Great that your first round went ok. I started yesterday too and used the cold cap. It’s pretty uncomfortable isn’t it? But if it does the job it’s worth it! Apart from a headache and mild nausea like you I feel fine. I feel a bit like I’m sitting on a ticking time bomb waiting for more side effects to hit though! Quick tip - my nurse gave me a couple of sweets to such during the drug that makes your nose tingle and it really helped so maybe take a couple in with you next time and see if that takes the edge off xxx
welcome to the group! Sorry you had such a rough time after your ops, I would have really struggled with 2 lots of ga so close together too - it took me forever to get over the anaesthetic from my mastectomy. There are so many decisions thrown at us during this time aren’t there and everything happens so quickly, it is an absolute whirlwind.
Good luck with you chemo next week. I had my first cycle yesterday and it was fine. The nurses were lovely I had no reactions to anything. I used the cold cap too Marie. It’s pretty uncomfortable but bearable and if it means I can keep some of my hair it’ll be worth it for me. I have really thick hair so had to have it on for even longer.
I’ve had a bit of a headache and some mild nausea since yesterday but nothing else which I’m really pleased about. I even managed to walk the dog when I got back. I had visions on vomiting and being curled up in bed but so far so good. I’m on my way back to hospital now to have some scans on my thyroid as my ct scan found a lump on it which need to get tested. Bloody typical 🤦🏼♀️
Hi Becci, lovely to meet you.
I imagine you might be feeling like I do - I never expected to be going through breast cancer, certainly not in my thirties anyway!
I hope you have recovered nicely from your surgery. I had my axillary clearance a month after my mastectomy, and my body really struggled with a second lot of general anaesthetic in such a short space of time. So much so that I couldn't face going through egg harvesting or IVF before beginning chemo. Just have to hope it's a decision I won't regret in the future, as I don't have children.
Though I understand you aren't feeling in the party spirit right now, I think you more than deserve to indulge yourself on your 40th next Friday! ♥️
Have you started chemo yet?
That’s my first one downloaded folks. It was ok. Was worried about the Epirubicin as last time I was shaking. This time I was fine. Not so anxious maybe. The cyclophosphamide made me feel a bit weird in the sinuses. This seemed to last a long time. I also cold capped. I am not convinced it’ll work as I only found it mildly cold. Got a carrier bag of drugs to take home.
The ward was quite lively with some great characters and ended up being a really jovial experience.
I will keep you all posted on side effects etc in the hope it helps you with your experiences.
Feel absolutely fine at the moment.
Sorry about your arm Becci. Not fair. You really don’t need that. Glad they are tackling it and I hope you get relief soon.
Good luck everyone. The roller coaster ride is just pulling in!
Photo of my cold cap. Ignore all the chins.
Hi Maire, hope you’re feeling ok after your 1st chemo today. I’ve been to hospital today as my arm got worse, they definitely think theres a blood clot so i’m on daily blood thinning injections and awaiting an u/s scan. Hoping this pain eases off soon so i can finally start to feel better.
Hope you get plenty of rest over the weekend, big hugs, Becci xx
Hi MB, your treatment plan sounds almost the same as mine, only difference is i’ve had a lumpectomy & axillary clearance instead of a mastectomy. I’m 39, will be 40 next Friday but somehow I don’t think i’ll be celebrating it much this year! Hope your 1st chemo goes well next week, big hugs, Becci xxx
Welcome MB. I am downing my tea before heading for my first dose at 2pm. I Really need to get a move on.
I start chemo on 13th August. 6 months of EC and Docetaxel, followed by radiotherapy to the chest wall and neck, and then 10 years of hormone therapy meds. I'm 34, and have recently had a mastectomy and axillary lymph node clearance on my left side.
Thinking of you all this month as you enter treatment.
Thanks Maire, yeah the acid reflux is something i’ve never experienced before and just made the nausea even worse. I wish i’d known that its a common side effect of chemo before hand.
