HER2+ and need some buddies

I agree whole heartedly about the mental health side being ‘ignored/sidelined’ by many medical professionals. My breast cancer nurse was lovely but said straight to my face that I was dealing with it all ok and didn’t need to be referred for counselling. I wasn’t doing ok and I had cried several times at this meeting. I then had two different lots of counselling and both agreed I needed it, this was through my workplace. Still not sure I’m over ‘it’, some days are harder than others.

I have spoken to a few people in my health board and it seems they prioritise those with secondary, which is understandable but those of us with primary have the worry of recurrence or spread that never seems to go away. How do we deal with that? I get that some people can just put it in a box at the back of their head and never open it and get on with their lives. Where others can’t even put it in a box let alone close it. Again we are all individuals and should be treated as such but the system seems to be a one size fits all where I am.

I’m sure most of it is about funding.

:smiling_face_with_three_hearts:

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Ooooh….the discomfort of having the post chemo innards :poop:. Singing along to Mr Cash’s :ring: of :fire: did nothing to distract me from the burning.

My friend dropped this round and handed it to my daughter who was somewhat perplexed :joy:

Not used either yet. Put it in the freezer for next time! If my husband gets on my nerves I might serve it up for his dinner…

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Is that a carrot? :joy::rofl::rofl::joy:

:smiling_face_with_three_hearts:

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Wow a lot of reading to catch up on! I been on my first holiday for just over a week and did not click on this once while i was there.
Hope everyone is doing okay as much as they can be! Was nice to get away… im only back 5 days and im off again :eyes::face_with_open_eyes_and_hand_over_mouth: got to live my life again now as my nurse said other week… which i bloody plan to do! Don’t get me wrong some days are hard.
Welcome to the group @kittykat88 sorry to hear about the diagnosis but any questions and advice im sure someone will help you :slightly_smiling_face: it does seem very daunting but its also very doable, its just getting over your first chemo.
I just wanted to ask you lovely ladies about the bone infusions… still not made my mind up about infusion or tablets… not sure what to pick? Any advice would be very appreciated. Heres a pick of me living my best cornwall life for the week :two_hearts::heart_hands: jemma


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A frozen carrot and a bag of I’ve cubes… haven’t used any…. yet!

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I think my oncologist would have liked me to go for counselling about the injections, as if me doing that was easier than just switching the damn med.
I don’t understand how it’s cheaper/easier for me to get likely even more stressed arranging appointments and having to unload to a stranger.
Therapy works for many people and I’m by no means against it but I didn’t need it in this instance, I just needed to minimise the injections from 42 to 6.

Therapy should be available and imperative for ALL patients, regardless of where they are in living with cancer (primary or secondary).

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Evening all and a big hello and welcome to @kittykat88. I was sitting in my field and thinking to myself, I wonder who will find us next when their life has just been hit by a freight train, because I’m sure we’d all agree that that is what it feels like. I’m so sorry that it was you but at the same time, it’s good to know you found us. It is overwhelming and such a horrid shock but we’ve all been there and understand. As others have said, chemo is doable and you will be surprised at how much you can still do. They have to tell you about all the side effects but you won’t get them all and there is plenty they can do to mitigate a lot of it. Stick with us and if you feel yourself panicking or your mental health sliding in the wrong direction then get reading this thread. There is lots of encouraging and good news on here. Here is a big hug for you. I hope you can feel it.

@kartoffel - If it’s possible, potatoes have just got even better. There has to be a God, for there are potatoes and all their various and wonderful incarnations. Before I went campervanning on Friday, I cooked an insane amount of Jersey Royals and over the weekend, I sautéed them in olive oil, salt and pepper, not once, not twice, but thrice. Every evening meal in fact. No wonder I feel so happy!

@sassy3 - Sorry I don’t have any experience of an MRI biopsy but pleased that others have and can share theirs.

@sez Norks! :rofl: I love your terminology. Nork cancer. Nork Cancer Now! I’m just sitting here laughing at the thought of my grave and dramatic first consultant telling me “I’m afraid we’ve found nork cancer”. Thank you for that. I just had a slightly pinkened nork so it’s very possible that yours is slightly burned. (You know I’m going to be adopting the word ‘nork’ now. I first heard it about 20 years ago from my Bristolian cousin. Is it a West Country thing?) I was sent some Flamigel RT from one of the other women who was on my February Chemo Starters group and it worked wonders. However, my radiotherapy oncologist told me that the reason she recommends Aveeno instead is because Flamigel RT is expensive. However, she did say it was excellent stuff and would recommend it going forward. So it’s no stretch of the imagination to chalk it up to expense that stops your hospital from prescribing it. It’s definitely not just to treat irritated skin, it’s for the duration of radiotherapy and you start it from Day 1. Clearly your trust are cost cutting because giving yourself 7 days of filgrastim injections instead of the one pegfilgrastim sounds horrendous. I had to get my husband to give me that one pegfilgrastim because I couldn’t do it myself. I bet lots of people would struggle to inject themselves. Ha! I’ve just read further and read the word ‘noggin’!! :rofl: :joy: Norks and noggins. Noggins and norks! I love your turn of phrase.

