HER2+ and need some buddies

Everything I’ve read says take the anti sickness you’re given (whatever is the norm wherever you are) as soon as you get it - because it’s much easier to prevent sickness than to sort it after it starts…
I have an IV of steroids (don’t know which) before chemo infusion then domperidone to take after - my first infusion was quite late in the day so I think the premeds tided me over then I was told to get started on the domperidone first thing the day after so I did as instructed :grinning:

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I was prescribed metoclopramide… was told to take it for 3 days after EC if required. I got it before my infusion too and after the first one I realised I needed to take it when I got home too so I started taking it straight away!

I cold capped too and kept about 50-60% of my hair. It shed evenly so just looked a bit thin, but not terrible. The thin bits back super quick too! I didn’t use suzi pads as hate the cold. I do have compression socks and gloves that I use for Kadcyla though to try help prevent neuropathy

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Tomorrow is the big day for me. SMX, reconstruction and sentinel node. Have to go today for the blue dye injection for my nodes so not looking forward to that. Anxiety kicking in now but equally looking forward to getting this next chapter done…….
Thanks to everyone in this group for supporting me through chemo and now surgery. Let’s see what chapter 3 looks like :muscle::crossed_fingers:t2::pray:t2:

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Hi @galdiolus Good luck, blue dye fun, blue/ green wee for a few days after. Take care, hope you get good result.

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Good luck with surgery today.

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For cold cap information and guidance please look at

For all hair issues

:smiling_face_with_three_hearts:

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Be thinking of you tomorrow. :smiling_face_with_three_hearts:

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Hello ladies, I’m a new member to this auspicious members club… I’ve spent most of the morning reading your stories and realise just how frigging awesome women are. Thank you for sharing… let me tell you a bit about my journey so far.

I am a 54 year old menopausal woman and up until my diagnosis was on HRT, and symptom free.

On the 16th January 2025, my world was turned upside down. I was diagnosed with DCIS and Invasive Ductal Carcinoma, grade 2, triple positive, PgR 4/8, ER8/8, HER-2+ve. I also have a Ki-67 reading of 31% which I believe means that the cancer has a high proliferation rate.

There is no lump or visual change to my breast. I was one of the lucky ones who found out through routine screening. My cancer has been described as a cluster of micro-calcifications with a surface area of 10cm. My PET-CT shows no distant metastasis, but until my mastectomy and sentinel node biopsy, I won’t know for sure what my staging is.

The details of my treatment plan are yet to be confirmed, but what I do know is that the first step will be a mastectomy & SLNB with a tissue reconstruction (if possible) and then adjuvant chemo, targeted therapy and endocrine therapy.

I recently found out that my surgery is not until 1st March and that has sent my anxiety through the roof. I can’t help but worry about the cancer inside me and what it’s doing. They tell me that it’s fast growing, but don’t quantify it. I’m terrified that it’s spreading with each passing moment.

On my last visit to the consultant last week, he did talk about starting me on endocrine therapy, if there was a delay in getting a surgery date and he contacted me yesterday to say he wanted to do that. I have an appointment to see him next Friday. Knowing that I’m getting started on my treatment has lifted my spirits a little, but is equally scary. I really struggled with my peri-menopause and before going on HRT, life got really difficult. I had terrible symptoms and ended up having a mental health crisis. HRT was my saviour. Having to come off HRT and now facing into taking an oestrogen blocker, is definitely something I fear. Will all those horrible symptoms come back? I’ve already experienced my first night sweat and yesterday I had terrible joint pain.

My journey is only just beginning and as scary as it is, I am comforted by the support and love I’ve seen in this chat. To have somewhere to share my biggest fears and my small triumphs along the way, just makes it all a bit more bearable.

Love and best wishes to you all…

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@salbert thank you! I had my third dose of radiation this morning… just two to go now next week and then i can ring that bell if i want to :blush:
It really does make it more special birthdays etc after everything i have been through. I heard some people did not have radiation after a pcr? The lady i speak to from someone like me did not. They did say to me from start though that they are going to throw everything at it due to my age.x

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Hi maria and a warm welcome to the group
The fact that the scans are clear are a really good start which means the cancer is contained in that one area and not spread elsewhere.
We all have those worries at the start while we wait for treatment, i know i did.
I was worried that it was spreading about but my nurse assured me that it does not happen that quick.
Im at the last stage now of my treatment plan i did 6 rounds of chemo and chemo alone pretty much melted mine away as the Dr described it. Im just doing radiotherapy now so on the last stretch.
We are a friendly bunch and will be here to help you on your way. Jemma :heart_hands:

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Welcome @maria1970 to the club no-one wants to join - but this is a great group to hold your hand through whatever is to come :hugs:

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@maria1970 Welcome to the group.