Zach is a handful, obviously going through the terrible twos stage isn’t ideal whilst i’m going through chemo but then the flip side is seeing his cheeky smile everyday and giving me something positive to focus on, he’s a welcome distraction for us all at the moment. We have 3 older children, 2 who still live at home ages 18 & 15 so they help a lot with Zach & I also have a fantastic partner so i’m lucky in that respect.
Hope you do manage to get some sleep tonight. We’ll get through this together, big hugs, Becci xx
Thank you so much Katbee, i’m wishing you all the best for your 1st session tomorrow & i’ll be thinking of you xx
Sorry to hear you’ve had a rough start Becci. I remember being in absolute agony with acid reflux pain right through to my back because I hadn’t taken omeprozole.
At least that’s one down And hope you start to get some sleep and get through the worst.
Having a 2 year old, though joyful at times, must be very demanding. Hope you get the support you need.
Mine were 16, 14 and 10 during my last chemo and so were all at school which meant I had lots of time to sleep and rest during day.
Not sure I’ll sleep much tonight.
Oh finding dory you poor thing! So pleased that you are doing a bit better now and great that they have figured out what they need to do to make you more comfortable. Sucks that it happened over the weekend though! Really hope your next couple of weeks go better. I’ve got my first session tomorrow, will feedback to everyone after xxxx
sorry you are having to go through this but lovely to have another person to be going on this journey with. I found that trying to take back a bit of control with the things I could do has helped, things like getting in foods that I think I’ll like, getting some nice natural moisturisers and deodorants, making a list of what I want to take to chemo tomorrow etc It’s all just made me feel a little bit less out of control. Oh and make a list of every little thing you have questions about for your pre chemo chat with the nurse - I found that really helpful. I’ve got my first session tomorrow, I’ll let you know how it goes. Big hugs xxx
sorry i haven't been on before, but the weekend didnt go great and i only started to feel half way human again yesterday! Nausea started about 7:30pm the night of chemo, Domperidone tablets didnt help at all and the steroid ones only helped ease it a bit. The whole thing was made worse by bad acid reflux though, so i could hardly sleep, eat or drink. My wonderful partner eventually sorted out getting different meds for me, which took all day Monday and resulted in a prescription being sent electronically to our local pharmacy through the GP. I’ve now been taking Ondansetron for the nausea and omeprazole for the acid reflux since yesterday and feel much better than i did thank god! I’m drinking and managing to eat little and often although I don't know where my taste buds have gone?! Obviously just need to get my strength back up now, but its hard to get lots of rest when you have a 2 year old! Only thing now is that since i woke up this morning, my picc arm aches at the top and all my shoulder. I rang the nurse and she said i’ve probably slept funny on it and to take paracetamol for it, as I don't have a temp, theres no swelling, redness etc, so i’m hoping that will feel better tomorrow.
Overall, not the ideal start to my chemo journey, but i’m hoping that now they know how i react to the EC they can prepare me better for next time.
Just knowing that i’m not alone and there are others going through this makes me feel better able to cope with all of this.
Maire, i wish you all the best for tomorrow, i’ll be thinking of you xx
Big hugs to you all xx
I’m having 3x EC (dropping the F this time) and 3 x T, so veart similar. I’m also getting biophosphonates this time and eventually hormone therapy.
I had the Herceptin last time and had no side effects at all and worked through it. It’s nowhere near as bad as chemo so try not to worry about that part of your treatment.
I suppose I should stay drinking water for tomorrow and plump up those veins 😱
Hi. Thanks for you reply and im sorry you're going through this. Im trying to keep positive and keep telling myself 'this will be worth it'. But its the fear of the unknown, like will it work and how bad will i get the side effects? But i suppose we just have to focus on the here and now. Im trying to do lots of nice things like trips out etc before my chemo starts. Im having 6 lots of fec - t and trastuzumab and pertuzumab for 1 year. What is your treatment? If you don't mind me asking!
Welcome Amy. That’s 6 of us now. My first dose is tomorrow. Will feedback. I remember last time around some people suggested fresh pineapple (not tinned) to help keep mouth healthy.
I believe there are anti sickness drugs you can take to prevent nausea.
