Yaaay for hair cuts! Can’t wait! X
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Hi everyone
@galdiolus - You are the same as @jeml then. Did your oncologist say why they are switching you to Herceptin only? This has been a bit of a topic of conversation lately. It would be interesting to know their reasons. I find Phesgo only much kinder than chemo. 
Hello @arty1 I was wondering how you were getting on and thought maybe chemo was getting you down, but no, you’re actually off buying property! How wonderful to be so close to your mum and aunt. I moved my parents literally around the corner from me and I’m so glad I did. So are they! We are having one of our Wednesday trips to Flower Farm for tea and cakes after I finish work this afternoon. They don’t drive anymore and I see it as precious time together as they are both in their late 80s. Glad you’re ok.
@jessybessy That sounds like a stressful oncologist appointment as we all want to hear that it’s all gone after going through chemo. Of course we do. It actually doesn’t help when your consultant isn’t as cheery as usual. I also notice when that happens and they’re only human and sometimes their job will get to them but I would have to remind myself not to read into it. I hope you don’t have to wait too long for the pathology to come back. Let’s pray it’s scar tissue but if it’s the Kadcyla route then you’ll be in good company with some brilliant girls on here. Once next Thursday is out the way then you’ll be one step closer. I’ve DM’d you the pic of my SMX with expander as it looks 5 months on so hopefully that will help. Sending you another big hug. You’ll get there.
Love to all,
Salbert
x
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Hello @sue9 i my breast team also said same about it not growing as fast as you think so try not to panic
@entropy sorry cant help ive not managed to read all the thread
@musestad hope you are healing well
@arty1 seems to be the norm when you have surgery 1st just get to know clear margins . Suppose just have to hope and pray thats enough
@jessybessy sounds lovely. Can we all join you ??? And super tok to have a better hospital
Wondering if anyone has any side effects with letrozole. Only been on it a week and my joints ache in my shoulders & legs and especially my ankles . Not so much in a morning but afternoon and evenings i feel 100 years old. Im taking paracetamol and ibuprofen although i think i read i need to ask about the ibuprofen . Dont usually like taking it cos it messes with my bowel… bleeding usually after a few weeks. Ive had colonoscopy a few years ago and checked out fine also had poop screen done just recently now theyre rolling them out for folk in 50s
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@jessybessy I will be thinking of you next week and lets all hope your pathology comes back soon so you get a definite plan as to what happens next.
@hlc I’m been on Letrozole for a year now and with lots of aches, pains, hot flushes etc it’s quite tiring. I’ve tried a few medication to help and will be speaking to my team next week to ask for a 4/6 week break to see if it is the Letrozole or just getting old and ‘natural’ menopausal systems. I have spoken to another lady at my Nordic walking group who has swapped to Exemestane with less problems, so that is an option for me. There are several threads on BCN forum including one that is started last year about others experiences, click on the search icon using Letrozole. Some say it’s better to take at night, changing brands can help, I’ve tried a few, Accord was the best of a bad bunch. Femara the original brand seems to be very popular but it costs the NHS a lot more and many GP’s won’t prescribe it.
Thankyou @naughty_boob let me know how you get on if you take a break. I will however swap to night from tomorrow… ill let you know how i get along. I do prefer taking it in morning cos its easier for me to remember. Ill have to set myself a alarm to make sure i remember to take it cos im useless when it comes to later in day . Ill look on that you suggested too. Always can rely on you and @arty1 for advice xx
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My oh my @naughty_boob . Is there any feed your not on lol. # are you on letrozole please take part in this thread. Some great info on brands here. Im currently on crescent and ive got accord for next month. Both from same pharmacy. Im going to try taking it at night first and see how i get on and then compare this month to next month on different brands and compare if any differences
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It’s part of being a community champion that I look at variety of threads that are relevant to my own diagnosis so I can help or signpost. I also participate about my own diagnosis and needs.
Let me know how you get on taking it at night.
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Bless you thankyou x
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Hi everyone and just been catching up and reading through a few posts.
Well i got changed from phesgo to Herceptin because i had a total pathological response to treatment… so when i went other week i had Herceptin only. However, yesterday i had a phone call from a Dr i saw other week and she said im going back on phesgo… just because i was node positive at the start and i have responded well with it so they want me to continue phesgo now… she told me other week that its protocol to change to herceptin after a good response but they decided to keep me on phesgo now… bit confusing but i feel happier with the stronger combined one anyway. Not sure if its because of my age… because i speak to a lady from someone like me too she is 60 and they changed her to Herceptin after good response… x
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Hello,
I’m new here, was diagnosed with stage 3 HER2 positive breast cancer (with positive nodes) in November, aged 35 while still breastfeeding my little girl. I had a hard time getting diagnosed as the first breast clinic fobbed me off with antibiotics for a lactational abscess for 5 weeks without doing any biopsies or further tests.