I couldn’t agree more as regards the mental state. Physical and mental health are completely interconnected and I was in such a mess psychologically when I was at my first hospital that finding this forum was an absolute lifeline. It was the women on here that carried me through the darkest days until I switched hospitals and got a consultant and team who took better care of the mental side of it all. But then I was able to switch because I had BUPA through work so was able to go private. I don’t like to think what would have happened if I’d stayed at my first hospital. I had absolutely no faith in my first consultant after all his failed operations and he was so dramatic and doom-laden that it really messed with your noggin. When I told him I was terrified he replied “You should be, it’s cancer. I would be too.” Just so unhelpful and misguided.

@carrie5 I’m not surprised to hear what you did before retiring. It explains a lot. I agree with you and @kartoffel that to see the whole person rather than just treat the ailment would be far more beneficial in the long run. I was speaking to a mental health nurse not so long ago who was saying that it was so short-sighted to underinvest in children and teenagers mental health as she then had to deal with the unresolved stuff that doesn’t go away and affects the adults that end up in her unit when they hit a crisis. Carrie, I think your points are excellent and it makes me think I should do what I’ve been mulling over doing for over a year now and raise my concerns about the hospital where I started out before switching to Marsden.

@naughty_boob To hear that you sat and cried several times then got told you were dealing with it all ok is sad to hear and a perfect example of what we are discussing right there. The counselling I was able to get on BUPA also carried me through the dark days. I hate that some women go through this without the mental support. It’s why I feel so strongly about this forum. We can truly help.

Ha! @mrsjelly I’m pleased to see your friends are as sympathetic to your ring of fire as my family were with regard to my hair loss! I’d like to share with you that I found myself offering up a prayer of gratitude for my digestive biology’s return to normality when I discovered how far away the toilets were from our camping pitch this weekend. With each step I gave thanks that I had not sh*t myself which I undoubtedly would have done just 2 months ago. Have faith…there is light at the end of that fiery tunnel!

@jeml Lovely to see you out and enjoying the sunshine in a beautiful part of the world. I have the zoledronic acid bone infusions every six months. It doesn’t take long. I felt rough after the first one but was told that subsequent ones were never as bad and I was right as rain after my second so can only conclude that my onco was right on that score.

As for my new boobs, I’m pleased to report that the swelling is subsiding and they are taking shape which is a relief as the lifted real one was looking a bit like an aardvark. A bruised aardvark. My liposuctioned thighs are also going down a bit but sadly not to the slim and toned ones I’d been hoping for. Still, can’t have it all!

Love to all,

Salbert
xx

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No idea where nork comes from. I’m a Londoner but live in the North West now and adopt many phrases and stuff from wherever I go. I often confuse my colleagues, but I love to integrate pleasant sounding words or comical phrases.

My kin are from Wales, Suffolk, Scotland and County Durham so you can imagine what a hodgepodge of dialects and isolated local phrases and stuff I have adopted over the years. I’m a melting pot of nonsense (I blame my dad, he adopts every accent he hears when he’s away from home, I take after him in that).:laughing:

I plan to retire to Scotland eventually so when I’m a demented old mare I can be comforted by some of my favourite accents.

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Gorgeous!

I took alendronic acid weekly when I was told I had osteopenia at 38. Couldn’t tolerate the GI side effects so switched to a 4 weekly tablet which was much easier to stomach!

Had treatment for total of 5 years. Bone density scans for last 15 years have fallen in the normal range Did its job. Woo hoo!

Due to start Zolendronic acid infusions 3 months after my Invisalign is completed. 19 trays has turned into 45… my goal is to have teeth like yours @jeml ! :smiley:

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Hello ladies, I am on day 4th after chemo 4(doc/carb/phesgo) and suffering soo much from all the feeling of getting hit by bus.
Can anyone help me plz as my headache is not stopping and I have throbbing face,every time I close my eyes is like someone pulling my skin Around my nose, all my muscles hurt,all my bones already can’t move much and I can feel my heart going up too.
They say to take paracetamol and it’s not working much and I will need to 24/7 and I don’t know if it’s will cover a fever or infection.
I am really struggling want to call my oncologist and stop the chemo but I am afraid I will regret it as she already reduce it twice.
I am being crying non stop yesterday.
I hate it.

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@sez @naughty_boob Yes we are all individuals and have different needs which should be enquired about regularly to see what would help. You’d only have to read this thread to see how different we all are, but we pull together! Speaking of which @hasnae87 really sorry you are having such a hard time, I don’t have the same chemo but hopefully someone will have ideas on the headache. I take it you are checking your temperature, I know you’re worried about further reductions in your chemo but it does sound like you need to discuss how you are with someone expert to see what options there are, if you feel a bit better you can look after yourself better. Will be thinking of you.

