Thanks so much for your reply. Like you I am also triple positive, although my surgeon has just told me I’m a low positive (who knew there even was such a thing). I felt exactly the same when the surgeon said I’d had some but not a great response according to the MRI. Knocked the stuffing out of me.
I’d had an 18% reduction at midpoint scan and his initial ultrasound suggested a 50% reduction but the MRI didn’t agree! If I had been told at the start that some ladies have more chemo if there is residual disease I would have been more prepared. It sounds ridiculous but I felt like I’d failed. Does everyone with any residual disease go on the Kadcyla.
I have been down the rabbit hole that is Google reading if you don’t respond well to adjuvant treatment your chances of recurrence are higher and long time survival lower so it is good to see your stat that the risk is lowered by 50% with this treatment. Does that bring us ‘special’ ones in line with everyone else?
I shall be pleased to get to surgery and just get it gone…… x
Thanks for your reply. I felt exactly the same. I’ve been very positive all the way through chemo, just head down and crack on through it.
It was a bit of a hammer blow to find out there could be more waiting the other side of surgery. I’d previously been told surgery, radiotherapy to mop up any stragglers and phesgo so when this bombshell was dropped I was hit with the total fear and jelly legs of initial diagnosis. All the ‘what ifs’ -worrying how this affects long term prognosis, back into the world of uncertainty.
It’s encouraging to hear you can pretty much get on with life, that was another worry as feels a bit like normal life is on pause while you just make your way to each milestone.
Hope you enjoy your peanut M and M’s! X
Yeah, don’t go down that rabbit hole. From what I understand, talking to medical professionals, that the reduction in incident free survival from Kadcyla brings us a lot closer to what would be expected if you have pCR from chemo. If you have RCB-I (minimal residual cancer burden) they consider it to be the same as pCR (RCB-0). If your RCB is slightly higher (II or III) then there’s more a gap between pCR and our rates but it’s a lot closer than it would be without Kadcyla.
Kadcyla has only been used for early stage breast cancer for a couple of years (I think it was approved by the FDA in the US in 2019 and around that time for the UK), so the full long-term effects aren’t necessarily fully understood but the early data is very good for us.
What a disaster @Salbert ! Time to tune in to your inner cavewoman and light a fire. If the electricity is off that means no TV or internet, a 21st century nightmare.
NB My hair is blonde not white. If it’s turned white because of the treatment I’m still firmly in denial about it.
I genuinely felt awful when I found out about Kadcyla too and like you and others, worse than when I was first diagnosed as I was never told till the last minute about Kadcyla (due to really pinning down the oncologist after she used a phrase that made me query her). I’d told them and had numerous discussions saying I wanted to know the best and worse case scenarios and was only told that I’d be on phesgo for 6 months if PCR and 12 months if no PCR so it was a proper shock and I just wish they had set expectations sooner as I’d have been able to see it as a potentially long chemo journey from the start. I had also felt like I’d failed before I started digging into stuff! As far as I’m aware, everyone with residual now goes on Kadcyla in the UK… It’s certainly a standard treatment (although not 100% sure if it’s just a few rogue cells if they maybe give the option of phesgo to continue etc).
Yes, so as @kartoffel says it is all linked to the residual cancer burden and it depends on what that is. I got RCB 2… I wanted to dig into it deeper as I like to have stats/evidence to process info. The Katherine trial just released data about a month or so ago that was 8 year follow up from their initial data and it was just as good as their initial findings Kadcyla really does help with bringing the risk down closer to that of those PCR with RCB1, and even for people like me with RCB2 the difference is brilliant and it brings me not that far behind PCR and RCB1 folks in the grand scheme of things! I literally sat and done all the maths for mines to check Just remember as well, the data is based on people having neoadjuvant chemo and surgery alongside Herceptin vs Kadcyla, but things like radiotherapy (if you need it) and tamoxifen or an AI will also continue to reduce your risk long term too. Other lifestyle factors like exercising regularly and having a balanced healthy diet also help. Looking at all of the data, I was really reassured and pleased (after I got over the initial shock!!) as this was only available to metastatic patients prior to 2020 so I’m glad we have such a good additional drug available to us now. It’s a long slog for sure, but we’ll get there
Advice for going stomach discomfort…. I finished my chemo in January and had mastectomy 11 days ago. During my chemo I suffered terribly with stomach inflammation throughout and was put on omperozole. I still get spasms when I bend over and a lot of bloating and belching and continue to take Omeprozole. I visited the GP who said it is still inflamed and continue taking Omeprozole twice a day. My question is how long does chemo belly take to go away. Of course I often google it and worry about what else it could be but then logic takes over and I know my stomach is weak as I had an ulcer a couple of years ago but fed up taking medication that I don’t want to
How long did it last for others after finishing chemo??
