Yes my appetite has altered. I’m snacking far more. Always seem to be a bit peckish.
Other than that I feel ok. Could headaches be dehydration do you think? I def think I feel more dehydrated. I’m not a massive water guzzler by nature and am really having to force myself to drink more.
My tummy has been the opposite to yours! I phoned nurses yesterday as hadn’t been for 5 days 😳 Lovely nurse initially said she thought I’d need to be checked over. A&E on a Sunday 😩 However, she then called the on-call registrar and he said that as I was totally fine otherwise it could wait until clinic today 🥲 However, I have since been 👏🏻👏🏻 Hoping they won’t want me in now but of course will go if they do 💗
Hope everyone else is OK. Sending love and hugs and positive thoughts to those who start chemo this week 🥰🥰
purple world ❤️Please phone your team and check all ok, you might be getting to nadir part of your cycle and you need to be extra vigilant in case of infection, please just check with them so they can keep you safe through chemo ❤️ 💕💕✨✨Shi xx
Hi all hope you’re all doing ok.
Had my first cycle a week ago and wanted to ask if anyone else’s appetite has increased - seem to need to eat loads otherwise I start to feel shaky and nauseous. Also had a few days of tummy issues - gassy stomach and loose bowels (sorry TMI!!). Wake up every morning with a headache (not really bad but enough to take a paracetamol for) and this might come and go for the day. I haven’t rung my team yet - may do so today. How’s everyone else doing?
Love and hugs xx
Justine1970 ❤️ Think everyone goes through this phase it’s part of the journey, try thinking of it like going into chrysalis for a bit and emerging as beautiful butterfly when treatments finished ❤️ Step by step you are always you and amazing, just sometime you don’t recognise the person looking back at you in mirror, but look deep into your eyes when you look, you are there and all the amazing things you are are still there too, it try’s to take your joy, don’t let it, because we are all greater than it and together 👭 step by step you get each other through ❤️💕💕✨✨Shi xx
So day 3 and my energy levels dropped like a stone. First part of the day in hospital getting my missing jab and the other half in bed recovering from doing all the driving around.
Cancer nurse top tip for the weird taste was to try pineapple 🍍 juice. Not sure if the half a glass of Lilt worked (the closest thing to pineapple we could find in the house) but dinner tasted amazing!
I absolutely know what you mean about this being your life, I too have just said the same thing to my sister, I live on my own but before this I was working in Central London, had a nice social life and saw my friends regularly. Now I know that wont happen for a long time and I just cant see the light at the end of the tunnel, so scared of losing my identity. Feeling quite emotional today.
My tastebuds don’t appear to have changed at all yet. I’ve stayed away from any alcohol though as the thought of a mini wine head whilst going through this does not appeal 😩
Is it recommended that we stay away from take aways? I guess that could make sense due to food poisoning maybe?
I contacted my oncologist today to ask about swimming. I was going 3/4 times a week prior to my operation but scar took a while to heal so wasn’t able to start back prior to chemo. I miss it 😢 but the answer was no swimming unfortunately. Makes sense though eh because of immune system and germs. I also have a hot tub - can’t use that either even though only me in it. Roll on end of treatment. I presume I will have to wait until after radio too as skin may be sore and cracked.
I still can’t get my head around the fact this is my life currently. Less than 4 months ago I was totally oblivious to what was about to come 🤷♀️ But much rather be doing all this and getting better than not knowing and it getting worse.
Love Sarah xxxx
Yes I think we are all having different regimes and different types of drug but all going for the same result.
Well done to you ladies who have already started, I will be joining you on Tuesday. I have my pre chemo chat today which I have only just remembered I am having! My brain is mushy already!
Hope you all have a nice weekend. I am having my last chinese takeaway and prosecco Saturday night as I guess I wont be able to have these when I start treatment, or more importantly fancy them!
Many thanks for your reply .. my Chemo has been delayed by a week and I start on 23rd .. I have been told I can take someone with me for the first session but not after that.
I'm very nervous about having the chemo .. seeing the posts on here is helpful thou as so far no really bad side effects I having 18 weeks, 3 cycles of EC 3 weeks apart then 9 cycles of T 1 week apart - everyone seems to have a different regime and different drugs !