I was like you on HRT for 7 years with controlled symptoms before my diagnosis. I have struggled since coming off HRT and even more so since starting Letrozole (oestrogen blocker). I’ve been on it for a year, started after radiotherapy, and spoke to my consultant yesterday and we have agreed a 4 week break to see if my side effects subside. I have tried multiple things to mitigate them , including changing brands, changing time taken and taking 3 different medications to help with side effects. If they do I have options to change onto similar medication, if not it could be scans to see why I ache so much. There is a possibility my aches are wear and tear which happens to us all as we age, I’m 56 in a few weeks. So there is always options. Also you can be referred to a menopause specialist as a priority with your diagnosis, although many will only see you after chemotherapy finishes.

I had surgery first and waited from 2 April when I found my first lump to 5. July for my surgery but wasn’t given the option of hormone blockers until after my radiotherapy. I was told cancer, even HER2+ doesn’t grow that fast. As always it’s very individualised and trust/doctor dependent.

You may or may not have symptoms. I totally get the concern especially when you have suffered so much in the past, you don’t want it happening again. Fingers crossed you are the later.

:smiling_face_with_three_hearts:

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Hello my friends and a big hello group hug to @maria1970. We were born the same year and will have many common points of reference. I very much like you calling us auspicious! We all know that fear that it is spreading out of hand when it’s first discovered and while waiting for treatment to start but like @jeml and @naughty_boob said, I was told that it doesn’t move that fast. If you have had a PET-CT scan and there is no distant metastasis then the chemo will mop up any stray cells. My consultant, Katherine Krupa, told me that and I trust her with my life. Literally!! HRT cold turkey is indeed cruel. Definitely speak to your team about that to see what they can suggest. A menopause specialist sounds a great idea. It’s great that you’ve introduced yourself. Your medical team will take care of the physical stuff and we’ll be here for the moral support. Splurging and purging is good!

@jan30 That’s the spirit! Go in fighting. I had Domperidone (just thinking how much that sounds like Dom Perignon) and I’m sure it helped. I cold capped and while I did lose a lot of hair, I never went bald and that mattered to me. Some women are super strong, beautiful bald heroines but that wasn’t me. At the end I shaved it all off but that was because it was already growing again by the time I finished Paclitaxel so I felt secure in that knowledge. Now I have a thick head of brown, curly hair. I call it my coiffed bouffe! I often resemble the nutty professor and this is why I own a lot of hats.

@sunflower9 - You still are a positive person; I can tell by your forum name. I’m quite a positive person too but I was also in dread and fear at the start and I only got positive again once chemo was underway. You’ll recover your positivity in no time. Thanks for making me aware of the real possibility of breaking wind under general anaesthetic. :rofl: I’ve had 5 ops and am a vegetarian. I have my final reconstruction op booked for April. Oh help!! I may just pin a note to my surgical gown saying ‘Sorry for the farting’.

@galdiolus our dear friend, REALLY GOOD LUCK FOR TOMORROW! See you on the other side when you’ll be able to mark another big tick on that bc chart.

Have I told you all lately that you are amazing and that you all rock? Because you are and you do.

Happy weekend everyone,

Salbert
xx

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Hi to @maria1970 sorry to hear your story but we are here to listen, and we all get our meltdown moments. You’ve already got some great advice. These waiting periods are the worst -does all sorts of mischief with our thinking and goes straight to the negatives. To make myself a bit more optimistic Ive started a ‘nice things’ folder - separate to the one with all the hospital stuff. Every time I see a useful link to a website, a product, an idea etc that might prove helpful on this journey Ive jotted the link down and if I’m having a negative moment I research these. Don’t know if anything like that might help you a bit - but I’ll throw it in anyway. Definitely group hug.

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My breast cancer nurse gave me a prescription for Letrozole on my first visit to the BC Clinic after my mammogram and biopsy. Several months down the line, half way through chemo, my oncologist discovered I was on Letrozole and told me to stop taking it immediately and not to take them again until three weeks after chemo had finished. Apparently chemo + Letrozole can cause blood clots so the combination is a big no no.

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I had thought I had read before others having Letrozole before surgery chemo if there was long delays and having to stop before chemo.

Thanks for posting this. :smiling_face_with_three_hearts:

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Hi guys. Recovering from my SMX and surgeon confirmed that everything was clear in the lymph nodes following chemo (previously had lymph node involvement) so looks like it did its job there.

Waiting for full pathology report now. I think they found residual in the breast but could be dead tissue, will have to see. Am expecting to go on Kadcyla.

Hope everyone is good x

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Hope you recover quickly plenty of rest @jessybessy the good news is that the nodes are clear :blush::muscle: keep going
Hope everyone is having a good weekend. I did some crafts today and made this… going to be a new hobby i think. :blush::heart_hands: keeps my mind going too.

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Beautiful!

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@jeml beautiful. I have taken up crochet after diagnosis and making a sunflower blanket. It will be a dog blanket if rubbish but it keeps my hands and brain active when feeling rubbish

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