Good luck on 24th.
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Hi Iām a bit late finding this thread! Iām triple positive, have had 3 rounds of EC and then Docetaxel and herceptin X3. Surgery in August - mammoplasty with the dreaded no PCR. That really knocked me for six as no one had ever mentioned Kadcyla 
Had radiotherapy x8 in October and am now 8 down on the Kadcyla train! In the midst of all this I moved from Reading to Minehead travelling back to Reading for surgery and radiotherapy. The move was the best thing we ever did- living by the sea. Iām still.in a fabulous group of April 24 chemo starters and we are about to all meet up for the first time, and do the Bath 10km together. Laura x
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Hi @gromit12
Welcome to the thread. There are several lovely ladies on Kadcyla on this thread, who are always willing to offer help and support.
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Morning, oh fabulous ones!
@carrie5 Thatās such a lovely picture of you and your gorgeous and talented Poppy. Look at you both doing such good in the midst of your own troubles. Itās heartwarming. So happy for you that you have clear margins. On with the next stage. Tick 
@purple_rain I hope the next 3 weeks go quickly for you and it makes such a huge difference to have a lovely and supportive surgeon. I switched from one that I ended up having no faith in and who was routinely running 1 - 2 hours late to an empathetic, nurturing female consultant who turned around the way I felt at our first appointment.
@jeml - Recurrence depends on such a number of factors that Iāve made a decision just to be hyper-vigilant and not think about it. (Probably also known as denial 
) Weāve had such amazing treatment and a lot of it is out of our control but at least theyāll be keeping an eye on us now. Sometimes I think to myself that I should be worrying more then swiftly remind myself that it is pointless, so instead I just do all I can to be as healthy as possible but not to the point of denying myself cake or the odd G&T. I hope that doesnāt sound flippant, itās just where Iām at with it all.
My dear @arty1 I am so glad BCN have asked you to be a Community Champion too because if they had not I was going to suggest you. You are nailed on to be one. You are inspirational, honest, open, encouraging AND you have medical knowledge!! I really hope that you recover from your superhuman feat of hosting a big fundraiser for BCN just after finishing chemo soon and say yes. Well done on raising that money and those drawers and wreath are absolutely stunning. Oh yes, youāre extremely artistically gifted too. Is there no end to your talents?!!
@jayveebee Hello and welcome! It IS a fab group, isnāt it. What a great intro and advice. Iām definitely going to check out the Dr Vegan stuff. Iām so sorry to hear of your travails with your heart function and Kadcyla situation. My heart function also dropped to a left ventricle ejection fraction of 52. They put me on Candesartan which sorted it out immediately so itās back up again. I had Phesgo number 16 of 18 yesterday. Thrilled to hear you are also sporting a wavy salt and pepper pullet. Itās all the rage! Iām having a FaceTime catch up tonight with 2 of my best friends who live up in the North East and Canada. Neither have seen this do. Iām expecting brutal honesty from them and a fair bit of ribbing if they spot a chink of an opportunity. Iāve gelled it in readiness to try and mitigate the Mickey-taking!
@jessybessy I echo what others have said and recommend BREAST CANCER NOW 
for fundraising or donations! I donāt know where Iād be without them. I wouldnāt have met you lot for starters and hate to think of this journey without you all.
@erica Hello! Come and join us. Weāre a lovely colourful and super-supportive bunch. Hello and welcome to @lucy99 too. We will be here with you every step of the way. There is a whole host of good advice on this thread and you can follow the journeys of many of us who are ahead of you on this path so you can read about a variety of experiences. Be warnedā¦it takes about 4 and a half hours to read it in its entirety so you may wish to do it in stages. You can always drop in and ask for support whenever you need it or just to share something thatās going on in your life such as stunning works of art to make those without an artistic bone in their body go green with envy. It will be good if you and @carrie5 can go through this at similar times.
Oh and Iām trying to sneakily type this at work so itās taken me all morning so far and in that time, @gromit12 has joined us. Welcome to you also. It does seem to be so common that people are taken by surprise when the Kadcyla bombshell is dropped. It must be so disappointing when you think you are through with chemo. Most people on here think it is easier than EC but experiences vary. How have you found it? How fabulous that you are meeting with your April chemo starters and doing something so positive as the Bath 10km.
