Yes I am in Sydney originally from UK though , so maybe they do things a bit different here my sister has had six rounds of Docetaxal in Uk , she said she took with her ice lollies to suck but didnt make any difference as she still had really metallic taste and awful nails too, I did use the mouthwash after eating after FEC and I think it helps with ulcers so must remember to keep that up
It certainly was a cold experience today but had heat packs and blankets so that helped
Hope you keep well too , its starting winter here soon but still quite warm 21 today but sydney people are wrapped up as if its 2 degrees !
Hi Aussiegonewrong, are you having your chemo in Sydney or the UK? I didn't get offered any ice gloves/sucking ice. It must have been very cold as like you I am doing cold cap but I have extremely sparse hair. Just the cold cap made me vomit last time after 10 min so I will dread it next time. The only up side is that it is shorter now. I also did not feel physically as nauseous on the day of treatment with docetaxel vs FEC.
Hoping you stay well. Xx
I had my first Doxcetasal today so it was quicker than the FEC and I was able to use my other arm as my veins are sore which they advised to rub in hirriod cream in three times a day, They put ice gloves on my hands and advised me to paint fingernails dark and I also has to suck ice the whole time it was going on so all in all was freezing as I also had the cold cap still despite practically no hair!, The nurses said keep going as hair will come back quicker so will let you know how that goes.
I still feel fine and went for a walk this afternoon but thats because I am still on steriods , they said watch out for rashes and bone aches from day three , i dont feel sick like I did on the FEC but its only day one
I also have been given the injection neurlasta to do tomorrow for boosting white cells
Good luck to everyone else this week
Hi everyone, I haven't posted on here in quite awhile but I have found your posts useful and I can see that we are all affected differently by the chemo. I had 3 rounds of FEC(and was well enough to continue working half days etc) and my first herceptin on 11th May followed by my 1st docetaxel on 12th May. I was fairly well for the first 3 days but then in the last week I have been completely knocked flat. I was hit with a really bad cold/viruses combined with lots of aches and really severe lethargy so I was continually taking paracetamol. Then I started to develop a bad red spotty rash around the base of my neck and over my collarbones that got worse and unbearable despite having piriton every 4 hours for 2 days. I felt quite unsupported about what to do about the rash as I was so weak by this point and the hospital wanted my GP to assess it on Friday evening. Luckily someone was able to visit and they advised 1% hydrocortisone cream, so I had my first 5 hours of uninterrupted sleep on Saturday night and again last night. I am beginning to feel human again as I felt driven to the edge with continually medicating myself and applying E45 lotion and my head completely blocked up. I had been given a week's course of filgrastim/accofil that started from day 3 and I suspect I hadan aallergic reaction to it as it was the only thing I was taking after day 3 as had stopped antiemetics and the rash was getting worse with every day. The paramedic and I read the drug info and skin rashes are a common effect. I made the decision not to give myself the last injection on Saturday and I immediately felt better. I know not everyone will have an allergic reaction to this product but there seemed very little knowledge on the acute oncology line about what to do. They just wanted me to keep monitoring my temperature which went up to 37.9 but then when I took paracetamol it came down.
The consultant told me that our immune system is knocked down earlier with the docetaxel from day3 vs the FEC. So just be extra careful to avoid exposure to colds leading up to your treatment. I am concerned what I am going to do with my next 2 cycles as I may not be able to have the filgrastim again due to the severity of the rash. I would be interested to know if anyone else has heard of this before.
Good luck to Aussiegonewrong, Meash67mosh and Cartwheels as I know you are having you first docetaxel soon. I know we are all individuals so we could cope with drugs completely differently.
Hi cartwheels, I had my third and last EC last Friday, start on the Docetaxal on the 2nd June, three rounds. I've been very fortunate on the EC, only really just severe fatigue, strangely though will miss it, the next lot I know will be a little harsher, I'm expecting aches and pains, as long as it only lasts a week or so and u get a break in between ill be happy. I've had a right mastectomy with immediate implant, pleased with that so far. Spoke to my nurse though last week, as I was getting a little worried, as was getting strange mild pain sensations on my left good breast and under arm, of course u panick and u start feeling for lumps, she was saying though it's probably just the hormones fighting the chemo and not too worry, but I still do, every little twinge in checking. I'll be glad when the chemo is all finished , July 14th my last one.😊xx
Hope you have the sunshine today, I'm just sitting in my kitchen with the sun on my back. Lovely.
