HER2+ and need some buddies

May I hijack your lovely vigorous thread for a HER2+ treatment question please? I’m post chemo, surgery and now radiation for HER2+, ER+ Lobular carcinoma and I’ve been lucky enough that the treatment has achieved a complete response. My oncology consultant therefore stepped me down from phesgo, which I started with docetaxel during chemo May-June, to just herceptin on its own, which I’ll complete the full course of sometime in April of next year. My body is still recovering from the various onslaughts of treatment but as things settle I’m now wondering what might be a herceptin side effect which I hadn’t clocked so far. One thing I was curious about was my voice - it feels less powerful than before, and I’m struggling to tune very well or hit the range I’m used to (I’m an amateur singer and was the volunteer leader of a community singing group before diagnosis). Just wondering if that is familiar to anyone, or indeed if there are any things you noticed went away after you finished herceptin that you hadn’t realised were side effects.

Thanks :heart:

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@mrsjelly wow is it two years already .. time is flying by .

I totally get what you meant about having chemo , I felt like all I had to go was just survive the day most days . Then once I’d finished my chemo I hit the ground running trying to to run my business again and I’m just permanently exhausted . My business has died due to my move and I’m thinking it might not be a bad thing .

Well done for taking the plunge and resigning .. what’s that saying .. don’t kill yourself working a job that will replace you in a heartbeat .. you and your health come first s x hopefully you can look forward to actually being kind to yourself and doing nice things x

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@wibbles no surprises that you don’t feel celebratory when treatment is still ongoing .. You just get totally treatment/hospital fatigued and recovery from the surgery can feel exhausting .

Take it a day at a time and be kind to yourself x

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@naughty_boob oh my god what a horrible experience .. was this recent ? A and e had become like a third world system now , there is no such thing as emergency care now . It’s wait there for a couple of days and if your still alive well treat you.. well it feels that way anyway

I was at Glan Clwyd first thing this morning as had an abdo and pelvic ultrasound due to abdo pain and also following up an ovarian cyst . and I was stunned by how run down the place seemed since I had my daughter there in 2010 . All the corridors had taped off areas where ceiling panels were damaged and falling off .. the place was filthy .. certainly compared to Great western.. and just generally looking run down. The couch I lay on to be scanned was all ripped :flushed_face: I’m not sure I’d want to be an in patient these days ..probably end up with a nasty hospital Bourne infection

I’m back tomorrow for a bone scan .. such fun

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Morning all!

I just wanted to check in to see if anyone else relates to what I have been experiencing lately. Basically, two weeks ago out of nowhere I suddenly developed classic symptoms of Dropped Head Syndrome. I’m now struggling to walk, probably not safe driving and unable to do any exercise.

I’m wearing a collar and in order to eat I need to bring a plate up to my mouth. Swallowing is ok, just hard to bend head back or forward.

I mentioned it to the chemo nurse last week and she was confused. She said she would talk to my onco. I plan to ring today to get an update (I was away with work from Weds last week, so had to park this for a short while).

Has anyone else experienced this? Checks on Dr Google suggest that, while rare, it could be the Docetaxel and an extreme form of neuropathy.

I’d just like to know if I’m the only one, or do others relate to what I am talking about.

Thanks. x

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I’m sorry @Jaygo that sounds horrendous. Can you ask for an urgent referral to a neurologist? I’m afraid I don’t know anything about dropped head syndrome in people and not something I have personal experience of but I know that peripheral neuropathies can also be auto-immune or metabolic and they might want to do some investigations? Did you have other signs of peripheral neuropathy at the time of your chemo? When was your last dose? Hope you get more information and support soon xx

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Thanks @eils85 it is rather horrendous I have to say. I brought it up last week when I had my herceptin jab. The chemo nurse was perplexed despite this being her area of specialism. She said she’d have a word with the oncologist. I’ve been working away since so haven’t been able to chase it up, but I will ring my BCN shortly to ask her to help chivvy it up.

I finished Docetaxel in February and I seemed like one of the lucky ones that I didn’t suffer too badly with neuropathy. A bit of tingling, but nothing debilitating.

