Sorry to hear your sad news Bibi.Sending hugs.
I think the lung thing is there for all of us - I certainly get a little paranoid with any twinge.Our lungs are so close to our cancers and with me having some nodes involved there - it is a bit scary.
Bibi it is great that your nodes have responded to treatment and I hope the next cockail of drugs will make a difference to the other.
Day 4 - post Fec 3 for me today.Not feeling Sick but wobbly/sleepy - not venturing out yet.Getting the nice cardboard taste in my mouth as had before - good for cranberry juice and lemonade only.I think this is the lining of the mouth and gut coming off - goes with the tummy gripes😕
Thinking of you all over Easter- hopefully some getting positive distraction with family xxx🐣🐇🐣
Thanks for the love and hugs ladies - Jude I thought my post had disappeared as it didn’t come up for ages.
Feeling a bit brighter today , fresh air and a walk yesterday with family boosted my spirits - looks like being the only good day without rain this weekend so glad we got out. Yes a little bit of Easter egg also helped 🐣😜
enjoy rest of weekend everyone xxx
yes, love and hugs from me too.
i do think bereavements, tho never nice- hit us harder when on chemo.
try and have a few small treats, even a smither of Easter egg? They say chocolate does give us an emotional boost...I know we are all curing down on sweet things..but I find there are times when.......
Bibi - sorry didnt mean to ignore your post..it wasnt there when i posted mine this morning and now it is !
So sorry to hear about your brother in law - always so sad but i feel more so when you are experiencing problems yourself. Sounds like you have had a week of it too - hope you dont have to wait too long for a scan. Hope you get some reassurance at your oncology appt although a reduction in the lymph nodes is fab news. Enjoy the weekend with your family - take care xx
So glad you said that about the metoclopramide Macneech - exactly why i wasnt taking taking it regularly...its evil stuff ! I havent taken any ondansetron yet as feeling alot better - will leave until next cycle.
Did anyone watch The Full Monty with the girls ? I cried virtually the whole way through - didnt realise quite how much emotionally i had been holding in...very cathartic !
Enjoy the easter weekend - i intend to try some chocolate in the hope it doesnt taste revolting ! xx
Hi everyone- been quiet this week sorry.
Was experiencing some breathlessness last weekend so had extra appointment with oncologist to get checked out - he doesn’t think it’s anything to worry about but is arranging a chest scan to check there are no blood clots. It seems to be easing now - just got to try and not do too much walking . Juju it was me saying about feeling shaky and having to eat a lot - that seems to have passed as well now.
I have ondonsterone 3 times a day on days 2-4 of FEC cycle and then Domperidone to take as I want. Nausea wasn’t as bad on cycle 3 as cycle 2 but the tiredness was worse.
Macneech I also have loads of ondosterone lined up for next week before my first cycle of T plus pertuzumab and trastuzumab - 4 tablets twice a day for 3 days .
Feeling a bit deflated as had ultrasound today on breast to check progress and the tumour has not changed 😏 - the lymph nodes have all shrunk but not the tumour. Seeing oncologist on Tuesday to hopefully discuss results in more detail as doc today just said that . I was expecting it to have shrunk as it feels like it has - but at least it hasn’t grown and lymph nodes have shrunk.
Have also had a bereavement - my brother in law passed away yesterday, so all in all feeling a bit sad.
Have my girls coming home tonight and hoping some time with them will help raise my spirits.
Hope you all have a good Easter and stay well xxx
Morning ladies.Day 2 post Fec cycle 3.Had treatment mid morning yesterday by late afternoon feeling very nauseous and needed to go to bed - couldn't move in case I was sick.Flora I have Apripitant and Ondansetron before then have 3 days of Ondansetron and 2 days of Apripitant - stopped me being physically sick last cycle as was very sick with the first.Also have levomepromazine at night if I want it ( being a palliative care nurse I asked for the works). Have slept through the night (the Levo helps this). Not feeling Sick yet today - have had a rich tea biscuit,banana and cup of tea - not yet got out of bed yet though.
Not sure if the nausea yesterday was made worse by eating normally- so much conflicting advice 'e fasting before/after treatment🤔I have metoclopromide prescribed however I think this will only make my tummy gripes worse - the drug is desgned to push your gut along to relieve nausea caused by stasis(slowing down).Good to counteract the constipation caused by the Ondansetron!! So complicated.