Hi everyone, I just thought to introduce myself after following this thread since last year after my mum’s diagnosis. I am from Nairobi, Kenya and out here there aren’t many platforms for BC support or even for caregivers. My mum was diagnosed last year in August 2024 with ER+ Her2+ BC. She had surgery(Mastectomy) first and 3 lymph nodes were removed(thankfully all negative). Her tumor was 18mm after surgery. In October she started Chemotherapy (Paclitaxel 12 weeks + Herceptin, completed in Dec and is now on Letrozole and Herceptin(until October).
We should put together a dossier on the facts surrounding Kadcyla since there seems to be more and more people getting put on it post-surgery. I know that when I was searching for info back in August/September last year, there wasn’t a huge amount of info and I had to spend a lot of time poring through the research and number crunching to understand it better for myself.
Welcome all the the thread. So nice to have you join us and that others have already been offering support. We are such a fabulous bunch.
@kpp I finished chemo over a year ago and still on omeprazole. I had issues before my diagnosis on and off over the years, had endoscopy back in my 30s reduced foods that predominantly upset the stomach. But 8 found found my stomach is still upset so easily. I came of omeprazole for a month and I had terrible indigestion and reflux. It maybe just me
@woody2 I can understand you anxiety with what is happening, you’ve been given such great advise from others. Sounds like your new team have a plan and that’s good. Do you know when your surgery is?
@debly123 i have used the Headspace app and use it daily. Here’s a link to access it for free from Penny Brohn cancer charity. Get some Headspace – Penny Brohn UK They also have a treatment support programme ( for chemo/surgery/radiotherapy or immunotherapy) some clinical hypnotherapy over zoom.
@salbert sorry to hear that. Hope it’s all fixed soon.
I had a visit to my oncologist today. I got some new info thats truly the best
The few remaining cells (mm) that they found don’t proliferate. Before chemo it was a proliferating rate at +30% thus a high proliferating rate. He told me that my response is equivalent to PCR (even though RBC 0 and 1). I just broke down sobbing uncontrolled in his office. I’m just so thankful given my initial prognosis that didn’t look promising. Today I feel peace.
Well, guess who has heating and water? Yes, yours truly does not smell today. The sinkhole gets bigger and one has popped up over the road now. I always wondered how it was safe to pile tons of concrete on top of empty caves and sandy soil. Turns out it’s not! This place is full of journalists at present asking for interviews. We’ve just turned the news on to see which of the locals couldn’t resist getting their mug on tv. I would if my hairstyle wasn’t so bad! I wouldn’t want to end up all over the local news with a pullet, eh @kartoffel
@jessybessy That’s too much. I know it’s daily stuff for our breast care teams but it’s our lives!! I’m so sorry you have a whole week to wait now. Awful to think that someone else has the information that you are desperate for at their fingertips. I remember calling up and begging my nurse for my results saying I couldn’t wait another week and she did actually tell me as she appreciated it was a long wait. Maybe become a big thorn in their side?
@belle1 What amazing info you have shared with @woody2. I think it’s so helpful to have those stats and definitely helps people to know that it’s not so unusual. Great stuff.
And @debly123 and @kartoffel can also sympathise and have great info to share. This is why this forum is so wonderful. A Kadcyla dossier sounds a brilliant idea. Maybe a dedicated Kadcyla thread? Not that we want to lose you from here.
@magl You are super blonde as in actual white blonde. I’m not jealous (with my bushy old bouffant!)
@galdiolus I was told that IBS post chemo is very common and mine appears to finally be subsiding. I finished chemo on 4th July so 7-8 months ago. (Apart from the bad morning after the full English fried breakfast on Sunday morning but I kind of asked for that.) I found Loperamide a lifesaver for the IBS attacks.
@kpp Welcome to our forum. Please say hi to your mum and wish her our best for a speedy recovery. Sounds like she is well on her way to the finish line now. My father-in-law loved your country. You couldn’t keep him away from Nairobi. No sooner would he get home than he’d book again. He was posted there in the British Army and spent his happiest years there so thank you from me because he was a grumpy old thing and Kenya was about the only thing that cheered him up!
@musestad HOORAY!! HOORAY!! I LOVE TO HEAR THIS NEWS. Thank you for letting us know.
I have some exciting news too. This weekend I am going to be meeting and having a cup of tea with the one and only @naughty_boob !!! It’s like waiting for Santa!
@salbert thank you so much. Luckily I am not at the stage of needing medication it’s more bloating and discomfort when bending. I foolishly hoped now I was six weeks out of chemo it might feel better but alas no still what’s another few months, I am certain it will pass so glad to hear yours did xx
Well it’s taken me 9 days to post again and there’s been a whole load to read. I never made the list of who I wanted to respond to nor have I slapped any benches or arses! Good to read everyone’s posts and meet new people who have joined the HER2 tale.
@salbert I watched the news last tonight and was waiting to spot tou loitering with intent in the background wearing your yellow crochet ensemble behind the sink hole, but you were nowhere to be seen!. If @naughty_boob is travelling east to Surrey I’m expect8mg a selfie with the great cavernous hole over your shoulders!