I just feel that there is a whole load of stuff they don’t tell you about in the glossy brochure about the bag of poo that is served up long after the drama is over. I realise there are very good reasons for it, but even so, it has burst my bubble a bit because I was led to believe that at this stage in my treatment I would be able to live my life normally.

I will report back if there is anything to say in case it helps someone else. x

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I think this is one of those times you might have to self advocate a bit (which I’m sure at this point you’ll be a bit exhausted of). If you don’t get anywhere this morning with the breast care nurse would you consider getting a same day appointment with the GP as they might be able to sort an urgent referral for you. You could also contact the advice nurses at breast cancer now in order to try and understand how likely it is to be related to your chemo/radiation or not. I’m sure everyone looking after you at your hospital is brilliant and you are in great hands but as we know sometimes the system isn’t great and the pathway to getting yourself assessed by the right person isn’t always straightforward. Sending strong neck vibes (?! I panicked, what can you helpfully ‘send’ over a message :zany_face::joy:) and keep us posted x

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Thanks @eils85

My BCN has just called me and is going to speak to the oncologist today who is currently in clinic. Here’s hoping my onco can help. My experience is that she has been REALLY good up to now and has really gone the extra mile for me with other stuff. I’m also going to be starting on Zolodrenic Acid on my next Herceptin infusion which would not normally be prescribed for HER2 +ve, but given my back problems and significant loss of height, she has decided it is the right course of action for me.

Hopefully she will advise me on this latest development. I’m worried that it might be neurological. I’ll keep you posted. x

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@arty1 it was 2 weeks ago. Last time I went to the cancer centre and had my final Zolendronic acid/Zometa the chair had a rip in it. I asked how it could be cleaned properly and was told it was all they had.

Fingers crossed all your tests will be ok. Good luck with bone scan today. Did they manage to transfer all your information?

@Jaygo i can’t comment on your dropped head syndrome as I’ve never heard of it but hope you get the help you need when you speak to oncologist. I’m sure it’s extremely scary.

:smiling_face_with_three_hearts:

@mrsjelly hello, old friend. So good to hear your update. You speaking about the slow, quiet and simple life during bc treatment resonates with me big time. It has become abundantly clear to me that on returning to work, people will take from you as much as you allow them to. It took no time at all for the workload to be ramped right back up and yet I had promised myself not to let this happen again. I am getting better at saying no and giving myself the time out that I need but still find myself getting strung out at the pulls on my time. On hearing how tough you have found it since returning to work and the toll it’s taking on you, I feel jubilant at the news of your resignation. :partying_face: Bloody well done, you. How I wish I could do the same. I’m counting down the days for you and will be slapping my arse in tandem on the day you finally walk through those doors for the last time. Congratulations!

@wibbles Oh Wibbles, what a lot you’ve got going on. Firstly, those histology results are absolutely fantastic — complete pathological response, 15 clear lymph nodes and clear margins is about as good a result as you could have hoped for. But I completely understand why you’re not sitting there feeling instantly happy and relieved. After ten months of treatment, surgery, skin problems, a persistent seroma and now the prospect of radiotherapy, I think you are probably just completely exhausted. The skin situation sounds particularly miserable. I’m so sorry you’re having to deal with all of that on top of everything else. I think it’s really sensible that your BCN has told you to have a proper conversation with oncology/radiotherapy about it rather than just hoping for the best. They need to know exactly what your skin has been doing so they can plan around it and hopefully minimise the trauma. I’d definitely make a big thing of the fact that you’re reacting to adhesives, metal and different creams when you speak to them. Also, please don’t beat yourself up about the over-exercising. I think we’re all guilty of thinking “I feel a bit better, therefore I must be better!” and then discovering that our bodies have other ideas. Your poor body has been through an enormous amount. If the BCNs are happy that there are no signs of infection and everything is looking good scar-wise, hopefully some proper rest will give the seroma a chance to calm down.

