Yep so I’m having chemo first and then will
Have surgery so other way round . Chemo is manageable please don’t worry too much and maybe it’s better just to get on with it . Time just give us too much thinking time
Doesn’t it xx
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Hi It depends who advised this and on what grounds. My hair was shoulder length and i retained that, all that happened was a thinning of the total. Going through treatment September to march my head kept warm and i didn’t suffer any chills or bad colds unlike a few of the others who shaved their heads at the first sign on thinning. you are strong I’d keep the length you have. Another tip don’t wash or dry your hair in hot air or water, warm to cool is best. Also visit your local Macmillan centre for any scarves or hats at lower prices, from the items donated. I re donated what I never needed.
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Hi @scribbler i havent started my treatment yet but my friend who went through it said she wished she’d cut her hair short as it was a lot more upsetting when it started falling out - to have handfuls of long hair 
But of course you may be one of the lucky ones 
I cut all my shoulder length hair off and had a very short pixie cut before my mastectomy so that it would be easier to cope with tyrannosaurus arms and I havent regretted it at all - in fact everyone’s said it’s made me look younger!! So I’ll definitely be keeping that through chemo..
Hi @suzerose2
Thanks for your post saying how you’re doing 
. I’m following on the same path so it’s good to hear how it’s going for you so far.
I’m interested that you had steroids the day before - are you in the UK? I’m in Wales and have only been told I have to get my blood test the day before 
I really need to phone the clinic to ask what will be happening on the day and in what order! It’s the unknown that brings the most anxiety
I hope you managed to make it to your do and you’re still feeling ok
Hi @rosie7
I hope you’re still feeling a bit better 
I’ve been looking into fasting myself as it’s meant to make the chemo more effective 
But I’m on a weekly regimen so I’m wondering if that makes it impossible to so without starving yourself too much! How long do you have between treatments?Were you recommended to do it by your team?
Tyrannosaurus arms? What are those? 
Not being able to stretch or lift your arms very far for a good few days after surgery 
Which is why they recommend moving things that you use a lot off of high shelves
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Ah ok! I had a single mastectomy so still had one good arm to do stuff with so lucky x
Nearly 5 weeks on now and I am able to do most things, which is great 
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Hey, @wizzer! I had my labs done the morning prior to first treatment. They do this via the port, and I’m not going lie: it was a weird sensation! I was given a numbing cream to use 1hr prior to any pokes now! I also took oral dexamethasone (steroid) in am and pm the day prior. It helps with any inflammatory response you might have to the chemo meds. On the day of infusion, I packed myself a bag with plenty of water, iPad, phone, charger and a protein bar and an apple. My nurse on day #1 was amazing! She talked me through everything from the first poke to the unplugging at the end of my session. First, they gave me more pre-meds: benedryl, tylenol and anti-nausea (all via the port). Then, they slowly gave the trastuzamab (this is to allow your body time to adjust and minimize reactions). For the paclitaxel, they put my hands and feet on ice for 15 min. before they started this infusion. I remained on ice throughout the treatment and for an additional 15min post infusion. This is to reduce circulation to the appendages to stave off neuropathy. I listened to an audio book during the paclitaxel as I couldn’t do anything with my hands! It wasn’t as scary as I’d thought. I did ask my husband to come and sit with me for a while. I thought it would be better for him to see everything himself, rather than to imagine what it would be like. He will be starting his own infusions of Alzheimer’s IV meds (sans port) in a couple of weeks. On Thursday night I had a sweet, fruity smell to my urine. I have a background in nutrition and this is usually caused by ketones (from excess sugar in your blood) spilling into urine. I’m not sure, but I think it was from the high dose of steroids the day before. I ate low carb that night and next day just in case. I did let my oncologist know and she said, “nothing to worry about.” You’ve got this!!
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Aw thanks @suzerose2
Blimey so many drugs
It’s interesting how different places give you the same treatment. Sounds like you had the trastuzumab through your port? At my hospital they give it as a really long (2-5mins) subcutaneous injection, usually in the leg. I’m really not looking forward to that! It’s partly why I’m not having a port/picc as I’d still have to have that separately! And I’d rather go home without any medical stuff attached.
