@luka I had weekly chemo so my days that chemo hit was different. On previous chemo threads most people have felt pretty rotten for a week to 10 days after their infusion and then the week before the next infusion was much better. But everyone is different.
You could post on the previous month’s chemo thread to ask your question there.
Hi all, I started on 27th June so a relatively new chemo starter. Second one this Friday. I really didn’t know what to expect but others who had already started in the June shared their experiences, which really helped quieten my nerves. I’m grade 2 ductal, er+. Pr+ Her2-. Mastectomy in May due to size. I’m on EC x4 and then Paclitaxel x 4 every two weeks. Waiting to start was worse than the actual chemo appointment. Cold cap was far more bearable than anticipated,
. Bought an A4 writing pad to create a table of what tablets I needed to take and when and highlighted when I had taken them - a bit ocd but was scared that I might forget something. I haven’t been sleeping great but I’m not the best of sleepers anyway. Good luck on the journey - it’s a place none of us want to be in but I find the support from this forum very helpful. I’ve learnt a lot from others.Hi ladies,
Well done to us all for getting to the chemo stage, I’m sure it’s been a mad rollercoaster for everyone and starting is such a big milestone. We need to be kind to ourselves. Sending my love to you all!
I had my first chemotherapy yesterday, 07/07.
I am doing 6x of Docetaxel, Carboplatin, Phesgo every 3 weeks. I am also on Zoladex every 4 weeks.
Triple positive with lymph node involvement, diagnosed in May at 30.
The night before chemo I couldn’t sleep at all and then slept very little last night after steroids.
How are you ladies getting on with your sleep? Any tips for what has worked for you at all?
I have spoken to my team this morning and I’m ok to try night tea this evening - keeping my fingers crossed, but guessing that alone won’t be enough?!
We sound like we’re on a very similar journey @rach49. Im on the same two weekly rotation as you, but starting tomorrow so maybe one behind!
I just got away with lumpectomy and LICAP surgery in May as I think the breast was large enough to have enough tissue remaining (the lump was 45mm though) but I do have to go back to get the rest of the lymph nodes out after chemo, as all of them tested positive from the sentinel biopsy (we had only expected one to be positive) so I’ll have more surgery to come. I’m just riding waves!
I’m hoping my cold cap experience is similar to others tomorrow but I’ll let you all know!
It is a beautiful day in the north east where I am- I’ve been down the beach playing with my little boy on my day off work. Definitely helpful for keeping my mind off tomorrow! Hope everyone else is having some good moments, and the drilling hasn’t been a longstanding thing @luka so you have some peace!
Hi everyone, I hope those that have started are feeling as well as can be at this point.
I am a new member of this very weird club! Have grade 3 IDC HER2+ and starting neoadjuvant Docetaxel and Carboplatin along with Phesgo on 15th July.
Really reassuring that you are all finding the cold cap tolerable at the moment, I was unsure whether to use it but you’ve reassured me to give it a go.
@teenie87 I also have 2 small ones (4 and 1), they are definitely going to keep us distracted at least!
@tripleloaded we seem to have the same treatment, reassuring someone else is having the same as seems more unusual!
Welcome to the group @here.we.go! There’s been points where having small children feels extra hard (especially while waiting for results and thinking about the future), but I definitely think in the most part they are so grounding day to day, and it keeps me focussed to life outside of cancer, which I’m very grateful for. I hope you are getting sleep ok with your littlest only being 1? Neither of mine slept (even now the oldest who is 6yr has been up since 5.30 
) so I hope you’re doing ok. Sometimes it’s all the extra life stuff, as well as managing the treatment and diagnosis that I think gets stressful!
I had my first treatment yesterday. EC. And I cold capped. It wasn’t comfortable but with paracetamol I found it fine too. Just a light headache I’d say. I did have quite a lot of headaches afterwards yesterday evening- I’m not sure if anyone else found that? And I feel hungover- I’ve been nibbling crackers in bed this morning like the days of pregnancy sickness! A bit apprehensive about the injections I have to do later, but we’ll see what today brings!