Also I think many of us understand what you mean about feeling less like a woman. The physical changes after a mastectomy are hard enough without your skin making it impossible even to wear the things that might make you feel a little more like yourself again. But this is still so early in your recovery. Your scar and skin are not necessarily going to feel or look like this forever.

I’m glad you cancelled the meeting and are doing something more fun and low-key instead. Sometimes you just have to give yourself permission to do something completely unrelated to cancer for a few hours. In fact, I think it’s imperative.

And honestly, after the result you’ve had, I hope you can allow yourself a tiny bit of “bloody hell, I actually did it” alongside all the exhaustion and worry. You don’t have to feel grateful or happy every minute just because the pathology was brilliant. One thing at a time. Sending you a huge gentle hug — and absolutely no knitted knocker pressure whatsoever!

@waveylocks I am so very sorry to hear that your sweet little doggie companion has passed on. It hurts like hell. You are also getting a Salbert hug and am also more than happy to dance and drink champers with you on the celebrating of all those years clear. Your attitude in the face of so much adversity is bloody stupendous!

@carrie5 Thinking of you and your little doggie. We miss you and send you love.

@naughty_boob You are a shining example of how much good you can do by making those changes in your life. You achieve so much and give so much back. Sorry to hear that you’ve been so ill. You’ve been through a hideous amount. I did think to myself that you were quiet and now I know why. Welcome back, old friend. You too have been missed. Thank goodness you are ok. It goes without saying that you absolutely must get it all off your chest on here. That’s why we are here after all. Love and hugs to you.

@eils85 I couldn’t have put it better myself. Awesome women, all.

@felineoptimist Hijack away! Vigorous thread is a lovely description for this corner of the internet. :grinning_face: Firstly, congratulations on the complete response — that’s fantastic news! I can completely understand the “what is actually a side effect and what is just my body recovering from ten million different things?” stage though! I was on Phesgo myself and definitely found that there were things going on that I hadn’t immediately connected with treatment.

I can’t say I noticed the singing/voice issue personally, so I can’t tell you whether Herceptin is responsible, but I’d definitely mention it to your oncology team, especially as you’re a singer and it’s affecting your range and tuning. There are so many potential things that can affect the voice after treatment — tiredness, dryness, reflux, previous chemo/radiotherapy etc. — so hopefully they can help work out what’s going on rather than you having to guess. However, your post did remind me of the singer Anastacia, saying that her breast cancer treatment affected her voice and that when she tried to get back into the recording studio during radiotherapy, her voice basically disappeared and she physically couldn’t sing as she normally would. She is now totally back performing. I teach children to sing in my Musical Theatre classes and I believe I can sing as well as I did before treatment. I do hope this encourages you that your voice can return after you finish treatment.

Hopefully someone else on Herceptin will come along who has experienced exactly the same thing. And I’d be really interested to hear whether your voice starts to come back as your body gets further away from treatment. Fingers crossed for you — it must be particularly frustrating when singing was such a big part of your life before all this. I hated having my drama and musical theatre taken away from me while I went through it all. It makes it all the more precious to me now.

@arty1 I’m sorry that the scans and poking and prodding continues for you. Keeping everything crossed for you that this is all good news and you can finally get settled in your new home and get some peace and time out from all the relentless crap you’ve had to deal with.

@Jaygo This sounds very worrying for you. Definitely agree with @eils85 that this is one of the times to push for answers. It sounds incredibly frightening, particularly when it has come on so suddenly and is now affecting your walking and even whether you feel safe to drive. :worried:

I haven’t experienced anything like this myself, so I can’t really shed any light on whether it could be related to docetaxel. I would definitely chase your oncology team, particularly given how much this is affecting you. Hopefully your oncologist can arrange whatever assessment is needed and give you a proper answer rather than leaving you trying to work it out from Dr Google — which is rarely our friend!

It must be especially scary when you’re looking online and finding rare possibilities without knowing whether any of them actually apply to you. There are neurological side effects associated with docetaxel, including neuropathy and weakness, but there can be other causes too, so hopefully they’ll be able to investigate properly and put your mind at rest.

