HER2+ and need some buddies

[rfg]

@fimac1 I did the first two with cannula and then decided to get a picc. When I had my second chemo I hadn’t eaten and had a bit of a turn when they went to put the cannula in and embarrassingly had a little cry (think mainly emotional overwhelm) plus they struggled first time. I was very anxious about having a picc as I have sensory issues, and ideally didn’t want to feel ‘medicalised’ at home. But it has been so so worth it! For me I can’t over emphasise the benefit of not having the ‘will the cannula go in ok/will it hurt’ anxiety being completely removed before bloods and chemo.

Plus when I had to go into a&e because of a chest infection and it being a Sunday, they wouldn’t use my picc for IV antibiotics/taking bloods. They took four attempts as my veins kept rupturing/collapsing, which was a good reminder to be glad of the picc as I’m assuming a cannula for chemo and bloods would have become progressively a problem as chemo messes up your veins.

I bath every night and put a waterproof sleeve on and just dangle my arm out of the bath. I’ve got used to it.

Also I was reassured that they could remove it super fast if I freaked out! It does mean more appointments though as you have to get it cleaned and re dressed once a week.

[isthisreal]

Hi @pinklady3, my lump was also about 1cm residual at surgery. I was so disappointed. I thought I was mentally prepared for possibility of Kadcyla, but I was still so upset when the oncologist said it. Another 14 rounds of chemo after everything felt totally insurmountable. But happily it isn’t all that bad! And I’ve got through 4 of them now.

Kadcyla is milder than the previous hard-core chemo and the side effects are much less for most people. I get quite a few minor side effects, and I feel a bit grotty and tired particularly the week afterwards, but not so bad that it stops me from doing things.

I am back at work now but only from home and I’ve reduced my hours. I’m still tired and recovering my physical strength, which I think is mainly down to the ECT and surgery and radio, as I can feel I’m improving little by little despite being on the Kadcyla.

The biggest annoyance for me with trying to work is that I’m still at the hospital quite often: blood tests, oncology appointments and infusion day, along with 3-monthly heart checks.

So yes hopefully you will be able to get back to work, but do take it easy on yourself and phase it in gradually x

[shannon27]

Thank you and @naughty_boob i will have a wee look, yes theh send you can go flat and delay the reconstruction. Still not sure if i need radiation or not, had ulrta sound today and there is improvement after 3 cycles of chemotherapy on my markers probably need a mri to get better pictures as dcis makes it hard to see x

[naughty_boob]

That’s good news seeing an improvement after 3 cycles of chemotherapy.

[salbert]

Afternoon all

I’m pleased to report that after feeling rough the last time I had the Phesgo and zoledronic acid combo, I booked to work from home this time and I feel right as rain! I haven’t told work though and consequently I have a wash on, have made a curry and just answered a few emails. Nice! Gotta be some perks, right?

So…hello there @pinklady3. I’m so glad you have joined us as you have more buddies here than you can shake a stick at! If you do a search under Kadcyla on this thread you will come across a good few people who are on it and their side effects are varied. There was a discussion just recently on here actually with somebody asking about side effects so you shouldn’t have to go too far back. I’m glad that @isthisreal has answered you as she is one of our Kadcyla girls. Of course it is disappointing to find you have to go onto it because everyone wants to hear that all the chemo we do has done it’s job, however, my breast cancer nurse told me that we should just view it as a slight change in treatment as a means to reaching the same end. Thanks for sending the love and I send love to you also. We’re all getting there and we’ve all got each other to help us reach the finish line.

@leelee1 I have just tried to count how many Phesgos I’ve had and am due to have and came up with 13 which cannot possibly be right. I believe I started it in spring/summer 2023 and am having 3 weekly injections due to end on 10th April. I had surgery on 7th August after I’d started it so yes, I had Phesgo then surgery then continued Phesgo.

@rrey I believe they give zoledronic acid to post-menopausal women like @naughty_boob says. I also had lymph node involvement which would follow. I was given a blood test to see where I was with menopause and it was confirmed that I was indeed menopausal and that was when my oncologist told me they would go ahead with the zoledronic acid.

@jeml It sounds to me like your hormones are kicking in again, trying to get you back to normal. Whilst spots and bloating aren’t fun symptoms, it’s a good sign. Can’t comment on went to have a bath as I am resolutely a shower person. For some reason laying in a bath makes me feel claustrophobic and I never manage more than about 3 minutes in one.