Also, take the omeprazole prescribed. I missed it once and was in agony. It is brilliant for preventing acid reflux.
Hopefully we can all share out tips as we go.
Hi. So glad to have found this thread. Im booked in for a pre assesment 13th august but it looks like i'll be have my first lot of chemo then too, im very nervous! Sickness is my main concern but i really hope i can cope with it all. Ive got 6 cycles every 3 weeks. Im having my hair shaven off next week too so big changes. Does anyone have advice on how to get through this? Sorry, i know it sounds stupid!
Heart scan was a bit concerning because she took ages looking at one specific area so I was a little alarmed. Usual thoughts going through my head about maybe something being wrong and chemo being cancelled. This brought me to the realisation that I would be more worried NOT having chemo than actually having it.
I have another appointment tomorrow and will have a list of questions to ask.
On Thursday I’m going to ask for Epirubicin to be administered super slowly as last time it did make me shake and I still have tenderness over the vein used. Might be worth others requesting this if you have concerns.
Im interested in the Covid screenings as I don’t think my health board is doing this as I did ask if it would be done pre chemo. I’m torn in this one as having a ‘not detected’ result is no guarantee you don’t have it lurking or pick it up after you leave hospital but on the other have it could detect some cases.
I'm sorry to hear you've had issues post masectamy. I hope they can sort it quickly. Did you speak to them today about it? I hope your heart scan went okay today and good luck with your pre chemo apt on Thursday. Fingers crossed you can start your chemo as planned. x
Yep chemo feels like the last hurdle and although I'm nervous, I just want to get on with it now! Thursday isn't long for you to wait! And I'm not far behind you, I start next Weds. There are so many apts aren't there! I've got my blood test and ECG tomorrow, covid test saturday and then nurse apt and piic line on Monday (I hope that doesn't hurt). I'm not sure if its under any anaesthetic or not.. I need to ask. Then I start chemo next weds. I'm only having an ECG not an echo scan but I'd prefer the echo as it's more detailed. I'm worried what chemo does to the heart so wanted a proper check but he said I'm too young at 38 to have an echo?! Im confused though as most people seem to have an echo? Never mind, I'll just have to hope my heart can cope! I'm sure it will but I'm having 2 weekly cycles which is going to be a little tough I think! But on the plus side I'll finish sooner I guess! Are you having EC chemo first? Like you, I'm looking forward to Xmas and being all finished! Yay! I think my chemo will finish mid / end Nov if I manage the two weekly cycles but I might go to three weekly cycles if its too much. I've never looked forward to Christmas so much since I was a kid! Ha ha! xx
Hi Steph! So pleased you’re op went well and you’ve recovered well and great news that the ct scan was clear. Chemo feels like the last hurdle to get through now doesn’t it?! I’m going to need another op after chemo to remove my lymph nodes as they found some anomalies in the sentinel node that they can’t quite explain but to be on the safe side they want to remove them.
I start chemo on Thursday. I went for my echocardiogram today which feels a little cruel to have a hard probe pushed down on your tender chest and mastectomy scar so soon after surgery! Then I’ve got meetings with the oncology nurse and oncologist and blood test and Covid swab all ready for Thursday - eeek! Having the end in sight finally is definitely motivating me at the moment though and a hope to be all done by Christmas!
Welcome to the group Stephanie. Glad to hear you’ve healed well and things are moving along for you and what a relief your scans are clear. Sounds like they are giving you a good blast of chemo. I am having same chemo as you but just 6 over 18 weeks.
Tomorrow I get my heart scan then the following day my pre chemo appointment. I’m still having trouble with my mastectomy. The seroma has leaked spectacularly twice and is still leaking a little as 2 tiny holes haven’t healed. Worried about the infection risk if my chemo starts as planned on Thursday. On the other hand I don’t want anything to delay it.