I had third and last round of FEC 12 days ago - hooray! Luckily the physical side effects got no worse on the third one, but emotionally I hit rock bottom, felt very depressed for a week afterwards. Quite frightening to feel so depressed so quickly. But, now I feel great and am preparing myself for three rounds of docetaxel.
RuthElisabeth, it's good to hear your treatment is able to move forward, must have been awful being in limbo for so long. Great news about your lumpectomy, especially as it means you should be ok for your daughter's wedding 😊
Moonstruck, hope you're ok after your tough side effects.
Meash67mosh, I start docetaxel the day after you, on 30th May. We can compare notes! I'm a bit apprehensive, but hopefully it'll be kinder to our veins than the FEC. The vein on my left wrist and lower arm is like a solid, raised cord.
Hellesbelles, thanks for the information on side effects of docetaxel. I'm most concerned about the pain, so really good to know it was manageable for you.
Eliza, how have your got on with docetaxel?
It's so inspiring to hear about the fundraising that people are doing. I've been asked, as someone with breast cancer, to talk at a fundraising event for The Haven about the difference that the charity makes to women with breast cancer. I feel so honoured and it's given me a real boost as I go through the hell that is chemo. Just hope I'm not bald by the time I do the speech (although they might raise more money if I am!).
Hi friends. I haven't been on a for a while as I have been waiting for an anaesthetist report to see whether I can go straight to surgery following my health complications on the chemo. I finally got to see my surgeon on Friday (things were held up following the cyber attacks) and he has agreed to go ahead with a lumpectomy. This should be relatively quick and so will be done on the day case ward. He would have liked to transfer some tissue from under my arm at the same time to make it cosmetically better but this would prolong the op and he wasn't prepared to do that because of the mini strokes I have had, so I guess I will be pretty lopsided! I will have to wait and see! The op is booked for 8th June and so not long to wait. I am glad another plan is in place as my last lot of chemo was on 11th April so I was worried this is starting to wear off. I will be glad to be rid of the lump and then move to radiotherapy- hopefully this will mean I am relatively ok to enjoy my daughter's wedding on 29th July. It is giving me something other than the cancer to focus on which is good. Well done to all those raising money - I know we all benefit from the support these groups give so good on you! Best wishes to all of you as you continue this chemo journey. - it's a tough one but each one is a step nearer the end. Keep going! X
well done on the walk and the fund raising , thats excellent,
I did one last year with my sister when I was in england she too has breast cancer although different type to me , we did one in Loughborough but I am from Lutterworth and my family mum and sister live in Narborough
it is wonderful to see everyone supporting friends and familes and reading all their stories pinned to their chests!
I am hoping I can get backto the UK later in the summer once i have had my surgery which I am still pondering on , as I think BS says I can have a lumpectomy but I am thinking about bilateral mastectomy even though I know its big step maybe it saves going through this again , I dont know the stats but am seeking a second opinion to ask
When I was first diagnosed I just wanted the cancer out straight away but as I was advised to do neoadjuvant chemo I guess one advantage is having time to research a bit more what option there are
I have my first Doxcetasal tommorow so on the steriods today yuck!
good luck everyone with next round
I would just like to share, we have just got back from Pink Ribbon Walk for Breast Cancer Care. All my family walked, it was fantastic there was a lot of people turned out of all ages. My wonderful family have raised £1,300 for Breast Cancer and I am so proud of them all. The Breast Cancer Care look after them so well, they get food supplies and water as they go around. They did the ten miles this year, we have all decided that we will all do the twenty miles next year, including me!! 👍😀👍.
thank you Moonstruck.
Sorry to hear that you've not been feeling great - I think it's getting to all of all us now the further we go through our treatment. Hope things go well with Docetaxol - my first one was not good, but I would say take lots of fluids - I got dehydrated, so it made things worse.