Anyway, I’ve had 4 cycles of EC and start 4 cycles of phesgo & docataxel next week. I’ve been told I’ll need a full mastectomy and nodes removed after that. I’m constantly worried that it’s spread further and about the future, but reading some of your posts on here have given me some hope. I just had my first session with the hospital psychologist today who signposted me to this website as he thought it might be helpful to hear from others in the same situation.
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@naughty_boob was the first one I think to reply to my first post … she is invaluable ! X
@salbert I must be crazy !! Also annoyed that I’m being hit with stamp duty as the new rules hit on 1st April… I do keep having panic attacks about it 
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@sooz1 I’m so sorry to hear of your diagnosis at a young age with a baby girl. You’ve found a fantastic group of people who will support you.
I’m so sorry you were fobbed off, there are some younger women on here and you may benefit from * Younger Women Together: For people 45 and under. You can choose the support that suits you: online, one day or 2 day residential events. Find an event.
As you have already started chemo, you may also benefit from joining the monthly chemo starters group to get to know and be supported by others having chemo at the same time as you. I have guessed you started in November as you e had 4 cycles, there are several people on this thread and the monthly chemo group for November 2024.
It’s so hard not to worry about spread and the future, we’ve all been there, no matter what our age or diagnosis.
We will be with you through your journey.
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@sooz1 I’m so sorry you find yourself here… we are a lovely bunch though and we’ll hold your hand along the way . How old is your little girl ?
I have full admiration for anyone that does this with small children /babies … you are very young at 35 … sadly if breastfeeding it’s easy for GPs to just assume it’s a blocked duct or similiar … 
there need to be more awareness of the fact that BC can affect any age group .
How has the treatment been for you ?
I had a single mastectomy in September and am having my last paclitaxel tomorrow but continuing on herceptin until Nov x
We have a monthly chemo thread for November if you’d like to join x
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@jeml it’s interesting you say that about herceptin/phesgo
I’m on herceptin and when I asked why that and not phesgo I was told it’s because I was more negative
@jessybessy I’m sorry your oncologist didn’t seem on form . I guess we as all human and she may have been having a bad day but its hard not to pick up on it and feel a sense of unease about it x
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Hi, all, just catching up on so many posts, but its great we are all helping each other.
@jessybessy i’m sure you will feel much better once the op is out of the way, another stage done and dusted, and hope you get a good result afterwards, but at least you have a plan.
@jeml i had PCR with no nodes affected and i’m on phesgo, perhaps because it was a large tumour initially , and i did not have a mastectomy, but therapetic mammoplasty. I don’t know, but perhaps sometimes its down to the individual consultant’s preference.
@sooz1 welcome to the group, you’ll find we are very supportive and you will find there are others here who are your young age (sadly), and not just us oldies (i’m 68). We all worry about what the future holds, but you are getting the treatment to really knock it out. I hope the next round of chemo goes well and your follow up scans show good progress. I had a large tumour but because of such a good response from chemo did not have to have (although could have opted for) a mastectomy. I still sometimes worry if i did the right thing, but my consultsnts seem confident.
In the interest of staying healthy and cancer-free i went to a yoga class today, i haven’t done any for many years and little or no exercise apart from walking, for over a year. The class was advertised as Gentle Yoga, it didn’t seem very gentle to me. It turns out my balance is poor because of slight peripheral neuropathy, my back is stiff and core strength non-existent! I sort of enjoyed it. I obviously need it. I’m also looking for a restorative yoga class which i think will help me mentally. Anyway i dont seem to be in any pain in boob area or under arms so hopefully will be able to go again. My daughter has just been on a yoga retreat in India, i was very jealous.
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Hello and a warm welcome to the group! I just wanted to send you a massive hug!
I was diagnosed last year at 33 and my little girl was 2 year old so i know exactly how you feel… its very overwhelming and all we think about is our little ones and how much they need mummy.