Good luck with your upcoming appointments x
Hi everyone, I'm Steph and I start chemo next Weds 12th so I thought I'd join you lovely ladies 🙂 I had my masecatmy a few weeks ago and recovered really well. I was diagnosed with grade 2 lobular BC in May with all 34 of my lymphs involved which seems rare? 😞 and quite worrying in terms of future spread / secondary etc? However they think they got clear margins which is good and a PET-CT scan post op was all clear so I'm hoping chemo is just to mop up any little naughty stray cells! Im 38 and have a little boy who's 7 yrs old. I live down on the sunny South coast. I hope everyone's doing ok. I've got my pic line apt next Monday (hoping it's not going to hurt.. Im so squeamish!) Then Weds I start 4 cycles of EC chemo. Im having it in 2 weekly cycles. Is anyone else having 2 weekly cycles? Then I've got 4 weeks of Paclitaxel chemo. X
Well done for making it through your first treatment Becci! I’m so pleased your feeling ok at the moment, fingers crossed you have a good weekend xxx
Make sure you are drinking at least 2l of fluids a day it helps flush things through 👍if you’ve had fec, don’t be alarmed that you will have pink wee for a bit, but do rest up and if you feel strange even without temperature phone your rapid response number 👍 💕💕✨✨Shi xx
I have 4 children, the youngest is 2 &1/2 and a real handful! but the older 3 are: 21, 18 & 15 now so are able to fend for themselves, well, pretty much🙄😂 obviously Zach is too young to understand anything and thinks the dressing on my picc line is a plaster that the doctor will make better, bless him😊 The older ones seem to be handling it all ok - they talk to their dad more than me (i guess to avoid upsetting me) but i tell them stuff anyway, coz that’s just how i am😂 and they have each other too so i guess i’m quite lucky in that regard. It must be very difficult for you to get the right balance, like you say, they’re still very young and won’t understand most of it all, so i guess keeping things simple and making it clear that mummy is getting medicine to make her better would be my approach, but i agree it’s so hard.
well, i’m feeling ridiculously tired now - i’m surprised i can even type this tbh!! So i’ll let you all know how this weekend goes with side effects, wish me luck! xxx
Hello!!! Just to let you know that i’m ok, so far no sickness, feeling a bit spaced out and tired now, with a strange taste in my mouth,(keep sucking on murray mints!) but it was much better than i thought, thank god! The whole thing took about 2 & 1/2 hours but that was because they had an emergency to deal with so took a bit longer than usual apparently. They’ve given me more anti-sickness meds - steroid ones to take over the weekend and others for if/when i might need them, so i feel better knowing i have them here.
I can’t believe how hot it is today, the chemo suite is fully air conditioned so it was a bit of a shock when i got out! Hope you’re all ok & keeping cool in this heat! Big hugs, Becci xxx
Hi, if your antisickness meds don’t work, please ring your team, they will tweak your meds till they find right combination for you, a lot of people don’t get any sickness ❤️ But if you do your team will sort ❤️ Those travel bands have been used by others and helped them during chemo too, so maybe worth a try? Now as you all get on the chemo rollercoaster, hang on and hang onto each other 👭 you will get through 💪 and unlikely as it sounds you will have 🤣😂🤣 as you go through, keep focused, be kind to yourselves ❤️👭❤️ And always ring your teams if you don’t feel right even with no temperature so you all get through safely 👭❤️💕💕✨✨Shi xx
Oh wow Finding Dory that must have been such a shock! I really hope tomorrow goes well for you and that you feel ok afterwards. Let us know how the first treatment goes. Mine is a week today and I’m so nervous! I too get so sick like you - travel sick, so sick on the anaesthetics after my op, pregnancy sick. I told my oncologist and said they’d put me straight on the strongest anti sickness drugs. Have you let your chemo team know? I get the impression that they are quite good at adjusting meds to help with nausea.
How are your kids coping with it all? Mine are 7 and 5 and I do feel worried about how all this is affecting them. We try to talk to them about it but they really don’t understand, it’s so tricky to get the balance kid letting them
know what’s going on but not scaring them
isnt it? Xx
Thank you so much Maire, it’s so nice to hear from someone who’s been through it before so can give some insight on things to expect. Although it sucks that you’re having to go through all this again.