Well done to your family for raising so much money! - it's amazing how much fund raising goes on for breast cancer - it seems to affect so many people, and so much research has been done into it.
Hope everyone is doing okay and has a good weekend - despite the rain that seems to be covering the country!
I haven't been on for w while sorry, 3rd Fec went better than 2nd but felt terrible for last ten days. I think I am feeling better now. My veins are hard to but everyone keeps telling me it's the red stuff in Fec that does it. When you start doc it is better. I have 3 doc to go now, I start on 29th may. I don't no what to expect but it is what it is, I am praying it's no worse than Fec, I suppose we are all different ladies. We seem to be close with our dates of when we started this terrible journey, I must say we are all doing very well considering it's such a terrible journey to be on. Keep it up ladies you are truly wonderful.
My my family are doing the pink ribbon walk tomorrow in aid for breast cancer, between my two sons and husband they have raised over £1000 for breast cancer.
By the way ausiegonewrong I live in Leicester to, whereabouts did you live.
take care all xx
I havent posted for a couple of weeks as I did feel rough after my third fec ,, mostly nauseas and horrible taste in everything even water tasted odd so have been adding apple and ginger juice to water.
starting to feel fine now in third week . I still used the cold cap as nurse said kept going but still lost more hair so all I have now are a few strands which as I only bought a hair topper which clips on its a bit of a struggle as nothing really to clip on to so may have to get another wig which is a shame
I have appt to see Onc Friday before I start the three Doxcetasal , I am from Leicester originally but now living in sydney but we seem to be all having similar treatments
Good evening everyone,
I'm sorry to hear that some of you are having a hard time with your chemo. It's such an ordeal, isn't it? Stay strong everyone - we are bloomin' fantastic and can get through this!
Bluelily - we've done 10 rounds now! How are your veins doing? I am going to try to take it easy for the next couple of days. Physically I'm not any worse than usual, but emotionally I'm quite low. Not sure why as I thought I would perk up as I got nearer the end of the chemo. I have my first counselling appointment next week. I'm not quite sure what to expect, but others have told me it can be helpful.
Love to all,
Good luck with your last treatment - must be a great feeling to know that it's nearly over - looking forward to that.
I am feeling a lot better than I was - although still pretty groggy at times - my brain seems to stop completely sometimes and I don't know what day it is and have forgotten what I did yesterday etc - definately chemo brain time. I have been out a couple of times for some fresh air now - had a good walk yesterday, although still a bit dizzy. Not fit for driving yet, and still tired - but at least I can move around the house and do little bits and pieces for myself - don't feel like an invalid. It feels like it has been a long week and a half and I'm still very teary at times when I'm tired. I know what to expect now and I think that is part of the battle - preparing yourself mentally and physically - and everyone react slightly differently. My face has the bright red slapped look (very attractive), and it can be quite stingy at night - difficult to cool down - hopefully that will ease off soon.
Hope everyone else is doing okay - keep hanging on in there!!
EC done, Docetaxol starts tomorrow. Just taken the first lot of steroids and off to see consultant today & to have bloods etc. Done a bit of prep by getting Udderly Smooth cream for feet, Evonail, and a microwaveable wheat pack for aches and pains. Done a ton of laundry in case I'm out of action for a bit. It's crazy but there is always a bit of a tense build up to each treatment. I believe in preparing for the worst whilst hoping for the best. By the way Leyla, I found EC manageable, I had no nausea (Emend anti sickness is excellent) and ate as well as possible (very plain foods first five days) plus plenty of water.
Hellesbelles - good luck today with your last treatment. Let's hope the relief of it being your last one means you can tolerate any side effects more easily. Then you can focus on radiotherapy & getting your roots sorted! Do stay in touch.....
Moonstruck - sorry to hear that Docetaxol No 1 was miserable for you. It seems to be the consensus that the first is the worst so let's hope this is the case and the next are easier. Let us know how you are getting on.
Hi Meash, thanks for your post, I will feed back any tips on D as I know your first is in 29/05. Meanwhile enjoy the good weeks of FEC!
