Day 7 after first Docetaxol and Phesgo. Any tips on preventing (for next time) this awful discomfort in my mouth?!
It’s like my mouth is dry and burning and so sore and everything - including water - tastes disgusting! I find mouth stuff gets me down the most. I can cope with the awful flu like aches and pains of day 4-6, but the mouth stuff makes everything miserable.
On EC I had oral thrush but was able to treat that preventatively on subsequent treatments. This is very different to oral thrush. Wondering is there is anything preventative for next time and what I can do right now to bring some relief.
Hi everyone, i dont really post on here but i do read alot of the threads on here. I was diagnosed with early stage of invasive breast cancer her2+ in july 2024. Had a lumpectomy to remove my 13mm lump and sentinel node biopsy that came back all clear. Ive nearly finished my chemo treatment only 2 sessions left. Had 3 of ec which wasnt as to bad feeling slightly sick and just a bit tired. Had my first of docetaxel and herceptin injection 2nd jan. My oncologist said this is the hardest bit and she wasnt wrong ive never felt so ill and i feel i can handle pain but this one knocked me right of my feet. I ended up in hospital due to a throat infection and my neutrophils were so low. Ive got my next round on Thursday and have to say im dreading it. Ive lost all my hair now and my skin is so dry and ive got lumps on my tongue ive tried the mouth wash they gave me but that doesn’t seem to work. Is there anything else i could try and what would people recommend for my dry skin. Xx
@hlc
You may want to join the thread set up over a year ago for HER2 and need some buddies as our treatment lasts longer than chemo alone. It’s a supportive thread with some like me who have finished active treatment now on Letrozole and Zoledronic acid, some having chemo, others on Herceptin/Phesgo/Kadcyla.
@sawabev might be a thread you might want to join/follow as well.
I’m having surgery after chemo (obviously I’m absolutely petrified) never had any type of surgery before but trying hard to not think about it until it happens…….
glad to hear you’ve been feeling not too bad, that’s a real bonus!! I haven’t even had a picc line, they did mention it but haven’t since and so far my veins have been good so maybe no point now??!
omg, I have had the exact same on Docetaxol…… I get it for the first week (I’m on day 10 now and it’s got a lot better!! I am trying to describe it to people and it’s exactly that, a burnt fuzzy feeling, like I’ve eaten something way too hot!! Yes and also dry…… my taste buds haven’t really changed but with this mouth nothing satisfies me, I’m craving things but nothing is appealing!! I’ve eaten/sucked on so many skittles, lol because I just wanted something to make my mouth feel better!! they have worked actually but now I feel I don’t even want to look at one…… I’m craving chewy sweets now (I know it’s not the best sugar wise and for teeth) but that’s all that’s helping me through this. I have the dry mouth wash too, have you got that?? That’s good, using it thought out the day. Apart from that, nothing has helped :((
So did you have EC first im guessing?? did you not get a mouth like this at all on EC? were the symptoms totally different so far?? I’m sorry to hear the mouth is getting you down, it isn’t fun at all……. even drinking anything feel weird :(( and I love having a million drinks on the go but everything just feels strange on my tongue.
a lot of us back on 2017 threads found udderly smooth with extra urea from Amazon worked like a dream on parched skin, just though I’d mention it if your strutting find a cream that works, I remember few of us struggled the someone found that worked and shared it so we all tried it and worked for us too Shi xx
Yes I had 4 rounds of EC before starting Docetaxol with Phesgo. I had oral thrush on EC which was also miserable but in a different way. But after cycle one they gave me preventative tablets for it so it was never as bad as the first time again. They have prescribed me some gelclair which I’m about to collect. I’m really hoping they can give me something to prevent for next time. Or even maybe reduce my Docetaxol dose as they reduced my EC dose after first one be 20%. Am thoroughly fed up. Feels like the final straw!
Hi, I’ve just had third EC and going into three Dox next. I was hoping they would be easier but they sound like misery
I’m in a complete panic as I have discomfort in my side and I’m so scared there is spread to the ribs area. CT on Friday and I’m terrified. I’m hoping the discomfort is something simple that is just being amplified due to chemo but I’m so scared x
I’m day 8 and am so miserable with this much pain in my mouth! Desperate for it to pass. The inside of my lips and the sides and top of my tongue are red raw and my mouth is so dry and painful but nothing eases it and everything tastes awful. Also painful to swallow. They’ve given me gelclair mouthwash now but it’s not the miracle I’d hoped for. Honestly I can cope with the aches and the pains and the constipation and the piles and now the trots, but for some reason the mouth stuff tips me over the edge! I just look forward to bedtime so I can tick off another day! But I did discover out of pure desperation that a carton of ribena is really rather nice! Haven’t had a carton like that since I was young! So annoying that sweet is the only thing my palette can tolerate!
@stevie86. I do hope the surgery goes well for you. Like you i haven’t had any previous surgery so it was quite scary. Although i was happy to get the damn thing out asap. My surgery was already booked but got a call week before and i found out i was her+ so i had to make the decision as to what ordered to do it. As i was looking at waiting 6 weeks to see oncologist i decided my best option was to go ahead as planned and remove tumour and then mop up with chemo… trouble is now how do i know if chemo as done the mopping up . Not sure if ill be scanned or not before radiotherapy
Evening everyone - It’s been a bit of a week with mum in hospital and my fatigue just a bit too much , I was also in the midst of a period which seemed to last about 12 days and I was wiped out … I’m feeling a bit brighter now but I haven’t left the house for a week or even put my wig on … I will aim to get out for a walk tomorrow …
the good news is the new drugs finally sorted mum’s tachycardia out and she went home on Friday and is feeling fine .
