HER2+ and need some buddies

Welcome and how to use the forum Introduce yourself
1765

That’s interesting to know @Filmac1
I too went to the dentist today to see if I needed a filling before my chemo which starts on Friday. Had an x-Ray and he was happy to leave tooth as it is. He didn’t suggest and special toothpaste or mouthwashes. I feel I’m missing out!

I’m 22 weeks into Invisalign. Was told I’d need 19 trays for straight teeth and returned for a review and another 13 have been added. The joke when I embarked on the quest to sort out my snaggleteeth is that I’d have straight teeth in my coffin unlike my parents who both have ill fitting dentures. I want a woodland burial when my time comes when I’m three score years and an extra twenty-five. I don’t want my pesky whites cremulated!

@salbert. Partial retirement. Not quite what I planned and had I not taken it I’d be getting full sick pay for 6 months. Now I’ll get 60% of what I would have done. Despite this I know I am very fortunate as I’m in the 1995 pension scheme as I started my training as a teenager. It allows nurses to take their pension when we reach 55. It’s not enormous as I worked part-time when the kids were at school, but it’s better than a kick in the teeth- especially as I’m spending a pretty penny on me teef!

Consenting to those genetic bloods on Thursday morning before my PICC line.
Trying to wind up at work. I’ve had to say out loud a few times on the phone that I’ve got breast cancer in both of them. It’s made me a bit tearful. Then I remember that as Mrs Jelly I am allowed to have a wobble. It is a lot. It’s not nice. I’m not looking forward to much of it and whilst I’m trying to be thankful, hopeful, find humour in it all and seek out pleasure in the raft of investigations and appointments, the new relationships I’m forging, it is actually a big pile of steaming poo :poop: and I’d rather it was inside someone’s home, not mine.

Hey ho, going to have some soup and reduced brown rolls from M&S. Husband has gone out with a group of ladies he worked with. Bet he has a starter and a pudding. :yum:

Being maudlin or as my Mancunian Nana would have said, ‘mardy pants’ so signing off and will carry my soup in the manner of Julie Walter’s two soup sketch to cheer myself up! :joy:

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1766

I love the Julie Waters sketch of Two Soups :rofl:

Be thinking of you Friday you can do this :smiling_face_with_three_hearts:

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1767

@rrey What wonderful news! This gives me great hope when I am just starting my own journey. Thanks for sharing

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1768

@rrey WOO-HOOOOOOO!!! :clinking_glasses::champagne::partying_face::raised_hands: WONDERFUL NEWS! I think it’s really important that we share the good news as well as the bad/stressful bits on here as it gives the full picture. It gives us all hope and hope is everything on this journey. This is really fantastic and also, if someone else ever hears that there is a complication, they may read this and know that it doesn’t necessarily mean bad news. Everything is wonderful about your recent posts on here. Do not feel ridiculous! :smile: Go ahead and cry those happy tears.

I actually left a HER2+ Facebook group as it was too negative and scared me which then depressed me and, as we know, it’s not all bad news. I feel this thread is a lot more balanced. Thank you so much for sharing your latest news.

@browneyes I’m so happy to hear that this thread has helped. I have heard others refer to it as a lifeline and so let’s keep it going so that it’s here waiting for new women to alleviate the mental torment that comes with this diagnosis. I, too, love hearing everyone’s stories.

@mrsjelly We will be thinking of you tomorrow and cheering you on. Just think how beautiful your smile will be when you post that final chemo pic on here! My husband wants a woodland burial too. He wants to be planted upright with a tree on his head. Although he is also toying with donating his body to medical science so that they can research quite how someone can party so hard and drink quite so much beer and reach the age of 60 without requiring a single drug!! He is in rude health. Which is mildly infuriating seeing as I am the vegan that barely touches alcohol these days. :confounded:

Ha! I hear you re the reduced brown rolls. I am actually obsessed with supermarket bargains. I wrote a poem about it called Mrs BOGOF. I’ll post it now. And don’t carry your soup like the ‘two soups’ Julie Walters lady or you’ll have none left for your lunch! :rofl:

For your delectation…

Mrs B.O.G.O.F.

I am told I have a problem,
That’s been pointed out to me,
In the form of my addiction
To Buy One Get One Free

Cheeses near their Sell By date
Entice me down the aisle
To where the bargain fridge brings out
My beatific smile

But then I notice left and right
The sharks all circling round
the employee with the sticker gun;
I firmly stand my ground

He calmly lifts the ready meals
Pretending we’re not there
And as that yellow sticker hits
It’s clear we cannot share

Our hands dart out, we snatch and grab
I’m fast, I won’t be beat
I seize the bacon lardons
Who cares I don’t eat meat!

Reduced to clear, and clear it does
For I am on a mission
To seize the fermenting pineapple
And trounce the opposition

I’ll thaw the plant-based sausages
That fill my freezer box
And make a mammoth casserole
With which I’ll feed the fox

And then I’ll stuff it full again
With all this Thai Green Curry
Ignore the family’s moans
It’s lumps of matter bathed in slurry

They’re lucky to be living with
The Bargain Queen of Surrey
And thanks to me, financially
We’ll never have to worry

For yes it’s true, my pennypinching ways
Can bug my spouse
To which I say, it’s thanks to me
We can afford a house

For take care of the pennies
And the pounds will mind themselves
(I preach as I pluck 5 bottles of
Wine down from the shelves)

But sometimes I surprise him
With a well-known brand of sauce
‘Was it on offer darling?’
I reply ‘Well yes, of course!’

