Im from over on the October 21 board. I hope you don't mind me dropping in. I've just had my third EC, I'm on day 6. I've found by day 7/8 I start to begin feeling better and am pretty much back to normal. So tomorrow I'm hoping to wake up feeling a bit more myself.
I can always tell when I'm back to normal as I get up and start cleaning 😂
Just checking in. I had my first cycle of EC on Tuesday, aside from very mild nausea I have felt nothing but wiped out. Literally no energy. I am on day 3 of the injections (this evening). I still feel lethargic and in a bit of a fog? Does this all sound normal?
I know everybody is different but will I start to improve each day now? Or should I expect some more worsened symptoms? My next cycle is 8/12.
Hope you are all well?
I was advised to get both jabs ASAP and had my covid 5 days before chemo and flu 10 days and the hospital and oncologist organised my covid booster as I was struggling to get it sorted , i also had a letter stating I will be offered another in a couple of months but I wasn't aware of that and will discuss with the Onc, your team will advise , I was told it was fine unless it was at that middle phase of chemo as it wouldn't work very well .
The rule of thumb is always check with your unit and don't rely on your vaccinations alone to protect you , we are vulnerable and last year taught me how vulnerable as I had to self isolate for months and months and believe me I am VERY carefull now , I get the heebie jeebies when I go anywhere crowded (we'll I just don't go) I wear a mask and sanitise hands , trolleys , baskets everywhere I go . Hope you get sorted and good luck
definitely will. Thanks Shi
Pigaletto ❤️Please ring your team Monday and tell them about flu jab you have had today and also discuss covid booster. Keep your team up to date always they will factor everything in and take things into consideration but you must keep them advised please ❤️💕💕✨✨Shi xx
I’ve been offered my COVID booster tomorrow morning. My first round of chemo starts Wednesday. Has anyone else had boost so close to chemo? Not sure if it’s safe at such short notice?
I have two teenagers and just being sensible with contact when in school uniform and when they first get in. They covid test twice a week which is reassuring. I heard vulnerability for the first 10 days, then it slowly improves to the next cycle. I’ve just had my second EC today. It is a reduced dose as they felt i was too fatigued with the full dose. The nursing team in the chemo suite will be more than happy to talk you through, have a list of questions and they can ease your mind before starting.
all the best
Personally I think denying your picc is a bit tough , as soon as you start chemo the risk of infection goes up and I don't think having a picc increases that , that much but every area is different I guess,
You are at your most vulnerable in the 2nd week thats when you white cells and neutrophils can fall , I found every cycle it got worse and I was given GCSF injections to boost these cells but that in itself has some side effects . Then you pick up , not quite to normal then the next cycle happens , ask them to explain your bloods I found that helpful , when I was very neutrophils I stayed in .
Basically kids get colds and that is a risk for you , do all the usual good ventilation , good hand , cough hygiene, encourage mask use , ask the kids to stay awY from people , friends with raging cos it's only for a short while , get your flu jab and covid vaccs and boosters, keep an eye on yourself any sign of a temp ring your unit straight away . Ring them if you are in anyway unsure .
I know its tough and hard when you have kids but they need gently to know the facts .
And welcome Charlotte glad you are here
💕 Good luck let us know how you get on
Hi, I'm jumping on as starting chemo on Wednesday. I'm Charlotte, 48, with two children (12 and 15) and live in Dorset. My cocktail will be FEC-T.
I asked for a PICC because I'm beginning to struggle with needles after the last months of being a pin cushion, but they said no. Not until they've had to try twice to get the cannula in will they consider the PICC due to higher risk of infection.
I am finding myself worrying most about children and exposure to the colds going round at school when I am vulnerable. I've always had a tendency for chest infections. We live in a small cottage and its a challenge to find space. Am I worrying unnecessarily or should I be thinking where would I stay if one of my family has a cold? And what is the danger zone in a 3 week cycle? Any advice appreciated. The chemo nurse info session is at 4pm the day before I go in at 9am....so I'm relying on this website as we get our heads around this at short notice.
Love to all x
Im on EC and was given the anti sickness and steroids to take one hour before the chemo appt.
Yes it does depend what you are on.
All the best for Friday, I have my second cycle. You will be amazed how quick the first was was over and done, I expected to be there hours, 45 mins. Any questions just ask.
It depends what you start on if its EC or FEC you get a stat dose on the day , sometimes you are given some to start a few hours before and for a few days after , don't worry they will sort you out . You can always check with your day unit .
