I hope you are all keeping well as much as you possibly can.
It is day 11 first round of post-EC for me. Day 1-6 was a blur with sickness and fatigue. I started to feel better from day 8. Still suffering from tiredness, sore mouth & throat, headache, and occasional sickness. I had my anti-sickness meds changed after I finished the steroids. Metoclopramide wasn't sufficient. Instead, I was prescribed Cyclizine Hydrochloride which works well. Paracetamol, Gaviscon & soda water are my best friends atm😆
I'm trying to go for a short walk every day, which some days is a giant effort but it is helping me. Someone mentioned in this forum that feeling like 100 years old. That is how I felt last week😂
After reading other people's cold cap experiences, I wasn't going to have one. However, when I arrived at the hospital, the onco nurse and this lovely care assistant had persuaded me to try it for the first time. I did use it and it was ok. I probably will use it again until all my hair falls off, which I already had it cut short. My second cycle of EC is 11th Aug.
@Jennet I'm still doing my own food shopping and the visitors all take lateral flow tests before they visit us. Not sure about eating out yet.
@veggiecaz I hope you will feel better soon. You will start seeing the improvement soon. How many cycles of chemo will you be having? Are you having pre or post-surgery chemo?
I hope it will get easier and manageable as we all progress with our sessions.
ive been writing on another July chemo starter chat (didn’t realise there are 2) sounds like we have very similar diagnoses.
how have you found your first EC?
Hope you’re feeling ok.
Big love to everyone on here ❤️
Hi @Em77 I think this is pretty much all we can do. Be careful, encourage other people to be careful too - but life goes on.
It’s such a tough one. I must admit I don’t go out as much as I used to, but when I do I am extra careful. I have a 13 year old daughter and can’t keep her home all the time. She takes a lateral flow test twice a week and knows to check with her friends they don’t have colds etc before seeing them. If I have a friend coming over to see me they take a lateral flow test before coming without me even asking them to (I would never have thought of asking them to)
Hi @Em77 how are you doing?
i wondered what everyone is doing in terms of going out, shopping and eating and the like.
i received an official letter telling me I’m clinically extremely vulnerable- jolly good but no real advice about what to do. In a meeting this morning a colleague said he’s not going anywhere because his wife is CEV and he doesn’t want to put her at risk - well my other half has been doing the shopping, and sometimes I go with him to get out of the house but mostly I’ve been going on walks where there aren’t many people. Should he be doing a lateral flow test when he comes back home?
i want to see my granddaughters who are 3, and probably little vectors of infection.
Their mum (my daughter) is worried about exposing me to bugs - how are other people managing all this?
I’m sorry to hear your first treatment didn’t do so well, but it will have been noted down by the nurses. And keeping yourself warmed up should help.
This tiredness isn’t that great, is it? I have been having lots of rest and naps during the day, but have a need to walk around a little bit to stop aching. Small improvements each day. Your flushed face sounds weird, maybe you should contact the nursing team, it might be a slight allergic reaction.
Glad to hear you don’t have to do the injections. They are not bad, but have caused aching, which is manageable with regular ordinary painkillers.
I certainly don’t want this to get any worse and not looking forward to the next round, on 6th August, but at least now have some inkling of what to expect. I have a phone assessment with my oncologist of the 4th August in the morning, then bloods and portacath flush in the afternoon.
Hope you start to feel that little bit better each day,
Hi @Em77 , thank you for your reply!
The PICC line hadn’t really been suggested, I assume probably because my treatment is very minimal compared to most- just 4 x TC over 12 weeks. Just the thought of it makes me feel a bit queasy too but I might talk to my nurse about it.
I hope you are doing ok!!
Hi @DAB72 I’m sorry you had a bad experience, regarding your veins have they suggested a PICC? I was told to have one (I hate things like this) but it is a g-d send. Treatment is so much easier and bloods can be taken from it.
I am having EC once every 2 weeks, my second cycle has been less side effects (so far) and I am into day 3 since chemo as well. I’m also very hot but it’s very humid lately even with the storms.
hope you get a better sleep tonight X
thank you for your reply last week!
I hope you are well and have continued to make progress to feeling normal again!
My first treatment on Friday didn’t start well with two attempts at inserting the cannula as my veins weren’t great- I think anxiety caused my blood to go to my core 😂. Unexpectedly, I fainted which made me feel awful even before the premeds 🙄. Thankfully by the end all was well and managed the weekend with out feeling too nauseous. Didn’t sleep well the last two nights and had a bad headache Friday night/Saturday but that passed. Feel quite tired but main weird side effect has been a burning hot flushed face although temperature been normal.