Yes, @here.we.go it does seem to be more unusual! I will say I felt absolutely fine while receiving the treatment and found the cold cap alright too. I had an awful headache in the morning from the anxiety and the cold cap seemed to help me relax actually! Just make sure to stay warm - wrap up and keep having warm drinks and you’ll be fine. They did give me paracetamol before it too.
I hope everyone is doing alright, so nice to be able to connect with people going through the same thing.
@teenie87 I hope you have felt okay today and the hungover feeling has subsided a little! How did the injections go?
I completely get what you mean about worrying about the future. I found waiting for my PET CT results so hard. But yes I think in the most part they are a very welcome distraction and ground you to the present moment. Neither of mine are great sleepers either! My husband is doing a lot of the nights and early mornings at the moment which I am so grateful for.
Do you have some support with the children when you’re not feeling so great?
@tripleloaded that’s great that you found the cold cap relaxing! I hope you have felt as okay as can be in the few days after the chemo too?
I managed to do the injection ok but they are not my favourite things. I did take paracetamol before, took it out the fridge half an hour earlier, and iced the area because I read all those things helped (and they did) but I’ve woken up with headaches and heartburn today which is new. Not sure the injection or the EC? Is anyone else getting either of those?
I have otherwise been ok though. Definitely like a hangover @here.we.go! (Which I’m clearly not familiar with at all… 
) I’d much rather it was from a bottle of fizz or an afternoon in a beer garden but here we are! I managed to work from home yesterday morning though, and I made it to see my little boy do his promise at Beavers last night so that was my win for the day! How are all the others getting on? @hedgehog @luka @rach49 @tripleloaded Hope you’re all doing ok.
@here.we.go I’m glad your husband is good with the nights, mine are better sleepers now but I really feel you having chemo to manage with the restless nights. We live in the north east of England now, but are both from Scotland so all our family are up the road. Mum and dad are helping for school holidays in a week or so, and I am grateful for amazing friends and a babysitter nearby (who is easily as good as Mary poppins!). Do you have support around you? The boys have been taking it all ok so far, but I talk to them about what’s happening next, especially the 6 year old and we have time for questions so that helps a lot. The 3year old sort of follows suit with his brother. How is your 4year old doing? Have they much awareness?
Well done on your wins @teenie87 - I think it’s so important for the children to see life going relatively normally around them too. Mind are much older - 16 and 19 - but they still need reassurance and I’m trying to keep things light and as normal as possible at home.
Unfortunately though I had a temperature yesterday evening so rang the helpline and was told to come in to hospital. They didn’t have ward beds so I was told to wait in A&E waiting room, which I wasn’t prepared to do at this point in cycle, so I sat outside amongst the fag butts for an hour, worrying about my temp going up further. Had an antibiotic drip which I was told was for neutropenic sepsis, though it now turns out they just do that for any chemo patient who presents with a temperature. Saw a doctor at about 3am who said it’s not that, but my temp spiked at 38.6 and there is some infection that they can’t identify so I’m currently waiting for a chest x-Ray.
My advice would be to have a hospital bag packed and ready for this occurrence, so you can just leave the house quickly if you need to. I’d already done that on the advice of Liz O’Riordan.
Hope everyone is ok and that you’re handling the hangover symptoms. The heat makes everything feel a bit more difficult too, but good to have some sunshine to help us through this.
Hi @hedgehog
I also ended up in hospital for 6 days straight after my first round, so agree with your advice to all have a hospital bag ready…i didnt it was calmity.
Has anyone else been told to avoid places,people and not be out on the sun?
Thank you all
Oh I’m so sorry to hear that @hedgehog after you had been doing ok. And how frustrating to have to wait in the waiting room with no beds. They have told me here to keep reminding desk staff I am a chemo patient if I do have to present at a&e. And I do have a hospital bag packed too! But I appreciate the advice, and reminder.
I hope you don’t have to wait too long for your x-ray and you aren’t feeling too unwell with the temp? Have you someone with you too for company? Sending lots of love 
@hedgehog and @trix1 I’m so sorry to hear you’ve both been unwell. How are you doing now? I hope the X-ray was okay @hedgehog and you are back home soon.
I am sure they do still need lots of reassurance but agree it’s good for them to see ‘normal life’ resuming as much as is possible. How are they both doing?