I completed 6 rounds of chemo along with phesgo and had a complete response to treatment so on my 5th scan it was gone. I had a double mastectomy with me being young on 18th december and doing great now… i still have bad days and anxiety washes over me but it does get easier and there is light at end of the tunnel 
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Hello you bunch of wonderful women and a huge warm welcome to @sooz1. What a horrible shock you’ve had and I’m so glad our @jeml has answered you as she is in a very similar situation to you, just a little way ahead. We do have a few younger women on this thread so you are not alone. As @naughty_boob says, there is a group for younger women that she’s signposted you to. (I 100% agree by the way, that we are SOOOO lucky to have @naughty_boob and @arty1 on this thread with their brilliant advice.) I was also given antibiotics for breast cancer and feel very lucky that my boob kept on swelling up and going red which took me back to the GP again. If our bodies are telling us something is wrong then we have to be persistent about it, is what I’ve learned. Like the others have said, we are a friendly bunch so stick with us. I feel like we look after each others mental wellbeing on here and if one of us spirals, there are always others to haul us back out again. Keep talking to us. Sending you a big hug.
@arty1 - We love your crazy!! 
Crazy is good. The panic attacks will all be worth it when you are in your lovely new home. It’s just wretched doing the buying and moving bit. I can’t believe it’s your last Paclitaxel today. You seem to have blasted through that. Well done and hooray!
Hi @pennyp - Always good to hear from you. Great that you’ve started yoga. I’d love to do a good yoga class but I can’t really fit any more in with the classes I teach and Dance Fitness class. There are so many benefits to doing it. I agree that a yoga retreat in India sounds off the scale amazing. I’d love to go off on a retreat anywhere really. Even Croydon! Well…maybe that’s going a step too far, but you know what I mean.
Love to all,
Salbert
xx
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Thank you all for your kind and positive messages 🩷
@naughty_boob @salbert thanks for signposting me to the groups. Very helpful! I’ll have a look at the December chemo group as that’s when I started.
@arty1 thank you. My little girl is nearly 20 months now. She’s doing great and having to wean suddenly before I had planned was definitely harder on me than her. The treatment so far has been a bit up and down, I’ve had quite a lot of nausea and some sickness which was made worse by not being able to take the domperidone as it was stimulating my milk production 
most of my hair has fallen out despite using the cold cap which has been pretty distressing! I know it’s just hair, but I’m a natural redhead so it’s a big part of me 
@pennyp thank you, glad to hear that your treatment went well. I’ve been told I’ll need the mastectomy because the cancer is in the breast skin. Great on the yoga, I’ve never done yoga but have been thinking about going to a session at a local cancer charity centre.
@jeml gosh our stories are very similar. I’m so glad to hear your positive outcome and that you are doing well now.
Does anyone have any tips for Docataxel? I’ve read it can cause all sorts of side effects 
my brother bought me some Suzzipad ice gloves and socks - has anyone used them/found them helpful?
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When I was having chemo in September 2023 a lady on the chemo thread was at The Christie in Manchester, it was asking patients on Taxanes (Docetaxel/Pacitaxel) if they wanted to use ice sleeves for the legs and arms to prevent peripheral neuropathy. They had some success, it apparently worked similar to the cold cap.
I iced my feet in ice slippers and ice packs for my hands on the day of chemo and the next day at home. I had some neuropathy but not enough for the team to be worried about it. I couldn’t have it in the unit when I was having my infusion due to travel time and items defrosting before I was given my infusion. They had no facilities to store them for me. I think it’s worth a try with the suzzipad.
www.lookgoodfeelbetter.co.uk to some great courses including for hands and nails that suggests wearing nail strengthening treatment, oil/balm daily and paint in a dark colour (black/purple/ deep red) as it can help with nail damage.
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@sooz1 Gosh that’s hard … she’s so little … your story is definitely very similiar to @jeml … both very young with tots to look after … I can’t imagine having to run around after a toddler who doesn’t understand what’s going on … although tbh …the selfish 20 year old who expected to be waited on hand and foot after my surgery and chemo was g much help (the less said about that the better ) … it must have been hard to have to give up breastfeeding … I had to stop breastfeeding my 20 year old at 7 weeks when I developed a PE and I was grief stricken … I hope you are getting plenty of support and love x
@jeml how is recovery going from your surgery six weeks on ? How are you feeling in yourself ? X
@pennyp good to hear from you … a friend of mine took up yoga after a benign brain tumour and she’s found it so beneficial.
@naughty_boob I had terrible neuropathy after cycle one but it reduced with a dose reduction .
I had my LAST chemo yesterday ! I’m so relieved … There was no fanfare or bell to ring sadly 
and I’ll be back there every three weeks again for months anyway 
so I walked out and slapped the bench by the back entrance , much to the amusement of the people waiting at the parking pay station then came home and slept until this morning … to celebrate I went wigless and proud lol and took a celebratory pic …
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