Hi
Thought i would ask if anyone else is starting their treatment on Friday. I am past myself with wondering how i will get through this not sure what side effects will be as i read the fact sheets then put in drawer as they seem to much i am not one to normal lie down feel so out of control.
Any tips to help side effects would be welcomed.
love Poppet
Hi Poppett I wont be far behind you I begin mine on Tuesday 21st October. I had my masectomy on 17th September and
only really starting to come to terms with that. I too am havin E-cmf and another type in between as I have also thrown
the information away. I think this is when reallity hits. Are you continuing to work throught out your treatment? Iam
not too sure what to do suppose I will have to wait to see how I feel.Take care
Hi Starsky
I have not decide about work yet just going wait and see how i feel and how confident i feel about my hair loss i have bought some beany hats but the job i do deal with the public. i have bought some crafts to do got loads of dvds to watch got myself some good books for my low days. And my family have been great i will try and let you know how i get on.i had two lots of surgery in a fortnight so like you still very sore and feel very restricted at the momment because every day chores you are unable to do. Have you got a good Bc nurse? Got to go to the ward on Thursday for a hour to have atalk with the nurses and they are telling me about the procedues so feel a little bit calmer when they phoned this afternoon.Take Care and i send a hug which we all need
HI poppet
like you i start my chemo on Friday, im doing the tact2 trial arm 4, just like you i wonder will i be constipated or have the runs, will i be sick, will i have mouth ulcers, will i be exhausted, with i have burning hands and feet will my toe nails go black and fall off, will i lose my eyebrows and lashes, when will my lovely hair go,Or will i be really unlucky and get them all, but i tell myself no that cant be possible as i have already been dealt this awful C**p
I had a mx on 6th Aug then node clearance on 3rd Sept, my arm still feels so weird and i still feel sore when i wear a bra, there still appears to be some swelling, but im told it will get better,
what time is your appointment? mine is at 10am, then i have to go back on Monday to the wig clinic,
Its the not knowing and not being in control that really gets to me, and the thought that my OH is going to have to give me an injection on Sat, or i might get my friend to do it, she is a doctor and she has offered but i dont like to put people out,
Starksky, you will be just behind us, so we can all support each other, big hugs and good luck to you both
Shirl
Hi all
i am feeling now the way i felt at the very begining the unknown is hard to deal with but i have decided that as many people on this site has said it is doable and i have 4 friends that have been through it and all had diffrent side effects but if you keep the staff informed there is anti every thing to help 1 of my friends is just had one chemo and she said for a week it felt like a hangover with out the headache.
i think the thing with me is it has sort of just hit me that the fight begins and boy will i fight
My app for the ward vist is 2.30 and i will find out what time i need to be there on Friday.
good luck to both of you
suzie
Just want to send love and hugs to you and wish you all the luck in the world.
there is another thread called ‘starting epi-cmf on 9th october’ and there are a couple of us in there just started, come say hi! xxx we only started ours in the last week
Hi lovely people
had my first epi today, all went well everyone was so nice, i got a lovely massage after my epi, then they brought lunch in for me and OH, But oh my goodness i was surprised that i have to take 18 pills a day for 4 days, they have arranged for the DN to come out and do my injection, no worries now about OH doing it.
i feel ok tonight, i was a litle tired earlier but not sleepy if you know what i mean, ------------- must be the steroids. OH just cooked me a lovely meal and i managed half of it, I have a little heartburn,
Poppet & Suzie how have you both got on, hope you got treated as nicely as i did,
take it easy
Shirl
Hi
Well had my first epi today feel fine the pink wee was a bit freaky had a good laugh at the ho bot with the steroids, no what you mean trojan about feeling sleepy but mind is fuzzy and you cannot sleep i am due more steroids now managed all my tea just make sure drinking plenty.
Going for a nice warm bath pj on and watching soaps on telly
take care
poppet
Hi ladies, wishing you all the best for your Epi-CMF. I’m 52, had mast/immediate DIEP recon in March, and started chemo in April. Just wanted so say I had my last CMF last week and it’s been pretty ok really.
Persevered with the cold cap (neoprene) throught the four Epi and kept almost all my hair, it thinned a bit all over, especially at the back of my parting where I think the cold cap wasn’t making proper contact, but I let my daughter cut it to collar length before starting and as it was quite thick I’m sure nobody else noticed at all. My eyebrows thinned a little, eyelashes stayed there, body hair from the armpits down went… but that was ok.