I think i’m most worried about the sickness - i get travel sickness, sick from anaesthetic and had really bad morning sickness in each of my pregnancies so i’m just a sicky person! They’ve given me anti-sickness meds today and i’ve got to take one an hour before chemo, so i’m praying that it helps!
I’ve had a lovely soft blanket made up with photos of our children on it, so that that will give me some comfort & keep me warm, although i’ve heard it’s supposed to be a scorcher tomorrow!
Will let you know how it goes, big hugs, Becci xxx
Please stay with us FD.
That’s a shocker though. So soon.
I felt v cold and shaky when I had epirubicin last time so take some warm layers with you just in case you’re cold.
The C chemo gives you a weird sensation in your sinuses but it is fleeting.
I found warm drinks helped
Your first pee afterwards is red so don’t be alarmed ( I had to go behind a bush because I was in a walk and I think it irritated my bladder).
From memory you feel ok for the first few days after your infusion.
Will keep my fingers crossed for you tomorrow.
So I had my picc line put in today which was absolutely fine, but whilst i was there the nurse said ‘so you’re all set now for your treatment tomorrow’ Er, pardon?? I asked what she meant because I was told it was starting on the 7th which is next Friday but she showed me the computer screen and double checked for me and i’m definitely starting tomorrow. She apologised for the confusion - i’m in on the 7th to flush my picc line, but I mean, it’s a good job she told me, otherwise i would’ve missed my 1st chemo appointment! I’m now rushing around trying to get a few things done before i have to be there at 12:30pm!
Am i ok to stay on this August board, even though it’s actually July i’m starting now?
I’m feeling nervous about it all now, god knows what i’ll be like tomorrow - I am hoping i’ll feel a lot better once i’ve got the 1st one over with though.
That’s 4 of us so far.
Along with EC and Doxetaxol I’m getting Zometa (which is new to me). I have had bone pain since my last chemo so am hoping this will support my bone health. The stats look v good.
The nurse also mentioned injecting myself (I’m guessing this is to support immune function). This is also new to me.
Finally, I’m going to ask for cold cap though last time I had epirubicin I started to shake and my teeth were chittering so I might not manage.
I start 1 week today. Eek.
I’m starting chemo next week. I’m not really sure what to expect. I’ll be getting EC and Paclitaxel. Eek!
I only had 1 FEC last time as the side effects I reported suggested it might’ve affected my heart. It’s hard to remember how I felt exactly.
I did lose my hair by week 4, shortly after my 2nd chemo. My white blood count dropped too low for the second dose and had to be delayed by a week.
I then went on to doxetaxol which I remember tolerating better. The first dose was tough and I remember feeling awful after a week with weird nerve sensations in my legs.
Overall the worst side effect for me was about mid cycle when my mouth felt like death. I don’t know how else to describe it. It just felt awful. However it always resolved and when it resolved it was instant. Literally overnight. Otherwise I just felt fragile. By week 3 Of each cycle I was beginning to feel better again. You do tend to get plenty of good days amongst the poorer ones.
Oh Marie that’s so useful to know that you had the same regime! I’m finding the unknown element of it really hard to deal with. Do you mind me asking what were the main side effects you had? X
That’s the same regime as I had last time so hopefully I can help. My advice would be to keep a record of your side effects as I found them to follow the same pattern almost to the day. Typically you will feel lowest in week 2 of the 3 week cycle so that might be the best time to receive support. I really didnt feel like cooking so maybe stock up on easy bits and pieces.
Ps I found Heinz cream of tomato soup the only thing I could tolerate mid cycle as the viscosity was soothing to my tongue. Strangely It was what I reached for during morning sickness with my youngest.
Hello. I wanted to hop on having just found out I’ll be starting chemo next Friday - eeek! I was diagnosed a couple of months ago and had a mastectomy the results of which revealed 110mm of DCIS and 14mm in invasive ductal. I am HEr2+ Er- so will be having 3 rounds of FEC and 3 rounds of doxetaxel and Herceptin. I’m 37 with 2 little girls so trying to figure out managing looking after them and going through chemo but I’ve got a great support network on my village. I also think I’m going to try cold capping to try to keep some of my hair, is anyone else? It will be great to have some people to go through this scary journey with. I’m feeling positive but pretty scared about what the next 18 months will hold xx
It’s nigh on impossible to get a curly wig. I did get one last time though which had ringlet type curls similar to my own hair. It had to be cut but I was initially comfortable with it.
