have you lost anymore hair yet from elsewhere? It’s really weird isn’t it?
I succumbed yesterday and had a no 4 cut. Apart from being a bit chilly I feel so much better! The long hairs all over my clothes, furniture, floor and car was sending me doolally! Not any more! I didn’t find it easy to do, but I would advise it to anyone!
FEC no 2 today.
Hi Sunshine Sal
I was the same kept my hair everywhere except my head. Too nervous to wet shave as usual so on advice from Lymphoedema clinic I bought an electric shaver. Used it last week what happens cut myself under my arm on my affected side. Can't believe it I have never cut myself in my armpit with s wet razor. But my legs feel really smooth I have to say much better than a wet shave, and boy did they need doing.
Morning all, I hope everyone is ok and coping with side effects / preparing for the next shot?
I had my port fitted on Wednesday. It was just local anaesthetic which was, for me, a bit stressful and sore. I'd take sedation if I did it again.
Second weekly taxol yesterday, so far it's very manageable. Fatigue is the worst part - hospital trip for bloods on Tuesday, chemo on Thursday. Last week's 11.30 appointment had me at hospital until about 4pm, yesterday was 9.30 until 3.30pm. My treatment time is max 2 hours including pre-meds and final flush. All future appointments will be PM to reduce the number of hours they can keep me!!
Forgot to say, I’m now like a hairy gorilla! I don’t want to shave in case I cut myself so I’m now praying it all falls out as the weather is lovely and I want to break out my cut offs! Maybe if I’m super careful I’ll get away with it! 🦍
Hi mamawhiz, good to have another chemo buddy! I’m doing round 2 of FEC on weds 3rd April.
Bookishgurl, hope tomorrow goes well. I saw the senior BCN yesterday she confirmed the first is the hardest because of all the emotions attached and the unknown. Don’t forget to note down your side effects, apparently it helps for next time. I’ll let you know!
Reallyzeb, I’m on a mission to sort my sore bottom before the next round! I have 8 days.
I’m doing the Look Good Feel Good session this morning. While I’m there I’m hoping to book up some reflexology.
Have a lovely day. X
Your diagnosis is pretty much the same as mine. I’m 44, Grade 3, oestrogen + Her 2 neg. Oncotype 35. We have the same treatment too. I start mine Wednesday
Must be really tough for you going through a divorice too .
i am finding the support and advice from the other ladies brilliant - keeps me going.
Hello and welcome mamawhizz,
I had a productive day yesterday and managed to be out of the house for 3 hours which is a vast improvement. I’m on track to be in work on Friday and next Monday doing the year end accounts, just before the next cycle starts.
My killer symptom right now is a very sore bottom but at least I no longer have constipation.
I hope you don't mind if I crash your group... I'm starting my chemo next Monday (1st April), so I've joined that one too, but really helpful to read about your experiences, and all the advice, given that you're very slightly ahead of me.
I live in New Malden, Surrey, and have two boys aged 10 and 13. I'm in the process of separating from my husband of 20 years. I was diagnosed mid-Feb with Grade 3 invasive, hormone receptive, HER2 negative 27mm tumour (on my letter it says T2N0M0). Had my surgery three weeks ago (lumpectomy) and there was no spread to margin or lymph nodes. Had an Oncotype DX test and got the result on Saturday by phone - 30, which is considered high risk of recurrence as I'm under 50 (46). I saw the oncologist today and she's put me on 4 cycles of EC followed by 4 cycles of Paclitaxel (I think what you're referring to as T), with the chemo happening every two weeks. She says it should be done by mid-August, allowing for the odd possible delay due to illness or side-effects. I've decided to start with a canula and move to a port if that becomes too tricky. I'm also going to give the cold cap a go.
I've read all your posts and have made a long list of things to buy!! I'm not sure about wigs yet - I'm kind of thinking I might just get a bandana. Am definitely going to get prune juice and Movicol - I hate constipation!!
I like the idea of joining your FB group and will message about that - thank you.
Good luck to all of you for your ongoing treatment. x
What chemo are you on reallyzeb? Hand and foot trouble is common on the Taxanes (Docetaxel and Paclitaxel). I'm using Udderly Smooth Moo Cream (udder cream) and Dr Organics Manuka Honey hand & foot cream which were recommended to me. Tell your medical team next time you're at hospital.
