Yes definitely keep thinking of the positives 
your are getting through it 
yes no sickness so thats a bonus, yeah i will say to them before my next one if i can get anything for the tummy cramps, next 1 is on the 10th jan so nearly half way there, i have some wobbles but it only nautral for us. xx
Just chipping away at my rounds of Kadcyla over here, number 5 done now so we’re in the single digits for treatments remaining! Woohoo.
Is anyone on here on Nerlynx/Neratinib post-herceptin? I’ve seen a couple of people in the Kadcyla group on FB mention that they were put on it after they were done with herceptin to further reduce their risk of recurrence but none of them were based in the UK, so I’m not sure if it’s something that is recommended by doctors here. The SEs are pretty shitty (pun intended), so it’s something I’d like to investigate more before my next appointment with my oncologist.
Hello, my friends
I have just had to go to my doctors surgery for a blood test to check my kidney function while I am on this Candesartan heart drug. The lovely nurse remembered me from the day after I had received my breast cancer diagnosis back in November 2023. She had made the mistake of saying ‘How are you?’ and I had fallen to pieces right there on her shoulder. The day before, I’d been given the news, gone back to work, gone to teach a private session with a student, whizzed to Morrisons and done my pre-op appointment while in the supermarket queue and at the checkout, taught a Musical Theatre class, gone home and cooked the dinner, told my husband, gone to bed, got up again and went straight for my appointment so I’d not really had time to digest it all. She was unwittingly the first person who had asked how I was. Unsurprising then that she remembered me. This time around I had to confess to feeling rather jaded as I went to a party yesterday that started at 2pm. Very civilised, thought I. The plan was to leave at 7pm and be in bed at a respectable time. Not so, as it turns out. The problem with daytime partying is that you simply have more time and so it was that I tried to leave at 7pm and they put on Olivia Newton-John (knowing my weakness for the goddess) and then again at 8pm when they put on Shirley Bassey (also knowing about my weakness for the Grand Dame) and so it was that I staggered out at 20 to 10. In that time I had done a very poor imitation of Liza Minelli in Cabaret, tried to do a double leg kick on a pouffe and rolled right off the back of it. I was ignominiously hauled to my feet by my husband. To my delight, she once again gave me a massive hug and congratulated me on having partied so hard, telling me that she was so pleased for me. Now THAT is the response you want to get from a medical professional on confessing to a hangover, is it not? However, I am back in work today remembering just why I’m so glad that I rarely drink these days.
@purple_rain It’s great to hear that this thread has helped you. I’d like to think people will find their way here when they get told they are HER2+ as so much of what you read about it on the internet is so damn scary. Are you a Prince fan by any chance? 
I love him too. It’s lucky nobody put him on at 20 to 10 last night or I may not have made it into work at all.
@caz591 How unlucky for three sisters to have all got breast cancer. But what good news that it has been found in all of you and treated successfully. I do hope you sail through Phesgo. 
@farra You don’t have long left with chemo. You’ll be there before you know it.
@jeml We are all allowed a wobble from time to time. Much better than holding it in. Let it all out, I say. I’ve said it before and I will say it again. I truly believe that we have all suffered trauma and that it takes time to process that and move forward. I’ve been told that mine is all gone and sometimes I think about what it would feel like to be told that it has returned but then I remind myself to remain in the now and not dwell because it doesn’t help. It takes time to retrain your brain to think that way but my therapist told me that it takes about 90 days to form new neurological pathways and that with time your stress response will change and I truly believe it does. Spiralling downwards when we have negative thoughts is absolutely normal but reversing that spiral is actually possible. Also remind yourself that we have Herceptin and our stats are excellent. Sorry to hear that you have another bug in your house. That will also have contributed to feeling down. I hope you bounce back quickly, our Jemma.
@pennyp Delighted to hear that this thread has been a lifeline to you too. The monthly starters threads do fall away once chemo ends but us HER2+ girls have to keep going. Thanks for sharing all your good news and being so encouraging to others. Well done on six whole days of Christmas with a 3 year old, Octonauts, Play-doh and all. You have so earned the peace and quiet of a jigsaw. 
I know what you mean about being grateful for this Christmas after last.
@arty1 What a horrible year 2024 has been for you. I’m so glad you have become such a large contributor to this thread and what a great analogy, likening us to a cosy little club. We are an uplifting bunch, that is very true.
@shannon27 You’re over halfway!! Come on!! You are getting there.