@teenie87 that’s great that you have so much support around you, it must make such a difference. And a Mary poppins babysitter sounds wonderful!! I have my dad nearby who is great and sister who is amazing but not so close unfortunately. Friends are very keen to help but I’m finding it hard to know how at the moment - I’m sure that’ll come!
And that must have been so lovely to watch your son’s beaver’s promise.
I’m glad they are taking it in their stride, that must be reassuring.
My 4yo understands to some extent but luckily doesn’t have any insight into how serious it is. He hates me leaving for appointments though and gets so upset which is heartbreaking. Luckily my chemo day is a nursery day which will help with that.
An afternoon in a pub garden would be a much better cause of feeling hungover - especially in this weather!!
Thank you all for the tips on the hospital bag too, as well as on the injections.
Hi everyone, I hope you are all well.
I’m new! I started chemo at the end of June.
I’m on weekly taxol with carboplatin and immunotherapy (Pembrolizumab) every 3rd week x 4 then switching to EC x 4 and Pembrolizumab continues until June 2026 every 3 weeks 
!
I’ve got metaplastic triple negative, stage 2, grade 3. I doubt anyone has the same (would love to hear from you if you do!)
Welcome @cat801 - lovely that we are growing in number on here. Well not lovely, no one wants to be here, but you know what I mean! I’m er- pr- her2+, stage 2 grade 3 invasive ductal. I haven’t heard of metaplastic - I’m guessing it’s quite a rare form?
My x-ray came back clear yesterday at the hospital and I was sent home with oral antibiotics. They basically couldn’t find the reason for the high temperature and said my white blood cells were strong, so that’s good. Looking back I wishes I had pushed more in A&E to ask them to allow me to wait somewhere safe (rather than sitting outside among the fag butts!). So I would handle that differently if the situation reoccurs.
This heat is something else isn’t it. Just heading out for a stroll while it’s “only” 24 degrees…
Hope everyone is ok.
@hedgehog thank you! Nice to meet you.
Yes - metaplastic TNBC is very rare 
there was a thread here about it but it was old.
How far along are you?
I’ve just started my second round yesterday and so far so good. I’m cold capping which is bearable although managed to get nits off my 10 year old this week (first time in my life) so so much for not putting anything harsh on your hair 
Oh no - nits! That’s awful - the treatment is horrible at the best of times.
You could try starting a new thread with metaplastic triple negative in the title and see if there’s anyone else with the same diagnosis - it must feel lonely to have something that’s so rare.
I’ve only have one cycle so far (EC) and I did cold cap but it felt so comfortable that I don’t think it can have been fitted properly. They initially put the small size on me but I felt it was riding up from my crown, so instead had the medium inner cap and small outer. During the treatment I kept asking if the cold cap machine was broken as it just felt lightly cold, not properly. So we’ll see what happens. I feel like quite a lot of loose hair came out when I combed this morning but I’m only on day 8 so don’t know if I’m just imagining things.
I’m ok thanks @teenie87. Had second EC yesterday - more tired than first round and some light shedding of hair strands despite cold cap. Been watching Julia Bradbury breast cancer & me on ITV x this morning - well worth a watch if you haven’t already seen it. She has children 10 and 6. Hope everybody is ok in this extreme heat x
Invasive DCIS stage 1 ER/PR+ her2- luminal b. Treatment recommended lumpectomy, radiation and chemo- CMF. Has one with similar diagnosis received CMF? If not, what did you receive?
Welcome to the new joiners in the group 
I am definitely feeling a bit worse for wear the last couple of days. Not horrendous but I am having lots of digestive issues- seems to be switching between constipation and diarrhoea… (sorry I would not normally share this level of detail!) but the stomach cramps are no fun. Anyone else had similar or any tips? I’ve also got ulcers in my mouth despite using all the washes etc… so with the heat on top I definitely felt sorry for myself last night. But I do feel grateful I’ve not had any hospital trips yet, so I’m trying to focus on those positives. Did other people start to see improvements around day 5 (asking hopefully!)?
I’m glad you are back home @hedgehog and hope you are doing better too @trix1.
I feel for you with the nits @cat801! What an added joy 
Well done for managing that too!
And @rach49 I will have a look at that documentary- I haven’t watched that one.
Happy Sunday everyone