Morning Sal
Just to say, welcome to a safe place where you can say anything, ask anything. So many women are experiencing what you’re going through. You are not alone, you have lots of sisters!
I had cancer in one of three lymph nodes and 4 years on from surgery I’m doing fine. When I was told I had breast cancer, I asked, “Can you fix me?” and in true Bob the Builder style, the reply was, “Yes, we can!”!
Hold on to the knowledge that your breast care team are experts in their field and want to do everything to make you well.
Keep posting, keep letting us know how you’re doing. We’re all with you in this. God bless. 
Xx
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Hi @salbert,
I too can sign up to the HER2 positive club!
Diagnosed May 23 following routine mammogram & recall. I just know my tumour wasn’t there 3 years ago at the last screen and then it was! I couldn’t feel a lump, but it’s deep/far back. Further tests & biopsy showed one tumour in my left breast and 3 lymph nodes affected. I like you was convinced it was racing all over my body already. I was HER2+ve and oestrogen positive.
Anyway, everyone was v kind & treatment plan was:
Chemo first - (it’s called neoadjuvant when they do this). I had 3 cycles of one cocktail and then 4 of another. For these last 4 I also had Phesgo (a combination product that contains ‘Herceptin’) at the same time.
Like @Sara123 my tumour shrank to almost non-existent and armpits cleared after just a few cycles. They could tell this from MRI scan. But I kept going, so chemo July -Nov, then surgery was lumpectomy and full lymph node clearance on 15th Dec. I’m recovering from that right now - first time I’ve taken any proper time off work. Working from home I managed to keep going throughout chemo apart from the odd rough day. Now I’m in another waiting phase - results of surgery are on 4th Jan. I am a bit apprehensive, but expect to be handed back from the surgical team to medical oncology for a short course of radiotherapy and then it will be for me to recover and gradually get back to a more normal life. The Phesgo keeps going every 3 weeks for 18 doses in total, so I’m off to the hospital for what will be dose 6 today. It’s just a short - 5-10 minute injection into my thigh. I’ve been totally fine with these so far.
I would love to follow your journey with you. Do keep sharing. Meanwhile know we on this Forum are all with you…
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You are wonderful women. I’ve just read this to my husband and burst into tears. (Again!) How are there words to adequately describe the gift of hope, support and friendship. I feel I have in 24 hours found a little club of survivors and fellow warriors.
Suedot, it’s great to hear that you managed to work throughout apart from the odd rough day. Luckily my boss got through Stage 3 lung cancer and survived it so has been really supportive.
Alwaysachoice_1 thank you for being my sister. I woke up from my last surgery and said ‘Can you still cure me?’ and my consultant said something along the lines of 100% curable but that was before the lymph node involvement results which threw me all over again. Now, hearing your stories the light is finally dawning, after a dark 48 hours, that it is STILL curable despite lymph node involvement.
I’m sending you all a massive hug and I hope you can feel it.
Sal
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Hi Sal,
I’m another member of the HER2+ club. I had a similar experience to you, diagnosed in early October with a 17mm triple positive invasive ductal tumour in left breast. Intially thought I’d have a lumpectomy, radiotheraphy then endocrine. Turned out I had another 8mm lobular tumour discovered by MRI scan. I had a mastectomy with a simple reconstruction on 10 November & have recovered from that well.
I’m now waiting to confirm that will have to have chemo & herceptin in the new year. It would be 12 weeks of weekly doses of Taxol, along with 14 doses of herceptin every 3 weeks. I am disappointed to be facing this, but I’m going to try to be as positive as I can - and to be thankful for treatment that will hopefully help us not to have a recurrence! I’d be happy to chat along the way & hope we can help one another through this.
All the very best for your next appointment.
LMD
Thank you for sharing your journey. It make it seem better for the future. I’ve just finished 12 weeks of chemotherapy and each day is a struggle. Swollen ankles, sore head (cold capped, so kept most of it), aches joints, sleep deprived, sore nails, the list goes on.