With certain pizza offers
You have to be concise
For do you go for 2-for-1
Or do you go half price?

I can’t resist a bargain
No matter what it be
I’m not that keen on quiche
Until it’s Buy One Get One Free

And when I bump into a friend
Who says “I like your top”
Triumphantly, I crow aloud
“It’s from a charity shop…

…My shoes I got on eBay
My blouse was Marie Curie
My outfit cost a fiver!”
Teenage son looks on in fury

I’m proud of all my bargains
And I may be a tightwad
But I love Comparethemarket
Martin Lewis is a god!

I go round turning lights off
And I search for voucher codes
Regifting’s really brilliant
Loyalty cards? Got loads!

So you there with your brand names
You may look at me and scoff
To me you are a sucker
And to you I say B.O.G.O.F!!

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1769

Ladies who have had radiotherapy
I have my appointment on 5th feb
However i have an appointment on 21st to have a radiotherapy scan and then to see my consultant. I did not know i would need a scan again… i googled and it says a CT scan. Anyone else had this?

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1770

@jeml This is probably a CT scan to plan your radiotherapy. At mine, they tattoo 3 tiny dots, I did ask if they did request which met with some laughs! They are the size of a freckle and will fade over time. They also placed a small black box on my chest and marked me up with marker pen. They then reviewed what they had done to check they were targeting the area correctly. It was about 30/35 minutes but I had both sides done.

This might be helpful.
https://breastcancernow.org/about-breast-cancer/treatment/radiotherapy-for-primary-breast-cancer/

You can do this :smiling_face_with_three_hearts:

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1771

Hi
Yeah I had a CT scan at my radiotherapy planning appointment . It is all to do with them getting the measurements, position on the bed etc. I have 3 very small tattoos also but they don’t bother me. I finished my radiotherapy yesterday, 9 sessions, no discomfort or tiredness yet, but moisturising like mad.

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1772

Thank you for the info :slightly_smiling_face:
@bigpickle what cream did you use? Thats another question i forgot to add on.

1773

Hi, I started off using aveeno, but have switched to flamigel. You can get it off Amazon and I believe it is what they give you at hospital if you have bad skin reactions.

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1774

Okay thank you :slightly_smiling_face::heart_hands:

1775

My team said to use a moisturiser that you were already used to as you can be very sensitive and they want to prevent redness or rashes. I used Radiaderm R1 and R2 that I patch tested before radiotherapy. This was received after an Instagram win from Dr Liz O’Riordan. I had no issues with redness or warmth. R1 was a cooling gel and R2 was soothing cream.

Many others have had Flamigel, which can be prescribed. My team were very reluctant to give me anything and say any good moisturiser would do, preferably fragrance free. For me I found some smells off putting after chemo so fragrance free was great.

I’ve seen good reports of Aveeno daily moisturising fragrance free (green writing) or Epaderm, which is used for eczema.

This is the leaflet from Velindre cancer centre, Cardiff
https://velindre.nhs.wales/velindrecs/patient-information/radiotherapy-information-leaflets/skin-care-during-radiotherapy/

:smiling_face_with_three_hearts:

1776

Morning all. I saw my oncologist yesterday in readiness for my mastectomy and for the second time she spoke about the HER2 Radical trial. Has anyone else joined this trial??
I obviously have to wait for the outcome of my histology post surgery but she has discussed this with me twice so keen to get others views if you have been offered this xx

1777

What is the trial?

1778

@Linda_Corinne its called the radical trial.
It’s about having less Phesgo/ herceptin after surgery. You have to have had a PCR after chemo and the suggestion is six months rather than 12 of the injections to reduce risk of cardio toxicity so that would be 9 rather than 18 in total

1779

@mrsjelly I’m just sitting in the chair waiting for my zoledronic acid infusion and Phesgo injection but wanted to jump on here and wish you all the luck in the world for today’s 1st chemo. You can do it! Chemo’s tough but you are tougher!

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1780

This is a thread from last year about the trial

:smiling_face_with_three_hearts:

1781

…And I’ve got home and realised that your first chemo is tomorrow @mrsjelly I’m over zealous!

@jeml I also had CT scan before radiotherapy and I used Flamigel RT but was also recommended Aveeno.

Does anybody fancy doing the Breast Cancer Now Moonlight Walk on 12th September? I’m definitely going to do it and so are a couple of ladies from our February 2024 Chemo Starters.
https://breastcancernow.org/get-involved/fundraising-events/walking-events/thames-moonlight-10-walk/

Salbert
x

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1782

Hi, just wondering if anyone is/will be doing 18 cycles of phesgo (before surgery)?

I’m hoping the nurse has it wrong and she meant 18 weeks (so 6 x 3 cycles), but until I speak to my consultant and ask, I thought I’d ask on here - just to see if it’s a possibility really!

Thanks all

1783

@leelee1 I had 5 rounds of phesgo before surgery. I’m due have 18 rounds in total. I don’t see how you could have 18 rounds before surgery, as that would take almost a year (with 1 round every 3 weeks) and I’ve never heard of or read about anyone waiting a year for surgery. I’d definitely query it xx

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1784

Does anyone know whether zoletronic acid infusions are standard treatment? I’ve read quite a lot of people mentioning them on here, but it’s not something that my oncologist has ever mentioned to me so just wondering x