Love to all
I haven't started Docetaxel yet (just finished my third FEC) so have no words of advice, but wanted to send you a virtual hug. I'm feeling pretty crap at the moment with fatigue, nausea, hair loss etc, and can relate to that feeling of "I don't know if I can do this anymore". It's just wretched feeling like this. But we're all here and doing it. You're right about the fresh air, most days I manage half an hour sitting in the garden and it definitely helps.
Hope everyone else is getting on through. One day at a time....
Hi Everyone - hope you are all well.
I've not had a great week or so - had my first Docetaxel last Friday and still not fee!ling great. It rea!ly knocked me for six after the first 2 days - could hardly move from my bed or lift my head. Unfortunately I wasn't taking enough fluids so that didn't help either.. Ended up going into hospital to be assessed and they think I was fighting off an infection too. Feeling a bit better now but still pretty crap - so tired, and every day there seems to be something else. Feeling pretty low -although I have gotten some fresh air yesterday and today which helps. Don't know how I'm going to do this 2 more to times. Any words of wisdom welcome.
How are you and all the other ladies here doing? Well, I hope!
I had a picc line put in on Monday. It wasn't easy as my veins collapse as soon as a needle is put in. They have definitely had enough! The line went in on the third attempt though, and I had my first picc line chemo yesterday. It was much quicker and easier, and I am so glad I had the line put in.
I have the usual side effects this morning, after a sleepless dexamethasone night - bright pink face, vile taste in mouth, achy knees, sore mouth. Grrrrrrr!
Love to all,
Thanks for your kind thoughts. Had third and final FEC yesterday and it was much better thanks you, god yes it was so frightening for me and my lovely family. I made sure I had lunch before I went and got straight into bed when I came home. I also had a much better time with vein this time it went in on first attempt, not fourth.
you are doing very well with your energy levels and exercise. I like you are getting concerned about the Docetaxol, but even though it's unknown territory a lot of people have said that the side effects are pretty much the same. I think the nausea lasts a bit longer with aches and pains.
please come back on and let me know how you get on I think we go within a couple of days of one another, I go on Monday 29th. Think you must be a week ahead. Look after yourself and take care xxx
Coming to the end of week 2 of EC number 3 and feeling ok. Energy levels are better. Went out for a 20 mins quick walk yesterday and got hot and bothered in the sun. I did cover up but think I'll do mornings in future. How is everyone else getting on exercise wise? Docetaxol starts next week so I have an Echo appt tomorrow to check heart. I feel more worried about Docetaxol as it's a new drug so means brand new side effects. Have an appointment with consultant next week on whether to go full dose x 3 or lower dose x 4. My bloods have been fine so far, I suppose it depends on that. Got a bit of an itchy rash on face (as if I don't already look bad enough) anyone else have any skin issues?
ArgyMargy - you're right about the madness of the LGFB being 3 weekly, I did mention to them that this seemed crazy as it excludes a whole group of ladies that have chemo just before. Grrr. You're workshop sounds v good. There is a Saturday workshop in Bristol this weekend, a 'Living Well Event' about nutrition, finance, work, emotional wellbeing so am planning on going to that.
Moonstruck - hope Monday went ok - would be glad to hear how you got on with Docetaxol.
Meash - sorry to hear about the passing out episode, that must have been scary. Fingers crossed No 3 on Monday caused no repeat of that.
Helllesbelles - hope you're cold is banished!
Have a good week as possible everyone.
Love Eliza x
Meash67mosh I went to a little makeup workshop yesterday run by a local breast cancer support group affiliated to the NHS trust. It was a short thing but good, basically how to put on a decent bit of makeup when you have little time, control or patience! There were only 8 of us and we were given a set of really good organic products which we had practised with during the workshop. Might be worth checking out if anything like that is run through your local groups.
Just to let you know I am thinking of you and hoping you aren't suffering too much this week from your chemo.
Bluelily - I am having a picc line inserted next week as my veins just aren't good enough now. Also, I am getting quite anxious every time I have to have bloods taken or a cannula inserted.