Have my pre-chemo appointment this week if anyone has any advice on things I should ask
Thanks for the positive thoughts. It went really well I think. I reacted to the docetaxal but they fixed it quickly and after an hours break + massive dose of piriton we were good to go again.
I have to go back for the Phesgo tomorrow since they had an issue with drawing it up on the day. But I’m way less anxious now.
After effects haven’t been bad yet, just a weird taste and flushed cheeks. Got out for a gentle walk and managing to do some work. Suspect that’ll hit harder once the boat load of steroids wear off.
Wishing everyone the best, the nurses are definitely some of my new favourite humans, they’re so patient and kind.
I'm reading your messages, thanks Justine1970, and glad that you seem to be doing ok. I'm in that waiting stage, but it will start to change next week with my pre-chemo appointments, echocardiogram etc, so no doubt I'll be joining in with more detailed posts later in the month.
I just wanted you to know I'm thinking of you all and sending you lots of positive thoughts and hugs.
We can do this
Love Tizzy xx
I hope you are all doing ok?
So … Day 6 for me and I feel ok 🙏🏻 Had a shower, washed my hair - haven’t washed it since Friday. Not 100% sure why 🤦🏼♀️ Want to cause it as least stress as possible I think. Just combed it through. No hair dryer or anything. Doesn’t seem to be coming out yet but it’s still really early days. Day 14 onwards apparently.
My Mum went home this morning so I was back in charge of my sons. They are pretty self sufficient though thank goodness. I did cook us all dinner though so gave myself a pat on the back 👊🏻
Feel a bit tired now so am gonna head to bed early. Still not sleeping well at all. Really bad night sweats. Yuk 🤢 The steroids stopped on Monday morning. Really would like a decent nights sleep soon.
Injections will finish tomorrow evening then that’s all the prescribed drugs finished. They gave me some other anti-sickness but to take only if I need to.
Sending a huge hug to you all. We’ve totally got this August Ladies 💗👊🏻💗
Touch wood I’ve not had any tingles/itchy/burny palms and soles since Day 2. I was worried it would get worse but thankfully it seems to have stopped.
It has been amazing having my Mum with me. I think I would’ve struggled without her. Emotionally too. I have many friends that have offered to help but I didn’t feel I wanted to be around anyone really. She is heading home today though. I am feeling that I will now be ok to be on own or ask friends for some help if needed.
I’m in Brighton and my parents are in Essex. So not too far. I’m a bit worried incase I get an infection - nothing to say I will though 😳 It’s just all the unknown. Mum will head back if needs be. I’m gonna go and stay with them for a few days after the next round. Change of scenery 😂
I’m feeling ok today. Not 100% for sure. But I really do think things could be worse so I’m feeling thankful this morning.
Sending love xxx
Hi all - hope you are all keeping well!!
Regarding feeling wired in the night I was advised by my nurse to take the steroid before 5pm to try to avoid this. Might help, but please check with your medical professional as we might all be on something different and I don’t want to give the wrong advice.
Love Sarah 😊
Hope you are all ok!
How are you feeling now? Have you spoken to the nurses about the sore skin and the fluid retention? Hopefully that will go down? Wired in the middle of the night isnt the best is it, you need that in the day to make yourself go for a long walk!
I hope you are still feeling ok and are able to function still! How is your peripheral neuropathy?
Are you finding it a help having your mum staying? I live on my own and have my mum coming to stay after my first cycle as I dont know what to expect and am anxious about feeling unwell and alone.
I hope you are feeling ok too, shame about the cold cap but understandable with migraines. I have decided not to try this and have bought a wig!
Good luck tomorrow.
Hi, I have been told you cant take anybody in with you but there are a lot of people to chat to there. I am going to take a book and my phone to chat to friends on whatsapp during the treatment.
Hi Tizzy, I am having the full works too, 19 weeks, the first week is carbo/plax? then the second and third plax and so on. I am also doing a trial so am taking 2 chemo pills a day on days 3-12 for the whole time I think. I think it will be a bumper ride!