Good morning everybody!
Its beautiful here in Devon today, I feel quite energetic. I have cleaned my bedroom, sorted out a drawer of "crap" (so cathartic) and then cleaned the kitchen windows! Next ...
Alderney, thanks for that, I have found Faith in Nature Tea Tree shampoo. It is lovely! We will see how that fairs. I have gathered that my hair will come out at about day 16/17. Can't wait. I have my wig appointment on Thursday, so that will be timely!
RiversideDawn, just read your previous comment - day 17 seems about right.
I have been reading the October 2017 group thread. Many of them seem to have been on FEC so it has been really helpful. It has reassured me that what I have experienced so far is perfectly normal, not nice, but normal. The only trouble with the group, it has 215 pages!!!
Right, off for a walk now! That will be me done for the day probably!
Anyone else having burning in their palms and soles? It’s not intolerable but I’m going to try slapping a load of moisturiser on my feet and then putting socks on to keep it in place, hoping that helps.
Hi Sunshine Sal,
I haven't experienced it as yet however, in one of the other threads, there was mention of people having used "Defiant Beauty Dry Scalp Treatment" by Jennifer Young on dry, itchy scalps to good effect - you can get it on Amazon for £20 - if that's of any help to you, hope you find some relief from it.
Yeah - I've just become a proper member and the envelope has appeared so I've sent you a message Riversidedawn.
I've just tried to set up the group page but I need to include a friend before I can save it. If you want to join please send me a private message with your Facebook name and a bit of information to help me find you - profile picture, info about you which is public so I can check I've got the right person!
To send a private message click on the envelope in the top right hand corner of the screen.
Thank you x
Sally I remember getting tingly, itchy scalp around day 17 during my previous chemo (4 years ago), unfortunately that was just before it started falling out I'm afraid. If that's the case, there's not much you can do except wash and brush it very carefully (mine got really matted).
Have spots broken out anywhere else? I got a red spotty face and back on FEC.
Hope it goes away soon. X
Hi sunshine Sal
I'm from feb, it happened to me, roundabout the same time head follicles got very sore in patches and hair started to come out in hands fulls, i continued washing twice weekly and conditioning keeping checking and speak to chemo unit has they maybe able to provide creams, big hugs xx
That sounds horrible Sal. Are you using gentle shampoo no parabens etc? I read somewhere that someone said it feels like the hair works it’s way loose before it drops Maybe it could be that .
sorry I can’t be of more help
Ok question for you all...
I'm now 10 days post Chemo cycle 1. I have developed a very spotty and slightly itchy scalp. Has anyone else experienced this? Its driving me nuts! Any handy hints?
Yes, I'm up for the facebook group too I'll just have to work out how to pm you, riversidedawn, from the forum site. It'll probably be tomorrow though as I'm a little lacking in brain power currently!
Lyraloo - I went out to a matinee performance of "Made in Dagenham" this afternoon which was really good - I really wanted to go as it was a belated birthday present from last year and I did the same and sandwiched myself between two healthy friends! - really enjoyed it but am now in my pjs and just waiting for my injection to be out of the fridge long enough and then I'm off to bed!
Hope everyone is doing okay and as Lyraloo said hope we all get to enjoy some sun rays
Had a busy day yesterday. Managed a few hours at work in the morning and think I was quite productive. I only work 10 mins up the road for a small charity so it's very flexible. Did have a complete word blank moment on the phone which was odd but sounds like that isn't unusual.
I also managed to go out in the evening to see a comedian. We booked the tickets before I knew chemo was on the cards but the chemo nurses said if I felt ok to go for it so I did ( sandwiched myself between by hubby and friend who are both healthy). Just a bit worried that tomorrow is going to be a bit of a slump as I think the steroids are keeping me going at the moment and today is the last day of taking them but maybe I 'll feel a bit brighter tomorrow.
Glad to hear everyone has managed to get PICC lines in place.
I'm definitely up for the Facebook group so will try to work out how to private message you Riversidedawn.
Love to everyone - hope you're doing ok and enjoying the sun if it's out for you too xx
I think the FB group is a good idea too so I'll PM.
I have 2 before photos that actually show my hair, one before diagnosis and one after first surgery - when I was diagnosed I had it cut to shoulder length. No idea why it insists on me being sideways!