@sam3 I do understand the fear of spread , every twinge or ache can be really frightening , before cancer you’d dismiss it but now it feels so sinister … the only thing I’ll say is … hopefully the ct scan will be innocuous and out your mind at rest . I had a single mastectomy and SNB in September and I’m
Still very sore in general in my rib area x
@stevie86 So pleased to hear you are still feeling not too bad and that you are getting out and about x I was terrified of having surgery too , quite literally said my goodbyes to my family on the morning and rewrote my will It was actually fine , I went to sleep and woke up and it as over and I wasn’t in pain either x
@hlc yay on finishing chemo ! If you’ve joined the her2 thread lovely salbert and @naughty_boob will tell you to “slap a bench”
I’m also her2 and I had surgery first , they thought I just had multi focal DCIS with a teeny invasive but when the boob came off it had five sneaky invasive hiding in it …So my chemo is a belt and braces “mop up “ too … no radiotherapy as the boob has gone and just hoping that the chemo indeed mops up , plus the never ending jabs . Have they scanned you to see if you’ve had a full pathological response ?
Ps I get the horrific taxel rash too . I look like I have measles for about a week
@sawabev I’m so sorry that doxetaxel has knocked you for six … it might be worth discussing a dose reduction if you’ve already been in hospital with an infection x my first cycle of nab paclitaxel was pretty rough and I had to have a delay of a week and a dose reduction .
@rfg ring the triage line about your mouth , you shouldn’t be suffering like this , you may need treatment for oral thrush x
That’s good news about your mum. Hopefully being at home and on the new meds will lend itself well to a speedy recovery.
Sorry to hear you are feeling wiped out. Tbh on this round I have been feeling really tired and had a cold which totally bowled me over. Just prepping for round 5 tmw now and managing normal anxiety about the chemo day itself!
@stevie86 im nervous about surgery too which I think will be in March for me. And I have even fast forwarded to waiting for the pathology results and how I will be so anxious waiting for those. Honestly I need to distract myself from thinking too ahead!
Hi @arty1 thank you. I hope your mum is feeling much better. It’s hard to juggle everything when feeling wiped out yourself isn’t it?! I hate getting up in the morning at min as things just feel like a hard slog. My pain is on the opposite side of my original cancer site. I’m absolutely terrified and praying it can be explained away with something else.
Sending big love
Hello pls can I join ?
I began chemo on 5 November .
I have abraxane, carboplatin and phesgo. Each cycle I’ve had diarrhoea but this one has been the opposite and due to haemorrhoids and constipation now feels like I’m
Passing glass when I open my bowels
@arty1 . Lucky enough to have a bell so gave it a good old emotional ring. Lots of nurse hugs to go with it. Had lumpectomy 28th August 2.4 cm invasive dcis ,her2 positive er positive no lymph node involvement. I see oncologist tomorrow face to face. They didnt call me nye like they were supposed to so ive some things to ask. Nothing mentioned 6 weeks ago in regards to scanning and pathology report which worries me. I really hope i do get scanned. I know ill be doing 5 sessions of radiotherapy but dont have a date. I have herceptin jab till November and letrozole tablets for 10 year. Ive had zoledronic acid via infusion and i think ill be on tablet form for 3 years. I asked chemo nurses about knowing if its working but they said bloods they’ve been taking over past 12 weeks show blood counts ect. Im super worried that the mopping up hasn’t worked
I’m finding chemo day anxiety has reduced but tbh It’s the cannula palaver and also horrible pain injection which stress me so much @hlc I’m envious you had a bell to ring . Id definitely be giving one an emotional ring . Sadly there is no bell in our chemo unit … it’s not brilliant tbh … they moved down to it after my first cycle and I dont like it . They’ve moved into the old same day emergency unit … very dated sbc gloomy looking … all the pairs pushed in tight next to each other and no curtain and no cubicles so zero privacy when I have my leg injection . All a bit rubbish plus now every one us in a huge room where as the old rooms were split in two and smaller … so nurses don’t notice when your machine starts beeping for example until you physically grab them and point it out .
Haven’t been overly impressed …
It’s always a worry wondering if the treatment us working … I like to see hard evidence … ie maybe a detailed scan image any stray cancer cells being violently zapped by the chemo … would they give you a ct scan ?
Welcome to the fold @lisalisa … I’ve found chemo just obliterates my gut … I don’t know whether to expect lava bum or constipation … have you tried germaloids or anusol suppositories for the piles ?
@sam3 I find I can’t sleep at night but can’t get up in the morning I think our bodies have been through a lot and pain is probably not unusual but I hope the scan gives you reassurance x
@arty1 yes for sure our bodies are going through the wringer at the minute. I’m trying to convince myself that the extra pain could be down to chemo pressures on my body, I did notice a lesser niggle in same area before surgery or chemo happened. I have myself worried sick and pray for some reassurance. Like you, I’m struggling to sleep too. After cycle three, I really do feel like pants! Have you had three now? X
Im going to ask the question tomorrow… my chemo unit was just a 6 bed with curtains and quite modern quite small though. You were not allowed anyone with you only 1st and last treatments although i got away with my husband coming in till week 9 when someone moaned and it got stopped… Staff are run off there feet mind you and cant always work out whos machine is bleeping. I seriously do hope its a yes to scan … ill let you know tomorrow evening. My appointment is 130pm but usually there 2 hrs + seeing you . When do you get to slap bench? Any time soon
@hlc There are 16 all in one room in my unit now … There was someone in last time having their last chemo and they just walked out . Not even a bye from the nurses … bit poop !
No one is allowed in other than patients and the cancer volunteers
My last chemo a week this Thursday but still 1 months of injections to do