Hello everyone im in for chemo number 4 today 2 more after this, im doxetaxol @sooz1 ive just been staying well hydrated and trying to reast the first couple of days after treatment i seem to be good for a good couple of weeks before my next one if i do this, staying away from juice with sweetner in it as it seem to upset my stomach alot the second time and i was needing to use the tablets alot. Ive been lucky with my mouth ive had a couple of small ulcers but they last like a day then go i have the special mouthwash but only used it once, hope it goes okay for you 
x
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Well done for finishing chemo, glad you could slap a bench. The new people on this thread are probably wondering what the hell we are talking about!! The time seems to have flown by, i hope it did for you. Your photo is fabulous. It took me a while and a bit of hair growth before i went out without the comfort of my wig.
Penny
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I love hearing about people that slapped a bench at the end of their chemo… who knew you were such a trend setter @salbert 
Congrats on finishing chemo @arty1 
For anyone that’s also triple positive and remembers I asked up thread about Nerlynx/Neratinib up thread after finishing Kadcyla, I asked my oncologist about it when I saw him today and I wish I had videoed his face. He looked absolutely horrified by the thought of putting me on it because the research about survival rates is so old that it’s barely relevant. It only looks at improvement in survival rates after ONLY having herceptin for a year and the improvement is only 1-3%. There’s been zero research done on taking it post anything with trastuzumab (Phesgo, Kadcyla, etc). He also told me that it’s been sold a few times to different drug companies because no one wants it. He told me that if I really wanted it, he’d be happy to refer me to a doctor that will prescribe it but he doesn’t recommend it. I’m taking his recommendation.
He’s decided to start me on Zoladex soon since now my other treatments have settled down, so I’m going to go search the forum to find out what other people’s experiences have been with that but if anyone has any tips, I’d love to hear them.
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I cant find out how to introduce myself …sorry Not good with tech
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@pennyp the nurses probably wondered what I was on about when I said I was off to slap a bench 
I generally don’t go out without a wig but tbh I find my head itches when I’m in the chemo chair and it’s quite warm in there .
@kartoffel Im interested in what you were told about kadcyla … poor @marionse25 really suffered on it… yes @salbert totally opened the way for bench slapping !!
@shannon27 good luck x I’m finding that giving in to rest after chemo definitely helps . Tbh despite my steroids I feel groggy and tired today one day post chemo
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Hi @naughty_boob . Would love to join this thread for Her2+. My partner has just finished with neoadjuvant chemo till December and now recently undergone lumpectomy. We are now entering the radiotherapy phase for 2 weeks followed by a Kladcyla chemotherapy for 14 cycles.
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Hi @sms I think you may be the first partner on this thread, thank you for being there for them and trying to find support. You are more than welcome to join this thread. There are a few ladies on here that are on Kadcyla so maybe able to give advise and share their experiences of the treatment.
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Hi Everyone! I have been thinking of you but have had too much on plate between work and all sorts of problems. Too many posts since my last visit but itbis great to see you are all doing very well @belle1 @salbert @arty1 @kartoffel and the rest of the HER2 pack.
I had another phesgo today, 9 more to go. I am really exhausted and have had 
issues that I never had in the past. Insomnia is surreal too but at least my tastebuds are back. Happy I have stopped Kadcyla but so scared in the same time. My omco has suggested naratinib (nerlynx) for a year once I am done with Phesgo to reduce the chances of recurrence. Side effects seem pretty horrific not sure about that. I am yet to start Letrozole and zolendronic acid, quite worried about possible eye issues. Mine are still being investigated but unfortunately Kadcyla has damaged my optic nerves. Possibly my heart too as I have had episodes of tachycardia, and also pulmonary hypertension with a leaking valve!!! All ignored by my cardiologist who told my onco it was fine to continue phesgo, that we will deal with my heart issues once I have completed phesgo!
Not feeling very well looked after I must say. Also reaching a stage where I have enough. Juggling with appointments, chasing for dates, changes, results etc is exhausting.
I also need to sort out my disastrous surgery. I will see my surgeon on the 11th Feb but can’t trust him anymore. 2 trainees performed a very poor job as some of you may remember, and I feel so ugly. So when I read comments about Royal Marsden it really annoys me! I really won’t recommend the Chelsea branch.
Anyway, i have got a lot to think about including loosing my job soon as my US company is progressively dismantling (if that is a word?) all offices in Europe.
That means another few months of nasty work for me until I am sacked, once I have done all the hard work.
The good news this week is the start of the Six Nations, I am such a rugby girl!
Have a lovely weekend All!
Take care,
Marion
Hi @frame. Welcome to the thread. This is such a friendly bunch of people.