I was lucky enough to be offered an implantable port as my veins are hopeless - it’s a BardPort, which was inserted under the skin of my chest painlessly under ‘conscious sedation’, and is absolutely brilliant. A dab of Emla cream on it before leaving for hospital had meant the needle bit has been pain-free.
I had a couple of small mouth ulcers, not bad enough to need anything on them. Two fingernails have a slightly dark shadow down the edges, my toenails have always been thick and horrible but are even thicker and more horrible now, thry will need some professional help later on.
My anti sickness meds worked a treat on Epi, I was sick just twice on CMF. Had constipation after Epi, sorted with a Senokot at bedtime, but by the 3rd Epi I had developed irritable bowel syndrome as all the drugs - chemo, 2 types of anti-sickness, steroids, antibiotics - had badly upset the gut flora. My GP recommended Yakult and bio yoghurt, which I like anyway, and that has helped. I’ve had explosive diarrhoea for 7-10 days after each CMF and found codeine worked better than Imodium (loperamide). Anything spicy is unmanageable. I had a tooth abscess in July and as invasive treatment is not recommended during chemo, it was cleared up with a massive dose of antibiotics. My digestive system is still suffering.
The CMF caused terribly watery eyes and nose. I had calcium folinate tablets to help this but they have to start 24 hours after chemo, and be taken at 6 hour intervals for four doses. My tummy was so badly upset I missed the 3am dose a couple of times, and my eyes are still streaming since last Tuesday’s CMF.
Felt ‘hungover’ on Epi, as if my eyes didn’t keep up when my head turned. I had to drive occasionally as my daughter was doing exams, but really didn’t feel safely alert. That has been better on CMF. Sheer sleepy exhaustion is only just easing now but I am incredibly slow at everything, the tiredness has been really hard to deal with as I am an outdoor person and was quite fit and active before all this.
I found anything that I ate or drank actually while either chemo was being given now tastes terrible. I lused to love sherbet lemons, juice lollies, lemon barley water, hot chocolate, tea…but can’t bear any of them now. I’m drinking instant coffee instead for the first time in years.
Worst thing? I’ve put on 2 stone, probably from sheer inactivity. Not allowed to swim for months yet due to the risk of infection.
It really is do-able, and ANY problem just tell the staff - they can’t help if they don’t know you’re suffering.
Very best wishes to you all.
Hi All
well first day over, i thought i was doing so good yesterday, just a little heartburn and a fuzzy head, but by Midnight i suddenly felt soooooooooooooo sick, i only just made it to the bathroom, luckily for OH it was empty, or he would have had the nasty job of cleaning it up, I have never thrown up so much in my life, but i felt really better afterwards, went to bed and slept quite well, got up at 7.30 this morning, Just had weetabix with manuka honey and milk, followed by a cocktail of pills and i feel really good this morning, head still a bit fuzzy but ok.
Palomino, glad you managed to keep your hair, i decided against the cold cap, but im told it will start to grow back once i finish epi, so by xmas i might have a bit of baby down covering my head,
think i will put yakult on my shopping list and start on them today, I tried one of my usual squash drinks yesterday and it tasted disgusting, but luckily my earl grey tea still tasted ok, i didn’t expect to notice a taste change so soon.
Poppet hope you had a good night
take care all
Shirl
Hi like you Trojan i felt really ok until 9.30 last night and up util 2.00 the morning done nothing but be sick i have got up sipped some water with the pills and had a slice of dry toast but stomach still a bit sensitive just feel like i had agood night out and no one told me.
i also decide to leave cold cap but i was not told my hair would grow back until i finished all my treatment cmf as well.
I am so hungry but i am frightened at the momment to eat but i think i might try some soup as it better have on my stomach.
take care Poppet
Hi everyone just thought while i was not feeling sick or the acid burning my insides out i would say hi i hoping this is my turning point 5 days down very tired feel i am in a fog but no i know what to do and eat for the next time if it follows apattern hope you are all doing well
Hugs Poppet x
Hi Poppet
sorry not been on we had a problem with tinternet, I was sick again on Sat and then only a tiny bit on Sun, but i understand what you meant about not wanting to eat, i have found ginger biscuits seem to help me, and my OH phoned the triage on Mon am, and she prescribed me some extra meds for heartburn whih have been great, i have felt really good today, and ate weetabix for breakfast, ham butty for lunch, and chicken curry for tea,with fruit in between but still not been the loo, so think my next meds will be for this,
I got my wig yesterday and i had it on when the daughter came in from school and she didn’t even notice it was a wig, then i went to my sisters wearing it and she didnt notice but my neice did say i like your new haircut and streaks, then she screamed when i threw it at her.