I'm doing OK. The weekend was strange. It felt like it was on go slow. I had a sore stomach, but sometimes couldn't decide if it was nausea or hunger. I was wide awake and wired in the middle of the night - which I guess is the steroids. It was very up and down. Each phase only seems to last a few hours. I was all over the place.
Friday was my first chemo (EC), and now it Tuesday I'm feeling much better, have taken all the drugs I was given. I have put on 3 kgs, think that is all the fluid retention, my calves were puffed up yesterday.
Last night, new side effect, my skin is super tender, when I lay in bed felt like I was lying on a bed of nails. Still sore today. Think that is the injection for the white blood cells doing its thing.
Otherwise, actually feeling OK.
Hope you are OK too - take care of you!
Hi to everyone!
So glad to have found this thread, I start my treatment next week, it is weekly for 19 weeks, bumper one every 3 weeks.
I am following this for tips!
Hope you all stay feeling ok and thank you for posting and helping.
Yaay you have your first one done 👏🏻👏🏻
I was/am exactly the same as you. Most of my time is currently spent wondering what is going to occur next to my body 🙄
So far though I think it has been ok. Clearly I have nothing to compare it to though! I’ve not been sick. Or felt sick. But is that the drugs helping me?!?! I shall find out soon enough once they’re out of my system! I’m trying to work with the idea that the drugs have helped me through the worst few days 🤞🏻🤞🏻 And that there is nothing worse to come.
I’ll keep you posted …
Sending love. Sarah xxx
Hope you are all keeping well. So I’m back home from my first session and all went ok. I tried the cold cap but due to suffering from migraines I could only tolerate it for a couple of minutes before I could feel one starting - so it was whipped off very quickly!! Gutted as I was hoping it may give me a chance of keeping my hair!! So now I’m sat at home wondering how I’m feeling/what to expect and making sure I know when I’m taking the cocktail of drugs that I was sent home with.
Take care everyone
How are you doing? I’m finding it all really strange. I don’t feel too bad I don’t think?!? I don’t feel great but I’ve not been sick or felt sick yet!
Loads of tummy cramps though! Am taking laxatives as of last night. Oh the joy 😂🙄
Steroids and anti-sickness tablets ended this morning. Wondering if they may have carried me through the worst 🙏🏻 Or if all hell is about to break lose once they are out of my system 🤦🏼♀️
Tummy injection was ok I numbed tummy with ice before I did it. Didn’t feel a thing 👏🏻👏🏻👏🏻
Hoping you are doing ok. Love Sarah xx
❤️Glad you checked with your unit ❤️ one that a lot of us used when the chemo dried out hands and feet was udderly smooth with extra urea which we all got off Amazon 😘 you must keep your team advised on your hands and feet they will tailor your chemo specifically to you do you don’t get nerve damage ❤️ step by step 👭 you will get each other through and be cheering each other in as you all finish chemo 👭 dig in, focus, look forward, it’s an extra doctor on the inside giving it a good 🥊🥊🥊 for you ❤️ treat yourselves after each treatment, book on the look good feel better with your local Macmillan, great tips on how to do makeup and you get free goody bag too 😁 💕💕✨✨Shi xx
I was diagnosed a month ago and due to start chemo this Wednesday the 11th with bloods getting taken tomorrow. One of my tumours is HER2+ So they seem to be throwing a lot at me to get it under control. I’m starting off on Docetaxol + Pertuzamab + Trastuzumab for 4 cycles the following that up with another 3 cycles of EC. If my math is right that’ll finish up the week before Christmas.
After weeks of “looking forward” to starting treatment I’m suddenly a nervous wreck about how I’ll react to it and the gosrelin to stop my ovaries. I think it is just the final waiting anxiety. It was really comforting to discover this thread.
Thank you so much for your advice. I called the hotline! Nurse was super helpful. She said likely peripheral neuropathy 😳 which is quite common. I don’t have it severely and she said to get a moisturiser with 2% menthol. I have found some on Amazon!
I had been taking Nurofen but she said def not to whilst having chemo as it can cause tummy problems and also may cause bleeding! So paracetamol only. She also said to check my temp before I take said paracetamol. This being because it could lower my temp and I may then not realise if I have a high temperature.
So much to take in 😩 I’m never usually poorly so this is a big learning curve.