Many of us feel like we provide a lifeline for each other and yesterday at this party I was speaking to my GP friend who made a very valid point in that company, empathy, positivity all boost the immune system which helps us to fight back. So this is another wonderful thing we provide for each other.
And now I can finish work and escape so I’m going to do that right now. I cannot endure another second!!
Love to you all and stay off the booze! Take it from one who has been reminded!
Salbert
xx
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Yes January is going to busy fir me with chemo and other appointments before i know it i will be at the otherside positivity definitely hrlps give you a boost and especially from others that are in the same boat
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Yes the one Lesley Joseph did the grumpy old nun! I love her … I’ve done it before 10 years ago and it was so much fun. I’m based in Derby x
Trying to build my stamina back up for it now over the next few weeks x
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@kartoffel im also on Kadcyla but had done some reading up on Neratinib as I was checking I wasn’t in for another nasty surprise once I thought I was done. Like you, I’d noticed that it looks like the people getting it elsewhere are Americans or from elsewhere outside Europe that we’re talking about it, so wanted to know about the UK. I looked up the leaflet through Breast Cancer Now, which was quite useful, but also the NICE guidelines that are used here. This is what NICE says:
1.1 Neratinib is recommended as an option for the extended adjuvant treatment of hormone receptor-positive, human epidermal growth factor receptor 2 (HER2)‑positive early stage breast cancer in adults who completed adjuvant trastuzumab-based therapy less than 1 year ago only if:
- trastuzumab is the only HER2‑directed adjuvant treatment they have had, and
- if they had neoadjuvant chemotherapy-based regimens, they still had residual invasive disease in the breast or axilla following the neoadjuvant treatment, and
- the company provides neratinib according to the commercial arrangement.
It also said:
neratinib is recommended if trastuzumab is the only HER2‑directed adjuvant treatment a person has had, and if they had chemotherapy-based treatment before surgery to reduce tumour size (neoadjuvant treatment) they still have signs of cancer (residual invasive disease) in tissue samples from the breast or armpit (axilla).
The clinical trial did not include people who had adjuvant pertuzumab. Also, it did not include people who had a pathological complete response (no sign of residual invasive disease in the breast or axilla) after chemotherapy-based neoadjuvant treatment, therefore these groups are not included in the recommendations.
Hope this clarifies it for you. From what I can gather from knowing others on Kadcyla, Kadcyla seems to be the go to here whether you were on Herceptin or Phesgo beforehand.
Thank you @salbert, @rrey, @galdiolus, @naughty_boob and @arty1 for acknowledging my lengthy missives. Much appreciated.
@salbert, somehow I pressed a button that revealed how many hours I’d spent reading the thread. Forgotten how I did it as brain is addled but it was around 4 hours 
. Better than spending that time down that rabbit hole scrolling through fear inducing information! I’m pleased that you managed to party till late. I need a lay down after reading how much you manage to fit into your days!
@naughty_boob. Your story sounds very much like mine. It’s good to read how you manage to get through it. Hoping I’m not joining the 5% club, I thought that being in the 10% was special enough! Such a big decision for you giving up teaching but it’s an all or nothing job that is relentless. I imagine that trying to work when going through treatment does not fit in to timetabling and the demands that the job imposes. I’m married to a retired teacher so have an understanding of the impact of the role…
@galdiolus thank you for your positivity about the NHS and the treatment available to us. I am hopeful and have confidence in those managing my care. At present I am focussing on the here and now and accepting that they will do their best to get me through what’s ahead.
@rrey my friend uses the analogy of a race. Said at times I’ve reached the finish line when the race hasn’t at the started! Problem sometimes lies when those around you are half way round the track and you’ve not prepared for that particular jump!
As for work it’s tricky. I’m a nurse. I’m uncertain if I’ll be able to do the face to face side of the role. I’ll feel vulnerable both to infection and to the fact that I’ll likely look different.ill feel comfortable in the office with those that I’ll owe no explanation to and much can be done on the phone and by email. I will need to have the emotional capacity to care for others when at present I’m running on empty. Been depleted for the last 18 months which spurred my decision to reduce my hours to partially retire. I had this fear that I’d reach retirement age and like my parents I’d be gifted ill health. It feels like a self fulfilling prophecy 
. My mum was my age (55) when she was diagnosed with Parkinson’s. Dad worked for 50 years. When he stopped at 65 he looked after Mum and the plans they had remained just that.
I am ending 2024 with hospital appointments. This morning I have my initial oncology appointment for the CT scan results for which I’m feeling anxious about as to date it’s been worse news week on week. Hopefully they will discuss the treatment and book me in 
. Late afternoon I’ve bagged NYE in London. Got myself a cancellation at Northwick for the MRI guided biopsy. Woo hoo!Going to join the M25. Don’t fancy the trains with the partying throngs. I’m just not feeling it!