At least I know that 2024 I still have Herceptin, 4 monthly MUGA heart scan and my first Zolendronic acid infusion in April ( have dentist in January, earliest I could book as they couldn’t get me in before chemo).By Autumn I should be done and hopefully have a better 2025!
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Thank you for sharing. I’ve just finished 12 weeks of Paclitaxel with Herceptin 3 weekly. I cold capped and kept 98% of my hair, just two small patches above my ears where my glasses go. ( I put my glasses under the cap in error, none of the nurses told me not to), they should be worn on the straps on top! If you have any questions, I’m here to help if I can.
I wasn’t able to work, have been signed off since diagnosis in May. I work in a school, so not the best place to keep away from illnesses! They had scarlet fever outbreak just before Christmas. Also teaching is not any good with chemo brain and crying for no reason! My brain is not functioning the same. Not sure I’ll ever return to teaching, I was always catching bugs with asthma and heart condition before the bloody cancer! Maybe time for career change.Breast Care nurse said lots of ladies decide the job they were doing isn’t right anymore and do something they really enjoy rather than have too! 
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Hello LMD and my new regular friend, Naughty Boob
Thanks so much for sharing your stories. It just helps to chat with other people who are also going through this scary, stressful nightmare that you are suddenly plunged headlong into. Like they say, the club nobody wants to join.
I’m loving the tip about glasses being worn over cold cap. I’ll certainly be doing that. I’m also really disappointed to know that chemo is now a definite but trying to see it in the light of ‘WOW! How lucky are we to live in an age of a wonder drug that will kill this nasty little mutant that has invaded our bodies’, but it’s hard because of course, we all wish it had never come in the first place.
I wonder if I will go back to teaching. I love it but at the same time it takes so much out of you and children are walking Petri dishes.
Please, please let’s all keep in touch.
And now, a Friday night yawns ahead and I guess I had better learn how to sit still and watch the telly like a normal person. I don’t even know how to turn the thing on! I don’t want to go and join my husband in the pub as the last thing I can cope with right now is a hangover and I’m such a lightweight that it’s almost a given. (By the way, I did send him there as I wanted to be free to let rip during my phone counselling session and my word, she did get it today, the poor woman!) I’m not teaching tomorrow so no lesson prep and so I find myself at a loose end. I feel like my normal has gone.
I keep finding myself going ‘Cancer? What? CANCER?? ME??!!! How the hell did that happen?’ Anyway, I’m burbling/splurging when I really need to go and eat something healthy and work out how to use the remote control.
Speak soon, wonder women!!
Big love,
Sal
xxxxx
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This club sucks loads but we do have the best members. So welcome. I’m so sorry that every time you’ve gotten news it’s been worse than what you’ve expected. It happens but it always sucks when it does. So in saying that realize it’s not unusual. It’s fairly common for IDC to hide among DCIS cells and not to know it until surgical pathology comes back. And considering you’ve got HER2+ receptors, it’s also not particularly surprising you’ve got lymph node involvement. It is an aggressive breast cancer that normally moves quick. BUT, and this is important, in breast cancer world the quicker the cancer moves the quicker it falls in treatment. Chemo works great on those SOB’s and Herceptin has been a game changer. No this isn’t going to be fun and you’re going to feel worse before you feel better but the chances are highly in your favor that this treatment is going to work fine.
Also, this is by far the worst of it…the waiting. But it’s only one more clearance and then treatment will start and once that happens a sense of control comes back. And with it, a needed sense of peace. So know this horrible anxiety and feeling does pass and remember you’re almost through the information gathering time.
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Salbert aww right back at ya hun , we are all warrior women on a mission to live our best life after devastating life changing news , but we all have a much better outcome due to amazing research and life changing drugs on top of strength, determination and positivity, sisters from other misters
Keep us informed lovely take care xxx
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Oh you brilliant, brilliant women.
It is so good to hear that an aggressive cancer (horrendously bad news) is also one that falls quickly when it’s attacked back (super good news). Nobody told me that before so that’s fantastic to hear.
I love that…. a crap club with the best members!
Sleep well, lovelies.