I'm on Doce so the steroid regimen is different
B warned iv dexamethasone makes your bottom itch for 20 secs or so lol , it's a little weird
Good luck is it tomorrow 💕💕
Hi @KC57 , can I ask a little question?
I am due to start my first cycle this Friday but no one has mentioned steroids to me. Do they give the first dose on the day IV or should I have had a prescription?
Well done L Mitchell
1st one over and done will 👏 you get into a rhythm knowing good days and not so good
I'm on a no steroid day , I'm flushed (thank you doce) and tired bit emotional ,maybe because I can't taste my cup of tea ☹ god knows why but I remember before I was never far from tears , but showered and hair done , heartburn has settled puppy is in day care today so nice quiet day .
Well done everyone going through this and I hope all have a good day xx 💕💕
2 weeks since chemo cycle 1 and I am starting to feel normal. Get tired easy but feeling much more like myself so do some little bits and pieces to enjoy life and appreciate the good days. Thank you for your kind words and support while I was in a chemo bog. Hugs.
I guess we were a pretty stunned to find ourselves to be that 1 in 7 that gets breast cancer, and from that moment it's whirl wind of tests , more tests , information overload and then we are on a conveyer that dosent stop , so its hardly surprising you are feeling fragile and and emotional , it's a pretty shit time ! Especially as you are trying to hold it together for your family , but if you feel you can, you need them to know your vulnerable they are stronger then you realise and they will help you through this, this affects everyone around you , and that in itself can cause a cascade of other emotions.
Try to be gentle on yourself having cancer is tough and horrible but it's beatable the stats are very good for getting through this and you are so right that ,we have got this, it hasn't got us!!!!
So, I now have my plan for treatment. X3 of EC followed by X3 of Docetaxal, first session on Tuesday 😬. After all the waiting around, I will be glad to get started.
Hope you are all feeling ok.
Quick intro from me - 40 years old, diagnosed end of September with triple positive BC, had mastecomy with reconstruction just over 3wks ago. Recovering well from that. Met with surgeon yesterday for post op results, and in summary I will be having the full shebang with the treatment - due to start chemo this month, followed by lymph node clearance op (they found 2 positive lymph nodes when they did sentinel mode biopsy with mastectomy), followed by radiotherapy. Plus a year of hormone therapy, monthly injections to switch my ovaries off, plus 10yrs of estrogen blocking meds. Will be meeting with my oncologist in the next week or 2 for my chemo plan.
Head is spinning, so much to process! Emotionally/mentally I'm pretty fragile, feels like I'm grieving, but doing my best to hold it together for my kids and loved ones. It all feels so surreal.
You're all incredible women, and we will help each other through this. Stronger together. We have got this, it hasn't got us ❤ x
Thank you so much for this post, I found it really helpful.
The information I couldn't find before I started chemo was what it would be like on a day-to-day basis. I like to hear the nitty gritty, perhaps in preparation. I just had this image of me lying in bed feeling like hell all day every day, and yet here I am (admittedly only 4 days in!) feeling not bad (85%?) and largely getting on with things, albeit in a slow and gentle fashion. I know it is different for everyone and it will change, which is maybe why it's difficult to find this kind of information.
Agree about us getting through Xmas the best we can, and emerging into Spring renewed. Thanks again, it is good to hear from those on the other side of this, and have that encouragement. Trust you are doing well!
Thanks for checking in, I started on 8th. The process was ok, over by lunchtime, but by 8pm I'd never felt so bad in all my life! Blinding headache and very nauseous but didn't vomit. Went to bed and have been feeling surprisingly ok ever since. Feel a bit tired this morning, but I've been waking at 4am and struggling to get back to sleep, despite my Calm app sleep stories ...
So on the whole I am surprised/relieved that it's not at as awful as I feared, yet also very aware it's only Day 4 ! I'll take it for now in the spirit of enjoying the good days.
How are you doing?
Hope you're all doing ok ladies. I joined this forum in Nov 2020 as started chemo on 16th November last year. I wanted to just write a message to everyone to wish you all luck and to hopefully give you a positive post to read and show you support as obviously I know exactly how you're feeling right now.
