Jennifer I was told not to take paracetemol if I was feeling lousy as it can mask a temperature, and thus an infection, which is the biggest risk during chemo.
Jo
Ladies may I make a suggestion please? As there are so many of us now and we are all at different stages of Chemo, do any of you think it may be a good idea to add to our own posts (when posting abouts side effects) a day and cycle heading so when others are looking to compare side effects or to know what to look out for we can see what day post chemo the post is about? Did that make any bloody sense at all? lol
For example my heading today would be… FEC-T 1st cycle day 3…
Anyone think that may help?
Kath I always make sure I take my last steroid before 2.
Alison Thanks for the input re the eating carbs.I love toast and chocolate spread too. Oh and toasted bacon, brie and grape sandwiches. Apparently 
I can stop eating them
Thanks Jo - was told that as well. Will just have to put up with it. Going to have some pineapple and fresh fruite to take away the awful taste in my mouth.
Jennifer
That sounds great idea Funkilala. I’m scanning all posts with interest to get an idea of what to expect come the 27th. So to be able to see at glance the timing of changes would be good. Reminds me of doing something similar when I was pregnant!
Jennifer - I have been told throughout that I can continue to take the maximum dose of paracetomol, which I do daily. GP also mentioned when I saw him yesterday that temperature may not be a reliable way of telling if we have an infection,(as our immunity is compromised) instead we should trust how we feel. As always with this difficult treatment, it seems to be a real question of conflicting instructions Louise
Thanks for the feedback Tuppence. X
Anyone else agree?
Funki , I agree great idea ! so many of us , I keep reading posts thinking how i’ll reply then by the time I get to the end I forget!!
Poems, sorry about your painful night sounds dreadful hope it’s a one off x
Angie I’ve got a pixie cut still but it’s rather flat & i daren’t wash it , my eyebrows are painful but I thought they would last a bit longer , I’m surprised how much hair I have , it’s falling out everywhere but still have no bald patches yet ! Your hairdresser sounds lovely !
& someone mentioned a dripping nose , that was my first SE ,no nasal hair to stop the drips , did mention previously a smear of Vaseline helps but don’t use an oxygen mask !
Have a lovely weekend everyone xx
Thanks Karen X So what day post chemo are you? X
Gill… same happened with me hun… had first Fec Tuesday and had to use my GTN spray… first time in ages… scary!!! lasted 3 days so I think it was once the drugs had settled down… but amazing triage nurses ringing to check on me … struggling to eat… and mega tired!!!.. cyber hugs to all the valentines…another day over xxxx
Funki - that is a great idea and would certainly be helpful. The drug regimen (FEC x 3 or TAX x 3 or TCH x 6 or whatever) would help enormously.
Sorry some of you are having an awful few days. Let’s hope everyone has a good weekend without nasty s/e’s.
Louise - The DVD shown to new chemo people at my hospital tells us to take our temps twice a day, and if it is 37.5 take it hourly. If it goes up to 38 or more, ring in immediately. This is in addition to any physical symptoms of Infection or more seriously, Neutropena, that you may have without a raise in temp.
I have seen on other threads on this forum that people are taking Ibuprofen/Neurofen medicines instead of Paracetamols. Not sure if these are allowable or not, but worth asking.
xxx Linda - still in the Waiting Room.
Ha Ha Funki !! Day 17 first FEC ( 3Fec & 3T , 15 rads & 5yr Tamoxifen ) side effects today are hangover , hair loss , sore eyebrows & tiredness …last 3 days very tired … sorry I forgot to put that on my post telling you what a great idea it was !!
Hi all Valentines : Chris 1st FEC today 5 to go followed by rads
Kath what a dreadful night for you,lets hope thats over and you be ok from now Hugs <3 xx
My day was 5.5 hrs in total at hosp,(they running 1 hr late)For those contemplating cold cap,was tolerable,like putting hand in bucket of ice til it aches but unable to take it out.Has to be on tight like horse riding hat for at least 30 mins before drugs,then carry on for 1.5 hrs then turn off,allow head temperature to come back up for 10 mins otherwise will pull frozen hair out.Hair was dampened first then conditioner put on.Felt cold through my body by end of it but hopeully worth it.They gave me a turban type cap to wear home on wet head.
Drugs went into line in forearm no problem.
Patient next to me said to paint nails,toes too,with black varnish as helps protect them,use base coat stop staining.Hers have stayed strong and she was on last chemo.
Came home with steroids for 2 days,tablet to take in morn and nausea prevention 5 days worth and an emergency sickness goes under lip in case of severe sickness.
Was all better than I thought,nurse said hair probably thin a bit,well we will see if cap worked for me or not in couple weeks.Was needing to lose weight but nurse said do not try lose weight on chemo,they want you to eat.
2nd dose due 8th March,Dr Ella did say she would see me after 1 wk,see how I got on with any se’s.
Thinking of you all with various ailments going on,so glad good results are coming in too,such a relief for you.
Feel really tired now,been long day Love and Hugs to the lovely Valentines,won’t be long and all will be in the race to the finish Love Chris xxx
Ok. FEC 1st cycle day 14. Still tired. Easily bored. Funny taste in mouth better but had a very hot Thai meal this evening so mouth is numb. No nausea for over a week. Sleeping ok. Shedding hair but like Karen no bald patches yet. I call my new hair my Les Miserables cut.
It’s supposed to be bright and sunny in the South East this weekend, there is a break from the 6 nations, so we are going to do some walking. And I will be eating a lot. Again.
Angie xx
Oh you ladies Rock!
That’s helped me big time seeing what days post Chemo you are and which cycle
Lol Karen I’m glad you get my SOH Thanks for the update
Thank you Angie. It’s nice to know what may be coming ahead.