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Hi Naughty Boob (love the name). I’d love to chat more and especially hear any tips you have to get through the 12 weeks. How did you find it? I am feeling very apprehensive about it all. I had my surgery in London, though I live in the mIdlands (long story), but that worked fine. I’ve decided that I would prefer to have the oncology side of things done more locally, so I’m just trying to get all that sorted. It’s been a little delayed by Christmas, but it’s been nice to get off the cancer bus for a while and just try to enjoy life. I’m pleased to hear that the cold cap worked for you. I’m going to try that too & luckily I don’t wear glasses, so one less thing to worry about. I do hate being cold though, so I’m going to have to bring along some warming props I think.
Like you my brain is very foggy. I was on HRT until the diagnosis, so that may be part of the reason. I co-own a small children’s nursery, looking after the admin side of things, working from home - so fortunately not too much exposure to the constant rounds of infections from the little ones. I have managed to get one of my sons to take over a lot of the day to day stuff, but as an owner of a small business, it’s been very difficult to stop working completely. I don’t know how that’s going to go once the next stage of treatment starts! I’m also not feeling very inclined to go back to my old workload once treatment finishes. I feel like my life has changed so much in just a few weeks. Thankfully, my husband has been fantastic & I’ve been so lucky to have lots of support from great friends and family. I used to be the fit and healthy one who looked after everyone else, it’s hard to cope with such a big change! xx
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Hi guys
Somebody mentioned the CALM app. I downloaded it last night and got very angry at a man telling me I was relaxed but then fell asleep! This morning whenI woke too early I did a guided meditation and went to sleep again.
This is very encouraging so I wanted to say thanks to whoever recommended it and do the same for everyone else. Lots to choose from on there.
Also went for a lovely winter walk with my husband this afternoon and that helped too. Anything to take me away from depressive, doom-laden, spiralling brain.
I’m told distraction and do lovely things for yourself. I guess it’s obvious really but it helps. Also somebody told me about a grounding technique, The Butterfly Hug. I was doing this in the car this afternoon in time to ‘Dirty Old Town’ and singing along. Seemed to also help. https://www.youtube.com/watch?v=iGGJrqscvtU Fortunately I wasn’t driving!
And now we’re off to see friends and I’m bloody well going to enjoy myself!!
Love to all,
Salbert
xx
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Hi lmd1
Please include me in the chats. Can we do them on here? I want to know what to expect and compare with my new buddies. Really good to hear the cold cap worked. I’m going to try that too. I’ve always hidden behind my hair and I’m too scared to brave the shave.
I too did HRT cold turkey so wonder how much misery and upset is aided by that.
You also work with little children. I wonder how much stress of workloads is responsible for illness. I wonder if I may also cut down after this. Priorities changing and all that.
So much wondering…
Anyway, I must dash.
Is it too soon to admit that I am a big Eurovision fan? Will you all disappear? I’m sane! I’m fine! Really…please stay!! 
Sal
x
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Hi again Sal,
I should add I also had Pertuzumab alongside the Herceptin, another drug I felt very lucky to be able to receive as I know at one time it wasn’t available to all areas of the Uk. I also have IV Zometa infusions every 6 months but don’t have any problems with these. There is so much help available, keep in contact so we can hear how you’re getting on, take care.
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Re Paclitaxel for 12 weeks. I had Herceptin injection on my first week and then 3 weekly, I don’t noticed any extra side effects on those weeks. As I’m due to have the Herceptin alone from next, I’ll know more about its own side effects.
The first two weeks of Paclitaxel were ok, unfortunately, on my third week I had an allergic reaction after 20 minutes, felt sick and hot in the face. I was then sick quite badly. I was given iv Piriton for the allergic reaction but had to wait over an hour for an anti sickness IV ( even though I’d already had it as a pre med) as I was in an outreach unit run by nurses and they couldn’t get a doctor to prescribe! I was informed that if you have an allergic reaction it’s usually in the first few weeks. They say the body suddenly recognises the chemo and then says I don’t like it I need to get rid of it. I only had half the infusion as there was no doctor present they couldn’t restart, if I had been at the main cancer centre, they would have. On my chemo starter threads June and September, other have reacted and were swapped to Abraxane, still Paclitaxel but with albumin, also called Nab-Paclitaxel. So there is always options. Don’t worry!