Having worried about the injections I’ve not ended up having to do them!! I questioned it as I’d been told by my nurse I’d get them but apparently sometimes they don’t give them on first treatment just to see how you recover with out them. I guess I could get them next time.
Not looking forward to round two in three weeks time - need to make sure I’m super warm to get those veins pumped!
Let me know how you’re getting on.
Day 3 of cycle 2. Only side effects I’ve had so far are trouble sleeping, emotional (think due to lack of sleep and tablets) dry mouth and a bit lethargic. Hoping this is it. My hair is coming out but no patches showing (I have very thick hair)
Hope everyone else is ok
@Kisekae Cycle 1 is did the injections in the morning, yesterday the nurse told me to do them in the evening not the morning. Not sure when you were doing them. I have 2 more EC sessions then I go to weekly with something saying C&T (shame not g&t 🤪) and that’s for 4 months 😩
Thanks @Em77 that is reassuring. I guess it's fear of the unknown!
My next chemo isn't until 3pm so will definitely try and eat something again beforehand. I ate about 4 ice lollies during the infusion and my mouth seemed to get off lightly! Bonus about getting some free hospital food though! 👌
Yes my hair down there has started coming out! I was hoping my leg and underarm hair would be sooner 😂
I cold capped as well and as of yesterday (day 17), my hair down there has all been falling out. Unfortunately the legs and armpits are staying put 😛 I've had a bit of hair on my head come out but not enough for me to stop the cold cap.
I'm on the injections for 7 days and also the steroids for 2 days. I'm glad I only take the steroids for 2 days as I've never eaten as much as I did during those days, my appetite was insatiable!
The injections themself are bareble but my muscles were so sore for a few days, I had spasms in my back that were horrendous but went away the day I stopped the injections.
I'll be starting it all over again on Wednesday. Dreading it to be honest. I'm having 3 EC so this will be the second (followed by 4 Docetaxel).
Good luck to everyone with upcoming chemo.
If anyone is interested in joining a whatsapp group I've just created one for those of us on our chemo journeys. Hopefully this link will work. https://chat.whatsapp.com/CIg2nK6gaBO7ICTQo6zXTk
@Liswa Morning, please don’t worry about your next cycle. I think each one can be very different. My first cycle I was very nauseous and ended up being sick the same day, yesterday I had cycle 2 no nauseous what so ever just couldn’t sleep and kept needing to wee. I’m not sure if it helped I was there earlier and the nurse forced me to eat a cracker and cheese before starting then when chemo was finished the lunch trolly came round and she made me eat a sandwich, yogurt and tea and biscuits 🤪
Also had a foot massage. It was like going to a spa day as the cold cap cooled me down 🤣
I wasn’t planning on using the cold cap again as my hair is coming out but the nurse said as it’s so thick my hair I should continue as it’s not noticeable (also I don’t have my wig yet).
Anyone else started to lose hair in the never region? 😳 I was hoping leg and underarm hair would go first to make like easier 🤣🤣
I shaved my head on day 14 as was starting to notice my hair was so brittle!
I picked at a few white hairs like I'd normally do and they just came away so easy. Also, in the shower plenty was coming out as I washed it.
I must admit it's been so much cooler in this weather 🤣 I went out yesterday too and apart from the odd lingering look no one really bothered 😁
The hospital didn't mention any injections to me so I didn't have them.
Am now on day 17 and starting to get nervous about my next cycle 😔 the first one was manageable but am worried about them getting worse.
Hope you're all well,
@Em77 thanks, that’s helpful and reassuring ☺️
On my very first visit with Oncologist I decided not to go for the cooling cap, it sounds like a lot of extra process and stress. I think those who choose it are brave. I’ve cut my hair short today and will wait and see what happens.
Will let you you how it goes.
Thanks Jennet. My first three cycles are also EC every three weeks on the ward. They said they would go over everything the day before my first treatment.
I didn’t realise we had to do the blood cell injections ourselves. 🙁
Everyone is different but my regime (EC) was IV drugs on the ward (epirubicin and cyclophosphamide) then dexamethasone for 5 days at home, plus anti-emetics, plus filgrastim injections Days 2-5
Questions are good - best way to make sense of all this.
hi, they injections I believe are to help your white blood, I had to do it over 7 days. I hate needles but found this manageable. I didn’t know about them till after chemo the nurse went through all the tablets.
The thought of chemo is definitely worse than actually having it. Everyone seems to get different side effects. Just remember to write everything down. Are you planning on using the cold cap?