Sorry your line has been painful Chrissy - maybe it has interfered with some nerves.I had nerve pains down my arm after my biopsies which took a while to settle down.We are sensitive morsels xx
Back on the hair note - still have my eyebrows and eye lashes.Anticipating losing these along with my toe nails and gaining a puffy face - already have high dose steroids ready to take for 1st dose of Docetaxol - next cycle !?!😕
Glad you been feeling good let’s hope it continues for you .
jude I hope the ondansterone helps you I had for 4-5 days.
weeburd- thank you for info re Hickman . I feel bruised and tender today paracetamol and ibuprofen are helping now. You made me laugh about support for the old girls! My old girls 1 is implant and slightly bigger and the other is tiny since losing weight so I don’t have that problem !! My husband said the implant one is like a supermodel when I lie down as it pert and doesn’t sag like my real one !!
Enjoy Easter everyone and the sun xxx hope it continues.
Just wanted to send you all some hugs. I've been quiet as since the first abraxane treatment I have felt really pretty well. I've had my latest one today, and only have one more treatment before radiotherapy. I'm only having 4 chemo cycles because I only need it so I can get the herceptin.
Jude, so sorry to hear you're feeling nauseous still. I don't think an 'occasional' metclopramide is the way to do it. I have been given instructions to have one tablet 3 times a day for 3 to 5 days after the chemo. So keep it regular, rather than random. I also have ondansetron on the day of treatment, and one on the day afterwards. I was told to phone and talk to them if I felt I needed more of those (I didn't last time). I feel a bit sicky immediately after treatment, but that's about it. I'm lucky.
MissGreen, I do hope you'll be OK with your mum gone home. I hope you have some friends you can call on if you need them. xx
Love and hugs to everyone else. xxx
Day 13 of 3rd cycle EC. Im still feeling quite shaky and a little nauseous so after speaking to hosp have advised i see GP to get Ondansetron and maybe get blood sugars checked. I was taking occasional metoclopramide which werent helping in the slightest. Just wondered how others get on with the ondansetron and how long you are having to take it for. Also i remember someone else saying they were feeling shaky and having to eat regularly - is that still a problem ? Ive put on half a stone in last couple of weeks so as much as i enjoy eating it cant go on !!
Sorry to hear you've been feeling low but as Macneech said we are amazing women and are entitled to give in to things. I have just dropped my Mum at the airport as she's going home after staying with me for 5 weeks. My big test comes now as to how my mood will be with no company and my Mum to take my mind of things. Weekends shld be okay as I will see my boyfriend and no doubt he will come over during the week after work at some point but it's not the same as having someone there 24/7. I am pretty sure I am not the only one who lives on their own.
Hope you are feeling a bit better now xxx
Morning ladies - day 20 2nd Fec for me.Been really good this week all but runny eyes,nose and not being able to run up the stairs! Trying to make the most of feeling normaslish! Bloods and onc appt today.3rd Fec Wednesday if bloods ok- wonder what 3rd round will throw at me! Like many have said I have had to do what my body will allow me to do and not take risks- stay home when wobbly and not cause a scene in public😕
Glad the lines are in now for you that needed them.My picc line has been amazing since day 1 ( l have become quite attached to it ( literally)- might even suggest they leave it in for when I have my surgery !
Fortunately if bloods ok my treatment shouldn't get delayed by Easter however if last cycle anything to go by I will not be socialising or eating any chocolate!
Chrissy/Flora - thinking of you re the low mood.We are amazing women fighting a horrible thing.We are allowed to give in sometimes-.sending big hugs xxx
Positive note - have ordered some nice sun loungers for the garden( hoping for better weather),Factor 50 on the head!!
oh it’s so lovely to hear you say about side effects as it makes me feel I’m not alone . The feelings of despair are so horrible aren’t they and have you noticed we all seem to be finding it harder as we encounter each cycle .
I felt so low last weekend I could have got in my car and just driven away . Obviously I wouldn’t have as children’s services would have been after me but it’s such a horrible way to feel. I have never experienced mental health issues before but feel I can empathise alittle more with people who do .
My oncologist told me Friday that when I finish the FEC and start the T that it’ll be harder and some people can’t hack the dosage but as I’m triple negative too which means after radio there is no other treatment I can have she told me to try and manage it. That’s a horrible thought but I suppose it’s best to be prepared.