In a nutshell, I was diagnosed last October - triple negative and then turned out to be BRCA 1 positive. I had EC until Christmas and switched to Carboplatin/Paclitaxel in the new year. Finished chemo in the April, had a double mastectomy with immediate reconstruction in the May and was soon after told that there was no evidence of cancer. I am yet to have my ovaries/Fallopian tubes removed but my surgeon has advised me to wait another year or so as it's preventative surgery rather than essential.
It's hard to quite comprehend how much has happened this last year but one thing I know is that you/we are stronger than you know. We're incredible in fact and you can all do this - we have no other choice, right? The people I met along the way were all on their own unique path but all amazing, strong and inspiring. I left the hospital every week full of gratitude for many things and I think remaining positive (despite feeling groggy and grim some days) this absolutely helped me.
I cold capped so if anyone has any questions about that, please let me know. If anyone has questions about the drugs and side effects etc of EC, Carboplatin/Paclitaxel, please let me know. One thing I'll say is, everyone responds differently. I had two surprisingly good cycles on EC and two not so easy. But, I never vomited and I never needed to stay in bed so I was much more fortunate than others. I recommend taking gaviscon tablets before bedtime and after an evening meal when on EC because sometimes when I had bad heartburn, it tricked me into thinking I felt sick when actually it was just heart burn. Some days I felt like a zombie and a heaviness in my sinuses, this is definitely a side effect of the EC. I can remember worrying about switching to Carboplatin in the New Year but actually I found it to be much easier to cope with and come February I was feeling relatively "normal" apart from energy being a little zapped on some days and tingling in my toes. Food-wise, plain foods and lemon flavoured things were always nicest when the chemo-mouth hit. Many of my favourite foods tasted pretty grim 2-4 days after each chemo round however I found that the day before chemo I could cook a nice meal and really appreciate the flavour. Monday nights in my house became "dinner date" night where my husband and I would cook a proper meal (beef brisket, Yorkshire pudding, potatoes and carrots for some reason was what I craved and enjoyed!).
Try and see each cycle as a new week and try not to fear it - very hard I know. I found each cycle with EC very different so just take each day at a time. Ask for help if you can and try and communicate how you're feeling so people can offer their support, listen or give you space. I think mentally I found the prospect of a New Year a real help, knowing that chemo would be finished by the Spring. You'll perhaps find that after the exhaustion of Christmas in general, come January you'll be raring to crack on and get to the end of treatment with a newfound energy.
I could write and write and write, but I just wanted to let you all know I'm thinking of you and that as hard as it is to imagine, this time next year (or even by next Summer) you will be in such a different place and mindset. The next 6 months are of course a huge challenge mentally and physically. But you will do it. And before you know it, you will be typing some message of encouragement to others just like I am (trying to do anyway).
Sending you lots of love, strength, hugs and support.
Think of you x
Well 1st chemo under the belt following PICC insertion , I know this is my second time around but its the first time on Docetaxel ( I had cyclo previously) so not too sure what to expect , the dreaded heartburn returned with vengeance however theygave me some lanzoprazole and it settled last night ,just feel a bit flushed and wibbly this morning , got some sleep but getting used to the PICC takes a few day but it is a godsend !!
So I hope all my fellow chemo warriors are OK, there are good days, there are bad days and there are the days when everything feels too much , but we keep going and going and we get through it , you develop a pattern and it can almost be comforting , knowing what to expect next and not so scary and you can plan a little more knowing when the tough days will be .
Talk to your nurses if you get any side effects don't suffer ,lots can be sorted out they are really really helpful.
For those waiting to start , remember everyone's journey is different , thats what this group is for to share experiences tips and hints and help dole out the big girl pants 😊 and 🦸♀️ capes .
Hope you are all ok 💕
did you start on 8th? How are you?
thanks for checking in. Feel less physically tired so trying to stop myself doing too much. Teenage son passed out at school yesterday so he is home too so having to keep him fed and watered.
haven’t ventured out yet.
how is everyone, I think someone was due to start on the 8th.
37 years old. ERPR+ her2- stage 2B IDC. I had a lumpectomy on October 20th. During surgery three lymph nodes were tested and two came back positive for cancer. Starting first chemo on November 12th. 4 rounds of AC and 4 rounds of T after that. Trying the penguin cold cap as well. Any advice helps. Thanks.
Thank you for your positive words. I’m just not use to this, need to find new ways to pass the time. Feeling less physically ill today so like you say small steps.