Unfortunately it felt too big at the crown so I wore it with a hat and it got matted.
This time round I wanted to get a greying wig but couldn’t find any so got a auburny one but the colour is wrong so I’m going to order one I’ve seen online and hope for the best.
So sorry to read that you’re having to go through this again, but i’m sure your experience will be of help to myself & others on here in the coming months.
I got my prescription for an nhs wig today & some leaflets for 2 local salons that accept them, so i think i’ll book an appointment soon - i’m not too sure about wearing a wig as i think i’ll find it difficult to get anything close to my naturally curly hair, but i might as well give it a try, who knows, I may even find something completely different that suits me! I’ve already told my partner to get the clippers ready, i dont think i could bear to watch it fall out so i’d rather just shave it all off soon. Although I am worried my 2 year old won’t want to come near me afterwards!
I hope you have a good support network around you and are able to speak to your breast nurse about your worries & concerns too, mine has been such a big help. Big hugs, Becci x
You sound like a younger version of me.
I’m Also Grade 3 Er+, PR+ HER2 neg and starting on 6th August. Also getting EC x3 followed by Docetaxol x3.
Ive had a mastectomy so no radiotherapy this time but also getting Zometa and ultimately endocrine therapy. I too have curly hair. Lost it all during my last bout of chemo- not nice. Struggled to find a curly wig.
This time round I’m older (57) and am worried I won’t regain my hair as it has thinned considerably.
Im also anxious about how my body will cope with yet more chemo.
Hopefully we can support each other through the months ahead. I hope my previous experience will be of use.
Hi, I’m Becci, diagnosed back in May with a 44mm invasive ductal carcinoma stage 3, grade 3 Er+ PR+ HER- and 4 lymph nodes were positive too. I’ve had 2 surgeries - a lumpectomy & a full lymph node clearance on my left side, then another wide local excision for more breast tissue removal because the margins were not clear from the lumpectomy. My CT scan a few weeks ago came back clear, thank god (worst wait for results ever!) and i’m healing well from the surgery. Now for 8 rounds of chemotherapy, 4 of EC & 4 of Docetaxel over the next 6 months, followed by radiotherapy & hormone therapy.
I Originally thought i’d be starting chemo in July but i’ve got my date now and it’s the 7th of August (which incidentally is my eldest daughters birthday & 1 week away from my 40th) I’ve had my pre-assessment today and will be having my picc line put in this Thursday. Cold cap not an option for me at my hospital due to covid so currently struggling to come to terms with losing my curly hair. I’m trying to be as positive about it all as i possibly can be but there’s obviously times when i’m dreading whats ahead and i just wish it would all go away. Would love to chat to all of you going through this at the same time as me, i’m sure we’ll be able to support one another and hopefully have some laughs too along the way, love & hugs, Becci x
This thread is for anyone due to start chemotherapy in August 2020. 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.
Here is the BCN guide on chemo:
Here’s an excellent article for anyone concerned about hairloss. That’s pretty much everyone starting chemo: https://pinklotus.com/powerup/breastcancer101/chemo-hair-loss-and-menopause-hair-too/
Here are some apps which can help to keep you on track:
I finished my chemo over a year ago 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.
Hi Maire, thanks for starting the thread. Sorry your cancer came back but you’ll be in a good position to support others. Best wishes. X
I got my oncotype result yesterday. It was 40 which was a shock. Anyway starting chemo on 6th of August so thought I’d start this off.
I had chemo and Herceptin for a grade 2 tumour in 2012-13 so know what to expect but feel much more deflated this time round (grade 3, clear nodes, 2cm-Had mastectomy in June). I found the forum very helpful last time so hopefully we can build a useful and supportive thread this time as we head into winter with all that entails.