With regards to being cancelled due to bank hols my hospital will now switch me to a Tuesday all being well that I’m not neutropenic again and it gets delayed . I’m surprised they don’t switch your day.
miss green it’s great you can do some work I agree it keeps you sane and helps financially. Unfortunately I am not allowed to work and hit half pay in June 😭
And finally oh yes girls I agree the saying ‘listen to your body’ - yes I’m fed up listening to the saying I feel like I’ve turned into a little old bald lady !!
Good of luck if anyone is having treatment and anyone going through the chemo coma just do what you like !,,
Hi all - hope you have had a good weekend.
Wee Burd and Chrissy - so pleased to hear things are moving once again !
Well i can honestly say that cycle 3 threw a massive curve ball...the side effects kicked in massively since having it last week. Headaches and nausea and an overwhelming feeling of despair.....absolutely hideous. I was all prepared having learnt from the first two cycles but this time was just so different. As you said Bibi you get told to listen to your body but if you dont know what your body is doing or what it wants its bloody impossible ! I've tried to keep positive but alot of the time just want to go and hide in a corner and sob. Ive got one more of this EC and cant wait to get shot of it ! And then of course its the lovely Paclitaxel which i have a feeling might be more challenging - roll on bloody summer when it will be all over with....
Hi. Everyone, I too should know better..the day after chemo I always feel great..so decided to turn stuff out...well what happens with me, is I end up in the middle of piles of stuff and then my energy runs out.totally overwhelmed by fatigue...today, I’m getting loads of side effects, eg sore eyes, headache nausea...sore fingers, cramps, taxol gives out endless gifts.which tend to come and go also...such an odd drug!
anyway, am sure there’s a moral in there somewhere...have a good day, ladies,
Wee Bird and Chrissy68. Glad you both got your lines in and your doing ok. Hopefully your treatment will be easier from now on.
Bibi. I did the pamper session last time. We had a good laugh and came away with some nice things. I'm not really a make up person but still enjoyed myself.
MissGreen. Your chemo cycle sounds hard. Hope your doing ok.
I seem to be having an easier time this time. First 2 sessions have been ok. Managed to carry on as normal with only a couple of days off work which I spent in bed. I was slightly more tired after the 2nd session but as I've got and extra week to wait for my 3rd session , cause it's Easter, I'm hoping my body will recover a bit more.
Is anyone else delayed with the Easter bank holidays? I was a bit fed up about the delay at first but it's worked out well as my dad is going in for a melanoma removed so I can drive him now. As they say, everything happens for a reason.
Hope everyone is doing ok. Good luck to everyone having treatment this week. Take care xx
Morning everyone, hope you are all well and enjoying the weekend.
I went to a make up pamper session on Friday - the Look good feel better one- run by Breast Friends - it was really nice and lovely free make up - but Miss Green I know what you mean by being hit by a wall of fatigue - I had to lie down and sleep for rest of day and was in bed by 8.30. I am finding that very frustrating but am just trying to plan short excursions that are not too tiring and keep busy at home with crafting activities, friends dropping in and supervising work in the garden.
I know it won’t last forever and I can cope, but when I tell people how frustrating it is and they tell me to listen to my body and it won’t last forever it doesn’t really help. Sometimes being positive is hard work.
Anyway have a good week - especially anyone having treatment this week , hope it goes well.
Loking forward to Easter with the family 🐤🐣🐥🍫
yes I’m having a Hickman inserted on 28th. I have had steroids for 3 days following FEC previously . On my first cycle my forearm did hurt but this 2nd cycle it was so inflamed that I can’t straighten it and it goes up to my upper arm. So I’m on flucloxicillin and ibprofen gel at the minute. But I’m glad they are fitting the line as the pain is too much in my veins that I felt I didn’t want any more.
Thankyou weeburd for explaining things,like you I’m relieved to be having it . Do you have to go to a health centre weekly to have it dressed and flushed ?
hope everyone is coping well with life
Yes Chrissie, if they can’t/won’t do a picc line, maybe they will look at the options of a drug reduction/change, there are other drugs they could use, but several chemos will do the same as epirubicin. Now I had it in 2001, it didn’t affect me that way, but they used to give us oral steroids we had to take for 2/3 days, do they do that with you?i mean that is an option if they decide to use it.
what you need to ask them clearly and to the point, is ‘how will you protect my arm/veins’ from this drug.
are you waiting for a central line, ddi you say? - if so then that will be really helpful as it will do a similar thing as a port of picc.
just keep making lists of things you want to know the answr to...take an advocate along with you.....not all general hospitals do put in pics. Some don’t do ports either...one problem is that you need specially trained nurses to use them once they are in situ and the training is high class....today’s chemo nurses need cutting edge top class skills to use these lines.
