Hi @hedgehog I will shortly be starting Kadcyla and this is a worry for me. I still have what I believe is PN in my toes from my TCHP. Has your PN only come on since you’ve started Kadcyla?
Have you been wearing anything like compression socks and gloves and possibly ice to help prevent symptoms?
Hi @evicting_00_squatter yes it’s only really since I started kadcyla, though looking back I may have had sore soles of feet just occasionally on Docetaxel. Lots of women seem to do well on it but I feel like my body really doesn’t like it. I’ve had low platelets, nosebleeds, an infection which put me in A&E, and now PN. To be honest I don’t think I noticed the PN until it was quite sore, just because all the nosebleeds and other stuff distracted me from it, plus I was having to spend all my time in the clinic self advocating to get bisphosphonates prescribed, which took 3 cycles until the oncologists actually sorted the blood test which showed that I was indeed menopausal. It’s annoyed me that at my particular hospital they just seem to say “how have you been” and rely on you to cover off all the symptoms you’ve had, whereas I think they should be saying “here are the 3 most important side effects, these are the ones that could stop your treatment, so have you had any of these”. I think if that had happened, I would have realised what was happening sooner and would have had a dose reduction.
Once it was recognised, I had a six week break from it to see if the neuropathy improved, which it did a bit, then had a reduced dose on Monday but my PN is back with a vengeance. I don’t want to scare you about it and have dithered for a while about posting about this as I didn’t want to alarm anyone who’s recently been told they need it - as I say I think a lot of people are ok with it. But I would definitely say pay attention to it and keep your onco up to date at every cycle, with how severe it is.
Oh sorry missed the bit about socks and gloves @evicting_00_squatter - this was literally only mentioned to me before the cycle I’ve just had. I did use ice packs on my feet on Monday but they haven’t prevented it from worsening. If I’d had that advice sooner, it might have helped 
It’s good to share all experiences so at least those of us who are about to start can consider further measures. I might even look at suzi pads as it’s a shorter infusion and I wont be wearing a cold cap.
Are you on the Kadcyla2026 thread? There is someone on there who had mentioned having issues with NP.
Hello there, I’m a June starter, currently receiving docitaxel, carboplatin and phesgo for HR negative HER2 positive ILC. Just wondering if anyone has had any cutaneous reactions to their phesgo injections. I’ve just had my second and both times have had a very large red splodge on my thigh that looks wild but isn’t sore at all or itchy. The Onco nurses said if it happens a second time (which it now has) they will swap me to IVs but I’m worried this will mean a really long day (I’m cold capping) or a two day stint. Has anyone had similar cutaneous reactions and their team just pushed on with the subcutaneous injections? Thank you in advance for anyone’s time, these forums are so helpful xx
Hello, @eils85 I had a reaction on my second Phesgo but the positioning was the part of my thigh that I lay on at night. Subsequently I asked for the injection to be either a bit lower or a bit further forward than that sweet spot which looks juicy but is actually the part I slept on.
Hello all
@hedgehog and @evicting_00_squatter Thanks both for sharing your experiences — it’s so helpful for people coming behind us to hear the different ways treatment can affect us.
I had a little bit of peripheral neuropathy in my fingers and toes right towards the very end of Paclitaxel, but thankfully it stayed quite mild and didn’t become a major issue. It does seem to vary so much from person to person. Mine went away of its own accord a short time after finishing treatment.
I hope the cold socks/gloves or ice packs help as much as possible for those still going through treatment. It’s definitely worth raising any worsening symptoms with your team early so they can keep an eye on it. Sending love to you both.
@eils85 Hello to you!
I also got a red patch on my thigh after each Phesgo injection, but mine was fairly mild and didn’t cause any discomfort, so my team were happy to continue with the subcutaneous injections.
It might be worth discussing whether changing the exact injection site could help before moving over to IV, especially if the reaction is only local and not causing itching or pain. Hopefully your team can find the best option for you. Those cold capping days are long enough, without extra stress.
