Hi @elle16 So far I’m ok. Didn’t sleep very well last night, bit of indigestion, drymouth etc but nothing terrible (as yet?) I’m getting anxious about starting (and doing) the injections from today onwards…. Wonder if this is the calm before the storm? 
How are you doing?
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Hi. It’s not actually my thread, and of course I don’t mind you asking. That’s what we’re all here for x
I hope your 1st chemo went as well as can be expected for you and there were no complications.
I discovered that the glandular pain for me started at bed time when I injected around lunchtime, so I could take painkillers and go to bed. The 1st 2 chemo I did them in the morning and I found the glandular pain started at tea time.
This is my personal experience, and wouldn’t necessarily be the same for everyone. I don’t think everyone gets the same pain. I have for all 5 sessions of EC and Docetaxel I’ve had so far.
I hope everything goes smoothly for you x
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Hi @elle16,
Obviously I’m a day ahead of you and honestly the tiredness is still crippling. Yesterday (Day 8) was the first day that my legs weren’t shaking constantly. Don’t underestimate the weakness as I’ve woken today with a blister between my toes from the chemo. Your immunity is shot to pieces right now so literally only use 60% of the energy you think you have or you’ll pay for it tomorrow. I think I’ve been so keen to contribute and function that I’m burning out each day and paying for it the next.
My friend said that her 2nd EC was worse than her 1st as it’s cumulative. I’m having to have my port removed next week as it’s been hitting my brachial nerve since it went in so I’m moving to a PICC line instead. So disappointed but hoping 2nd EC feels more bearable since I won’t be in 24/7 pain from my port.
Sarah x
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I did mine at about 10pm but on Day 2 (mine is just one slow release injection that lasts 5 days). The bone pain was the entire next day and a little beyond. I will do it a bit earlier (around 6pm) next time to try and condense the pain into just one day and not let it spill into Day 4. X
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Hi all,
I’ve tried to do my injections about 1.30pm but like I’ve mentioned before my brain fog is awful, so on one occasion I took out it out the fridge but then realised I’d put it back in the fridge instead of using it , thought I’d lost it then realised it was back in the fridge so it was later that day 
( my memory and concentration has been ridiculous)
Think I’ve been lucky so far that I’ve not experienced any bone pains or aches, all my side effects have mainly been headaches, nausea, dizzy, tiredness and insomnia at night, not being able to swallow and strange taste in my mouth,
I’m on day 7 today and really do feel a lot better but have a headache I just can’t shift but am determined to try to have a near normal day with my family , maybe I will crash and burn by tea time but hey ho, trying to make the most of feeling ok,
@altoan i think you are doing really well, and just want to reassure you the injection wasn’t painful to do once you get over the thought of doing it 
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@swk1981
The port sounds like it’s been awful, glad they will be changing you to a picc line and hope this will really help you, it’s hard enough without the extra issues you’ve been having so I really hope that works out for you,
My picc line has been fine but a little tender since the line flushed on Wednesday but I think it might just be how the dressing is just pressing on some of the plastic bits,
Hope you start to feel better really soon
@elle16 Ive had the headache too. I found Anadin to work brilliantly for it! I’ve still got it today and massive skin tenderness on my scalp, hands and feet. When will it end? It’s just one thing after another 
xx
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Thank you, you were right, I was anticipating some horrible searing pain when instead it was (as they always say) a small scratch- or a little prick! 
and I didn’t feel the liquid going in as someone had warned me I might.
So far, so good and I’ve been out for a walk today too!
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Brilliant @altoan, glad it wasn’t too bad for you, definitely thinking about it was worse than actually doing it for me, and really good you’ve been for a walk, I’m still trying to shake off headache but think I might try a walk if the weather stays dry, maybe a bit of fresh air will shake it off 
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Elle16 please ring your team to check you’ve not started with oral thrush as you might be entering your nadir phase it’ll need tablets fluconzole and don’t get fobbed off with drops 
Shi xx
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Thanks @Shi
That could make sense as my mouth is dry and horrible taste, I’ve got corsodyl so will try that and ring if I’m no better, is it usual to have headache with oral thrush? X
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It could be. Are you on a 3 week cycle? It’s always best to ring your team just to check all ok, chemo can also cause uti’s with no temperature too. Have you been monitoring your temperature? I found doing a graph chart with days and times and which week of my cycle I was on helped me keep track of taking tablets and doing tge jabs and I also recorded my temperature there too throughout the day so if I rang my team I could relay as much info to them as possible, gives you bit of control over something and also found it very useful for when chemo brain kicked in Shi xx
@Shi
Yes monitoring my temperature and that’s been fine and I’m also writing down all my symptoms and any medication I take every day, actually feeling really well today apart from headache , no sore throat and I’ve checked my tongue and it looks pretty clear, I’ve just been for a walk and it didn’t wear me out so that’s good, I’ve only really got an emergency number so not sure who to ring with minor symptoms,
I’m going to have a suck on a mint and drink some more water. Thank you for all your advice it’s much appreciated, and yes I’m on a 3 weekly cycle
Hope you are well xx
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For all of my 3 EC I had horrible taste, like old socks. I would swill my mouth with salt water several times a day.