Dawn I think the fb group is a really good idea . I have Pmd you.
My picc is a little sore today but nothing bad. Probably where slept on it last night. Hopefully no port needed now. I quite like the idea of the port easier to shower etc but it is probably a lot more expensive. Hope yours goes well
Thought I'd reply to individual comments separately. It is difficult following comments on this thread. If anyone/everyone is on Facebook I could set up a closed group page there for us which would make it easier to follow each other and upload pics?
What do you think? Comment on here and if we're in agreement you can pm me with your Facebook names and I'll set it up and invite you to join.
Welcome Clazzamol. Glad you've got a PICC line that makes it so much easier. I'm getting a portacath next week as I'm on chemo indefinitely. If you're still have poop problems ask for laxido or Movicol, they work really well.
Bookishgurl - well done for persevering with PICC line, sounds really painful. I guess they've ruled out the port now?
Sally - are you on steroids?! I keep looking at my garden and would live to get out there and tidy it up. And my dogs want me to get walking again!!! Next week I shall join you in the great outdoors.
Reallyzeb - love the hair, have you got a before photo too? I'm wig shopping today. I gave shoulder length hair and don't know whether to get a short cut now and a short wig or a wig that looks like my hair...... I'll let you know later!
Alderney - sounds like you've been busy too with your walking and trip out to the shop. Hope you don't suffer for it.
Hugs to all, let me know what you think of the FB idea xx
Pleased to say that chemo went well on Thursday. Long delays as I expected but no adverse reactions to taxol. I was at the hospital for 5 hours! 1.5 hours in the waiting room, then lots of waiting in between canula, flush, pre meds, taxol, flush and bone strengthening injection (I have bone mets). Then realised we had to queue at the pharmacy for my anti sickness drugs.... hubby went but there was a 45 min wait so we left without them as I had some at home anyway. The nurse gave me another chance to cold cap but I declined as that would add another 2 hours+ to my hospital time.
I was tired on Thursday evening but steroids kept me up til midnight then over did it on Friday morning with a trip into town and cooking. Early night last night and feeling better this morning.
Off wig shopping today in anticipation of hair loss.
So pleased to hear things are improving for you I hope you are pleased with the results of your haircut, I think it looks nice.
Hi Sunshine Sal,
I'm the same. I had difficulties with word recall prior to BC - even though I'm only 42, my brain can only hold so much info which does not always fit with the busy pace of working life! - and it's only got worse with chemo brain! Glad you've had a good day and enjoyed being in the garden and have a good weekend. I've had a pretty good day too but overdone it slightly too (two walks, a trip to the Post Office and a skype call!), so am replying to everyone's messages individually so I don't get confused while waiting for my injection to be out of the fridge for long enough to inject and then go to bed
Just wanted to post because suddenly I feel okay and thought I would celebrate.
I’m planning walks from tomorrow but this week I wouldn’t have been safe doing that, plus I was stuck waiting for the nurse visits which were rather random.
I would like to reply specifically to people but doing this on the phone had made it difficult to keep track.
Today my hairdresser came round and cut all my long hair off. Here’s the result.
I have been going out for 30 minute walks, really helps clear the head space! I'm 9 days post chemo 1 and am feeling absolutely fine. My biggest issue is my brain! It is just not functioning at full capacity! I keep forgetting words and misunderstanding simple instructions! It's really quite amusing ... at the moment!
Spent an hour in the gardening weeding and moving plants around. I did overdo it, but it was good to be outside.
Hope you all feel better soon, you will, and have a good weekend!
Hope everyone is doing ok
Reallyzeb they say regular walks helps with the chemo and symptoms .
How is everyone else feeling?
What a difference a day makes!
my picc line is now in. Hospital called to arrange pre op for my port. Consultant had a look at my veins and asked if he could try picc again and it’s in .... 10 mins no pain LOADs of anaesthetic. I just have a dull ache now. It was loads more modern set up. So I’m back on track for chemo Wednesday .
Hope everyone is ok .
Reallyzeb, so sorry you have been feeling this bad. Have you been taking all your meds? FEC is hard, talk to them before your next dose - they may be able to give you something to counteract your side effects and/or reduce your meds.