Feet and hands ok at present.
Thank you again. This thread is amazing 💗💗💗
Sarah, do please check with your unit about itchy hands and feet, being on chemo can cause reactions that you just need to check with your team. If anyone gets burning wee you will need antibiotics from your team chemo has given quite a few of us a uti that required antibiotics. Anyone who gets thrush or thrush mouth from the chemo again ring your teams and get antibiotics not just some over the counter stuff, your teams will be pleased you are being vigilant and helping them get you safely through chemo ❤️ Step by step 👭❤️ Together you will get each other through, remember you are beautiful and amazing and 💪😘💕💕✨✨Shi xx
So lovely to hear from you. How are you doing?
It’s currently 0447hrs here and I’ve been awake since 0230😳 I’m usually a very good sleeper!
Fri evening and all day yesterday I felt really quite fine. Was thinking this was going to be a breeze! I went to bed with itchy hands and feet and said hands n feet now feel like they are on fire 😩
I don’t feel sick though (yet) so that is a definite bonus for now. I have a couple of friends that have been through similar and they have said that side-effects for them kick in after they stop the steroids. For me that will be Tues morning.
I thought that any poorlyness would kick in pretty much straight away. I wasn’t expecting to have to wait around for it to arrive! It’s a very bizarre feeling not knowing if and when something is going to strike plus not knowing what exactly!
I have my Mum here to look after me for a few days. I’m a single Mum with two teenage sons and didn’t want them to have to feel responsible for me if I’m quite poorly. They went off to their Dads yesterday whist I was still feeling fine. Currently they are under the opinion that cancer/chemo is a breeze! They’ve not seen me struggle yet. I’m really hoping I can keep it that way 🤞🏻
I have injections to start this evening. Initially I thought I’d be fine to do them. I’m now panicking slightly! Any advice would be greatly received 🙂
I’m sending you a huge, ridiculously early morning hug 🤗 Always here if you want to chat. I’m pretty sure this will be a bit of a bumpy few weeks. But … We can absolutely do this!
Loads of love Sarah xxxx
My experience sounds very similar to yours, although I'm having 4 rounds fortnightly of EC, not TC, (then 12 weekly Taxol).
I was there a similar time yesterday for my first session, I tried the cold cap, I thought it was manageable, like you I had a heat pad which helped. 🙂
I had a portacath fitted on Wednesday (they tried the week before, but in theatre had trouble so removed it), so that was a bit tender, but was so much better than all the bruises I have on my arms from the blood tests, cannulars, etc.
I didn't sleep that much last night. About to do my injection pump, been putting that off for the last hour.
It nice to meet other people travelling the journey at the same time as me. 🙂
Big hugs to you all. ❤️
I had my first round this morning - well it kinda took all day! Was in at 10am and got home at 3.30pm. I only live 15 mins from hospital!
I’m having x4 rounds of TC. With cold cap.
I was dreading the cold cap but it wasn’t half as bad as I was expecting. I took two strong codeine painkillers beforehand though so I think that def helped me to get through the freeze (10/15minutes at start). It went on 30 mins before and had to stay on 90 mins after!
If you’re gonna try one make sure it fits tightly. It has to be really close to your scalp.
It may help keep my hair, it may not. But I wanted to give it a go. If not I’ll brave the shave and wear funky wraps n hats for as long as needed!
I took loads of warm clothes. Didn’t need my scarf, gloves or extra cardy and socks! I did use a heat pad on my lap though - hospital provided that. I also took hot chocolate in a flask and that was lush!
Nurses were amazing. As always! Have been sent home with various drugs. Steroids, anti-sickness tablets and bone marrow injections that I’ll need to inject into my tummy! They let me practice on a fake tummy! They also gave me mouthwash and moisturiser.
I have a 24hr number to call if I’m worried about anything at all. So far though I feel fine. Not really any different but I think that may be due to the steroids helping me out?!? A friend said her side effects kicked in once she’d stopped the steroids. It’s a bit of a waiting game. I’ve never waited to be poorly before! It kinda always just happens! Plus I have no idea what this ‘poorly’ will look like. Very odd situation.
Apparently I may not be able to sleep tonight due to steroids attempting to convince my body that I’m on speed! I’m hoping to override those signals!
