Thank you @NikiR, it has been the hardest and least expected aspect of my treatment journey so far. I had my 60th birthday last month - all celebrations involving food and cake are on hold! Hopefully I’ll be back to normal or at least much better for Christmas. X
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Thank you @Shi. You are right ginger biscuits are a lifesaver, but they get rather monotonous after 3 months. I am missing savoury - cannot taste salt at all. It’s just like grit!
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Hi @suedot , I’ve had pretty much the same experience. Though, as others have said, it varied from cycle to cycle what tasted bad/indifferent. I had my last Docetaxel & Phesgo on 13 November, all kinds of cheese still taste sour and off, bread tastes of nothing and the texture feels bad, my favourite chilli sauce has been off the menu for months, but other things like tomato soup are tasting ok again. I guess it’s a waiting game, like you I’m hoping Christmas dinner will be enjoyable!! Belated Happy Birthday xx
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@emsj that did give me a chuckle reading about your son going to pull off the wig, the little pup 
I haven’t worn mine for a couple weeks, it feels like it needs a face of makeup and seeing as I’m mostly only going to hospital appointments I’m wearing a beanie over my own hair. I’ll make an effort for Christmas photos 
Went up for my first solo Phesgo yesterday. Appointment at 1, sat in the chair, your temperature is too high, I’ll have to talk to the doctor. Full bloods and cultures taken, then sent to the flippin assessment unit again, they need to just name a chair for me now. By 4pm I was let back to the chemo floor to have my Phesgo, then told I’d to go for a chest x-ray. At least they fitted that into the 30 minute post Phesgo wait, so I got out after 4 hours. I hope this doesn’t happen every time! I said to them "look I’m really sorry, but nobody told me I had to ring on Phesgo Day if I had a high temperature. And I’ve been getting high temps all the way through chemo since July, it’s clearly just a thing I have, does it really need to be checked every time?! " well that was a silly question to ask a medical person
Seeing the plastic surgeon at 1.30. Probably gonna tell me how great he is again. Don’t worry, I’ll play nice!
How is everyone else doing? lots of appointments and radiotherapy and other stuff going on…
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Thank you @Hawketower. I really didn’t anticipate this issue. You hear lots about nausea and sickness with chemo, but less about taste change. I’ve learnt about myself through the experience and how much I use food and taste as a quick comforter - including tea and coffee!
Thanks for the birthday wishes too 
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Omg yes, the first time coffee and tea tasted bad was not a good day!! They’re back to normal now thankfully. I guess everything eventually comes back, it’s just what to eat and drink in the meantime isn’t it. When this is over I’m not touching a bowl of soup for a year
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I really struggled with taste changes and the texture of food. Toast was like sandpaper, it made my mouth more sore, and nothing tasted right. I had my last chemo, Tchp, on 23rd Oct. While things are now for the most part ok, I still wouldn’t say everything is completely normal. And my mouth is so dry!!! I’m still having phesgo every 3 weeks, not sure if that is the problem. Some foods still make my mouth sore, it’s still things like toast or pizza, and I really want to enjoy a pizza!
. I’m really happy I can now enjoy a nice fresh salad, all green veg seem to help, and yogurt. And the weirdest thing is that cheese in the tube, primula, when my sense of taste was at its worst and my mouth was really sore I lived on that and complan:scream:
. I still eat the primula if my tongue feels sore/off.
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Left mastectomy, axilla clearance and DIaeP flap done yesterday. Please excuse any typos or nonsense, was out of recovery at 8pm and am still
On a drug induced high at midnight my plastic surgeon was absolutely lovely when he came to draw on me before the op, I take back every unkind thought I ever had about his ego
I hope all of you are feeling ok, getting appointments/treatments sorted, getting more clarity, and looking forward to
Christmas 
take care xx
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I was going to avoid looking at the scars for as long as possible. But the guy who came to see me after the op told the nurse to leave off the compression underwear for tonight just to give me a more relaxed sleep. So there are gauze pads and tape and I’ve had a bit of a nosey. Doesn’t look as bad as I thought they would, though I am pretty drugged up
We can get through this ladies, we are flipping Warriors!!! Xx
I’m going now don’t worry
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@Hawketower I am so pleased your surgery went well and you are doing okay, wishing you a speedy recovery.
I had my appointment with the plastic surgeon yesterday and now have a date for my double mastectomy. It is booked for 18th January, I am so pleased, I was really worried I would have to wait months. I also have an appointment for my CT scan on 14th January. With these dates in my diary, I can finally relax and look forward to Christmas. Although not really relaxing as I am now panicking that I’m not ready for Christmas!
Has anyone else had any ‘delayed’ symptoms from their chemo? I am now 7 weeks post chemo and have developed neuropathy in my fingers over the last few weeks and today I’ve had some new pains in my feet. This, along with the pains I was already getting in my arms and legs, are really starting to get to me, especially because pain killers don’t seem to do very much.