Well done Chris! I hope you get minimal SE on your first cycle.
FEC-T 1st FEC day 3
Still spaced out on steroids, didnt eat as much as I did yesterday but still eating too many carbs, Hangover feeling and bad indigestion. Haven’t been to the loo today so will take Movicol tomorrow if no action.
Start Injections tomorrow for white blood cell boosting and finish steroids and 2 lots of the anti sickness tablets. Interested to see how I feel once I come off the steroids and what joys the injections will bring lol
Funki X
Hi everyone
What a great idea FUNKI posting our stats at the top as you say so many of us now sadly but how lovely to support each each other…
LAVENDERSUN TCH x 4 then herceptin to follow on for a year.
1st CHEMO YESTERDAY >>DAY 2
Well I was quite nervous but needent have been.
I had the cold cap and found it absolutly fine, in fact I kept asking if it was cold enough and fitted properly. Nurse assured me it was and hubby felt inside and said it was Icy it was swt at -5 but i was in a tshirt and really wasn’t bothered by it. I have 2 theries there 1. I’m a very warm person at all times thsts just me keep telling oh I,m a hottie but he doesn’t agree LOL !!! 2. Although I have now have short hait it is very thick so i imagine the cold didn’t get to my scalp. Oh well if it falls a lot I will persevere and it might preserve my hiner hair? Who knows. Just to say it was a doddle for me so everyones different though I do have a feeling I will llosse watch this space!
First had infusion of C drug which took about 20 mins all fine. Then put in drip for T part. The lovely nurse had to explain all the side effects I may get at that point during infusion. She scared the life out of me I was sitting there waiting for something to happen NOTHING DID HURray…In fact I started to get bored and was in the chair for around 4.4 hours.
Steroids have been fine don’t notice anything at all with them.
Came home from chemo (30 miles away in car which is pain) I felt better then going there the other day for my stressful assessments. We all had fish and chips for dinner YUM!!!
It is now 4am and can’t sleep but that is me normally anyway.
Anyoneone out there please don’t fear your first chemo …my nurss with lovely, though obviously run off their feet poor things.
Well now I feel like its a waiting game for side effects to emerge . Does anyone know whwn this is common I guess it’s different for everyon?
Oh, another question low immunity period what days have you been told? My nurse said days 5-10 but i though someone else had said diffrently.
XMASEVE was thinking of you glad it all went well with you too,
WEll ladies take care and hope you all have a good weekend, Sorry if I rambled a bit.
Hugs xxxxxxxx
Lavendersun
OH Another bit of probably TOO MUCH INFORMATION drank loads od water during chemo and came straight home to take lactulose and senekot and I have BEEN!!! I was really worried because a lot of you are mentionong constipation so was well perepared!!! LOL !!!
Hi all
Day 16 after first FEC (4 Fec + 4 Tax op followed by rads)
OMG I thought that some one had come in during the night and gave me a sneaky hair cut! hair really coming out today lots of grey little ones. I did shave my hair before I started chemo and I’m really glad I did.
SE not too bad,very tired and I am eating like made, creeping down the stairs at night and returning to bed with crisps,mars bar and a can of coke ! My feet are a bit swollen and last thing at night they become really hot but thats about it.
Have a good weekend all
Annabelle x
Morning lovely Valentines
Day 4 1st FEC cycle of 6-followed by rads…slept a bit better last night… woke up at 6am which seems to be the time by body gets me up!!..grrr… feeling ok at the moment… actually enjoying my cup of tea for the first time since Tuesday… touch wood no more heart palpitations happening… phew!..scary times…but fantastic traige nurses who call me daily to see how Im doing… need to try and eat a bit more… hopefully appetite returns today!!
Must admit Im struggling with the sudden attack of mega tiredeness which just hits me… my poor grandkids threw a blanket over me yesterday and left me to it …darlings xx hope today is a better day for us all xx
Funki I think that’s a great idea.
FEC-T - 1st FEC day 9
Have felt much better the past 2 days, energy levels have improved
and in general the “hangover” feeling has lifted enormously if not gone
completely, and the rank taste in my mouth has improved SO much. I mangaged a 3 mile walk on Thursday.
Hair still firmly attached.
Has anyone else noticed their baseline temp has increased since chemo? Mine
always used to sit around 36.7, since chemo it’s not been below 37 and usually
seems to sit at 37.3
Poemsgalore, hope your painful night was a one off.
Hope everyone’s having a good weekend with minimal side effects.
Jo
x
Morning valentines
Lavendersun I am glad your first session went so well, I was told that the danger days were 10_ 14 . Just wanted to clarify, sorry for being so stupid but do you count the day of chemo as day 1 or is it the first day after chemo.FUNKI I think its a great idea to mention our stats.
FEC x1 day 10 I think
Still very tired but improving everyday,Went to my first thai chi class yesterday on the recommendation of my lymphoedema nurse and ladies I really enjoyed it . It all about slow stretching and is great for breast surgery people
Hope SE are good to everyone today
Buddy xxx
(FEC 3/TAX3) Cycle 1/Day 11 Cold Cap
Dear Lavendarsun – I think the nadir days depend on which drugs you are on. For FEC it is 10-14, slightly earlier for TAX Don’t know when for your regime…
Has anyone else been having lurid nightmares? I have been having long involved ones that continue where they left off if I wake up and then go back to sleep. Last night I was having a particularly worrying one and kept making myself wake up, get up and move around to get rid of it. Then when I would manage to get back to sleep I was in it again. MOST unpleasant!!!
Seems to be my second day of feeling almost ok. New pill much better at controlling the nausea. So far no hair loss at all, although yesterday I was a little bit itchy, which probably is the beginning.
Louise xxx