I really hope your oncologist gets back to you quickly and that they can work out what’s happening and, most importantly, get you some help with it. Please keep us posted.

All that is left for me to say is that I think you are all fabulous.

xx

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Just got back from seeing oncologist. They confirmed the histology results were more than better than expected. I am to restart phesgo for 12 rounds not the 18 Ì initially thought. (Already done 6 with chemo and then agreed to hepericin by infusion till chemo completed after so many nasty adverse reactions to initial chemo drugs) Radiotheraphy has been recommended based on the original size of the tumour. seeing radiology oncologist next Monday who has been flagged by chemo oncologist that my skin is still very reactive and supersensitive.

The bit about being able to avoid further chemo due to the response to the first lot of chemo is such a relief. Chemo really made me rather ill.

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@Jaygo l do hope your oncologist can offer advice, support and even help.

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I’m just having a catch up on so many posts, I can only second what lovely @salbert has said. @Jaygo really hope you get a good explanation and action on your neurological reactions, and really positive vibes to everyone having reactions during or after chemo, it really does keep intruding and won’t let us quite forget and move on.

My little Dachsie has recovered well from the removal of her mammary tumour and is back to the vets this Thursday for more investigations to check if there’s anything anywhere else. I hope not as I will struggle with the decision if she needs chemo. On the plus side I’ve just driven back from Scotland today and that’s the longest drive I’ve managed since all the treatment phases. A lot of stops for doggie walks and stretches for me, very stiff thanks to AI’s, but I did it and my concentration was good.

The trip was to finally carry out my husband’s request regarding his ashes, only two years late, but its done and went to plan. Then I’ve done lovely walks during the week and enjoyed peaceful woodlands, coast lines, and red kite watching. It has felt very healing. A few issues walking with my totally trashed big toe nails but I could mostly forget them.

@mrsjelly lovely to hear from you and do tell us how this next phase of your life goes.

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Oncologist suggested I go to A&E. Yeah great idea. Got there at 1pm, finally discharged myself at 11.30pm without getting any care bar for two triages and two lots of bloods.

I’m frustrated and disgusted. Plus, it’s my birthday today, so I was buggered if I was going to see it in on an SDEC ward. Depressing. Not a scrap of food since lunch. I was starving and tired. A total waste of time. Just wondering ‘now what?’, but for now I’m enjoying a glass of wine. I will worry about the now what another day, but not today.

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@Jaygo not a good experience.

For the moment have as great a birthday as you can possibly manage.

Have you noticed any change in how your neck and anywhere else that’s affected feels - Is it getting worse or better or staying the same? Wondering if there’s any other route you can use, eg ask for physio referral, they can sometimes be good at pushing a referral on to a relevant speciality if they think something is amiss.

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Thanks. I’ve rung the BCN to see what options I have. Frankly I’m sick of the sight of hospitals at the moment. For now I’m going to enjoy my birthday and the company of good friends. Well done on driving so far with your little furry friend. xxx

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@wibbles This is good news indeed.

@carrie5 I’m relieved to hear your little Dachsie has recovered well and am keeping everything crossed that this has removed everything. Scotland must have been emotional and I’m glad you found some peace up there in the beautiful surroundings. My toenails now have to be permanently painted. I have come to the conclusion that they will not fully recover. The big ones simply don’t grow and if they do, they promptly get damaged and fall off again. This is one of those side effects that has stayed with me. Well done on such a long drive. A very good sign.

@Jaygo There’s no other way of putting this; that’s totally crap. I would say happy birthday but it doesn’t sound like this is going to be one of the better ones; memorable perhaps, but not jolly. However, I do insist you eat cake. And drink more wine.

Love to you all.

x

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So sorry to hear about all you are dealing with currently! Just want to wish you a Happy Birthday :birthday_cake:

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As an update, the chemo team have booked me in for an MRI on Friday. All good.

@salbert I’m having a lovely day despite my neck. There will be Spoons curry. There will be wine and there will be singing at our regular open mic night. Thank you for your birthday wishes. x

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