I feel sick just thinking about the year ahead. Know it’s normal but it’s just not a path I’d expected to follow. I’d like to turn back and follow a familiar route to happier times.
One step at a time and one day at a time. That’s the way. Xxx
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Hope your appointments go well today.
Good luck on the M25.
Good luck with your appointments today. I’m sure you will feel better once you have a treatment plan. This time last year i was about to start tests and was really anxious and felt quite sick, but here i am a year latwr having got through it all with just a few bumps in the road. It wasn’t easy but it was certainly not as bad as i feared. We are all here to support each other on this site which helps a great deal. Yes one step at a time. Xx
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I hope your appointments went ok today @mrsjelly - I know it might not feel that way but once you start your treatment , there does come an element of more calm , you know exactly what is happening treatment wise and you just roll with it … as they say … the only way is up xx
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Good luck with your appointment today @mrsjelly , and completely get the angst for the next few months ahead. We are all here with you on this journey xx
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Hey @salbert yes I think Prince was great, true legend and love his music. Can’t wait to feel in the mood to party again
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Happy New Year ladies - let’s hope 2025 is an improvement on 2024 …
@salbert I’m glad to hear you are out partying ! As I’m currently unable to see my family … I feel I’m going to live vicariously through you !
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Happy New Year!
I’m having my Hickman line out on Friday then I have to look forward to another CT on the 3pth January. I’m still having Phesgo, Exemestane and blood thinning injections. My bloods are OK for surgery which will be after the CT. My neuts are only 1.21 though as the antibiotics affected them.
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Happy New Year to you all - wishing everyone a 2025 with improved health and lots of happiness xx
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Evening all!
@pennyp @arty1 and @purple_rain thank you for your wise words.
Yesterday was a long day but a good day.
The morning appointment was a positive experience. Very pleased to share that my CT scan showed no evidence of ‘it’ being anywhere else. Such a relief. Discussed and consented to treatment. I’m going to have a PICC line and I’ve decided not to bother with the cold cap. My hands and feet are usually like blocks of ice so a -5 degree head has no appeal at all especially if it does not guarantee that I’ll keep my scraggly greying hair!
The afternoon took us to Northwick Park. Journey there and back was trouble free. Around 90 minutes each way. I liked the Brutalist architecture though the hospital and grounds looked tired and rundown - much like me! The MRI guided biopsy was a surreal experience. I imagined I was in a sci-fi film set. Boob was sore when the local anaesthetic wore off. Feels twice the size today and very tender and bruised. I’m not worried about the biopsy results. If it’s a case of ‘it’ in two tits then so be it.
The latter part of 2024 was rubbish so I am glad the year is over. Whilst 2025 will be full of other challenges, I feel more positive, more in control and more hopeful. I’m plan to focus my energy on get through it and keeping out of the rabbit holes. Xx
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@mrsjelly what a relief for you, I am so glad your appointment was good news and now you can start planning g for your treatment.
I also chose not to cold cap and for me that allowed me to prepare for the hair loss.
I arranged my wig before my first chemo and also got my eyebrows permanently tattooed (I think that’s what it’s called)
All the best with it and er are here right beside you xx
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@galdiolus I got the feeling that the cold cap was in demand so might affect timing of appointments. I’m planning to book an appointment to look at wigs this week whilst I’m on annual leave… Been thinking about eyebrow options. Can you get them done before they fall out and if you can’t, is it a no no during treatment?
@mrsjelly I’m so pleased for you that the scans showed no further spread … that’s a huge weight off your mind I’m sure x
I personally didn’t bother with cold capping , I’ve had two lots of abraxane and I’m
Completely bald but bizarrely my eyebrows are clinging on !
Apparently you can get eyebrow stencils and that can work if you are good with a pencil but I know a few people had them micro bladed before treatment
I started getting wigs before chemo started … it’s the only thing that’s been remotely “fun” about this absolute disaster movie … having fun with different hair …
here’s a pic of me minus hair and one of my wigs (excuse the posie wig pic it was for my business insta )
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I cold capped twice then stopped as it made my body temp drop so low it made me feel worse than the chemo. I know that many on here have used it with great success though. For me it was just about taking control of a decision. I think it’s just doind whatever feels right for you- whether that’s cold cap, wigs, embracing the bald, turbans, scarves - there’s lots of options.
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