Last week I succumbed to a number eight with the clippers, felt a moment of sadness because of the reason for the haircut. By last weekend I was losing what remained of my hair. Sunday morning, washed what was left for the final time. I emptied the hot water cylinder trying to wash it off my body. Looked at my image in the mirror and saw a few hair islands on the back of my head, my widows peak and what resembled an inch long fringe across the nape of my neck. Not a mullet or a pullet, perhaps an islet. Baldilocks and the three hairs! It’s all gone now. Husband shaved it off. What I’ve realised is that is that it am very happy with my small ears that are quite close to my head. They are a little pointed in my Mums opinion - when I was born she asked the doctor if there was something wrong with me. She said I looked like a changeling . I was also told I have a nice shape head - I’ll take that as a compliment. Wore my wigs out. The flamboyant Stella, a big and ash blonde and then there’s the rather sensible Robyn. Steely grey serious sensible bob - giving me librarian or wool shop vibes. Think I need to wear faux leather trousers and bright lipstick so I feel more rock chic than book bag.
Recovery from second cycle of chemo etc not too bad this time. Same side-effects as last time but as I was expecting them it wasn’t too bad. Very chapped top lip and dry sore bloody nose have been a nuisance but Vaseline helps. No need for my top of the range Germaloid for haemorrhoid cream this time. Skin blotchy but no lumpy painful chemo acne. The Consultant practititioner had prescribed an emollient to wash with which I’ve used daily and my skin is like velvet. I’ve a course of antibiotics and antibiotic cream should my skin flare up.
Received the oncology letter following my New Years Eve appointment. It was a sobering read. Reason for chemo and targeted therapy etc to reduce tumour size, reduce risk of recurrence and survival… hmmm….
Today I’m treating my feet. Ugly feet but I’m grateful I’ve a pair that work. Then, if I’ve got the stamina I might go to pottery. We are making shrines, a spoon and spoon rest and a bowl. It will be nice to immerse myself in something else other than this.
Beginning to hear about people’s holiday plans and have felt a bit sorry for myself because at present the only plans I have are appointments. Three next week. Life outside ‘this’ is on hold and I can’t look further ahead than a week. It’s all a but pants really. Big pants. Big leopard roaring print pants. Perhaps I’ll wear those today.
My surgery (single mastectomy & TUG reconstruction) is just over a week away and the nerves have kicked in… I’m trying to get myself organised for my stay in hospital and beyond, but I’ve got a bit stuck on bras. I haven’t had my appointment with the plastic nurse yet, so thought I’d ask you lovely lot.
I currently have implants and have opted for a tissue reconstruction as I don’t want implants moving forward. This does mean that until my breast symmetry surgery, I’m going to be much smaller on one side. After surgery, my newly reconstructed boob will need all the support it can get, but how will this be possible when the bra will need to accommodate the larger boob? I wouldn’t have thought that padding the bra immediately after surgery is recommended, but I just don’t know. Any advice would be most welcome.
I love how chatty we all are on here , it does however mean that my menopause/chemo fog brain struggles to keep up !
@jessybessy I’m glad to hear you are recovering well from your mastectomy x
@kartoffel well I can’t wait to be on trend with a pullet!
@salbert … typical that you have a lovely weekend away then return home to that … has it been sorted yet ? I think you look fabulous with blue hair ! @maria1970 I got a lovely post surgery bra from cancer research , it’s ideal if there is a size descrepancy - I also got some yoga bras which were great and really supportive … I think there be fine with different sizes and would @musestad still support your newly constructed boob x
Well today I went for my herceptin only to find that the drs still want me to have pre meds via a cannula before hand … so it wasn’t a quick visit … plus it looks like I’ll be having the herceptin via infusion now moving forward as they said I may as well if I’ve got a cannula in … only 13 more to go
@mrsjelly you are doing so well , facing this rubbish with a positive attitude and your fabulous humour , I keep thinking of Wendy’s wools from Wallace and Grommit when you said about wool shop vibes I’m sure you are NOT Her ! I cried a bit when I shaved my hair off but I wasn’t a fan of hair in my food
Kadcyla really does help with bringing the risk down closer to that of those PCR with RCB1, and even for people like me with RCB2 the difference is brilliant and it brings me not that far behind PCR and RCB1 folks in the grand scheme of things! I literally sat and done all the maths for mines to check 
Just remember as well, the data is based on people having neoadjuvant chemo and surgery alongside Herceptin vs Kadcyla, but things like radiotherapy (if you need it) and tamoxifen or an AI will also continue to reduce your risk long term too. Other lifestyle factors like exercising regularly and having a balanced healthy diet also help. Looking at all of the data, I was really reassured and pleased (after I got over the initial shock!!) as this was only available to metastatic patients prior to 2020 so I’m glad we have such a good additional drug available to us now. It’s a long slog for sure, but we’ll get there 
. I was also told I have a nice shape head - I’ll take that as a compliment. Wore my wigs out. The flamboyant Stella, a big and ash blonde and then there’s the rather sensible Robyn. Steely grey serious sensible bob - giving me librarian or wool shop vibes. Think I need to wear faux leather trousers and bright lipstick so I feel more rock chic than book bag.