I will be taking Tamoxifen in the future, but radiotherapy hasn't been discussed with me so it isn't part of my treatment plan - at the moment.
I am not doing too badly this week. Just the usual tiredness, aching, nausea, mouth ulcers, etc! I have had my hair clippered off, which has been quite empowering. I just wanted to take control of something, and I feel so much better for doing it. I also chose my free wig this week. It needs a bit of tidying up, but it's much better than I was expecting.
I am going to Look Good Feel Better next week, which I am really looking forward to.
Love to all,
Good Morning Ladies
I haven't be on for a while, I had to stay in hospital after my last Fec due to very low blood pressure. I got home from having chemo, about an hour later passed out. Unfortunately, my husband couldn't bring me round and call the ambulance.
I am am due to go back on Monday to have my 3rd Fec, I must admit I am apprehensive about it but also want it to be out the way. I should be half way then!!!
I am am sorry to hear some ladies are having a rough time of it. Is anyone else finding the further you get into it the more tired your body is feeling. After the first round I think we notice the obvious line hair loss instantly and nausea. Now I think the whole body is tired. You are all doing so well.
Has as anyone been to any classes other than the look good feel good. I didn't know if there were any other classes up and down the country.
Stay at strong all and keep the good work up xx
Hellesbelles - totally agree. For me it was 29th December. No-one can really understand unless it's happened to them, I guess that's why this forum helps so much.
Eliza76 - I can't believe LGFB do the workshops every 3 weeks! Given that loads of women seem to be on the 3-weekly chemo cycle, that just seems barking mad. I'm going to a workshop tomorrow afternoon. I need distractions at this point!
Thanks for the good wishes - this forum is so good for 'offloading' and I really appreciate the support. I will let you know what they decide. I am going to chase tomorrow as I will feel happier once I have a clear plan of action again. It's the not knowing and waiting that I find difficult. Best wishes to everyone - we will get through this! Someone gave me a postcard at the weekend with the words "I can. I will. Watch me" I have put it on the fridge to remind me each day that I will get through this - we all will xx
Just saw your post and wanted to send positive thoughts your way.....
Hoping you can start your surgery/radiotherapy soon and put all your focus on that and getting a positive outcome. Let us know how you get on xx Eliza
Nice to hear your updates....
Hellesbelles - I am emerging from FEC 3, found it a bit harder this time, I am actually quite low with the lack of 'real' life. I am lucky enough to be able to take a long break from work. My job needs a lot of brain power & I have little of that at the moment, but I do miss work a lot. Also living with a mild state of health anxiety is pretty knackeriing! Every time I turn around something new happens & you can't just ignore minor health things as you normally would. Hope your cold fizzles out soon BTW & that life in Longleat is side effect free.....
I have definitely let myself go in the looks dept. around the house. It is now lounging around clothes and a loose cap kind of draped around my head like a court jester or an 18th century fool in stocks (don't throw tomatoes please). I need to shake myself up a bit. I was due to go to the Look Good Feel Better in Bristol yesterday but was not well enough - just when I could have done with it sadly. They are every 3 weeks so will always fall just after my treatments. Looking forward to the weekend when I emerge from the fog and tiredness & can get out and about more.
Moonstruck - down here in the South West my garden is rampaging ahead without me. Have planted a few bits and pieces but it's hard without the energy & with chemo as you say dominating somewhat - does make you angry and cheesed off. I'm trying to focus on small things to lift my sspirits like crap telly, Harry Potter on Audible at night ......yes I know but it helps me sleep a bit. Every time I nip to the loo at night, I see my bald self in the mirror and stare, its a shock, not sure I'll ever get used to it....
Off now to have a nice blandish dinner 😇 would love a nice glass of wine
Love to all,
Hi Moonstruck - I know just how you feel. It could be worse, you could be having 8 cycles like me adding 6 weeks to this long long journey. Lots of things annoy me too, particularly people telling me to rest.
Hellesbelles - Herceptin is often given to women with HER2 positive cancer but not to those with HER2 negative cancer.