It it may be that the doctors don’t yet have the required training to put in a port. These are not simple...they need to be done by a very skilled doctor.
your last option, might be to either explore being referred to a hospital which would put in the port or picc...,then leaving your own hospital to make sure there are teams of nurses around who are trained to use it properly
love and hugs..Moijan💚🦋🦋
That’s brilliant news Wee Byrd - hope you stay well. I am full of admiration for anyone who can do anything the week after chemo as it has just wiped me out again this time. Feeling OK today - Day 8 - been out for a drive and wandered round a few garden centres and that’s me done ! Nap time 😴
stay well everyone xxx
Hi green damsel, my regime is three weeks on, one off..,,.and I have 6/8 cycles to go.
i have found each week a bit different..but my guess is, it’s cumulative.....I had a port put in during my week off, but still getting s/e from the week before. Some people don’t get many side affects at all. I get dry sore eyes, headache, nausea, basically that’s most of it. They give you drugs to deal with those, tho.
good luck, you will have less time on it than I.
kerp us updated on how it goes.
thanks for posting the link about the good, bad and ugly foods. Gutted pineapple is off the menu but there are plenty other options. Caffeine may be a challenge as it seems to be hidden in so many things. My morning espresso will have to change to something else 😩.
How have you found the paclitaxel so far and are you doing it weekly? I have reservations about 9 weeks of getting veins etc and just how reduced the side effects will be but onc is keen that’s the best approach rather than just taking the hit on a big 3 weekly dose.
On a positive note my wig ‘betty’ made her first appearance at work today and rather embarrassingly got lots of compliments from people who are unaware of what’s going on, my hair must have been really bad before if it’s such an improvement on the real thing.
Hi ladies, seems a lot of you are going to be joining me on Paclitaxel...just wanted to share this site...has really helpful lists of what we shouldn’tt eat on Taxol , eg some things worsen side effects.,... I hope it’s useful. For you just to have a wee look.
i have had turmericand want to restart, but it gave me reflux....so am investigating it.
talk to you soon.
Evening all ,Hi and Welcome Green Damsel and ElsieR,
seems round 2 of FEC surprised a few of us - I was really low after it upto about day 10 and wasn’t expecting it as first one had gone so well. On day 5 of round 3 now, not as bad as last time, have monitored my fluid intake more closely and this seems to have helped. Did have the most awful mouth taste for the last 2 days but seems to have shifted now thank goodness. I find lemon and ginger tea with a ginger biscuit a good way to start the day. The thing I’m experiencing is a shakiness if I don’t eat regularly- at least that’s what seems to lift it - but I’m having to make sure I eat a small snack every couple of hours or I get the shakiness and lightheadedness.
Trying to keep active but find I haven’t got much stamina - keep trying though - although been a bit cold to venture out last few days.
Hope you get your vein sorted Chrissy - sounds like you could do with a PICC line if it’s giving you that much jip.
Looking forward to a few warmer days and planning some things for the garden.
Take care all xxx
Hi ladies - burst of activity on here today !
Bibi - good to hear you are taking it easy. Hope you continue to feel well.
Chrissy - I had a real low with cycle 1 & 2 on day 6-7. Put it down the end of the steroids so gradually reducing them this time to see if it makes any difference. Hope the support day is of use. I get a very salty taste and just try stronger flavours ot mask it. Pineapple juice has been ok and sometimes lemon barley. Baby bel cheese and mini cheddars going down well today but it may well change tomorrow ! I would def push for a PICC line, - surely anything to avoid an admission to hospital with infection ! I would love to know what their reasons are for not doing it - you deserve a good explanation when its so common elewhere to get them. I had no issues with asking for a portacath so dont understand it.
GreenDamsel & Elsie R - welcome to the group. I too am on 4 cycles of EC - just had 3rd last friday, then due for weekly Pacltaxel. Have you had any surgery yet ? I had a mastectomy and axillary node clearance in dec.
Wee Burd - cant believe how long this is taking, fingers crossed you get the line sorted and get going again.
Macneech - i too do wonder if having the F part causes the worst side effects. I have read that some hospitals dont use it now because of this. I was unusually unwell for the first 24 hrs with awful nausea and headaches and if thats what you and others are going through each time you have my utmost sympathy...it was horrible.