I remember have a cannula a few years ago and having to have it flushed all the time which I hated and I’m assuming it’s the same with a picc
I hope you and your hubbie get through your treatments ok - must be really tough having to cope with both diseases 
I’m on three weekly - definitely think I’d struggle with fasting if it was every week!
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When I first registered for this forum, I had no idea I would be beginning chemo so soon. Now I’m a September 2026 starter, too. My first round is this Thursday. I’m nervous, but trying to control what I can and let go of the rest.
I live in Norway, so we’re surgery-first here. Discovered the lump in my right breast on my own in May. Got my diagnosis in June. ER/PR positive; HER2 negative. Surgery (unilateral mastectomy) in August. Clear margins; no lymph node involvement. Unfortunately, the tumor was Grade 3 and very aggressive. So, chemo is what’s next.
First 3 months will be four 3-week cycles of EC90. Second 3 months will be weekly cycles of Taxol. Then endocrine therapy to shut down my ovaries.
Bald before Halloween.
Chemical menopause will set in just before my 44th birthday.
Winter is going to be tough.
Glad to find a group like this one to help me feel less alone in this. I’ve read through this thread and I want to send everyone some love and encouragement. Take good care of yourselves!
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Hi all,
Just found this page. I’m on cycle 2 of 4 cycles of EC and then 12 weekly Paxilitel.
It’s been a wild ride already lol 
Have good days xx
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Hi @audrey33
We are in the same boat, with the same annoying little cancer. I am nearly bald already. Yes, my Halloween costume this year will be very scary.
Xx
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Hello everyone, may I join you?
I am due to start chemo this Wednesday 16th. Am having AC-T dense dose, so 8 rounds total every 2 weeks. I am 8 weeks out from SMX and Diep flap surgery, which thankfully has been healing well!
I have stage 3 IDC, diagnosed in May. It would be great to have some company and sharing of tips.
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Hello Audrey - my experience is almost the same as yours but I didn’t have clear margins. Yes, a tough winter ahead but as the cliché goes, being outside as much as possible helps. Wishing you all the best on this journey!
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Please tell me about the wild ride. What’s awful? What’s less awful than you were worried about before you began? What helps you get through the days? Sending you love!
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Hi @derry1 
How was your first day?!
I start on the 22nd but I’ve heard the first day is quite a long haul so I hope you got through it ok
@audrey33 all the best for tomorrow I hope it goes smoothly for you Remember to diaphram breath slowly with longer exhales when feeling anxious 
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Hi @wizzer thank you for thinking of me.
The infusion went without a hitch and they were absolutely lovely on the oncology ward.
I started feeling unwell around 3 hours later (headache, nausea, tiredness). Felt like i’ve had a bad hangover all night. Feeling bit better this morning. I was expecting to feel okay for the first couple of days and awaiting the ‘steroid mania’ so this surprised me!
Xx
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Hi @audrey33
So, my take on it. Not to scare you. First night is awful - tiredness, sickness. I’d say ask for more anti-sickness meds. Go home, drink water, and go to bed. Remember it passes.
Then, it’s just sleeping, sometimes I felt “wired and tired”, but largely my advice is embrace the sofa and the boxsets and let yourself snooze like a baby. Drink lots of water, like three litres. The power of water is amazing. Also, take anti sickness tablets even if you feel you don’t need them.
I ate so much food, not good! Need to work on that. But then when I felt I was turning a corner, I got this awful taste in my mouth. Just horrid. The only things that helped was Peppermint Aero chocolate bars, and Mint Choc Chip ice cream. Of course, this has not helped with the eating.
I’m going to try and crack that one next cycle. It’s not just the fact that I’m doubling in size every cycle lol, it’s just a very short term measure to eat ice cream all day, because as soon as I stop, I need more. Plus, it’s my favourite ice cream and it’ll ruin it forever.
Anyway, that’s my bizarre take on it. Any advice on the ice cream welcome.
Good luck xx
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