This might help navigating the forum
https://forum.breastcancernow.org/t/getting-started-on-our-forum/97221/2
What is your story and treatment plan, if you fon5 mind sharing?
Hi @marionse25
To a fellow rugby girl, I’m typing this while trying to watch the Fra v Wal game. I may live in Wales but I’m originally from the Midlands so I’m English rugby fan.
Sorry to hear at the problems you’ve had, I understand your issues with your heart, I already had SVT (tachycardia) and my treatment reduced my ejection fraction but was assured it is reversible. So I’m assuming that’s why the cardiologist was happy for you to continue and deal with heart issues later.
After reading @kartoffel comments about her oncologist view on Nerlynx that yours is thinking of putting you in it. Something that maybe you need to talk through BCN nurses or ask for a second opinion. You don’t want to take something if it can cause other issues or has very few benefits. Always worth asking questions, although you may be happy to take it .
I see you are seeing your surgeon soon, please let him know how bad you feel about your results and that in future you don’t want a trainee going anywhere near you. I would even ask how you can complain, even if a trainee was doing s9me of the surgery it should be supervised and if the more senior surgeon thinks there is a problem they should take over. Having Brest cancer is bad enough without being left with something that makes you feel bad every day. You shouldn’t have to feel that way.
I had a bilateral lumpectomy in July 2023 and it’s only recently I can look at them in the mirror and they didn’t do a bad job, I have long scars on the sides and big dents on both boobs. I also feel they have let me down and still finding it hard to forgive them!
I’m sorry you are feeling a bit down, we are here for you. Have you had counselling or psychology support? You can also call the BCN nurses 0808 800 6000 m-f 9-4 Sat 9-1, times aren’t easy when you’re working.
Thinking of you
Rugby score now 21 Fra 0 Wal. Not looking good for Wales.
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43-0!!! What a start.
Thank you for your lovely message and all the asvice. I have access to counselling, i have headspace, doing yoga so all good to deal with stress and low mood. Today was my phesgo day and as usual I waited for a while. I am also quite annoyed to spend 3 hours for a return trip in public transport when the injection only takes 5 minutes. My visit should be short but today it took again almost 3 hours. I took my laptop to do some work.
I am in London but there is nothing nearby really. Can’t wait to finish Phesgo in August.
Otherwise I am not planning to take neratinib. I have read quite a few academic articles and it doesn’t look like it should have been approved in the first place. It is not very effective and there is almost 100% chance to have severe issues for 1 year. It would be impossible to work or do anything really.
For now I am focusing on phesgo and hope I can complete the full course. My onco is planning for me to start Letrozole in 6 weeks. Hopefully I will be ok but won’t know until then.
Have a relaxing weekend x
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Thank you @naughty_boob! I hope being here I can feel supported and also provide support to anyone going through a similar situation.
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Hi @marionse
It was good to hear from you and hope you can enjoy the rugby. I am sorry life is still difficult for you with work, all that travelling and waiting with all your side effects. Chemo is definitely a gift that keeps on giving and not necessarily in a good way. Ive still got some bowel issues asfter all tge trouble i had with Paclitaxol. I think i can eat most things now but spicy and tomato-ey things have a bad efect on me and sometimes there seems to be no logical reason why i have to rush to the loo. I suspect it wont fully resolve until off the Phesgo. Will you get a good redundancy package, perhaps its the universes way of forcing you to change tack and take things a bit easier? At the least you should have a good break and perhaps organise something to look forward to later in the summer. I agree with you about that other drug, bearing in mind up to date research and the attitude of the other oncologist mentioned in this thread. It sounds like you are doing the right things with counselling snd yoga.
Best wishes. Penny
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Hi @pennyp
Sorry you’re having bowel issues. I never had any until I went back to phesgo a month ago for some reason. My onco says it is because I had another loading dose… but I had a normal dose yesterday and today same story. Poor us! Hopefully it will stop when we finish phesgo.
Re redundancy unfortunately i will get nothing as I havve a bit less than 2 years service. My employer only pays statutory anyway which is not much. I am so exhausted and look terrible with my short curly chemo hair. I can’t see myself doing interviews.
I will do what I can but London is so expensive…everywhere is really but having to worry about money and paying my mortgage is not needed at the moment.
Otherwise I have just been to yin yoga and I am on my way home. Feeling a bit sleepy but I know that won’t last.
Have a relaxing evening
Hugs
Marion
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Yes I’ve seen Nerlynx mentioned on some of the US forums quite a bit but the improvement in survival seems not worth it at all for the horrendous side effects!
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It not me,its my partner Angela. I was directed to this site to help me to help her.