Thank you Kim,
It is very scary and I just want to get started right now, I don't think I can do another weekend, at least during the week things are happening. I have a PET_CT today and then kidney bloods tomorrow but no booking yet, frustrating but I guess I need to stay positive.
Good luck with your chemo starting this week x
just wanted you to know that you are not alone. I started my chemo end of august so I am jumping threads a bit here, but I couldn’t not respond to your post. You are not pathetic, you are a strong woman who is dealing with a whole load of shit at the moment that most people don’t really have a clue about. Please be kind to yourself, your body is being poisoned right now and when you feel rough it’s hard to stay positive. You will feel like you again I promise. For me it comes and goes and I have to work hard at it, but there are moments when I feel like myself again and from what I understand the moments become minutes and eventually hours and hopefully then days Even weeks.
Just want you to know that you’re not alone and you will get through this xxx
Hi @LMitchell, we are sorry to hear you are having a bad day and feeling this way. If you ever want to talk things through, or just need a listening ear, our breast care nurses are also available on our free phone Helpline 0808 800 6000. Our opening hours are Monday-Friday 9am to 4pm, and Saturdays 9am-1pm. We're sending you our warmest wishes.
I'm also TNBC I also had positive nodes , and I had the same treatment of EC then weekly pacliataxel and carboplatin its tough but doable , I opted for a PICC for the weekly pac and found that helped as I hate needles ,
TNBC can seem very scary but when you look at the stats carboplatin is making a big difference , I don't have Facebook but I understand there is a good group on there , I try to only look at either Macmillan info or breast cancer now info because there is a lot of old information about .
I hope you get your plan soon I was so much more settled when I knew what was happening
I am having a bad day. I just feel blurgh all the time. Sometimes knock me on my back others just yukky. I miss me. Also the family kinda thought I would be back to normal after a week and I’m far from it. I’m so impressed with all those whose bounce back, but I’m not one of those. I’m just a blob, I just don’t recognise myself. Everything I do and love has been taken away. I only have the hubby and teens at home for support and my being poorly is starting to wear thin with them all. Hubby is back to work tomorrow. He doesn’t have to work but prefers it to being bored at home with me. I just feel so alone, festering in my bed. I’m so pathetic 😔
sorry for the late response.. just getting used to navigation of the forum..
I’ve had a lumpectomy … but now waiting on my plan
will hopefully know this coming week…
hope you are doing well…
thank you for the positive vibes xx
Sorry that was you can get a limbo on prescription or on amazon for about £18 😊
Hi L Mitchell
I had a PICC previously it takes about 30 mins they numb your arm and ultrasound for the blood flow to identify a vein , its all quite painless though you feel some pressure when they attach the gizmo but it dosent hurt , they put a dressing over and sometimes cover it with a sleeve , you can buy cotton picc sleeves from annabandana on line or PICCME, they are easy to wash and protect the picc site
Annabandana are very good for chemo hats and wraps to , I never got on with my wig very well , but loved all the different coloured and styles of caps and wraps
And a PICC line is much better than needles all the time , you can also get a pres riptide for a plastic sleeve so you can get a shower called a LIMBO you can buy them on amazon but theyare about £1£
I had a PICC line put in ten days ago. The process made me feel a bit wobbly but I was back to normal next day. It is quite bruised, but no problems sleeping and I even managed gentle yoga with it. Let me know if you have a specific question / worry but the NHS and other sites go through the basics. I hate the thought of it in there for months but I will enjoy not having needles and cannula etc.
Hope you are doing well. I have my first chemo session Monday - FEC - and have been a bit stressed all week. I've taken two weeks off work from Monday so that has helped my stress level. 😀
you are similar to me with a diagnosis 15 June. I had surgery first, and now on EC chemo, first one last week.
feel free to ask anything. Be kind to yourself and be prepared to feel this bud all a blurt, I remember those first few days after diagnosis.
than for coming on board. Just having some other perspectives will be great. I think I’m first out the gate, first if 6 three week intervals EC was last Friday. The fatigue abs chemo brain is a killer, but luckily no other symptoms. Slept for three days then a couple less tired and clearer head but today back to sleep and head fog.
im having a picc line put in and no idea what to expect , any info would be appreciated.
I joined today to , waiting for your plan is a stressful time , but I guess with 3teenagers they keep you busy 😊 i found these groups invaluable for knowledge and support and keeping me sane , it does sounds like you will be a Nov starter so welcome x
Please can I join you?!
