First EC cycle and GCSF jab
Hey, had my first chemo on Thurs (EC) and then did GCSF yesterday and feel like death today. Oncologist said it’s normal but holy hell, I kept moving on Day 1 and 2 and today I can only manage to take my pills on time and go to the loo and brush my teeth. That is it. The GCSF jab seems to have flared every joint in my whole body.
Expecting tomorrow to feel bad because I won’t have steroids on Day 4 and then hoping to actually want to eat something on Day 5 maybe as have managed two bags of crisps and a few noodles in the last 3 days and that’s it.
Am focussed on the non-negotiable of drinking 3L of water and taking meds on time and having enough in my stomach to take the steroids. That’s really all I can manage. To achieve anything else would be a miracle.
Would love to know if this is normal for others (I appreciate everyone experiences it differently!). I’m a strong 42 year old with 3 kids and I’ve never been physically weak so this is really tough to acclimatise to. I’m ER+(8/8), invasive ductal carcinoma HER2-ve, 4.5 weeks on from a full mastectomy and node clearance (7 nodes positive) with two small (under 4cm tumoursin left breast). Had port installed under GA on Weds, the day before my chemo and had the seroma drained at the same time so my body has been hit hard this week in every way.
Thanks
Sarah x
Sorry that you are feeling so lousy at the moment.
I can relate to how you feel. Nine or 10 hours after my 1st injection I get swollen and tender glands from neck to waist. I inject around lunchtime so it kicks in at bedtime. Painkillers and bed then.
The glandular pain for me lasts about 48 hours before it starts to ease.
I’ve moved onto Docetaxel now which is giving me joint pain now. Still have to inject unfortunately x
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hi Sarah @swk1981
I had my 1st EC on 11 March and like you was ok on day 1 and 2. Day 3 was tough could not eat, sleep or do much. Day 4 was my worst day. It became gradually better so don’t worry. The combination chemo plus steroids etc is a lot to take in. I was worried I would be sick after stopping the steroids and anti nausea tablets but I was not! It took me quite a few days to get some sleep . The dizziness is constant for me even today. Now trying to prepare mentally for round 2 on Monday.
Take it slowly and drink a lot it helps. Clems have been a great help for me as my taste has deteriorated and even if i could not eat much on the first week I made aure I had vitamins with broccoli and sweet potato.
You will feel better soon
Hugs
Marion
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Hi
I had my first EC last Friday ( day 8 today). I felt terrible until about the Wednesday and gradually have been able to do more. Usually fit and active and never spent this much time on the settee. I’ve found I could eat little pots of ice cream, quavers, noodles ,porridge . Am now eating loads better and feel much better , managed a walk last 2 days. I’ve kept a journal of how I was feeling each day so I could see the improvements. Hope you feel better each day, it’s so hard not being able to do what you’d normally do xx
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I’ve also used my Cancer Treatment Book they gave me to journal it as I find the red amber green thing to be too changeable. Day 1 feels like a wonderful day compared to this today. The GCSF really has been the most hideous part but then it is so necessary that I won’t complain!
Haven’t managed to eat and cried looking in the mirror as I can see myself fading away. Next will be my hair going and then I’m scared about how much I’ll scare the kids. They’re old enough to handle it but it will be hard. I’m their tough momma who fixes everything. I’m not weak. It’s a lot for them to get used to.
Cancer is such a bitch.
They’ve given me 10 days of Domperidone. I’ve emailled today and asked for Morphine as I hate the codeine. I like morphine as it takes the edge off better once a day but I can then manage my pain myself easier whereas I find the codeine too long lasting. I’ve had so much this week with seroma drainage, port operation under GA and the chemo that I am just in so much other pain and can’t get comfy.
My days sound exactly like yours though so I expect tomorrow to be bad and hopefully by Monday I should be on the upward curve again and grateful to feel a bit more human. Drank some chocolate milk tonight which felt like the ultimate victory. X
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Yay for chocolate milk😊…chocolate has a horrid after taste for me which feels like the ultimate kick in the teeth…
Hope the domperidone helps you and that you find tomorrow is a brighter day xx
So sorry you are feeling like that. I think everyone reacts differently, but EC knocked me for six and I had hardly any ‘good days’, particularly given that I was on an accelerated regime which meant I had it every two weeks rather than three. I had so many side effects and lost the ability to sleep and eat solid food. I took those Nourish drinks which are a meal replacement just to get my calories up. I found that when I could walk that helped but many days I was bed bound. I just wanted to reassure you that it is normal - just a really tough chemo. I had Docetaxel and Carboplatin afterwards and found them 100 times easier than EC. All the best - just grit your teeth and know that it will get better eventually and do what you can to get some calories in. X
Hey
Sorry you are at this point. I am two years out and can still remember how awful EC was. I found docetaxal much easier so hopefully you will too. Also found that the first round was the worst as it was just such a shock. You will start to get pockets where you feel normal again after a few days and then you feel more yourself for the last 10 days or so of the round, like fairly normal really. It’s such a slog! But you’ll be through it all by end of summer. It helps to go outside a bit when you can I found (if the weather is nice) x
Hi Sarah, hang in there! I had my first cycle at the end of January and my birthday 5 days later. I was a sobbing mess that entire weekend. Borderline fever for 2 days, too. I did recover from about day 7 or 8. But it does do a number on you. I lost about 6kg over the first 3 weeks, since I could not bring myself to eat. But my oncologist told me that the first injection is the worst, subsequent ones were a lot easier, truly.