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Hi @jeml. So pleased you have had a break and about to go off again. It looks wonderful.

As far as bone infusions, I was told that it was recommended as part of my treatment plan. I was 54 and already menopausal so at higher risk of osteoporosis. I used to walk a lot and weigh train so I think my bones were quite string but the chemotherapy affects them. My team said I didn’t need a bone scan as I was having the treatment to prevent osteoporosis but it would have been nice to have a baseline. There is some new research that says that the infusions can help event spread to the bones, which can happen with HER2+ diagnosis.

I get flu like symptoms for 4 days and just take it easy. I still walk the dog but rest more. Last time I had my Covid vaccine 2 days after the infusion so I was a bit rough. I thought it would be a good idea to feel ill at once rather than on two separate occasions.

I also have Calichew which is Calcium and Vitamin D while I’m on the infusions.

This is the BCN booklet for Zoledronic Acid

MacMillan says it can help stop the spread to bones

Zoledronic acid | Macmillan Cancer Support.

:smiling_face_with_three_hearts:

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@hasnae87 Have you been given a hotline number to call by your team? It sounds like you need to speak to them. I don’t think you should be struggling this much. Sending love and strength.

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New hope for patients with Advanced HER2-Positive Breast Cancer!
From the DESTINY-Breast09 trial at Dana Farber Cancer Institute

Not sure if this combination is approved in UK already or not or if there are possibly clinical trials still open.

T-DXd Plus Pertuzumab Outperforms Standard of Care for First-Line Treatment of Advanced HER2-Positive Breast Cancer | Dana-Farber Cancer Institute.

The two drug combination mentioned in this article are trastuzumab deruxtecan (T-DXd) plus pertuzumab which are known as Enhertu and Perjeta. So far they are seeing great results combining these two drugs!

I am thankfully in remission and hopefully we will ALL stay in remission for a long long time, however, it is good to be aware as its always on our minds!

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Paracetamol didn’t work for me either. I used cocodamol (over the counter) and my oncologist prescribed codeine. I’m sure if you don’t like taking codeine they would find something more suitable. If you can’t get hold of your oncologist, I recommend trying your BC nurse instead. I hope you have one as good as mine, if I can’t get through to her on the phone I email her and she passes it onto my oncologist.

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@salbert @sez , I called the GP to prescribe me something they say call your BCN nurse first so I called macmillan to call back but I missed it and they say she will will call you later so she didn’t,then I called the cancer line they say go to A&E and lets them check you.
So I am being in A&E for 3 hours still there.

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I’m so sorry it’s proving so difficult for you to get some pain relief. Because you’re on chemo they shouldn’t keep you around all the sick people and should be finding an isolated cubicle for you (I HOPE that’s what they’re doing/have done). If they don’t know you’re on chemo please tell them so they can protect you.
The next time you speak to your BC nurse I would ask if she has an email you can use in case the phones are frequently busy. Mine checks hers every shift throughout the day she tells me and apparently they’re forwarded to someone else on her days off so emails aren’t missed. I don’t know if this is what every BC nurse is like or if I’ve just been lucky.
I hope you’re not in A&E too much longer.

If your oncologist finds your current treatment plan is too much and making you so ill please don’t worry about them stopping it. It doesn’t mean they’ll stop treatment completely.
There are alternatives and they will be trying to find you one that lets you keep your sanity and also stops you feeling so ill.
I got switched to a different treatment halfway through and it was STILL effective and I was MUCH better on it.

Think of it like when you speak to a doctor, because nothing is 100% certain they make several plans in their head of how they’re going to treat you but only follow the one that seems on paper/in theory to be the most effective.
IF that theory is proven wrong they’ll switch to another, and they do this til they have the best plan. They have backup ideas and fail-safe ideas just in case. They won’t want you to stop treatment.
I work with doctors every day and they tell us this is what it’s like. It’s why they recommend you try to stay with the same clinician if possible, so another clinician won’t come along with their theories and disrupt what they were doing/started.

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Hi all, well I’m in piece’s tonight! I’ve had such a positive week and then bang! Got into bed last night literally felt like my heart was beating out my chest! Tried to check pulse and it was higher than normal, managed to get some sleep but as soon as i got up today it was exactly the same! BP was up pulse rate very high, rang chemo emergency, they said contact GP. Appointment, confirmed AF now on beta blocker and blood thinner. Anyone else had this? My heart echo was good before chemo, now it just all feels too much…sorry for long post xx

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Thank you sez for the advice, I will ask my BCN for her email , I rarely contact her as just ringing cancer line.
Still In A&E spending the night there waiting to do a head MRI tomorrow morning after seeing something not clear in CT scan.
I Am on my own cubicle and being giving steroids so no sleep tonight.

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That’s sounds awful. You think it’s only the cancer diagnosis and treatment you need to contend with and then you get a low ball that just changes everything. Hopefully the tablets get on top of it and there are no more issues

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