Poppet did you come straight off the steroids or did you wean down to 2 on your last day, this is what they have had me do, so maybe tomorrow i will feel weak,
stay strong
Shirl
Hi Trojan
i have not been well enough to go for wig but think i will try at the end of the week. I had a recaction to the first sickness tablets they had given me, thats what give me the shakes and the burning gut but now i am on new ones feel fine, i had to just take my steriods for 2 days and not ween off them they all do diffrent stuff. I hope you keep feeling fine i have managed to have a crisp sandwich and a some porridge with water . But tonight had a few chips and some T which normally i can not do without
Take care keep taking the pills x
Poppet
Hi Poppet
soz you had a bad reaction to your pills, your diet sounds erm tasty, hope you will be able to eat a little more variety soon, Here i am at 00.59 and nowhere near tired, OH has just gone up he says he cant stay awake any longer, did all the cleaning at 3.30 am yesterday, cant do any decorating because the daughter is in bed, i think i will go up and enjoy a nice bubble bath and savour the quiet time,
sleep well if poss
Shirl
Hi Trojan
I slept quite well last night but i did sleep downstairs as i still quite sore after my second lot of surgery 2 weeks ago tablets on now i feel fine not bouncing with energy but able to potter on OH says it has not effected my voice box. Hes gone shopping he says hes fetching a witch hat with hair for me instead of a wig it is a good job i can take a joke.
Hope you enjoyed your bubble bath and quiet time every time i go to have alittle nap a phone rings are some one is at the door i know that they only care but quiet time would be nice.
Having a lovely T tonight chips and gravy with a smoothie lolly for afters.
Is it me are does someone move the keys on the key board because i have to retype everything in (thats my excuse)
Take care
Poppet
Hi
had a not bad day today, but felt tired, i tried being lazy but couldnt do it, i ended up going to sainsburys shopping, and i have made up some lasagne with a lovely salad with honey n mustard dressing, baked spuds are cooking and im starving, but OH and Emma went the rink at 5 and wont be homw till 8, dont know if i can wait till they get home, I have even opened a bottle of red,
Half term next week, dont know how i will kep emma occupied. OH said he will take 3 days off work, but i have Onc on Tue at 9am, bloods on wed, then Chemo Fri at 10am. she is being so good with this, but it stinks, its affecting her life.
Poppet i know what you mean about the phone ringing, I have started taking it for a lie down with me, ha ha,
enjoy your tea n smoothie, baileys and vanilla ice cream makes a lovely one and even better with a touch of tia maria,
Shirl
Hi
Felt much better today i am at the momment experience empty nest syndrome when i was first dx my son on the very day moved to London form chill Co durham
and the week before my daughter moved 3hours away but they wanted to prospone going but life has to go on as normal are we are going through all this for nothing.
Sorry may be i feel a bit weepy today looking forward to going out tomorrow.
So have decide since kids have left home i am going in the rooms with shovel and skip and get my teeth behind some good all decorating and buying new stuff retail therapy.
Poppet
Hi Poppet
retail therapy sounds good, i just love it, sorry you have empty nest but make the most of it, in a few years you could have a house full of grandchildren ha ha, and you know once you start sorting out the rooms it will take you ages, because each time you pick something up to throw away, you will get lovely reminders of years gone by,
im just watching loose women, i will miss this when i have to return to work, well i dont know what is making me so hungry but im going to put some chicken in the oven and enjoy a nice lunch all on my own, chicken n salad n crusty bread, yum yum, my taste buds havn’t deserted me yet, mouth feels a little coated but im having lots of mouthwashes,
enjoy your day
Shirl
Hi
I am like you i have got the munchys now i have my acid tablets enjoyed a fish and chip supper.Changing the subject but have you got spots in on your head a still have hair but starting to thin.I know what you mean about getting used to been in the house and not working, i feel like a proper couch potato i never watched as much telly, i am normal a get up and go love reading doing crafty things (never getting any finished) now i do the housework lie down after dinner on sofa pop the telly on snooze through the news wake up start the Tea and then after tea watch more telly its bad then all night wide wake.last night took mp3 player to bed OH complained as he could hear it and has to be up at 5.00 for work.
Have a nice weekend
Poppet