Thanks that’s reassuring- as I had no other symptoms I thought it was nothing serious - just part of the ‘new normal’ 
3 Likes
Have you shown your rapid response card you should be treated within the hour Rty, start making noises about if anything happens they will be held accountable for negligence 
Shi xx
2 Likes
Few of us had aunt sally cheeks on docetaxol, it’s always best to check with your unit quick 2 minute phone call. I was on the rapid response number like the bat phone during chemo, your team don’t mind they are pleased you are being vigilant Shi xx
3 Likes
Yes I did but the unhelpful receptionist said I wasn’t there for suspected sepsis 
. Im afraid I was rather short with her and said I was leaving if I wasn’t seen within an hour and would be putting a complain in ….
as it happens I was called in after half an hour 
x
3 Likes
First few days after each chemo it seems to be my personal hotline 
1 Like
Glad you were seen quickly 
always be firm when you need to be, and ask to see someone more senior and if you are spoken to in a way that is unacceptable say don’t you talk to me like that. They have a duty of care to you and if their negligence results in anything then they are to be held accountable and do remind them of that. No one liked to feel like the complaining person but you have to be firm to be heard sometimes, use it as I’m sure you do when needed you need to keep yourself safe 
Shi xx
2 Likes
@Shi Thankfully when I saw the nurse practioner she understood I was anxious not to be in the department long … tbf …I was probably done and dusted well within the hour so I think I was called in before other people x
3 Likes
Hi everyone, I hope you are all surviving. I’ve been lying low on this group for a while as I think I just wanted to feel ‘normal’ for a while. And was in a little denial stage. Partly as the second cycle had been so much better than the first as they reduced my dose by 20%. But I’ve hit a big emotional wall. Just in the middle of my third cycle. It’s just not realistic to pretend things are ok when they just are very not. I am so very tired of the pat response to friends and families daily text check ins; ‘All so much more manageable since they reduced my dose after the first cycle. I am just getting on with it. Three down, 5 to go. Just a year of my life. I’m so lucky it was caught early and treatable. etc etc’! Anyone else churning out those lines whilst actually feeling really sorry for yourself? As well as having dark thoughts about it coming back in the future and how many years have I really got left (I’m HER2+ as well as hormone pos, and have only just worked out that this means it is more likely to come back/its more aggressive - even though I also read last that 90% of HER2+ now doesn’t come back).
I think I’ve just hit another shockwave of I CANNOT BELIEVE I’VE GOT CANCER! People around me don’t want to hear my dark thoughts or my self pity so I keep it to myself. But last few days have really got me down. I keep crying. The steroids lull me into a false sense of security for the first few days, and then I seem to have a crash on day 4 and get so disappointed to still be feeling so awful on day 6/7. I’m day 6 today of third EC cycle. I feel like I have three dead squirrels decaying in my mouth and everything tastes disgusting. My head is like I have a constant vice round it. And I’m just exhausted and depressed. Hoping to be feeling ok for Christmas day, but also just want to hide away in a hole. Finding it exhausting trying to be upbeat in front of my children (23, 18 and 16). Far from feeling ‘only 5 more to go’, I actually feel ‘FIVE MORE TO GO!!! AAARGH!’ Hoping beyond hope that the Phesgo with taxol are kinder, but I suspect that’s naive. I am just losing my bravado by the day…
Anyway I am so sorry for the downer post. From reading back through, my symptoms could obviously be way worse and my heart goes out to all of you suffering with much more serious side effects.
I did have a picc fitted and so far so good, but as I predicted I am very ‘aware’ of it and it does make me feel medicalised at home which is a shame. Small pleasured like baths are now a pain with my arm in a waterproof thing and hanging over side of the bath. But think overall it’s worth it. - especially when I read all the problems on here with cannulas and veins.
I think ultimately I am having a wave of shock I actually have cancer, and that the initial weeks kind of swept me up in the drama of it and that was the same for everyone around me. But it’s old news now. Except that suddenly it feels like new news to me! Love and bravery to you all xxx
3 Likes
I have a hair question— I’m at +16 days and it’s coming of in consistent handfuls. There is still plenty left as I have thick hair. I’m wondering when it stops for anyone who had success at cold capping? I mean, is it going to keep coming out until it’s all gone or will there be a certain point it will stop IF the cold calling has done its job? TIA
Hope everyone is doing okay and enjoying Christmas
1 Like
I’m on EC - or just finished three rounds and cold capped for each of them even though the nurses said I’d lose my hair anyway.