Reading your posts with interest as I’m starting my first EC treatment next week. Quite nervous and apprehensive how I will react but I’m hoping and praying it won’t be as bad as it’s in my head!
Many of you are talking about injecting yourself can I ask what this is for? I don’t think I’ve been advised about this from my team.
Also do we need to take dexamethasone all the time and is that the reason for weight gain?
Sorry about all the questions 😊
Cold cap might be welcome coolth.
I'm glad you said that about putting on weight...not that you are, and I am sure you're not, but just people say to me on Zoom calls 'you look so well!' meaning 'why aren't you thinner?' It's disheartening because my diagnosis of diabetes coincided with the cancer diagnosis (two for the price of one, really) so I have been trying to get blood sugar under control along with chemo and steroids, and basically feeling like not eating anything. And still the blood sugar is high. The diabetes nurse suggested I might be stressed....well, yes, a tad.
Good luck for Friday x
How’s everyone doing?
I’m back from having my Covid & blood test and seeing oncology. Now having to isolate till Friday for cycle 2.
These last 2 weeks still seem surreal. I was only sick the first night, tired & constipated the first week (sorry if tmi 🤪) and just when I got my energy back I had a sore throat (used difflam which was incredible) I hate needles but have managed the injections myself. The oncologist seemed happy but did say if I start to feel sick after treatment again to take my tablets early. She’s booking me in for a scan in a week to see if it’s working.
I’m still undecided if to use the cold cap on Friday or just let the inevitable happen (it may be a g-d send in this heat.
Anyone else feel like they were pregnant, I kept having cravings for things! My weight is going upwards which I’m not happy about but I guess that’s to be expected (especially as I stopped smoking before chemo started 😳)
Hello DAB72, I hope all goes well for you on Friday.
The actual chemo, last Friday, along with the pre meds, went well for me, and I felt ok, but a bit tired, over the weekend. The injections are fairly easy to do. Just pinch an inch and follow the instructions, don’t feel a thing, apart from the pinch. I found it easier in my tummy, about a couple of inches from belly button, as that’s where most able to pinch. My thigh felt too tight when pinching.
I started to feel very tired, just plain whacked, on Monday morning. Not really able to do much apart from lie down on sofa. Plenty of rest and short naps help. My first injection was Sunday evening, and I think a combination of the chemo kicking in along with the injection, gave me some bone, muscle aches. Mainly in ankles and shoulders, even though was told it would be in lower back and hips. I’m still taking regular ibuprofen and paracetamol to keep things manageable. Remember to take temperature before taking paracetamol if you do start to feel feverish.
Doing a poo is a bit here and there, and rather pongs. Sorry, but best be forewarned!
Started to get a little more energy yesterday, and after loads of rest, frequent, small amounts of food, am starting to feel loads better this morning.
Wishing you all the best, and please feel free to let me know how things go for you, when you feel able. Sharron, xx
@DAB72 re the injections, I was worried about them too but actually it was not a problem at all. Provided you have some fat - this hasn’t been an issue for me! Tiny tiny thin needle, over in a jiffy.
@sharlea it would be good to hear how you are getting on as I start my first TC cycle this Friday. It’s nice to find someone having the same drugs as many on here are having different. Now starting to feel a bit nervous and not sure how I’m going to get on with injecting myself!! Any tips and advise would be greatly received. Thank you and wishing you all the best over the coming days and weeks
I'm Day 5 post first chemo - just been overwhelmed with nausea and constipation ( yes, both ends going at the same time!) Have felt so tired - like I've done a long haul flight and kept going the next day! Appetite all over the place - craving food and not wanting it when it arrives. Drinking is hardest = mouth feels awful - using biotene mouthwash - which is like rinsing with spearmint chewing gum flavour - but it strangely feels very soft. Yes, also finding the injections hard. Yes - my second EC 5th August.
With very best wishes to you all - thanks for being there.
Hello Kiskae, and so pleased to hear you are feeling better, after a rotten first week, sounds like you had plenty of side effects.
I keep feeling tired and achey but am taking it real easy. Only started chemo (TC) on Friday, so expect this week to be a bit useless, and then things might pick up. Knowing you felt a bit better daily realy helps, so thabnks, sharlea, xx
Hello Jennet, and glad to hear you are feeling a bit more like yourself. Also, done the last of those injections. Shame you suffered delayed nausea, but good the metoclopramide helped.