Who knows what tomorrow brings but today has been more manageable than I thought. We’ve got this gorgeous ladies! The fear of the unknown today was definitely far worse than the treatment itself. And if the nasty side effects do catch up with me, it will be ok, they will pass.
Hope you all are doing ok. Sending my love. Sarah xxx
I start my chemo tomorrow, I'm a bit nervous. Any ideas of things I should take with me, (apart from obvious things like book, tablet, snacks). I'm having 4 rounds of EC, fortnightly, then 12 weekly Taxol treatments.
I got given some soup, a sandwich and a yoghurt for lunch, but I did check beforehand and had taken snacks just in case! They were also really good at bringing tea and coffee throughout.
I do hope it goes well for you on Monday. I'm now on day 3 and have been out for a short walk this morning and am going out for lunch with friends. I haven't had any sickness issues and the tablets they gave me to bring home have been great. I don't have much appitite and haven't slept well but still felling pretty good despite all that.
All the best and let us know how you get on on Monday.
Well I've come to join the group as I start chemo this month. I had my excision on 2 July and the operation went well and my lymph nodes were clear, which is great, but as I'm Her2 Positive I have to have chemo before radiotherapy.
I've had a phone oncology appointment and now I'm going in for my pre-chemo appointment on 19 Aug, then bloods and covid swab and then an appointment on 23 Aug (my wedding anniversary!), which I think is the actual start. I'm having TCarboH (Docetaxel-Carboplatin-Trastuzumab). The Her2 Positive means I have to have the Trastuzumab, which is the one I'm most worried about. Is anyone else on here having similar. I know we will all have our own journeys, but I just wonder if anyone else is having the works like me?
No doubt I'll be on this group a lot.
Good luck everyone
I start x4 rounds of TC chemo this Friday.
I’ve tried not to read too much as I know it effects people in different ways.
This is the most scared I’ve been so far though. I’m a single Mum with two teenage sons. The boys are being amazing and I have close friends helping me. Plus my own Mum is coming to look after me for the first few days. I’m mostly worried about the nighttime for some reason! I think potentially feeling really poorly, not being able to sleep etc! I will be super glad to get the first one done as nurse said that should give me a general idea of how the others will pan out.
I’m going to try the cold cap. I have a couple of friends that have used it successfully. They have given me a list as long as my arm of things to prepare for and to help me get through it! It sounds joyous!
I’m so glad this little Aug group exists. Thank you xx Horrid that it has to. But for me, having others that are going through similar is really helpful. For info/advice But mostly for the amazing support.
Sending my love to you all. I’ll keep you posted …….
I am also wondering if you can have someone with you during chemotherapy - the Oncologist did say that you are ok to drive and having chemotherapy doesn't affect you car insurance
Thanks for taking the time to reply. After I’d posted the message I then had to go to the hospital for bloods and realised I was right outside the oncology department so went in and asked my questions. Nobody’s allowed with me and I was advised to get lifts as the session on Monday will be five hours!! Hope you don’t mind asking this silly question but I’m there over lunch - do I take a picnic!! 🤣
Hi Purpleworld (what a great name, I also love purple!),
I had my first chemo session yesterday. I wasn't allowed anyone to sit with me, but each hospital will be different so it's worth asking. I'm in Scotland so it might be different if you're in England. I fully recommend someone to drive you home afterwards. Personally I've had a cracking headache ever since and I wouldn't have wanted to drive home alone. Is there anyone who can help you with the boys, at least for a couple of days till you see how you feel? Again everyone is different so I can't say whether you'll cope or not.
Sorry not very helpful but I hope it goes well on Monday. Just keep thinking you'll be one step closer to being healthy again and running around after your boys. Many blessings.
I start chemo this Monday 9th. Feeling scared about feeling unwell (3 boys at home with me, 1 who has additional needs). Does anyone know if I can take someone to sit with me and if not will I feel ok to drive home after the session.