The next week I was prescribed some drugs to take at home the day before, after chemo and the next day (antacids, antihistamines and steroids). The premeds stop any further reactions. Side effects lasted longer and increased over time. They tell you that the chemotherapy is cumulative.
At first I had sore mouth and throat, had thrush in the second week, GP prescribed Nystan, resolved quickly. My taste changed, I preferred salt foods and water tastes so horrible. I preferred citrus flavoured drinks rather than fruity. I was given a mouthwash after 8 weeks up until them I was gargling with salt and bicarbonate of soda in water. I cleaned my teeth after every meal.
Had diarrhoea on the night of chemo and was prescribed Loperamide, told to take as soon as you have it. Oncologist had warned about this and the first chemo they didn’t prescribe so husband running to nearest supermarket at 8pm for Imodium (brand name for Loperamide). So make sure they give you this! This worked well but was then constipated for a couple of days and an iffy belly until next chemo. Around week 5/6 at my 3 weekly clinic, told could take the loperamide in small doses over the whole week if needed as the chemo affects from the mouth all the way through you to the other end! Had wind and cramps, given Buscopan but they didn’t go with the anti nausea, so they were swapped. Didn’t take more than a day to two.
First anti nausea was Metochloperamide, swapped to Cyclizine which worked well as you could take for up to 5 days and towards the end I needed them for at least 4 days, 3 in the early weeks. The nausea wasn’t too much of an issue if you take the medication regularly. I also had some pustules/spots given fucidin cream. GP said it’s not the worst of my problems, but I’ve always struggled with my skin, so it was a big issue for me.
My hair follicles were sore, had to wear a hat if outside as I could feel the slightest bit of wind! My hair shed a little and I only washed it once a week after chemo, brushed daily and treated the scalp once a week. I used Percy and Reed scalp shampoo, conditioner and treatment. Not the cheapest but have used for menopausal hair loss. I had tingling and numbness in fingers and toes, the oncology team were only bothered if it was permanent/persistent, it came and went, worse at night and early morning. I dropped a few things and buttons were an issue.
My skin was very dry so I moisturised everyday. Unperfurmed as I was very sensitive to smells, I even bought a cheap Aldi perfume to wear for my time in chemotherapy so I didn’t dislike my own perfumes.
I caught an infection after week 8 and had a temperature, went to the cancer centre given oral antibiotics as they said my temp had gone down, 6 days later I was in hospital on oral antibiotics (4 different types) for 6 days. Missed 2 weeks of chemo. It was an unidentified infection, thought it was a UTI. Temperature took 4 days to reduce then my bloods went haywire! Liver needed a scan early December, awaiting results but everything settled with a few weeks in my bloods.
Last 4 chemotherapy I only had two good days and one of them was in the chair again. We spent at least 6 hours up to 7 1/2 with travelling, cold cap and infusions. So not much else could be done on that day. My nails began to get sore near the cuticle, red and inflamed. I had done the www.lookgoodfeelbetter.com course and its was great. Moisturise daily and treat cuticle with a balm, if infected or nails fall off use Vicks Vaporub ( it works, the Vaseline texture protects and the camphor is anti bacterial). Would highly recommend all their course I did mine online and received good in the post.
I think I’ve covered everything. It sounds horrendous but I did it and so can you all. I’m now 2 weeks post chemotherapy and each day I feel better. It’s going to take a while to find my new normal. Hope it helps
Updated: Just to add the oncologist had wanted me on Doxetaxel and Carboplatin with Phesgo (Perjeta and Herceptin) but due to asthma and supra ventricular tachycardia and family history of cardiomyopathy they decided it would be too much. Also my tumours were 2cm grade 2 and 1cm grade 1 no lymph node so decided that Paclitaxel and Herceptin would be best for me.