I was diagnosed 22/10/21 with grade 3, invasive ducal with lymph node involvement (ER+ PR+ HER2-) Ct scan confirms no spread and have an appointment with Oncologist on Wednesday to find out the plan. I am assuming and hoping that I will be a November starter too although no idea what drugs?!
I am 46, single Mum to 3 teenagers. Looking forward to chatting and sharing journeys.
my name is Kim and this is my second time on chemo , I was diagnosed triple negative breast cancer in 2019 and underwent neoadjuvent treatment and had lumpectomy and an axillary clearance then radiotherapy , unfortunately my breast cancer returned in July this year, I underwent left mastectomy and have been waiting to see if I could have the new immunotherapy instead of chemo but I do not have the PDL-1 protein so it’s back to adjuvant chemo which I start next week .
I was unsure about joining a group as I didn’t want to scare anyone as I have had a recurrence , however I have been through chemo before , got the T shirt kind of thing and I picked up so many helpful tips from my November 19 starter group that I thought I may be able to support others going through this for the first time .
so feel from to ask me any questions , my chemo was also affected by lockdown in 2020 , it influenced some of the decisions I made at that time but we have learnt to live with covid now and I am marginally less scared .
so I start chemo on the 10th November , PICC insertion first them treatment later that day , it feels a big de ja vu lol but then I have been here before 😊👋
@bec39 TBNC can be a very scary diagnosis. I highly recommend the dedicated FB forum: Triple Negative Breast Cancer UK and Ireland (TNBC) support.
They have helped me enormously. Lots of very supportive and extremely informed members.
I hope it all works out for you. Best wishes and hugs.
So this is a group no one wants to join but I'm hoping we can support each other through this.
I'm 39 with 2 young children and have triple negative... Hopefully starting chemo next week although haven't heard anything yet about being booked in etc. Signed my forms on Wednesday, how long did you all have to wait?
Mine has spread to lymphs underarm and on Wednesday they said also to my clavicle nodes so I'm just so wanting to get started as I'm worried how quickly it is spreading...
I'm having EC followed by weekly paxlitacel and carboplatin...
I hope everyone who has already started treatment is coping ok X
So that is what they mean by fatigue….😴
I have lost three days of my life in a chemo induced sleeping 💤 beauty haze. This morning woke up and found a little of myself and the urge to disinfect the kitchen 🤔.
luckily no other aches and pains, sickness so think I got off lightly. I think next time I just need to embrace nothingness. I think that will be better for my head. The more I fought it the more tired I got.
how’s you all?
How ya doing? Strength picking up? Xx
Welcome. Everyone on here is lovely and we are always here. Chemo is a big step but we will all get through it. Ask anything you want to know and remember to be kind to yourself.
keep us posted with progress abs we will keep you going.
Hi everyone. I was diagnosed 9/27/21 with breast cancer. Chemo starts late next week. Had a double mastectomy 3 weeks ago. Stage 1 and her2+ With clean lymph nodes. Taxol weekly for 12 weeks along with herceptin. Then herceptin every three weeks for a total of a year. Very nervous about chemo coming up. Anyone else starting a similar treatment plan?
Think the fatigue has kicked in. Feel as weak as a day old kitten 🐈⬛. Body just wants to lie down. Eating well, no sickness but just blurgh.
I had a PICC line put in on Friday, and though I haven't been given a date yet, I'm pretty sure my first chemo session will be Nov 8th. I'm nervous ! Will be good to connect on here. Am being treated in Hereford.
Great to have a positive attitude - it will help you so much. I've just done my second EC cycle, it's been hard but you manage.
Hi everyone...hope you are all doing well.
I am starting chemo on 19th November, it's really quite frightening!
I've had a bumpy 3 months, which included 3 surgeries, mastectomy (which identified 3 infected nodes) then the removal of an infected expander and axillary clearance (no further nodes were infected thankfully.)
Tomorrow I am having a port fitted as I also have rubbish veins.
I was given the option of the Optima trial but chose against it. I walked myself through the scenario of getting to the point where they may say that I don't need chemo and how I would feel about it. My cancer has already shown it can spread by getting to the nodes and we don't know for sure if any of these little cancer cells have travelled and settled in another point. I have been told the chemo will mop up any of these stray cells.
I also decided against the cold cap. My Oncologist is not a fan and told me I will still lose hair. I am going to own this and battle through as a bald warrior!
Onwards and upwards ladies xx