I was given Difflam mouthwash when I had FEC, you can get it over the counter but free if you get a prescription, definitely recommend you ask for some. There's also a spray you can top up with. Ladies recommended frozen pineapple chunks when I went through it before - the enzymes in pineapple help the mouth.
Hopefully you'll start feeling much better as the days go on. It's work talking to your GP, BCN or macmillan nurse about counselling and antidepressants to lift you out of / keep you out of the dark place.
Wise words Danalesson. Follow the instructions and take all your meds whether you think you need them or not. Glad you're feeling better now, are you having treatment 3-weekly? Hopefully this week you'll feel much better before they hit you again! Xx
Bookishgurl, my biopsies hurt afterwards so I really don't think you should think of yourself as a wimp for finding that the PICC line hurt, it sounded really painful. I found my last day at work emotional too, so you had a heavy day yesterday, especially with the long wait at the chemo ward first. Hope you have a better day today, Alderney xx
Welcome too Clazzamol!
Reallyzeb - I've been taking a very slow and short walk each day, with a rest at a conveniently placed bench in the middle of the walk, and then having an hour's sleep afterwards! So it's been taking a lot of my energy but I think it's definitely worth it if you can manage it, just getting out of the house helps I think! I've got some pukka manuka honey, lemon and ginger teabags which are quite warming.
Josarah - I had my first of five injections of filgrastim last night and I think it caused me some disturbances too overnight, not pain as such, more an awareness of things going on in my body (mainly where the bone marrow would be I think) which kept waking me up.
Bookishgurl - I have a friend in America who had a prt fitted and she's found it really good and recommended it to me if I got offered it, however they donlt do them in my area, so I hope it works better for you than the PICC line.
Anyway, I don't think I've replied to everyone in this message so will write again later in the day after I've had a top-up on fluids and taken my meds!
Take care everyone and look after yourselves, Alderney xx
I feel slightly like things are improving today, which is day 8, and my big goal of the day is to maybe do a slow walk round the park.
I’m still getting waves of nausea, particularly when I wake up. Hoping soon my mouth is better so I can get back to the ginger drinks.
Hi slightly late to the party but having been a lurker I thought I should at least introduce myself!
diagnosed on 23 January and was told I would have a lumpectomy, sentinel node biopsy the radiotherapy.
had the op on 15th Feb and got the results on 28th feb. Lump was completely removed and sentinel node biopsy was clear. So yay! Lump was bigger than initially estimated but at least they got it all. However analysis of cancer showed triple negative grade 3 which meant I got the lovely news I was to undertake chemotherapy - the lovely FEC-T combo 👌🏻 Although I am clear This treatment was to cover any rogue bits that might have made a break for it - so just an extra line of defence
Had my new patient appointment on 18th March and a PICC line fitted due to shonky veins (took the anaesthetist 8 attempts to get a cannula in for the lumpectomy!). I have to say the PICC line fitting was horrendous. The nurses were lovely and very good at what they do but my veins were playing their usual game. They had to go deep to find a reasonable vein and in the process kept hitting nerves along the way. Ended up on oxygen and feeling very faint! On the plus side it’s done, and the future blood tests will be simple
my first round of FEC (have it every 3 weeks) was Tuesday and so far all I have really suffered from is tiredness, red wee and the lack of bowel movement 😳. I know it’s early days and I’m sure the universe is going to kick my backside for saying it! I’ve been taking the tablets as suggested and hope that I have escaped the worst of the nausea. Had my first injection today which I have to have for 7 days so let’s see what that will bring!
Sorry for the long post, I started and couldn’t stop! Blame the steroids 😂😂
That sounds horrid, but you shouldn't feel like a wimp, if it hurts, it hurts. We're all under so much stress right now that our resistance will be low.
When I originally discussed chemo with my oncologist he had said they were considering in general not using the F for people in my situation but the final decision hadn't yet been made, so I think I have the potential to get that part removed.
Tomorrow I'm having my hair cut really short ready for when it starts falling out.
Today has been an emotional day. Finished work then went to have my Picc line fitted.
Picc line fitting turned into a complete disaster. The whole experience today wasn’t great - the chemo ward was running over 2 hours late so waiting room felt like a grumpy cattle market.