Iām seeing the London Welsh Male Voice Choir tomorrow night. I wonder if theyād mind if I join in? Hope not! 
Have a great weekend everyone,
Salbert
xx
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Hello, thank you for the welcome to this wonderful group 
.
Just received a call from my nurse, the hospital computer system has gone down so still no news from my contrast MRI and enhanced mammogram from last week.
The plan is surgery, chemo then radiotherapy but they need the scan results before they can confirm.
The waiting is awful
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@salbert Kadcyla is much kinder to me than EC etc. Iām a runner and getting my distance back up, last weekend I did 28km in a race. Also doing Zumba and Pilates. Muscle and joint pain are a pain - literally -but thatās more likely to be the letrozole. I had a bit of a scare with last echo too as ejection fraction had dropped to 50-54 and they wouldnāt continue with Kadcyla until id had a repeat- but that showed an improvement. I canāt bear the thought of this being delayed as I have so much planned and life is organised around the Kadcyla dates for next 4 months.
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@arty1 I missed your post about being approached to be a community champion as well. I would have recommended you aswell as you have been so supportive on this thread and many others. They donāt generally ask us but sometimes people stand out and some champs offer suggestions.
Maybe between 3 of us we can persuade BCN to have a HER2+ category and this thread can be put within it. I try to signpost as many people as I can but itās hard to keep up and I only join every other chemo starters group.
Well itās a beautiful if chilly day in South Wales, long may it continue. Happy weekend everyone.
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Hi @lucy99 welcome and great you have found this group. In prep for chemo I would suggest getting a variety of your fav easy foods and snacks, enough for the first 7 days. I couldnt stomach rich or strong foods the first week and ate small amounts of beige food often! Kiwis are fab for constipation on first days. If anyone wants to bring you a small meal, let them! If they want to come for an hour to visit let them make the tea. Though boiled cooled water or spring water may be all you can drink. If you get the big D flushable wipes are nice and some soothing botty cream. Low perfume handcream and a rich face cream in case your skin dries out (MooGoo have a lush oncologist approved range). Tell your hospital team about every sympton you have as they will be able to help. I had so many on round 1 that they reduced my doses to make it all manageable. Become vocal! Tell your team and friends what is happening and what you need. I struggled with this but now Iām an expert! Also if you are bothered about loosing your eyebrows, with all the money youāll save on hair cuts shampoo etc pay for microblading yr eyebrows! But get done ASAP so healed before treatment. Iām quite lazy with my looks but so glad i did my eyebrows and a line around my lashes so i didnāt frighten myself looking in the mirror LOL!
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Yes please @naughty_boob get us our own place in a big fat heading! i have a right ol time of it trying to find this thread back.
Thankyou @salbert for giving me hope with meds for heart. And can you post about the future meet up again? Ive lost the details.
@erica the waiting sucks! I was discussing this an hour ago with a good friend and we decided for me i would put all my āwaitsā on paper in a real box on a real self to stop me over thinking and using precious energy while i was waiting on all the answers.
@gromit12 you have given me hope and inspiration for Kadcyla months ahead.
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Oh my word- ladies ( and gents if applicable) you may just have saved me from a complete breakdown. Thank you so much @mrsjelly for pointing me in this direction, I have read every post ( ohhh the knitted hair)!!! Hereās my story
Rolled over in bed on the 11th Jan 2025 and thought something wasnāt right so had a good feel and lo and behold a lump!!! I think I knew straight away but I have heath anxiety so I was hoping that I was being over dramatic, doctor next day sent off for mammogram then ultrasound then he said Iāll biopsy ( then I definitely knew) he pretty much said it was cancer there and then but it was small and they would remove it. So off I went thinking Iāll be back to normal in a few weeks!!! Boy was I wrong no one prepared me for the different arrays of this evil little git there could be, so long story short Iām triple positive, MRI showed no other lumps or signs of cancer in the rest of my boob or in my lymph nodes (good news!!!) but because of the her2 not so much whip it out but brace for a marathon, Iām still not sure of all the terms etc and am avoiding google but thanks to you lovely lot I have most of my questions and fears answered and quashed. What an amazing. Thread it should be turned in to self help book. Iām miserable that Iām part of this club but extremely grateful and happy to have found that itās full of people that are facing this in a brave and humorous way, didnāt realise that kylie minogue had Her2 I always wanted my bum to look look like hers didnāt wish for the boobs though!!! Anyway Iāve waffled on long enough, got my first oncologist appointment on Tuesday as itās chemo first for me then itās quit smoking and drinking once I have my plan in place- wish me luck!!