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It’s your rapid response card always ring that it gets you through to your combined day unit team glad you are feeling ok please just keep vigilant your neutrophils are entering the nadir phase your team would rather you be vigilant and ring and check that’s what they want you to do so they can get you safe through chemo Shi xx
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Quick update, headaches gone 
so much better today, feel like myself apart from strange taste, thank you guys for all your advice yesterday, reassuring to know you are there with help and advice . Think today is going to be a good day!! Hope you all have a little bit of sunshine today and sending everyone lots of love and best wishes
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Elle16 
glad your feeling much better Shi xx
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Good morning! You’ve been busy! Happy Easter, everyone! Elle and Sarah, sorry to hear about the ups and downs, but unfortunately they are part and parcel.
Re feeling better, it has varied for me. First chemo was the quickest to recover, chemo 2 was the worst and chemo 3 was long in experience, but overall not too bad. Chemo 4 to follow next week…
I think some effects are cumulative, but which ones, I am not sure. I have increasingly a numb feeling in my left foot (only) on day 8-12. I only really noticed it this last round and that is why you write EVERYTHING down! Even the smallest hint of “out of order” feeling. I also think taste and dry mouth gets worse. I have trouble with my port scar, which I think may be related to the repeated effects on cell regeneration. The scar looked really good after the first 3 weeks but is now increasingly pulling in, getting itchy and red again. I was putting my pain and discomfort down to the weight of my breast and the “pull” when I move, so I wore a bra day and night. But that sucks. I have to talk to the nurse, maybe they have some suggestions.
I am very sorry that you have to have the port removed again, Sarah. Obviously it ia good for you, but I would be cross to know that this was all for nothing. I didn’t like to get it put in, at least it should stay the distance.
Re taste and mouth, I drank/drink a lot of water with ice cubes during the chemo. While I recover, I can only drink water with orange juice (1/3), or I can’t drink at all. In the first and second week, I have to force myself to drink to the point of setting alarms on my phone. I also gargle with some salt water preemptively during the first week, I had oral thrush in my first EC chemo round. Oil of oregano (1 drop in a glass of water) also helps.
I made a point of going outside every day, at least for 10min. We had to cut the hedge on Feb 29th, and I was feeling awful, but I went outside and picked up tiny branches. Took me an age, and I was exhausted, but felt a lot better for having done it. Now that the weather is getting a bit better, it’s easier.
And lastly, I gave in an took omeprazole (which I hate) during the first week, which I hate, but it helped with the gas, pressure and general gastrointestinal issues. I also sleep with a wedge pillow in the first week, to keep my head elevated. Maybe some of this will help you, too.
From about the middle of the second week I am 95-100% ok again. Apart from being bald, I am good. Skin is getting drier, even if in my case, it is still utterly soft and amazing (did I mention I have a slight psoriasis, that has completely disappeared? Never had skin like this in my life.) But I can understand others who report dry and cracked skin. Nail Issues, I understand, are more common with Paclitaxel. I will find out.
I also had headaches, but those got less and less. I was quite hyper under the steroids, and splitting them over 2 days has helped. Feeling weak and wobbly, dizzy etc, is part of fatigue, and will go away when your body recovers.
All the best! Xx
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Happy Easter!
How funny about your psoriasis! At least there’s one upside for you!
I don’t think my Chemo 1 would have been the end of the world if it wasn’t for the pain from the port but I’m not expecting great things for Chemo 2. I’m obviously fighting something on Day 11 as temp hovering at 37.4 and I’m sneezing but am taking it very easy to keep it below 37.5 and avoid having to call the hospital.
I’ve found kéfir seems to help my guts over and above everything else but then I’ve also been forced to take more opiates than I wanted due to the port. I’ve actually had stronger and more pain relief for the crappy port than I did for the mastectomy and node clearance which does piss me off but it’s not their fault. One nurse said she’s only ever known this happen in 3 ports before. I can’t face another so will just go with a PICC line. Realistically I harbour no desire to go swimming before July 4th when chemo finishes. I can barely go for a walk so swimming would be a bit ambitious. I laughed when the consultant tried to encourage another port on the basis that people like it to be able to still go to the gym and go swimming. I’m exhausted if i hoover the dining room and kitchen right now! 
My amazing husband saved the day and did our annual letter hunt for the kids and their friends around our farm so all things are normal for them and it’s lovely hearing and seeing them all running around having fun as they should. They’ve all been epic human beings and accepted the dialled down fun levels so graciously since diagnosis. I thought I’d ruined my kids lives with cancer but I do think there are upsides for them in being less egocentric and having compassion for others. I think a part of them loves that I’m off work and available for movie time anytime they want.
Anyway, ramble over. I hope everyone is having a lovely Easter as best they can. I felt a real pressure to ‘make it special’ and then a disappointment that I can’t. The ‘special occasion’ pressure is real with cancer and very unhelpful! X
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