I also had a PICC line fitted for blood to be taken and infusion instead of a cannula each time. PICC line is not without its problems, I had a blockage and spent 1 1/2 hours extra in clinic. (luckily the radiography dept had a spare session, so talked me through what would happen). By the time I had finished the PICC was working again. I became allergic to the dressing so that was changed and sometimes it would weep. I had to see district/community nurse for a dressing change and bloods weekly, every third week the bloods were done in clinic. They would check that your blood levels were ok for your next infusion.
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It does sound horrendous, I won’t lie, but you did it. You are over the worst. Thanks for your honesty and I will look at that www.lookgoodfeelbetter.com course so thanks for that tip.
I’ve had a lovely day; been out walking in Cowden with my husband and round to friends this evening and it felt normal so it’s weird to think that everything isn’t normal and to know what I have ahead.
My boss, who got over Stage 3 lung cancer, said to put cancer in a box and get on with your life and just visit it as and when you have to. Great advice but not always possible. Depends where your head is at on a daily basis, I’m finding.
Sleep well, buddies.
Sal
xx
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Hi her2+ er and pr+ 3 tumours now on year five after initial treatment. Diagnosed june 2018 invasive lobular, ductal and carinoma . I had chemo before doxetaxel, carboplatin, perjeta and herceptin. 2 chemo 2 targeted therapy through iv every 3 weeks, six cycles. Then mastectomy, 15 out of 25 nodes were cancerous, so had radiotherapy for 3 weeks. Continued to have a further 12 injection of herceptin and now on letrozole , already done 5 years another 5 to go. I feel good, yes i ache but i don’t worry every day about cancer. Obviously if i had symptoms, i am on patient led so can go straight back to hospital. The treatment was aggressive as my oncolgist told me. I just turned up every 3 weeks and was positive, obviously you have side effects but you have medication. Listen to your body, and your oncolgist they are the ones looking after you. Your have up and downs, but you will get through it.
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My goodness me. The things you guys have been through. It’s humbling, it’s scary, but above all, it’s encouraging as you’ve done it and you’ve come out the other side and for those of us that haven’t yet, it helps to know that it’s not insurmountable.
Thank you.
Xx
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Hi everyone,
Reading the thread, the key thing to keep in mind is that everybody’s journey is different.
I’ve done 7 rounds of chemo at 3-weekly intervals. It definitely got cumulatively harder. I had 3 x EC (epirubicin + cyclophosphamide) then 4 x docetaxel + Phesgo. It’s the Phesgo that contains the Herceptin as one of its 2 ingredients. I battled constipation on EC, but then totally relate to the diarrhoea with the ‘taxel’. It’s 6 weeks since my last dose of that & it’s still an issue. But then again diarrhoea is also listed as a side-effect of Phesgo and I’ve kept going with that alone, so maybe that’s now the trigger? TBH it starts to become hard to tell what is what! Then I too had major taste changes with water and everything tasting horrible- it was one thing that kept me working because it took my mind off how hungry I was. I ate a lot of ginger biscuits and sucked some very sour sweets. A friend gave me a bag of gin-gins and they were good too.
But on the upside, I too have done the Look Good Feel Good course and would recommend it. Also, I’ve not had any allergic reactions or infections other than one dose of thrush(both ends!) early on which resolved with a course of fluconazole.
As I write I am still wondering if surgery just 4 weeks after my last dose of chemo was a good idea - it’s made me more fatigued than at any other time so far, but then there was Christmas in the midst of it all and I am glad to have it behind me.
So as I started out, we all have to own our own experiences and journeys, but sharing is caring and we’re all with you all the way Sal. You’ve got this.
X
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Hi suedot
I had a bad night’s sleep last night and all my optimism and good spirits of yesterday are gone. Today all I feel is anxiety and fear. This is such a rollercoaster.
Thanks for the reminder that everyone’s journey is different. At the moment I can’t fathom how I am going to get to my appointment on Thursday then wait for my next surgery date (my 4th one) then wait yet again for results. I feel like begging for a mastectomy as I cannot handle another set of results telling me they don’t have clear margins. I just want to get on with the treatment as it sounds so frightening and it’s hanging over my head and all the time I am worried that it is spreading through my lymph nodes into other parts of my body.
Sorry guys…bad day today.
Sal
x
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