Jobiee
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@jobieejo - wishing you all the luck for next week. I just got a call to be at first oncology on Monday. What a rollercoaster! Iād be insane by now without this thread!
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Hi @jobieejo Welcome to the thread. So pleased it has helped already.
For those about to start chemo there is a lovely charity called Little Lifts, if you send a copy of your diagnosis letter they will youād you out a box of goodies. They will destroy the letter once the box is dispatched. It comes in a fabric bag that I use all the time.
Cancer Hair care charity can help with all hair loss issues as well as Paxmanās Cold cap website
Look Good Feel Better charity offer many online and face to face course for hair loss, clothes, nails and you can get free goodies if you attend.
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Ladies who are starting chemo , please donāt forget to get your little lifts gift box if you havenāt already got one . Itās full of wonderful things to support you during chemotherapy
I found my sense of taste was obliterated for ten days ā¦ so the box contained sauce to give good a bit of kick , a soft toothbrush and natural toothbrush which are ideal for tender gums. Lots of lovely things in there and you can request it yourself x
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@arty1 Hi, thank you for your message. Everyone is so kind and helpful, I am starting to make a list of notes on recommendations to prepare myself. So many things that I would not have thought of doing but which will be so useful. xx
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Hi @carrie5 thank you for your message. Let me know what they plan for you. I am seeing the Breast Care nurses next week to go through the chemoās in more detail and to sign my consent. I have friends who will keep in contact by phone and a cousin who will get me some shopping if I run out of anything but I will be stocking up on lots of items.
I am not working at the moment as I had a huge breakdown after losing my uncle, my mum and my stepdad ( none of whom were elderly and me and my mum were so close I miss her every day ) and also have been ill with a sliding hiatal hernia, osteoarthritis in knees, hips and feet and problems with a couple of discs in my spine doh. I am 58 but early menopause at 36 probably has something to blame for the arthritis. Things are sent to try us doh.
Keep in touch and let me know how you go. I am not yet used to navigating this site but will try to post my experiences as they go on, hopefully I will be able to post good things to give people hope and ease their own worries.
Take care and speak soon xx
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hi @jayveebee Thank you for your message, I already look scary but might opt for beanies that sit low down my forehead and hope for the best, might add sunglasses too until they grow back if it is sunny. Just hoping to get through the chemoās with some good days, as many as possible doh xx
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Iām so sorry to hear youāve already had such a tough time and now youāre facing this. I hope you can think of things your Mum would have said to support and encourage you, her love is part of you now. Stick with us on this thread, we canāt make it right, but weāre here, and sheer stubbornness is going to get me through! Iāll keep you posted. Iāve already got a page full of questions as my mind will be blank when I get in there.
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Hy guys got a phone call last night from hospital my re-incision is happening on Monday instead of 24th march got a cancellation, im glad its happening earlier. @gromit12 im glad your almost through kadcyla cycles it gives me hope that i can get through it when i start mine, i work in a supermarket so im hoping i can get back to work which im missing so much. My sister has been on letrozole for 18 month but her body is aching with pain so doctor has taken her of it for 6 weeks to see if its the letrozole that is causing her pain .
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I saw my oncologist yesterday who has decided that Iām clearly allergic to herceptin ā¦ sheās going to trial the pre meds and infusion for round six but if I still react afterwards I have to come off it 
and At the very most I wonāt be carrying on after nine , she reassured me but I feel like my body has failed me ā¦ sigh
@caz591 all the best for Monday ! My friend has been on letrozole for a year and she suffers with terrible aches
@lucy99 Im so sorry that you already have had so much trauma to deal with as it is
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