Thank you 😊
My oncologist said to ask my GP for the note. She said anyone going through Chemo is entitled to ask for the whole time off if they want and that the GP shouldn't even question it. That's what I'm going to do but not yet as my company have said I can use all my holiday allowance first as I'll most likely be off for the rest of the year. I only get 6 weeks sick leave on full pay so using holiday will extend the time I can get full pay. I spoke to someone from Macmillan about it and they advised me to do it that way too.
I start on 17 August. In prep I have had my teeth cleaned, had my eyebrows micro powdered and am sorting a wig! Not sure about anything else although I am going to batch cook some soups!
Hi Margo....ask your GP for a fit note.....mine just said ‘how long do you want’ ....I think I had one for 3 months....2 for 2 months and 2 for 1 month.....it was up to me....I didn’t actually speak to the GP ....just asked reception to pass on request....then it was emailed to me . I had chemo last July to November .... I didn’t want to work during chemo either.....hope you don’t get too many side effects.
I'm due to start EC in next 2 weeks haven't got a date yet - I don't do well on medication and I'm thinking of stopping working till ive finished chemo Who issues the sick note thou ? Is it the hospital or GP and can you get a note to cover the whole 18 weeks ?
Sorry you all find yourselves on here ❤️ Step by step together 👭 you will get through. Hang on tight to each other, be kind to yourselves and ask away on here, there are lots who will jump on the threads and help ❤️ Do it your way and what works for you, there are no right or wrongs, getting through safely is what matters ❤️ If your antisickness meds don’t work phone your rapid response number, don’t think oh it Chemo and out up with it, they will tweak your meds till they get combination right for you and mostly they get combination right straight away ❤️ Book yourselves on a look good feel better course at your local Macmillan ❤️ Do read mountain lion by strawberry blonde in hope and inspiration ❤️ It’s helped lots of us over the years. Get thermometer to keep track on your temperature during chemo and phone rapid response to check anything with your teams while on chemo, they want you to do they get you safely through ❤️ I did charts so I could keep check on meds taken during chemo because it can give you chemo brain ❤️ Hope this helps a bit, do ask away ❤️Everyone is here for you and please use all the support Breast Cancer Now has here too. Please look at donating hair to little Princess trust ❤️ Makes wigs for children ❤️ It helped turn a negative of loosing locks into a positive because it was going to help a child ❤️💕💕✨✨Shi xx
Hi, I'm due to have my first round of EC next Tuesday. It's all a bit of a whirlwind at the moment and reading all the information about the drugs is a bit overwhelming but I'm ready to get started. I was diagnosed about 6 weeks ago so this is my first step on the treatment plan.
I'm thinking I'll probably stop working till after chemo so Monday will be my last day, which feels a bit weird when I don't even feel sick yet!
I am due to start in August however do not have a date as yet. I have been asked to consider a trial and my plan would be:-
Cycle 1 Day 1 Carboplatin and paclitaxel, Cycle 1 day 8 paclitaxel and Cycle 1 Day 15 Paclitaxel and then same until Cycle 4. Cycle 5, 6 and 7 is anthracyclines. There is then 12 days of 2 tablets a day called Olaparib then 6 days off and then back on the 12 days and so on.
I feel super scared and like this is a huge amount of chemo compared to others I have read about. Really panicking that I will be bed ridden for 6 months.
Starting chemo in Aug for breast cancer. Feel like I've dealt with everything this far OK but I'm struggling now, chemo seems so frightening
This thread is for anyone due to start chemotherapy this month. I’m sure others will be here soon but please introduce yourself and you can all help one another through this phase of your treatment. If you have any questions please post away on here and others in the community will watch over you whilst you are getting started. Once you are into it you'll be pretty good at helping each other. You can also ask the nurses on this forum if you have any concerns. In the meantime, the top tip is always to stay well hydrated throughout chemo, aiming for 2 litres of water per day and get a thermometer and check your temperature every day.
Here is the BCN guide on chemo:
Here are some apps which can help to keep you on track:
I finished my chemo in October 2017 and doing very well again now. Here is my story which has some chemo tips on how I coped which were collectively shared from others who had gone through the same from this forum:
If you decide to set up a private group its good to stay on here also during treatment as I know from experience there are some people who watch but don't immediately pluck up the courage to join in. Your conversations can be a real comfort to others.
If you’re new to the forum, here’s the “Getting Started” advice: