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
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 
@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
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.
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.
@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
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:
- Parking at Beatson is a nightmare, get there 30mins befire your appointment to get a space
- 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
- You are always given medication to take away that stops you from being sick but it can make you quite constipated. Take califig daily
- Rest.you will be tired so take things easy. You get more tired as treatment goes on
- 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
- 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
- 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
@Luskentyre1 aw thank you so much for replying, you have put my mind at rest a little 
. 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 
. 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 
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 
You can do this
Hey Spooky, HER2+ and T2 fellow diabetic here. I just take Metformin twice a day but I know there is a myriad of different diabetes drugs and injections now so please speak to your GP, but more so the oncologist and breast care nurse for advice. Dependent on the time of your treatment make sure you have eaten something light and take snacks as you are there for a good while, especially if cold capping. My hosp give you lunch and drinks too. I have found I need to eat more before bed or my sugars drop in the night due to I think the steroids which have sugar in them. I keep some custard creams in a little tub by my bed which helps to bring my sugars up if not feeling right and 1 or 2 sets me back but you’ll know how to raise your sugars best so just listen to your body. Drink tons of water. I am obese too so have had 3 out of 4 EC infusions fortnightly and after Easter having 12 weekly Paclitaxel and Phesgo injection every 3rd week. Also having Filgistrim injections for white bloodcell increase every time and Zometa infusion every 3 months which is to stop the HER2 protein cells increasing but can affect your bones. It is a real minefield and lots to learn about what you are taking and why. Just ask lots of questions at your oncology appts, at the chemo suite and on here. Take care x
Hi @spooky I’m so sorry to hear of your diagnosis and the loss of your son 
…
Fear of the unknown is a very real and normal fear , a cancer diagnosis is definitely the unknown, you don’t know what to expect and that can feel very frightening. @naughty_boob has given you some fantastic links but I’d also urge you to speak to your team as well , sometimes it can feel as though all you hear is white noise when you get a cancer diagnosis and it helps to have someone explain things to you in more time and detail . Have you been assigned a breast nurse ?
I hope the echo went ok for you 
@jacx70 hi thanks for replying. It is a nightmare, got my hbac1 results back they’re up to 60. I’m not surprised as I’ve been stuffing my chops with everything since I found out. I’m on 4 metfoemin a day so I’ll need to get my butt into gear and eat healthier. I do drink 2.5 lts water a day anyway but it’s the junk food that’s the problem. Went for my breast MRI today Jeezo I nearly had a full blown panic attack, think it’s because I was on my stomach and couldn’t control my breathing, I came out like a junkie goin through the DT’s. I’m not cold capping just going baldy but I’m ok with that. I will take everything on board what you said. I start my first EC on Wednesday then paclitaxel for 3 weeks then EC again and that’s the schedule for 12 weeks, then another chemo for 12 weeks. Steroids too. I’m not going to lie I’m scared but I think if everyone else can get through to the other side so can I. All the best with your journey, take care xx
Hiya, hbac is a bugger, mine is around 50/52 but the gp still wants to give me more meds. I’ve said no for now, got too many drugs with this to cope with playing sugars roulette! I am on 4 Metformin too. Stick to your guns and don’t do anything drastic, just cut back on crap if you can, no or less fizzy drink, less crisps, choc and biccies yeah all the good stuff lol. God that breast MRI is horrid isn’t it, so bloody uncomfortable. I described it to my mate like the shittest rave you’ll ever go to with all that clanging and banging 
. I’ve got another one in a few weeks, so not looking forward to it. The PET scan was fine in comparison. Chemo is soooo much worse in your head than starting it, you’ll be ok after the first one but yes it is the build up and realisation that hits home. Oh and don’t forget to take a book or wordsearch and music/earbuds to kill time while you have chemo, it is so boring lol! I have been surrounded by boring old men so far to talk to every time I go so end up talking to no one bar the nurses as they kind of blank you. Only saw one woman and she slept for 3 hours solid! Good luck and take deep breaths, you’ve got this xx
@jacx70 oh no boring old men 
. Iv got my kindle and I will also take my earbuds to listen to music too, need to mind my reading glasses or I’ll be stumped . Well today I have decided to not have any junk and start as I mean to go on. Can I ask if you’ve had any of the side effects like mouth ulcers etc? Few people have said lemon & barley water as the water itself can taste funny, have you found that? Iv not had a PET scan, had a ct years ago that was ok lol. I’ll be counting down 12 weeks til my next MRI, maybe I’ll have lost some blubber by then . Good luck for your next one, I will keep you posted and I know I’ll not sleep Tuesday night, as you can probably tell I’m a big Drama Llama
Take care xx
Hi, only had 1 ulcer so far thankfully, I brush twice a day now and use mouthwash at night which seems to really help, oh and use a really soft toothbrush as it is gentle on the gums (Never used to brush at night before this!). I have had some tastebud issues with foods and drinks, taste disappearing or being a bit odd. I had an orange the other day that tasted sour but my son said it wasn’t . Strong flavours are good like salt n vinegar but others taste of nothing. I have had bad indigestion so lemon is out for me but mints are good and fruity boiled sugar free sweets for some taste. I get a really dry mouth too with steroids etc so drink tons of water now. It’s a case of finding what works for you really. Well done on the better eating, little by little, don’t go mad! You still need some treats to get through this crap! Good luck Tues and let me know how you get on. I have ultrasounds Mon so hoping lumpy has shrunk.x
I had mouth soreness on Paclitaxel but mitigated it with gargling with salt water daily, then added in bicarbonate of soda which help more. A friend 8n Australia who had had chemo was given a bicarbonate of soda mouthwash from his team. I did get thrush twice and was treated with Nystan. I was also prescribed Corsodyl which can turn your teeth a bit grey but it’s only temporary while you use it and disappears when you finish.
There are lots of options for side effects but you may not get them. My advise is to call your helpline if someth8ng doesn’t feel right.
Hi @spooky fellow Scot here but my treatment is in the Vale of Leven. All the advise given here is great. I am also Her2+ and just finished 4 x EC and will start on Docetaxil in a fortnight for 4 x 3 weekly along with Phesgo. My tip is see your dentist, they will fit you in, tell them you are starting chemo and can you have a mouth wash for sore mouths. I also got toothpaste that was super high in fluoride. Had a full set of X-rays and ended up needing a filling. Better to get before you start as they aren’t keen to touch you during chemo (although I ended up having to get a tooth pulled 
) It is tough but doable. Take rest. Sleep. Eat good food. Exercise and stretch in small amounts. I was told if I am able to look at Facebook, I am able to take a 10 minute walk.
Hey, how was it? Hope you are doing ok x
@jacx70 hiya it was eventful lol, allergic reaction which is common but all the stopping, starting the chemo and flushing, pre meds, steroids I was in at 9.15 and got out at 3.45. Was fine with it until yesterday, got the runs and the fatigue has hit me like a tonne of bricks. I felt that good I did everything I normally do, not much resting so it’s caught up with me. Apart from that I’m doing ok. Bloods tmrw, results Tuesday and if all good next chemo Wednesday. How are you fairing up? Xx
At least that’s one crossed off and you know what to expect now. I had upset tum on and off last week, exhausting isn’t it? Think it was the Filgistrim. I too hit a brick wall last week after doing too much although I felt ok at the time, had to rest all weekend and was in bed at 9.45! This week has been ultrasounds and oncology, bloods etc, non stop. They couldn’t tell me from the us whether my lump had reduced but said I was reacting well. Have an MRI soon so hopefully that will be better. Last EC on Tues and then start Paclitaxel and Phesgo after a break. I thought I was having a 2 week break but looks like might only be 1. Fed up as I had hoped to go Wales for 3 days but the oncologist was very anti it and said not to delay. She wasn’t too nice really and I left pretty deflated. Waiting for my nurse to reply back to clarify things now. Good luck with your next chemo xx