Just a quick reminder to please keep safe everyone these threads are open to the world so any meet ups please use the pm function on here 
Shi xx
1 Like
Hey everyone. So I had first cycle of EC chemo on Friday. I did use the cold cap and it is tough, but just about bearable. I certainly was ready for it to be removed. Definitely will be taking a neck pillow next time and a weighted eye cushion. I’ve spent all weekend pretty much in bed. Very lethargic and tired and struggling to sleep too. Dry mouth - suggestions anyone? Got a headache which doesn’t want to shift too, mainly behind eyes. Thinking it might by sinus related. I admit having the PICC already to connect up, was better and I am getting used to it but the PICC cover just rolls down my arm? I’m attempting work today, I WFH, but I feel like my brain just isn’t working very well. Chemo fog? Hope everyone else is doing as well as they can be. Any suggestions or advice always welcome!! x
5 Likes
Hi @idcand49 for my second round, the nurse changed my caps to small/small. She thought snug was better. Could you ask to give that a try?
2 Likes
Hi @kms1
Does your PICC cover tube have a few stripes on it? They changed my tube -originally yellow stripes- to blue stripes. It’s tighter and doesn’t move around at all.
It would be worth asking.
X
3 Likes
Hi @cf640 at my next bloods I will ask for a refit (my hair will have started shedding by then too 🫨6
@kms1 i felt awful on the first day I had no steroids (Sat). My nausea meds were not strong enough (I felt sick even with the steroids) so asking for a review for the next cycle. It’s knocked me back which is annoying esp with this horrible metal taste I can’t get rid of. I’m off to my GP who wants to see my tongue /mouth before prescribing me anything. The one time I would love a tel triage they call me in!
I’ve managed a few hrs of work mainlining kefir which is helping my spaced out feeling.
And tbh my worse symptom is the nausea / taste so if I can figure out a way mitigate it, I can hopefully do more.
Getting headaches but think from the GSF injections.
Hope everyone is having a good start to the week. My teens finish this week so will have more company - hooray xx
5 Likes
Hi
I am new to this forum - only just found it!
Diagnosed beginning of June with two tumours in my breast and spead to my lymph glands.
Had PICC line fitted today, start chemo on Wednesday 17th (assuming my bloods are OK - I already got called back in)
Opted for the cold cap
Cant just recall the drugs from the top of my head but got warned my worst day will be day 5.
5 Likes
@humbug
Good luck with your first session and welcome to the group! Let us know how it goes.
X
2 Likes
I had my first EC chemo last Thursday. Tired and bit headache but not too bad Friday and felt great on Saturday. Had first of 7 Filgrastrim injections on Saturday night. Woke up Sunday feeling exhausted, headache all day that I couldn’t shift even with paracetamol. Same again today. Got no energy and awful headache. Just wondered if anyone else felt same and if it’s the chemo, the injection or both. Really hoping I wake up tomorrow with some energy and no bad head.
1 Like
Welcome @humbug hope Wed goes well.
@angieb1 I had my first cycle too on Thur but felt dreadful from the onset (nausea was not under control) and Sat was the worst!
But have been getting better each day so diff from you.
I’m also on the jabs & headaches definitely coincide with that.
V hard to know what is causing which side effect.
Hope you get a restful evening
@Shi i got the thrush tabs (not the drops) thx for this tip
4 Likes
@idcand49 Thank you. I suppose it’s difficult as everyone feels so different and gets different symptoms and side effects. Good to hear you’ve been getting better each day though. I’m hoping I’ll start to feel better tomorrow 
1 Like
Angieb1 please ring your team and check with them in the morning just to be sure all ok, don’t battle through thinking oh this must be chemo, anything do ring your team they appreciate you being vigilant and checking with them it helps them get you safely through I was on the phone like it was tge bat phone during chemo checking everything and my team didn’t mind. I once had burning wee but no temp and they got me in, it was an infection and needed antibiotics. So please do always ring your team and check about anything Shi xx
2 Likes
glad you got the fluconzole ask for them in your goody bag each round too so you can use as soon as it starts each round as it may or may not happen but saves faffing if you’ve got them at the ready Shi xx
2 Likes
I have been prescribed gelcair for my dry sore mouth and I bought biotene gel from Amazon that helps but if it persists call the nurses you don’t want it to turn into something more
1 Like
@Shi Thank you. If I feel as bad in the morning I will get in touch with my nurse. I don’t like to be a nuisance especially if it is expected side effects but have just felt floored the last few days. x
2 Likes
So I must admit I have been quiet as feeling a bit like a fraud I have had no symptoms per say apart from dry sore mouth and throat but I have meds now in place I have managed to get out and about and done 8 hours of work today apart from a little tired I would not think poison is in my body then only tell tail is I have started to shed my hair not quite where I expected to loose it 1st but I am definitely losing it. Good luck to those starting this week. Take care all and stay strong we got this xxxx
3 Likes
I used pineapple to help with both dry mouth and the metallic taste. You can use either fresh or tinned pineapple. Put it in a blender then put the pulp/juice into ice cube trays and freeze. Suck the cubes whenever you have metallic taste or dry mouth. Pineapple contains an enzyme that supports mouth health. It worked for me so fingers crossed it will for you too.
3 Likes
Hi @lilo1973 I’m the same. Feeling lucky that ive not been bad after my 1st chemo 10 days ago. But also a bit guilty as so many feeling crap. Ive had headaches but not that bad. My worst day was one week later and I felt light headed most of the day but not that bad as l could keep my physio appointment. I am well aware it may hit me after my second session. Sorry so many of you are having it rough 
@kms1 I get dry mouth but found mouth wash especially before bed keeps my mouth a bit fresher so not as dry. X
3 Likes
please just be aware of your nadir phase during your cycles which is when your neutrophils will be at their lowest your team won’t think you are a pest they will be grateful you are being vigilant and checking with them they have seen it all before and what you night think is just a se during chemo could be something that they might just want to take a look at to keep you safe during chemo Shi xx
4 Likes
I am going in to have my port inserted today.
Feeling a little anxious.
I had a great few days away with family, and home now. No major side effects- except sore throat.
I’m worried I’m getting a UTI. Symptoms aren’t bad.
Oh and my little toenail fell off? Not sure if connected. It just pealed off and so cut it. No hair loss noted yet.
I have the 3rd session of weekly chemo on Thursday. Completing my first cycle.
Xx
1 Like
Have you tried Polybalm for the nail? It’s quite punchy price wise but meant to help
“chemo nails” (which I never knew was a thing lol, what doesn’t chemo change?)
I’ve bought it and hope it saves mine.
X
1 Like