I took my parents to a West End to Godstone event on Saturday evening and my Dad was complaining of overheating so some very kind people lent him their cooling devices. This got us talking about ways we keep cool during the intense heat and I mentioned my ice packs under each armpit method. The downside to this is that I forgot I’d had all the lymph nodes removed from my right armpit and this left my little finger on my right hand numb for two days. You live and learn! I looked it up and discovered that it’s not a good idea to put an ice pack on an armpit with no lymph nodes. So my first reason for posting this is to tell you all NOT to do it. But secondly because the woman sitting next to me who I’ve known for quite some time now, said “Oh really? I have no lymph nodes so I’ll remember that.” This prompted me to ask if she’d had breast cancer, to which she replied, yes, over 30 years ago now. She couldn’t remember how many lymph nodes it had been in, but could tell me that she was 40 years old at the time, with two young children. She had the full works of treatment like all of us, but has been clear now for so long that she says she doesn’t really think about it anymore, mainly because it was so stressful at the time. I told her that I would be telling you all about her because it’s so great to hear of women like this. The ones we just don’t hear about because they are a total success story who have moved on and just remember breast cancer as an unpleasant interlude in their otherwise happy and successful lives.
Salbert
xx
Good evening,
I have been quiet on the thread in recent months. I have been reading but just not posting.
It was a year last Wednesday since my double mastectomy. I remain happy with my reconstruction. They’ve dropped and don’t look too different from my originals or if you watch 
, my OG’s! I’ve an appointment with the surgeon in a couple of weeks then I’ll be discharged and placed on the PIFU pathway.
The symptoms I experienced back in April which I attributed to another brand of Letrozole persisted for a couple of months. Decided that I needed to be brave and took the ‘belt and braces’ approach, contacted the BCN and within 36 hours I had a CT head. Appointment for the results was then scheduled for the day I was going on my long awaited holiday. In view of that I didn’t feel able to book many days away until I knew all was okay. Thankfully the scan showed nothing untoward, just my ageing, oestrogen depleted, chemo addled brain. Phew! Had a discussion about switching the AI to another but it’s not intolerable unless I get the disagreeable brands. Time has come to phone around the chemists again and if I track them down, then request a prescription for more than one box.
Over the weekend I noticed my hair is thinning in the temples and remains thick and curly at the back. No idea what to do with it. If I don’t get something done I’ll be looking like Fish from Marillion in a couple of months. I am tempted to go to the barbers and ask them to style it as they’ll be experienced with receding hairlines. Guess I could use a headband or resort to a comb over…
Has anyone found that their hot flushes have ramped up ten notches in the heatwave? Last week I resembled a sweating tomato. Sweaty hair, face and body. Then I realised that my armpits no longer sweat. That’s a win as I will never have up to worry about body odour and I could consider ditching deodorant.
Best try and get some sleep as it’s work tomorrow
Night night x
On caych up while I wait for a car service.@salbert love the story of your lady many years on from her bc treatment and I’ve noted the bit about ice packs and lymph nodes, not one I’d have thought of. @mrsjelly very glad your scan is ok, hope you can plan a proper holiday soon. Also useful to hear someone else note brand related issues with letrozole, my original consultant just looked at me like I was imagining it. I was doing the rounds of pharmacies too, trying to get the better brands that in my case didn’t make me feel nauseous. A different consultant team are swapping me to anastrazole as Im getting increasing joint pain and stiffness ove the 11 months on letrozole. From what I’ve read anastrazole doesn’t deplete oestrogen quite as much but outcome data for both drugs is the same. I await the prescribing system to catch up and see if it helps at all, I need to be able to move to plan crazy adventures. Love to all.
I would never know not to ice a lymph node free area, it’s something you think you would have been explicitly told not to do after your operation. So lovely to hear about the lady who was diagnosed at 40 and still with us. I hope that’s me in 10+ years. I’m so pleased to hear you had a night out with your parents.
@mrsjelly so lovely to hear from you and glad all tests were clear. My hot flushes, sweats and general overheating was amped up in the heatwave. Luckily I had an air conditioning unit in one room but even with that I struggled as I think the general air was so much warmer.
@eils85 welcome to the thread. I had some issues with my thighs with Herceptin, I made a note each week where the injections were and which leg. Some areas were more sensitive than others so I asked them to keep away from them. Also I think lying on the injected side in bed increased the discomfort.
