the last 2 nights. I havnt even felt sick. Very tired though but I can cope with that. Id recommend it to anyone. Its miserable enough without being sick all the time.
Hope that helps
Lyn x
Hi Jaydeek
I think that you should phone the chemo nurses up with regard to you feeling sick, (I actually rang Clatterbridge & Whiston) and they changed my sickness tablets. I had 4 x Epi and 4 x CMF, the Epi is quite strong and I too felt sick. Just think that you are 2 down, a friend (who had had chemo) told me to think of it like climbing a hill, you only have another 2 to go then you will be coming down it again! I used to buy fresh ginger (cant stand it now mind!) and cut huge chunks and put it into hot water, and also, cold pineapple worked for me when I could face it. I also found the lady who volunteered for Breast Cancer Care, who had been through a similar situation helped me through it. She used to ring just after I had had my chemo and all those worries that you have you can ask questions and it reassures you that there is a light at the end of the tunnel. Why don’t you ring BCC and ask about it?
Much love and loads of hugs
Debbie