Her2+ scared

Hi Everyone I’m Ali 52 from Glasgow. Was diagnosed with Her2+ (no special type) whatever that means. 5cm and no lymph node involvement after meeting with surgeon to get diagnosis and plan. Saw oncologist on 5th march and omg talk about information overload, I have been emotionally tired since that day. So I have 2 get 12 weeks of paclitaxel and 12 weeks of phesgo. Have type 2 diabetes so got bloods done and during treatment I’ll need to check bloods twice daily, never had to do that. I’m absolutely terrified to be honest. I have a fear of choking when I’m sick so that’s praying on my mind. Iv decided to get a number 4 hair cut before starting. Has anyone else been on paclitaxel? I know phesgo is one iv seen on posts. Thanks for reading my post and any advice is welcome xx

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Hi @spooky

I’m so sorry to hear of your diagnosis. I was bilateral (2 separate primary tumours, on in each boob) invasive carcinoma, 2cm ER+ HER2+ grade 2 one boob, 0.9cm ER+ grade 1 the other. I had a lumpectomy with sentinel node biopsy in July 2023, followed by 12 weekly Paclitaxel and Herceptin for a year. 5 days radiotherapy, the Letrozole and Zometa ( zoledronic acid for bones). I have struggled with Letrozole and swapping next week to Exemestane.

I started on a reduced dose of Paclitaxel as I have a family history heart disease and allergies, it was reduced twice during my treatment due to allergic reaction and then a temperature that took over a week to control from an unknown infection. It’s not nice but it doable. You have be kind to yourself and ask for help for others.

I have been cancer free since my operation.

I cold capped and kept most of my hair except two small patches above my ears and thinning. I had a my hair cut into a short pixie so it was less noticeable.

I’m assuming you are having chemo first and then surgery due to the size of your tumour.

It’s a very scary time but know that your plan has been individualised for you to have the best outcome.

There are monthly chemo starters threads which can offer great support with others going through chemo at the same time as you. Link below if you wish to join.

There is also a very friendly and supportive HER2+ and need some buddies thread that has been going for more than a year with lots of people at different stages of treatment. Link below

When you have chemo you will be given medication to take to help with nausea and prevent you from being sick. If the drug they give you doesn’t work very well, they can swap you to another or have a combination.

If you have any other questions I’d be happy to try and answer them. Otherwise you may want to call and chat to one of the BCN nurses on 0808 800 6000 Mon-Fri 9-4, Sat 9-1.

Take care :smiling_face_with_three_hearts:

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@naughty_boob thank you so much for your kind words and wisdom. Sorry your going through this too. Yes I’m getting chemo first then surgery after. Now I know why they are giving me the lower doses over 12 weeks as possibly due to being obese and having type 2 diabetes. Heart issues in my family too. I have my Echo tomorrow and I’m terrified incase they say I can’t have chemo because there’s an issue with my heart. I’m thinking maybe they will just leave me as the chemo will be too much to handle. I’m having palpitations galore thinking about it. The oncologist said I was to get the meds for the bones and of course my mind went straight to omg they must think it’s in my bones too. Honestly I feel like a right basket case. I have depression and anxiety which was well controlled until now. Got my gp tmrw afternoon as I feel my mental health is declining again, I lost my son suddenly in 2019 and that was the darkest place I’d ever been, I don’t want to be back there again as I have a 15 year old daughter and she and my hubby can see the change in me. Think I was the only one who couldn’t see it.
I’m trying to stay positive but it’s difficult as every one of us will know. I’m sure I’ll come out the other side with another notch on my belt.
Sorry for the long post and my woe is me, just gotta get it out.
Thanks again for your support.
Take care xx

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Hi @spooky

I know what you mean about the information overload you can feel after the appointments.

@naughty_boob has already shared some links to chats on here. Your hospital should have given you a contact number for a breast care nurse. You can contact them with any questions about your treatment. If they don’t know the answer they will find out for you.

I was also diagnosed with HER+ back in 2023. Mine was very small as it was picked up on my yearly mammogram. I had surgery first and then the plan was Paclitaxel every week and three weekly Herceptin injections. However I had an allergic reaction to Paclitaxel so, after a couple of tries, I was switched to Abraxane, which is a form of Paclitaxel. Apart from that hiccup everything went well. I carried on working throughout and didn’t have any nausea or other issues.