Just read your post. I'm sure that the Doctors are doing what is best for you - everyone is different and it sounds like chemo is having detrimental effects on you. You will still have your annual checkups to keep an eye on you once you have had surgery - hope it all goes well xx
Thanks for the supportive comments. I had my Oncologist appointment on Monday to go over my current SEs and also find out about docetaxemol which I start on Friday - wasn't the cheeriest appointment and I was still feeling a bit low. The Dr was very positive - as they usually are - which I find annoying at times - but then a lot of things annoy me the moment.
I've been at work for a few hours yesterday and today which was good - but tiring. It's good to see people and being able to catch up with folk - but makes me very aware of how time has passed and how much I have missed - my life at the moment seems to be going in slow motion with it revolving around my chemo - very frustrating!, and not a lot of fun.
Today the sun is shining, and tomorrow hopefully I'll get a chance to get some fresh air - Spring is definitely due, and my garden is calling for my attention - that's what I need.
I will stop now before I get into full rant mode, and focus on looking forward - things will get better!!
Hope everyone is doing ok.
Hi again. Just had a call from my oncologist and she has called the chemo off altogether as she said for me the risk would outway the benefits. I don't know whether to be pleased or not! I'm pleased that I will not have to endure more side effects from the chemo but also want the best possible outcome for the breast cancer so was quite prepared to put up with it if it meant that the cancer was well and truly clobbered. I have to have an assessment to see whether they can bring the surgery forward now and might just have that and radiotherapy without the chemo. I just hope and pray that whatever treatment they decide on the cancer will be gone and won't come back!
For all of you putting up with feeling rubbish because of the chemo hang on in there and hopefully you will all have the best possible outcomes.
I felt that the combination of chemo, op and radiotherapy would have well and truly got rid of the cancer so I am just hoping that without the chemo that will still be true x
i am day 3 following EC 3 and feeling not so good. Just wiped out, not enough sleep, running eyes and red hot arms, neck and face again, feels like flu but no temperature. Plus a chesty feeling that is probably heartburn but I worry it's a heart thing. All this goes through your mind during rough spells. My first 4/5 days are always the worst, then it's loads better.
Moonstruck - sorry to hear you're not so great with treatment 3. I think it's common as it's cumulative & gets tougher. Like you I want to feel an improvement during the 3 weeks but it is up and down so you can't plan or know how you'll feel which is miserable & feels out of control. Side effects, even the minor ones can wear you down. It's hard for family as they don't really understand how it feels and how to help, so having a whinge on here is ok because we are all going through this crap together. I'm a bit anxious about the Docetaxol too as it sounds more challenging, but my BC nurses say reactons vary a lot so who knows.....it may be ok 🙂
RuthElizabeth - hope you're feeling better following the mini strokes & that you can get on with treatment without delay (op or chemo)
Hellesbelles - lovely to see you posting & sounding more 'up' - I know you had your TC treatment 3 a day before me so hope all is going ok.
Welcome to all the other march starters too.
Love red faced boiling hot Eliza 🍅
Hi everyone - hope you are all doing ok. I'm in week 3 after my third FEC chemo and have had a very up and down week - I'm fed up with feeling rubbish most of the time, with a bit of time feeling ok and thinking that things are calming down, and then back to feeling crap again. I've got swollen ankles, horrible mouth ulcers, headaches to name but a few - usually by week 3 I feel more or less normal. I'm seeing my oncologist on Monday and start 3 treatments of docetaxemol on Friday - and not looking forward to it. People say - only 3 more treatments - you are nearly there - but at the moment the finish line still seems a long way away! I know I am feeling a bit down and that it's a phase that I will get through - but I hate feeling like this, and feel bad constantly complaining to my family who don't know what to do. Anyway, just wanted to have a rant to folk who are going through this too and looking forward tomthentime when this is all a distant memory.
I don't have great veins either and have had a bit of phlebitis in my arms following both lots of chemo. My top tip would be to drink lots of water the day before and just before your chemo. This really helped me last time. Also the nurses used wheat bags to warm the veins on the back of my hand and to stop the veins hurting up my arm when the drugs are injected. The nurse also said to make sure the do a slightly longer flush after the chemo to clear the veins. Hope this helps and all the best for your treatment x