I started my first dofe, of TC, late Friday afternoon, and things only started to kick in yesterday. Those injections, whilst they don't hurt, sure pack a bone aching punch a few hours later. Or is that the chemo? Rest, rest, feeling tired and whacked now, more rest. light meals, but really don't know how you are managing work. Is it essential? Yes, maybe you aren't going all gibberish, but running a meeting on chemo could wear you out. Take lots of good care, sharlea, xx
Thank you @Kisekae I am finding it so helpful to read other people's accounts of their chemo journeys so thought I'd post where I'm up to.
Day 8, and I was congratulating myself for not getting sick at all, then yesterday nausea started. Is it delayed like that for others? I took a metoclopramide and that has helped.
Did the last of the filgrastim injections last night - now have a lovely bruise on my tummy where my technique was a bit cack-handed!
The worst for me at present is the tiredness - my legs are made of lead and as I posted early, our house has five storeys so forgetting my book by the bed (at the top) when I want it to read outside is a real annoyance. Fortunately I can't carry the hoover upstairs either - housework has gone to pot for a little bit.
Today I am feeling a bit more like myself and am doing some work, running a meeting and I think not talking complete gibberish. Next round of EC is 3rd August which I am rather dreading but has to be done and I am telling myself it will be one third down, two thirds to go...
Anyway, if you're on day 1-8 of chemo, my experience is that it gets better. Resting helps a lot - I'm taking frequent breaks throughout the day, especially in this heat.
Keep going and love to everyone xx
Hi all, I'm day 13 now and feeling great. The first week was horrible for me, nausea, vomiting, fatigue, headaches and not being able to think clearly. It got a little better with each day but yeah, nearly a full week before I felt like I could do normal activities.
I also got back pain from the injections but that stopped as soon as I stopped the injections (day 7).
No hair loss, no mouth ulcers.
I'm really hoping the next cycle isn't as harsh in the first few days (I actually ended up in a&e the first night), I've got a couple different meds to try.
I got a picc inserted today which will make things better for me as well, the procedure was super quick and painless.
Hoping you're all doing well.
Hi Lisa, just keep checking out for thrush mouth, chemo can cause this and it will require antibiotics ❤️ Always ring your unit to make sure all ok, everything is not like normal during chemo, you could need antibiotics for something. Keep safe 💕💕✨✨Shi xx
I have one flight of stairs more than enough. Takes so much energy any day.
I refuse to spend money on a stairlift. That's admitting I'm over 80!!
If you can do all your upstairs tasks then come down and only go up again at bedtime. Takes a bit of thought and planning but it helps a lot.
Wish you well
I'm on day 11 since my first EC session. I think by day 7/8 I was feeling mainly "normal".
My main side effects were tiredness, a bit of nausea but only sick once, a weird furry taste in my mouth and a general feeling of uncomfort like I couldn't settle or concentrate?!
I've also had a headache the past few days, not my usual energy levels and being tired earlier at night time.
It is definitely manageable I'm just nervous about varying side effects as I continue and the cumulative effects of it 😕
Still have no signs of hair loss yet either!
Hope you're all OK,
I definitely started to feel myself once I finished the tablets. Just try not to overdo things and listen to your body. I had my last injection yesterday (yippee) I hate needles so all of this is a learning curve for me 🤪
Im so pleased my heartburn has stopped but now my throat hurts when I swallow.
Can’t work out how to do a new post on iPhone so replying to myself (not a good sign I know). But just wondering how you’re all getting on with chemo?
today has been the worst day for me - wiped out, legs not working, horrible taste in mouth.
the 3year old twins came over and we managed a picnic but I was too exhausted do more and that made me cry so…
hoping that now I’ve stopped the steroids things might look up a bit. Taking a bit of time to get used to injecting the filgrastim but consoling myself that learning new skills is something all post menopausal women must do to avoid dementia so there’s always an upside.
best wishes to everyone xxx
Good luck with the chemo on Monday. I genuinely think sometimes the waiting is the hardest part.
I had my first dose of chemo on Tuesday (4 days ago). So far okay. I feel like I have a hangover, woozy, but as the cancer also precipitated hyperglycaemia it could be that. Everything has slowed down and my legs don't work - my house has 4 flights of stairs to get to bed so that's been fun!
I know everyone is different. But I am finding getting out for a (slow) plod in the sunshine has lifted my mood a lot.
My PICC line leaked a bit so they sluiced it and changed the dressing and that has worked. Desperate now to get my waterproof sleeve so I can have a shower!
sending best wishes and sisterly solidarity to everyone going through this right now xxx
Hi, I’ve just returned from my pre assessment, was given steroid tablets and told will be starting TC tomorrow afternoon. Not FECT as previous chemo was ECMF, and have had my lifetime dose of that Epirubicin. Relieved to find out at last, even though so close to the day!