Re hair, have it cut short (25mm or so) and DON’T brush it! But it may then last a bit longer. It won’t start to fall out for another 2 or 3 weeks anyway. I had cut my hair, but made the mistake of brushing it. That removed a large chunk of hair right at the top, and I was “Nope, not walking around with a huge gap in my hair” so I shaved it. I reckon it would have kept a little longer if I hadn’t touched it. I am now planning on doing a Last Airbender Cosplay at some stage…
I won’t say it gets easier, and it is different for everyone, but at least it gets more ‘normal’ and it is only 4 rounds, yes? The third week I am usually 95% ok. Week 1, I can cope on day 2 and 3, going down all the way, then 4-5 days of being very meh, and then coming back up during the second week.
All the best! Xx
Hi
This is my first time post on this forum, I had my first EC on Friday 22nd March, and I’ve struggled with nausea, dizziness and headaches but worst Is the random not being able to swallow food, sometimes I can then sometimes I can’t, what’s that all about??
I’ve also taken my steroids wrong instead of two twice a day I’ve been taking one twice a day, definitely got chemo brain fog and felt like I obviously didn’t take all the information in, rang the hospital today to check it’s ok, they said just to continue with 2x2 a day now till they’ve gone 
would have been finished today if I’d took them properly
I’ve tried to go for a little walk each day which I think definitely helps so hoping weather permits me carrying on for the rest of the week, sorry for the rambling, never done anything like this before, hope everyone is as well as they can be and I can support any way I can xx
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Hello lovely,
I started EC the day before you so we’ll be on the same track! How many cycles and what are you having?
Maybe buy a pill box for the next cycle and pop a paper note in to remind you of your GCSF injection too in the box. I struggled to know what I’d taken and hadn’t this time because it was different to the operation. My brain didn’t stop working after the mastectomy but it has with chemo!
So I’m a day ahead and, if my port wasn’t rubbing against my collarbone, then I’d be feeling a million times better than I did yesterday. Still weak and I also get the random throat closure thing too. More so later in the day than earlier. Weird.
You sound like you’ve coped really well with the first round and with only half the amount of steroids you would have had so you’re my hero for today!
Sarah x
@elle16
Well done you for getting to this stage.
I fell asleep on the couch the night of first EC, woke up around 9pm feeling dizzy/weird so decided to go to bed. On the way I fainted, banged my head on the wall and ended up in ED for next 24 hours. Not something I recommend.
I used to write the times of all my meds in a diary, whilst at hospital having treatment-checking with staff if not sure then every morning set the timer on my phone for that day-brain definitely wouldn’t have remembered on its own.
I also used to write how I felt every day so I could see improvement, if any ongoing issues but also get an idea of how I might feel on cycle 2 and 3. The first 7-8 days I felt awful, but knew once I got there, I was on upward trend.
Sending lots of hugs for next cycles
Laura
Thank you both for your replies, I’m completing a diary with symptoms, meds etc but think I just read them wrong on top of not taking in all the info I will finish the steroids today , I’m hoping it means I might be a bit better next time when I take them correctly, 
I’m doing 3 x ec and then 3 x docetaxel, I struggled to sleep last night and was up at 5 this morning but I’ve been like that for the past few days, don’t feel too bad this morning .
It sounds like you’ve both had awful times, Laura it must of been very scary passing out, hope you are recovering well now, and Sarah your first week sounded terrible,
But Thank you Sarah for your encouragement that’s really given me a boost, think we just have to keep ploughing forwards and just hope everything goes smoothly for us all and look forward to better times ahead xx
Also yes I have a timer on my phone for the injections , one for me to take out the fridge and one to inject , not enjoying those
Lots of love x
Hi
I had the same issues with swallowing certain types of food. Really bad the first day and for three days after. I looked up the akynzeo anti sickness tablet and it says it’s a rare side effect of that. I’m going to have a chat with the consultant about it before my next one as it felt quite scary. I also felt really dizzy for the first few days as well. Hope you start to feel better over the coming days x
I’m taking domperidone for sickness, wonder if that’s got similar side effects, I was starting to feel like it was physiological as it’s not all the time, but my symptoms sound very similar to yours , I’m very dizzy like I’ve been on a fair ride, but touch wood not been too bad today and I haven’t took the anti sickness tablet but I have had a queezy drop , some sweets I’d read about on here to help the sickness that I’ve purchased from Amazon , going to try just with those today and see if it improves,
I’m at the hospital tea time for my picc line flush so might mention it, hope you have a good day 
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I have given up assigning side effects to specific drugs, in particular since many overlap and the answer I am getting when I ask nurses or doctors is usually “that’s the chemotherapy”. Since I am going for my last EC on Tuesday, I am focussing on just staying the course now.
elle, check with your oncology team if you are struggling with the steroids, I have trouble with one 4mg a day, I could not imagine 2x (unless they are 2mg only.) But steroids are naturally highest early in the morning, so taking them on 2 different times during the day will affect your body’s response as well. If you can’t sleep, ask what you can do about it, incl changing the schedule.
Best of luck everyone!
Hi @caitlinn
Well done for getting to your final EC hope you are doing well, I’ve finished my steroids yesterday and although I’m well today I have been shattered, but hoping now the first week is over that means the worst is over and I’m looking forward to having the next 2 weeks with no symptoms. Did you find the 2nd 2 weeks were near normal following your EC? What is the next chemo for you? And also I’ve read that each time the side effects get worse, did you find this ? Sorry for all the questions, I’m just trying to prepare a little
Lots of love x
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Hello @isitreallyme I hope you don’t mind me jumping onto your thread, but I am due to do my first injection tomorrow (day 3 of EC) and hadn’t thought about best timing for that. Have you any advice about what time of day might work, from your experience?
Thank you, it’s so helpful to read people’s experiences to try and prepare for my own x
Hi @altoan
How are you feeling after your first few days? Hope you are well?