Well, I had my next round of Docetaxel carboplatin annd Phesgo after having reactions the first 3 rounds to the Docetaxel. My oncologist decided to switch that out for dose dense paclitaxel for the final 3 rounds. It’s an 3 hour infusion?!?! A fact he forgot to mention. Anyways -My oncologist seemed pretty confident in the change. Just looking for some people with a similar change or regimen.
I am an intermittent visitor here as well. Just wanted to thank you Salbert for telling us about that lady. Just what I needed to hear today. It is really good to hear positive stories when all on the general social media is full of sad stories.
Hi @olliek ,
I had three nasty adverse reactions in a row to Ducataxel. The first one was shocking and needed a dr to be called, the second I was sure was going to kill me so l called my oncologist as the reaction had happened as l hit 5ml. Oncologist asked if I was willing to try once more with everything they could throw at me plus being under the care of the ward sister in charge. I still had an adverse reaction at 5ml but the ward sister was backed by two other ward sisters And they had the rescue drugs ready before they started ‘just in case’. Oncologist decided I really was allergic to the drug carrier used in ducataxel and also found in paxitaxel so they argued for funding for branded abraxine.
I should have started in Feb but because of adverse reactions Ìt had to wait till March.
My regime became abraxine, carboplatin and Phesgo. Phesgo has now been completed and I know my oncologist wants to start a specific brand of herceptin next Wednesday for my last chemo round before surgery on the 19th August.
Hope the new drug and regime has been okay, please know that if you still have a reaction to pax that your oncologist will have a plan B and C &D…..etc.
@wibbles thanks so much for the reply! I have 2 more rounds and can finally see the light at the end and am so hopeful to get through without any more reactions. It’s all so stressful enough!
I’m glad to hear you found a regimen that worked for you! I was able to tolerate the paclitaxel fairly well just a little shock at the start they think I’m just hypersensitive not necessarily allergic because after a pause everything was fine. We will see how the next round goes.
Hello
Ladies - It’s been a month since I posted due to varying different things, one being I needed to lock in and support my daughter who unfortunately had a complete Mental Health crisis during her GCSES and subsequently missed four exams 
It is what it is .. her happiness is more important so I’m just focusing on her and we will deal with whatever happens on results day and plan accordingly x
She had her prom last night and looked so grown up
I’ve realised over the last few weeks that I am carrying everyone in my family , I am the one that sorts and does everything. My ex husband dies zero regarding the children and my current husband. Much as I love him. It’s like being married to a teenager . He cannot adult .. when it comes to finances and paperwork. I single handledly organise everything in the house , even his gp appointments! If I wasnt here .. he’d just starve to death in a corner I swear .
I’ve been job hunting for him for our move, doing his CV and covering letters ..
The final straw came when I discovered that he hadn’t submitted a tax return in 2015 when self employed and had just been paying the never ending penalties for 11 years ! I have now sorted this with Hmrc but subsequently realised I’m suffering from severe burnout , so I’ve booked a holiday to Devon next week, just me and my daughter , I need a break and my phone will be off and husband will have to grow up and cope !
Now to try and catch up on what I’ve missed x
Happiness is definitely the most important thing, everything else can wait. Your daughter looks beautiful, you must be very proud.
My daughters have both had exams this year and my husband sounds very similar to yours.
I’m feeling quite overwhelmed at the moment with the prospect of 15 radiotherapy sessions starting later this month and Kadcyla which takes my treatment into early 2027. Its such a marathon 
(Oh and starting Tamoxifen)
I just keep imagining they’ll find something else at the end of it all.
@evicting_00_squatter I fear there are way too many husbands like this ! 
he’s just an eight year old in a man’s body We’re your daughters doing GCSES ? I feel like there seems to be so much pressure these days on the teens so they feel that they are “failures” if they don’t get top grades 
it was all too much for my daughter ..and she just had a meltdown .. it will be nice for us to have a break away
We are supposed to be moving in six weeks four hours away . Do you think my husband has done anything ? Nope. He hadn’t even started job hunting .. he’s a real Johnny come lately 
I have one doing GCSEs and the other doing A-levels and hoping to go to university in September. (Just to make me even more emotional) The one doing GCSEs did have a panic attack in her first exam and froze for about half the time but somehow managed to move on from it and did ok for the remaining exams.
When life gets hard some men definitely seem to revert to being boys. I haven’t really felt fully supported by him through my treatment.
