Thank you all for your kind and positive messages 🩷
@naughty_boob@salbert thanks for signposting me to the groups. Very helpful! I’ll have a look at the December chemo group as that’s when I started.
@arty1 thank you. My little girl is nearly 20 months now. She’s doing great and having to wean suddenly before I had planned was definitely harder on me than her. The treatment so far has been a bit up and down, I’ve had quite a lot of nausea and some sickness which was made worse by not being able to take the domperidone as it was stimulating my milk production most of my hair has fallen out despite using the cold cap which has been pretty distressing! I know it’s just hair, but I’m a natural redhead so it’s a big part of me
@pennyp thank you, glad to hear that your treatment went well. I’ve been told I’ll need the mastectomy because the cancer is in the breast skin. Great on the yoga, I’ve never done yoga but have been thinking about going to a session at a local cancer charity centre.
@jeml gosh our stories are very similar. I’m so glad to hear your positive outcome and that you are doing well now.
Does anyone have any tips for Docataxel? I’ve read it can cause all sorts of side effects my brother bought me some Suzzipad ice gloves and socks - has anyone used them/found them helpful?
When I was having chemo in September 2023 a lady on the chemo thread was at The Christie in Manchester, it was asking patients on Taxanes (Docetaxel/Pacitaxel) if they wanted to use ice sleeves for the legs and arms to prevent peripheral neuropathy. They had some success, it apparently worked similar to the cold cap.
I iced my feet in ice slippers and ice packs for my hands on the day of chemo and the next day at home. I had some neuropathy but not enough for the team to be worried about it. I couldn’t have it in the unit when I was having my infusion due to travel time and items defrosting before I was given my infusion. They had no facilities to store them for me. I think it’s worth a try with the suzzipad.
www.lookgoodfeelbetter.co.uk to some great courses including for hands and nails that suggests wearing nail strengthening treatment, oil/balm daily and paint in a dark colour (black/purple/ deep red) as it can help with nail damage.
@sooz1 Gosh that’s hard … she’s so little … your story is definitely very similiar to @jeml … both very young with tots to look after … I can’t imagine having to run around after a toddler who doesn’t understand what’s going on … although tbh …the selfish 20 year old who expected to be waited on hand and foot after my surgery and chemo was g much help (the less said about that the better ) … it must have been hard to have to give up breastfeeding … I had to stop breastfeeding my 20 year old at 7 weeks when I developed a PE and I was grief stricken … I hope you are getting plenty of support and love x
@jeml how is recovery going from your surgery six weeks on ? How are you feeling in yourself ? X
@pennyp good to hear from you … a friend of mine took up yoga after a benign brain tumour and she’s found it so beneficial.
@naughty_boob I had terrible neuropathy after cycle one but it reduced with a dose reduction .
I had my LAST chemo yesterday ! I’m so relieved … There was no fanfare or bell to ring sadly and I’ll be back there every three weeks again for months anyway so I walked out and slapped the bench by the back entrance , much to the amusement of the people waiting at the parking pay station then came home and slept until this morning … to celebrate I went wigless and proud lol and took a celebratory pic …
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
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
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.
@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
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.
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.
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!
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.
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.
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
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.
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!
most of my hair has fallen out despite using the cold cap which has been pretty distressing! I know it’s just hair, but I’m a natural redhead so it’s a big part of me 
my brother bought me some Suzzipad ice gloves and socks - has anyone used them/found them helpful?
I had to stop breastfeeding my 20 year old at 7 weeks when I developed a PE and I was grief stricken … I hope you are getting plenty of support and love x
and I’ll be back there every three weeks again for months anyway 
so I walked out and slapped the bench by the back entrance , much to the amusement of the people waiting at the parking pay station 
x
Congrats on finishing chemo 
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!