After the first round, I lost quite a lot of hair on about day 17 but I could get away with it. After the second round, I lost about 60 or 70% and could no longer get away with it!
I cold capped for the third round with a couple of gauze patches on my head where the hair was thin - it was a bit more uncomfortable, but the nurses said if I stopped, I couldn’t go back to it. It’s just over a week since then and so far, I haven’t lost very much more hair - I guess another week will be the decider one way or another.
I move on to Docetaxel in the new year, so not sure what I’m going to do. The nurse said the good news is that the wait after the chemo is only 20 minutes, rather than the hour and a half.
I seem to have picked up a cold. Gutted just before Christmas. Does anyone know if I can take night nurse?
2 Likes
Hi @bluehourd
I have had three rounds of chemo docetaxol and carboplatin for first two and then third has been Abraxane and carboplatin. I have cold capped for all three. Started shedding day 17 of first round, during second round shedding was heavier throughout the whole cycle, my hair has thinned considerably (my hair type is thick curly hair). I have a couple of bald patches but can be covered up. After my third round I shed but it has slowed down a lot compared to during round 2. Honestly I was thinking of not cold capping during round 3 as it was shedding so much but glad I did now.
1 Like
I would call your helpline and check as your body is working hard with the chemotherapy, other medications may interact.
1 Like
How are you guys getting on with the steroids? I have three days of dexamethasone after each EC, and I think they make me feel miserable. I stopped taking them today and its like a dark cloud has lifted. In the first round I put it down to the sleep deprivation they cause, but I’ve done better with sleep this time, and I was still low.
2 Likes
@rfg Oh Blimmin typical before Christmas 
- I wouldn’t advise taking any meds without checking with the helpline as they may interact .
Also keep an eye on your temperature x
@flower5 aside from causing my blood sugars to go through the roof . Yes I find they can make me feel very weepy … it’s not an unknown side effect but if it’s affecting you badly they can reduce the dose a little of your steroids x
2 Likes
I just wanted to feed back that my nurse said it’s fine to take over the counter cold medicines when on EC chemo.
She also reassured me on the following I’d been taking!
Over the counter sleeping tablets during steroid period.
Magnesium supplement
Collagen supplement
Vitamin D
But advised against the vitamin C id been taking 
.
Hope helpful for others.
3 Likes
@rfg That’s good to know ! I could do with some magnesium but need to check it’s ok with my blood thinners …
I want to wish all of you a Merry Christmas - I know Christmas is looking a bit different for all of us this year but hopefully it’s just a blip so we can enjoy many more Christmas’s to come xx
Side effects are grim for me right now complete with a terrible chemo rash but I hope no one is floored too much and you can all enjoy Christmas Day tomorrow xx
It’s just three of us for Christmas as my children are all grown up and three hours away and I can’t host … however I’ve got blue fluffy pyjamas … and my blue wig !!
Merry Christmas !! Xx
9 Likes
Merry Christmas too! That’s a fabulous colour. I hope you have a peaceful day. Xx
1 Like
Merry Christmas to you too! Well a quiet one sounds like just the ticket. As you say in a way it’s just one year and we just have to roll with it. I’m really sorry - you’ve had a tough ride symptoms wise.
I am going to my sisters with entire family and partners. 19 in all. Am exhausted by thought of it but will have to put brave face on it for my kids, who are not little (16,18,23) but still all at home and love a knees up with their adult cousins.
I have now fully shaved my head with a razor and am actually happier. It was all patchy and ugly when it was a number 2 all over. Made me feel ugly anyway. Plus it was stubbly and uncomfortable. Only thing is I now do feel like I don’t want to shock anyone with my head but I also don’t always want to cover it! Mainly because of the mad constant sweats I get. It’s like having the flu with the fevery sweats you get then, but with no temperature. So weird. So basically like feeling constantly ‘not very well’. That’s aside from current cold situation.
I’m finding the brave face harder to keep up. But think it will be easier once Christmas season over and kids back at college and Uni and work.
Merry Christmas to everyone on this group!
4 Likes