Such a big thing for someone to go through x
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@frame another participant on this thread @sms is also a partner. You are more than welcome to participate to get support and help for yourself and Angela.
Everyone on this site knows what it is like to have a bc diagnosis and it affects us all in different ways whether we are the patient, partner, family member or friend.
All services are available to you. This is a few links. Angela may benefit from the Someone like Me service where she will be matched to someone that can support her over the phone.
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Website: You can register for our services. Or find our publications, more information and support or how to volunteer. It’s all here.
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Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
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Ask Our Nurses: You can message our nurses here on the forum, or confidentially. Whatever you prefer.
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Someone Like Me: Will match you with a trained volunteer who’s had a similar experience to you. They’ll be a phone call or email away to answer your questions, offer support, or simply listen. Call on 0800 138 6551 or contact our email volunteers
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Publications: Download and order publications. You can read online or order your copy for free. From managing menopausal symptoms, hormone treatment or triple negative breast cancer, our information is here for you.
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BECCA: Our free app is your pocket companion to primary breast cancer.
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Speaker Live: sessions are on every month. They focus on the topics that matter to you, lead by expert speakers from across the UK. You can register for one of our webinars, and watch it live, or as a recording. We also have Facebook and Instagram Live sessions run by our clinical team on a huge range of topics. You can find them all on YouTube
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Welcome to this thread @frame . It’s a wonderful group of people who really hold your hand to get through this shit storm that is cancer. And thank you for supporting your partner and being there for them. At this point it means the world to them and more so for us I am guessing.
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Happy Sunday to everyone
I’ve done lots of reading but no posting! My brain has been a little addled so I’ve spared you all from reading my ramblings…
After I completed the steroids and with the sleep deprivation I was convinced I’d bought 2 steaks. I was adamant despite the fact I don’t eat meat. I looked in the fridge, freezer, oven, grill, cupboards, shopping bags and the bin. Transpires I’d had a conversation about steak with my husband but I hadn’t bought it 
. I did however treat myself to a leopard print bra and matching big pants. I know I’ll only get 5 months wear of the bra but for £10 I’m worth it 
. I’ve bagged up all my other bras to hopefully be recycled. I won’t be needing them.
I’ve craved beige food, in fact everything has tasted bland and beige. Tried some mango sorbet. That tasted of peach toilet paper or how I imagine it would taste. I even tried extra chilli in food but it was still tasteless. Everything tastes of nothing.
My scalp feels sensitive. Most peculiar sensation when I touch it. Have had a runny nose then that dried up so much so I had a bloody nose so been putting Vaseline up my nostrils. To mix it up I’ve also done Vicks vaporub. Rather nice! I’ve looked up my nostrils today and it’s devoid of hair. No idea when or where they went! My Mum said that about her downstairs hair when she want through the menopause
This week I was blessed with a morning of the . It started at 07:30 and was an hourly occurrence until the 4th loperamide. One more episode and I’d have had to call the hospital according to the instructions on my fridge! However it meant that I couldn’t leave the house for my 09:45 PICC flush appointment. They kindly rebooked me for Friday. Spent the whole day in bed. It was glorious. Snoozed and chilled. Sent my husband out to buy quality haemorrhoid cream. Wanted something thick and unctuous. He choose a 4 in 1 preparation. Who knew that was a thing. Far superior to the generic £1 tube. Probably would do wonders for my crows feet!
Has anyone got any advice about skin? For the last week the skin on my chin has erupted in red lumps then extended to my nose. Then blotches on my cheeks. Resorted to applying sudocrem. The pearlescent hue was an interesting look. Reminded me of an elderly lady who was once in front of me at a cashpoint. She turned round when she finished and her whole face was white. She must have muddled her face cream with her bottom cream Gave me a right shock!
My mission to do a daily 30 minute walk failed. Managed it yesterday. Walked into town with my daughter but needed a snooze when I got back. Ridiculous. Today went for a walk in Sheffield Park. Sat on a bench bathing in the winter sun with my eyes closed. It was lovely. I’m going to do better this week with the walking.
Decided it would be unwise going to my daughter’s graduation after all. My husband was up at the crack of dawn to walk the dog and get to London for 07:15. I didn’t hear him get up… I watched the livestream from the comfort of my bed. When she was on stage she blew me a kiss and waved between the obligatory handshakes. Made me cry, she had a little cry too. 
I keep watching the clip! I went to her other graduations but still feel sad I wasn’t there. Her lovely friend went in my place along with her boyfriend. They all said the underground was heaving and It would have been too much given I’m so knackered all of the time.
Bed beckoning. Clean bedding. One of my favourite things!
Night night. Xxx
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