Big hugs to those having treatment this week and those recoevering xx
amazing the the difference a couple of hours makes, more or less back to normal and hair issue has been resolved thanks to local wig shop making the adjustments, all good to go to work tomorrow.
Round 2 certainly taught me a lesson to be prepared and pace yourself, I did think round 1 was a bit too easy but I wasn’t complaining. I can cope with having a few days out of the cycle feeling knackered and just a bit rubbish if it does the job. I have another round of EC then it’s on to weekly paclitaxel so will see what that brings.
Fingers crossed your second round is not as bad as you are expecting, just be kind to yourself and rest when you need to.
Chrissey. I had vein pain when I had fec, they recommended keeping it warm and plenty of fluids, try a hot water bottle wrapped in a towel. It doesnt stop the pain totally but did seem to help.
The taste buds thing is a pain, I cant really taste anything at the moment, but find ginger beer, pepsi with ginger and dilute lemon all helps with the crappy feeling in the mouth. I dont normally drink a lot of fizzy drinks but anything to be able to taste something.
MissGreen, I I would check with the nurses if your PICC line is still bleeding, I was told it could happen for a day or 2 but after that it shouldnt, maybe your bandage is pulling on it slightly. Did you not get a prescription for a plastic cover when you got a picc line fitted? I had bought one but then got one on prescription. I was scared to use it at first but now I can hae a bath or a shower with no issues,
Wee Burd, sorry to hear you are having more delays with your picc line, i cant believe how long you are having to wait, fingers crossed you get sorted on Wednesday.
Ive been reading your posts about parking, you are lucky if you get help with parking fees or get them free, my hospital charges everyone as the car parks are run by a private firm. I always end up putting extra on to make sure I dont get a ticket, It costs £1 an hour to park and if you go over by 5 minutes they are there and giving you a ticket,
Hope everyone is doing OK. Keep well
Thinking of you chrissy68 - think it must be the F in the Fec that seems to floor us.I was really bad from day 5 to 11 this time ( 2nd round).Didn't venture out as knew from 1st round that I would end up flat on the floor somewhere. For me it is difficult to describe - clammy, sickly,tummy gripes,hot feet,cardboard mouth- just horrible. Your indigestion might be exacerbated by the steroids and Brufen ( if you are taking it).l think some of the gastric symptoms are from where the lining of the gut/ mouth comes away.l took Lansoprazole this time round to help this.Feeling low and tearful just comes with all of it I think - hang on in there.Sending big hugs xx
P.s - watered down cranberry juice did it for me despite having herbal/ ginger tea bags- l couldn't face these.Salty foods - twiglets/strong cheddar. Go with what your flattened taste buds tell you.xxx
sorry about your arm...what drug was it? You do need to let them know really about the pain, as some drugs can upset the veins. Why not call the chemo unit, or your nurse specialist?
so sorry, can well understand how you must be feeling....but do call them as they may need to change drugs or the concentration of that drug etc.xxx
love to you
Oh and Chissy, keep your arm warm and drink loads, try the tea mentioned by another lady, but do call themxx
Hi GreenDamsel, I started EC on March 1st so I'm in the March group but no one else is having EC, and I just spotted your post. Ive got round 2 this Thursday. Like you I managed round 1 ok, but I am dreading round 2, because now I feel well again, I realise that I did have side effects but I just ignored them and got on with life as normal. I dont want to feel unwell again and certainly not worse! My hair is also falling out over the keyboard as I type. I thought Id got away with it with the cold cap, but that was wishful thinking!
First visit to the forum, I started EC on 21st Feb and just had second lot last week. What a difference 3 weeks make, the first was a breeze, no obvious side effects other than being a bit hyper from steroids. This time I am completely floored, no sickness etc just dizzy and weak which I admit is a bit of a pain in the proverbial as I had foolishly made plans. Also hair is now thinning quickly and the monk style bald spot is not a good look in the office so working from home until the wig can be altered to fit (it’s now too big and pouffy).
Hope the next round isn’t worse, although I suppose I’ll be a bit more prepared for it. Hope everyone else is doing well.
Good luck Miss Green, don’t know about the pic line, but as it’s in a vein, maybe that’s expected...hopefully someone can reassure you,.xx
i now have my port in....have been getting quite a bit of discomfort, but it’s easing off nowxx