I have been following this group in recent weeks and finally had the courage to join. I was diagnosed IDC which is ER-positive and Her2 negative. I had a lumpectomy with full lymph node clearance in June, followed by second surgery for margin clearance.
The port a cath was fitted yesterday and the first chemo session is next Monday. I will be having 3 x EC and 3 x Docetaxel. To tell the truth, I'm anxious about the next stage of my treatment.
Thank you all for sharing your journey, it is really helpful.
Thinking of you - I'm should be on first dose of EC on Thursday.
Will catch up with you on the "other side" next week.
Hey, thanks for messaging. I'm having my picc put in next week and I'll be glad when it's done.
I'm on day 5 now, it's been a long and exhausting few days, much of which is a blur but I'm coming out the other side and starting to feel like myself again.
The actual chemo session isn't bad at all and goes pretty quick. Best of luck for tomorrow, message me any time x
Hi @Kisekae @I had my PICC line inserted today. It really didn’t hurt - I honestly think the thought of is worse than the reality. Now getting used to it and starting chemotherapy tomorrow. I hope your treatment is going well x
good luck today (not that you need it) the picc line does make having the treatment so much easier.
When you get the EC the nurse is with you the whole time which I actually liked.
Im still trying to decide if to use the cold cap again or not (I’m still embarrassed how drunk I felt after the treatment 🤦🏻♀️)
thinking of you x my mantra is chemo is my friend
I start chemo tomorrow, and am off today to get a PICC line inserted.
I have rubbish veins at the best of times and this isn't...but hey ho.
I am Her-2 positive and ER positive so am starting with chemo, then surgery further down the line. Tips and hints on these forums are fantastic as I have no clear idea of what to expect and a lot of anxiety. Thank you to everyone taking the time to post their experience.
I am planning not to try the cold cap because I've been told that EC causes your hair to fall out anyway - so opting for a buzz cut later this week and have ordered two wildly expensive beanie hats (my husband bought them for me in fact - he desperately wants to do something to help. I have suggested getting his legs waxed so he can share the pain...)
Look forward to sharing my journey too, in hopes it will be helpful for others
Well yesterday at 12.45 was my first chemo session having EC, unfortunately they were running late but I didn’t mind.
When I was called through a lovely nurse led me to my seat. I had decided to try the cold cap so we tried on all the sizes for the best fit. Medium was the size we went for. The nurse sprayed my hair with water and put conditioner in yet. Once all was set up it was turned on. You need it on 30 minutes before chemo starts. I was also given anti sickness tablets 30 minutes before hand. After 10 minutes I called a nurse over to check the cold cap was working as I didn’t find it unbearable like I had heard from others, it was working. Another nurse came over after the 30 minutes and realised one anti sickness pill wasn’t given to me so I had that as well. The nurse was with me the whole time pumping the chemo through, it only took about 30 minutes. The cold cap still needed to be on for another hour to hour and a half.
Quite quickly I felt wheezy and the room was spinning and felt very nauseous. I was given another anti sickness tablet.
With 20 minutes left to go till it had been another hour and a half I had to take the cold cap off due to feeling unwell and I was starting to feel claustrophobic.
The nurse helped me to the loo, remember if you are having EC your wee will be very red.
I then left the hospital. Dozed on and off a few minutes at a time as the nauseous kept waking me. 2.40am husband called the beep number as I wasn’t getting any sleep. I so wanted to be sick but wasn’t being sick. He was told to give me some of the anti sickness tablets that I had brought home to settle my stomach. Within 10 seconds of taking them I was sick. Wow I felt so much better and then managed to sleep.
Today I am very tired, can’t say if it is due to lack of sleep or chemo or both.
Not sure if I felt sick due to one anti sickness tablet being given late.
Tomorrow my husband has the pleasure of injecting me in the stomach which is part of the medication I brought home.
Sorry for the long essay
How’s everyone else doing? Xxx
Hi - yes I'm having EC (3 cycles ) then doxcetaxol ( 3 cycles ) and Herceptin for a year
First dose next Thursday
Have asked for Port "but we don't do it at this hospital" - every time I have been to the hospital its such a fight to get everything. I don't want a PICC as have disc damage and can only lie on my right side - Breast cancer is in left breast. So thought that PICC would get in the way.
Hair being cut on Monday - this for me is the worse bit - feel like Ann Boleyn going to beheaded!
Have already had Wide Local Excision - but need to have more surgery before radiotherapy. Been shopping today for lots of fruit and veggies to make into smoothies. Have been freezing grapes and ice cubes with mint in.