The staff were great but my veins decided not to play ball. Every time she tried to push the tube in they constructed and it really hurt . Like electric shocks down to imy fingers. After 3 tries and me in tears ( I’m not normally like that ) it was decided that it isn’t going to work. I am now to have a port a cath inserted under my skin. I will have to wait a while so might not get my chemo started on Wednesday or this month.
i feel silly for crying now it was just so painful . I was told it’s not normally painful for anyone having it . I feel abit of a wimp. None of my biopsies hurt.
I too will be having 5 injections . Apparently this is the latest thing /new treatment to try and help with antibodies.
i asked my nurse also why quite a few of you are having FEC and T and I am just having EC and T and she said some oncologists believe that F isn’t of benefit for some cancers especially if the patient is also having taxol. So for those who have been talking about it. it may be worth asking your oncologist
Alderney - I did my injection at 2pm today and didn't wriggle as much as the cat. It was actually completely painless and easy to follow the instructions. I haven't had any side effects from it yet and I did take it out of the fridge half an hour before which maybe helped with it not hurting. I'm just doing the single injection of Neulasta so not sure if that's different from what you've got. Hope it goes as easily for you tonight.
Danalesson - I had exactly the same thought process as you - I've had a 5 day anti sickness med so shouldn't need top up yet but in the end it was starting to feel like a very bad hangover with the room starting to spin so I knocked back the top up tablet and went to bed. I guess the 5 day thing works properly for some but I've always had travel sickness etc so not surprising I needed a top up. I'll take it sooner next time I start to feel like that - it's hard though you feel like you're taking so many pills and potions and don't want to take any extras unless necessary.
Realizeb- I've been wondering about the F part as well only cos I'm not getting it so keep wondering what I'm missing out on. It is confusing - so many combinations used in different ways - it's so complicated but I'm sure the oncologists work out what they think will work best for each of us in our different situations. That does sound like a nasty side effect - I hope it starts to heal soon.
Hope everyone else is doing well xx
I’ve had a few days of hell too, so much so that at one point I was contemplating just lying outside and waiting to die. (I’m better than that now).
It started late on day 4 that the entire inside of my mouth started peeling and it’s only just got to tolerable levels again today. I was also so tired that I couldn’t even pick up my phone to answer texts.
I did ring the helpline but mine seemed so dismissive that that was what pushed me into a really dark place.
I’m on FEC but seriously considering refusing the F part again as I cannot cope with that side effect again, on top of all the other ones. Next week when I’m hopefully feeling a bit better I will do proper research into what real difference the F makes - this sort of research has previously been my job but I need a working brain to do it.
Ive been having my injections randomly during the day as I’m depending on the district nurse to do it - and once it’s been straight out of the fridge as she didn’t warn me of arrival time.
Hi danalesson, glad you have been in contact with the helpline and hope next round will be better for you once they adjust your dosage x
Welcome lyraloo - I'm self-injecting later today too! Thought I'd get it out of the fridge about 9pm and self-inject about 9:30pm as they advised doing it in the evening so you get the side-effects through the night x
riversidedawn - hope you feel okay after your paclitaxol treatment earlier and that it goes as well as it did last time for you x
lizandsarah - thanks for your best wishes and all the best for your surgery and further treatment when you come back for chemo x
I have been trying for days to post an update on how my first round went. Eventually I gave up and went back to bed. My brain couldn't cope. I know I have missed a number of posts - I hope everyone is ok.
My first EC was on Friday ..... ok. The 'E' part was fine. Exactly as you have all commented - red wee!! The 'C' part of my treatment is where I went downhill. Had the odd nasal pain, the headache, the metallic taste. It was intense and unpleasant. They had to keep me an extra hour to do another saline drip to help mute the symptoms. I was quite loopy as we climbed into the taxi. Been fighting awful nausea since Friday night. We should have called the line, but we didn't. And I should have taken my 'emergency' pill, but I didn't. I really thought when they give you anti-sickness on the day that is supposed to last 5 days that it would last.
Monday I regressed and was dry heaving. We called the line and they gave me something stronger which knocked me out for 12hrs straight. I have been taking that plus the other meds 30 mins before meals. Today is the first day where I feel like I won't be in the bathroom. I am feeling quite weak and tired. The team have already made a note to adjust everything and promise it will be better for next Friday.