When you have Herceptin they need to monitor your heart as it can affect it. You will have an echocardiogram or similar to measure the baseline and then they will check it every three months.

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I’m so sorry to hear about you losing your son, I can’t even begin to imagine what that was like for you and your family.

I hope you get the support you need from your GP and if not go to your breast care nurse for help. It’s not just about the cancer they can offer you counselling/psychology appointments. I waited until my chemo was over and just on Herceptin. I had some with a MacMillan/bupa via work but didn’t really gel with her and had other family issues going on that needed talking about. Then had another work referral with a more local team which was much more helpful. I think MacMillan have stopped the free counselling but Maggie’s offer it, if you have one local to you.

Having existing anxiety and depression must be really hard and now add in a cancer diagnosis means you might need a bit more help and support. The BCN nurses are lovely to talk to and MacMillan have phone support as well open 8-8 daily.

Please don’t apologise for your woes, they are valid and the forum is always here to listen to you.

:smiling_face_with_three_hearts:

@naughty_boob thank you so much for the support. I will see how I get on with my GP then I will contact BCN and macmillan too to see what support they can offer.
Take care xx

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Hi ali,
Hope youre doing ok. I had 12 paclitaxel & 12 phesgo. I also had 3 EC before my paclitaxel.
Like you i was terrified but i promise you that its not as bad as you think.
Are you getting treatment at Glasgow Beatson? If so you are very lucky. The staff are amazing.
Tips:

  1. Parking at Beatson is a nightmare, get there 30mins befire your appointment to get a space
  2. Sometimes Mcmillan day unit are running behind. Theres a lovely room on level 5 you can go for a free cuppa and a lovely view of the city. I find it quiet & relaxing rather than waiting for hours on end in waiting room
  3. You are always given medication to take away that stops you from being sick but it can make you quite constipated. Take califig daily
  4. Rest.you will be tired so take things easy. You get more tired as treatment goes on
  5. Your phesgo injection is given in the thigh on the chmo ward. They put a screen around you but not the most dignified. Wear leggings/jeans/trousers with a longer top/tunic to cover your modesty
  6. Things don’t always go to plan. If your bloods are a bit off they will delay treatment. I found this frustrating but couldnt be helped- harder when youre going through it & youre a planner
  7. You are absolutely getting through this. Its hard but not as hard as youve imagined. Once you get round 1 out of the way youll be much more relaxed

Sending lots of love x

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@Luskentyre1 aw thank you so much for replying, you have put my mind at rest a little :smiley:. No I’m having my treatment at the New Victoria and I never even knew you got treatment anywhere else but the Beatson. Can I ask what is EC? Iv saw loads of people mention it, didn’t want to ask as I felt I should have known what it meant lol. I have my Echo this morning then tomorrow afternoon I have an appt with oncology to sign consent forms etc. 17th march got breast MRI and all going well I think my chemo starts the following week. I’m terrified incase they tell me there’s something wrong with my heart and can’t give me chemo, then there’s my type 2 diabetes, maybe that’ll hinder things. I suppose I’m not the only person who has a cancer diagnosis with diabetes. It’s all emotionally draining which is something that happens to us all.
Thank you again for all the info I really appreciate it :two_hearts::two_hearts:. I’ll keep you updated.
Much love and take care xx

Morning,
EC is just a different type of chemo. Everyone’s situation is different (size, grade, type of tumor) so get different chemotherapy regimes.
Havent been to New Victoria but i am certain they will have have the same supports on offer…youll be in good hands.
I think the reason for the echo is to track possible deterioration during treatment so dont be worrying about your baseline scan. Do wear separate top & bottoms though to give them easy access without sitting in your pants…its the wee things they dont tell you :flushed:
You should have a breast care nusre assigned to you. To be honest i didn’t find mine very helpful but i know others who did get a good service. Contact her & ask her if there is any specific advice for diabetic patients.
Waiting for treatment to start is the scariest part. Once youhave the first treatment under your belt youll be a lot calmer.
You will be tired on treatment but there will most definitely be good days.
They ask you to avoid uncooked meats & sushi whilst on chemo. Also no swimming so if these are things you like I’d advise packing as much of this in as you possibly can before you start :wink:
You can do this

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