@fimac1 I remember well hearing the good news that it was just the one breast and lymph nodes and nowhere else. It’s a huge relief and suddenly all that treatment seems bearable and doable. I’m so pleased for you. I managed to get a few days in Brixham last February just before I started chemo and I actually managed to enjoy it because I knew where I was with it all and the pure terror of the finding out and staging part was over. My husband did what yours is doing and made me a little bed up on the sofa in our snug where I used to go straight after EC chemo and spend the weekend. It’s a great idea and I love it so much that I’ve kept it! Good luck and keep us posted. I had a port put in my arm, by the way.

@shannon27 I had an implant which is currently a tissue expanding one. This has been expanded to the same size as my real one and I am getting it replaced by a soft permanent implant in April 2025. Put it this way, it looks better than my real remaining boob!! That’s getting a lift to match my perky new one. (Thank heavens!) I also felt DIEP flap surgery was major surgery that I didn’t like the sound of. I’m very happy with my implant.

@rfg GREAT NEWS, ROSIE!! So happy for you and thanks for sharing the good advice for @fimac1

Apart from teaching my Drama classes tomorrow morning I have a blissfully free weekend. I feel the urge to bake something delicious and cake-like so I should probably exercise instead!

Love to all,

Salbert
xx

[leelee1]

Thanks @salbert looks like a few people have had surgery in between, so will keep my fingers crossed that is the plan, and yes I keep counting to see where dates ‘could’ come out to, and lose track every time haha!

[musestad]

Hi everyone
I am new to this group <3 I was diagnosed with HER2+ bc in sep and had one breast + 4 lymph nodes involved. Have gone through 6 rounds of chemo and will have surgery on Wednesday. It will be mastectomy and ALND. A lot of emotions right now.

[jeml]

Welcome to our group! As much as its not a group you want to be a part of… we are all really friendly and here to chat if you need to
I had a double mastectomy on the 18th december and honestly its not bad at all! I was a little stiff for about a week or so but thats about it really. Also you have got over the worse part i think of it all… well done for completing the chemo! You are nearly there @musestad
@salbert my ovaries will have a shock once i start them infusions lol cant wait to be having hot flushes along with my mum.

[musestad]

Thank you that’s really good to hear. I really really hope I get a good pathology result

[shannon27]

Thanks @salbert ! I am definitely thinking implants i just feel that the diep flap is a massive surgery on top of the double mastectomy ! Thats so good to hear about your experience! Youll be looking forward to hetting that all done ! Not long

[musestad]

Any advice on must have for mastectomy and removal of ln? I have purchased a maternity pillow.

[shannon27]

Yes it is ! Ive got a large area of dcis so hard to tell whats what but today he said that there is improvement where the markers are so thats great news, might need an mri to get better pictures x

[jeml]

I had a pregnancy pillow too a huge one! And it really helped me. I put my arms on each side because you have to sleep on your back for a few week.
I hope so too. Have you had a scan also just before you finished chemo?
After 5th round i had no sign on my mri scan and got a total pathological response when testing after mastectomy.

[musestad]

Thank you wow that’s amazing. I am so happy for you. I got a scan after 3 doses and then they could say that I had responded very well to the treatment. The lymph nodes were normal in size. The could see an area affected but that could be scar tissue. You couldn’t feel the lump by touch ie a complete clinical response. Because of that the didn’t recommend me to do another MR before surgery since that would not change my treatment plan anyway.

[jeml]

Well it sounds like you are going to get good results
After 3 rounds i had a scan and my nodes was normal again and lump half size then on the 5th one it was gone completely.

[musestad]

that so amazing to hear … thank you for sharing these positive news with me

[jeml]

Are you having a double or just a single? Im only 33 so opted for double wammy. And feel content flat for now anyway at least.

[galdiolus]

@musestad i am the same as you, they could only tell me mine was responding to chemo but they can’t tell until surgery / histology because of the DCIS. I am hoping h to have my mastectomy and reconstruction first or second week of Feb. Seeing surgeon on Monday when I will get a date x

[musestad]

A single. I will have an implant directly since the plastic surgeon recommended that.

[naughty_boob]

Welcome @musestad we are a friendly bunch.

Open fronted pyjamas and tops are helpful after surgery as your arms and movement can be a bit restricted to get arms above head. A good supportive bra, I used a soft tshirt style which I just managed to wiggle over head (bilateral lumpectomy) but many have open front sports bras. I invested in one for exercise from M&S and find it very supportive and easy to put on. Although you will be given post surgery exercises to do as much as you can slowly building up over time.

You’ve done so well to get through your chemo and we will continue to support you with your ongoing HER2 treatment (Herceptin/phesgo?)

Take care