Looking back we made such silly mistakes and didn't call to clarify (when one nurse said don't take the pills together she meant at the same time, but still could take them on the same day). We know better for next time.
Don't be a Dana ladies!
Hi ladies and welcome Lyraloo
Sounds like everyone is coping with their treatment so far, thank you for sharing your experiences it really helps everyone to prepare themselves for what's coming.
Well I'm sitting in the hospital waiting room. It's nearly 12 o'clock and my chemo was booked for 11 so it's going to be a long day as I expected. Straight onto weekly paclitaxol for me. I had it 4 years ago for primary BC so hoping it will go as well as it did then.
Hope you all have a good day xx
Hi. I'm a late joiner to the March group.
I was diagnosed mid Jan - 37mm IDC which turned out to be ER +ive, PR +ive, HER2 +ive. I've had the lump removed and lymph node sampling which turned out clear, then a second op to get clear margins.
Now on to 4 cycles of EC and then Herceptin for 12 months and at some stage hormone treatment will start.
I had my first EC yesterday which went ok. My cold capping experience was pretty much identical to how others have described on the thread. I did start to worry part way through that it wasn't cold enough but it's just you get used to it- I had a good few icicles when they took the cap off so it clearly was cold.!!! Had a bit of a wobble about 9:30 last night but took the anti nausea tablet and went to bed and that seemed to do the trick. Got to jab myself later today which will be an experience- I've managed to jab a diabetic cat before - at least I won't wriggle as much hopefully.
Hope you're all doing well - your posts really helped me prepare for my first one so thank you xxx
My chemo has been delayed for more surgery to be done, so I wanted to say I hope thing go well with your ongoing treatments
Yes, I've had people offering to make food too, it's so thoughtful of them
Bookishgurl: yes, as Sal said, the nurse sat with me too right the way through my FEC being administered; they generally use cannulas at my unit so they asked me to tell them if I experienced any discomfort at all and if so checked that the cannula was working correctly to prevent any leakage into the surrounding tissue. They took quite a lot of care to get a cold cap that fitted tightly (in the unit I attend they come in extra small, small, medium and large) otherwise it is not as effective. It has a plastic under-cap with a strap that goes under your chin and then a material outer cap with a nossle running down to the machine. I found having the headband meant it didn't dig into my head as much as it would have done otherwise. You should be fine to wear earphones. I put my glasses on too but they couldn't fit behind my ears because of the cap, they had to just kind of hang off my nose! They sprayed my hair with water and then put some condition on it before putting the chosen caps back on and turning the machine on. The cold water circulates around the cap and, just as others have said, it was really cold for the first 15 minutes; it then felt really heavy and then I just got used to it or it eased, I'm not sure which and it wasn't so bad. I had to have it on for 30 minutes prior to the administration of E and 90 minutes afterwards however they gave me FC first so I didn't have as long to wait so they might be able to give you your C before your E to speed it up a little for you.
The same as with Sal they also gave me steroids and anti-sickness, although as oral tablets, and a bag of saline and the pharmacist came and went through the anti-sickness and other tablets they gave me to take home while I was cold-capping and I've remembered to take them correctly so far! Self-injections begin tomorrow night Days 3-7!
Main side-effects so far have been the rose pink to pink wee from the E - same as with Sal I was already having pink wee when I went to the toilet on the way out of the unit. I had my chemo in the morning yesterday and felt okay until about 6pm last night when I started to feel nausea so I took the evening anti-sickness tablet however continued to feel nausea until about 9pm when I remembered about the additional prn/take as required anti-sickness medication they had given me and that did the trick, so definitely use it if required if you get given any, I could feel it burning/dissolving in my stomach after I'd swallowed it and then the nausea started to wear off and I was able to get a decent amount of sleep last night between trips to the bathroom due to all the extra fluid I'd been drinking! I had lunch fine yesterday, but didn't eat yesterday evening apart from some cheese crackers with the prn medication. However today I've not felt any nausea and have had smaller than usual but still regular meals and felt a good level of hunger. As Sal said, I've tried to drink plenty of water, to flush out the system, and have also been for a short walk both days to try and keep mobile/active. The crummy side-effects can be more in Days 3-6/7 I understand so I'll see how I find those.
Hope the description of the cold capping etc is of some help, even if they do things slightly different at your unit it'll give you some idea of what to expect.