I still feel very much on the roller coaster, managing the ups and downs, yesterday was an up day with the good news about my surgery, today a bit down, ending up in tears because of the pain. Fingers crossed for a better day tomorrow.
I hope everyone else is doing okay and looking forward to Christmas. xx
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Hawkestower 
take it steady let things knit back together do your exercises so you retain movement 
Shi xx
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Merry Christmas everyone, I hope everyone had a good day yesterday.
Sorry I haven’t kept up with the posts, been a bit hectic.
@Hawketower glad you have your surgery done and dusted, hope you are feeling and recovering well.
@NikiR , weirdly, last night the toes in both my feet were completely numb again, last chemo was oct 23rd and I did have a lot of neuropathy at the time. Also stomach has been off but I don’t know if that is the Christmas food or some weird post chemo/phesgo thing.
I’ve finished my radiotherapy on Sat, did the shorter five days. It all went smoothly, very quick, they didn’t have trouble with positioning or anything. Phesgo again tomorrow.
Onwards and upwards.
Best wishes to everyone x
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Dear @NikiR yes I certainly still have plenty of post-chemo symptoms at what for me is 6-weeks since my last treatment, so I suppose only 3 weeks really… how do others count the end of treatment? - the date of the last dose, or the end of that cycle when the next dose would have been due? I’ve not really thought about this before.
Anyway, I had surgery, (lumpectomy & full lymph node clearance) 4 weeks after my last dose of chemo and I’m still having 3-weekly Phesgo injections, so I think soon it will be hard to work out what is a symptom or side-effect of what! But, certainly the pins and needles come and go in my finger tips; my bowels are still a law unto themselves and the return of taste is very much a work in progress. I suspect I am too impatient for normality to return! … and I’ve most likely still got radiotherapy to face!!!
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Hi all, I hope you all had a lovely Christmas. I have mixed feelings about the New Year, I will be happy to put this year behind me but know the New Year brings its own challenges.
I am now two months post chemo and currently struggling with the neuropathy in my fingers, it is very painful and the medication isn’t really doing anything to ease it. Otherwise I’m feeling okay, all other symptoms seem to have passed. I am counting post chemo from the date of my last treatment, from what I was told, this means that the chemo drugs should now be out of my system.
@Hawketower I hope you are recovering well and have been able to enjoy Christmas.
@emsj how are you feeling now? I hope your stomach has settled down and the numbness it you feet passed quickly. Did you find anything that helped the neuropathy?
@suedot how are you doing? I hope your recovery is going well and your symptoms are easing.
Wishing you all a happy and positive New Year. Xx
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Happy New Year everyone, may 2024 be full of health and good cheer xx
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A bit late but happy new year everyone!
@NikiR , I don’t think I have any useful advice for the neuropathy, mine hasn’t been painful and I only get it for short periods now. It did spread up my calf muscles a bit at one point but it was a weird numbness. I asked the nurse if it was magnesium deficiency, she thought it was neuropathy, the oncologist said it might be low magnesium. I have been taking magnesium and vit d when I remember but I’ve no idea if it’s made a difference.
I’m having my first zometa infusion this week. For some reason I feel very stressed about it. I just want treatments to be over I guess.
Hope everyone is doing ok
X
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Hi everyone
A couple of questions - is anyone still losing hair post chemo? My last chemo was 13 November so quite a while ago now, but I’ve got some new small bald patches. Numbness in feet - not painful but really bloody annoying and uncomfortable, and affecting my sleep - has anyone got any tips for that?
Had an oncology appointment today, the doctor said the results of my operation weren’t through yet so basically the appt should’ve been cancelled as she had nothing to tell me. Then proceeded to tell me that she’s going to move my next Phesgo back a week in case the results show cancerous cells remaining so I’d have to start TDM1. Nothing to tell me??? How’s about not sh1ttign me up telling me about another chemo drug then. She said hair loss can continue 6 weeks after chemo ends, and if the neuropathy isn’t hurting then why is it keeping me awake and it might stay for up to 2 years or forever. I felt like asking her if she’s a funeral director in her spare time seeing as she’s such a bloody gloombucket.
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Hawkestower, sounds like she was time filling because she doesn’t have answers yet or your going to be discussed at an mdt and your appointment with her should have been put back till after that might be worth ringing your team and speaking to your bc nurse or speaking to one of the secretaries and asking them to find out more for you (I’ve always found secretaries extremely helpful when contacted) sending 
Shi xx
Hi Shi
Hope you’re well. Oh absolutely she was time filling, I’d rather glass half full though than theoretical “you might have to go onto this chemo drug” guff. Nevermind, saw the plastic surgeon today, he’s happy with how I’m healing. Breast surgeon on Thursday, and oncology next Tuesday, so hopefully the MDT will be this Wednesday and I’ll have results soon x
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Just had a call with oncology. I’ll be starting 13 cycles of TDM1 on 25 January.
She said there was a residual 16mm of cancer left before the op, which is good as I started off before chemo with a 40mm tumour and around 20mm in lesions, and 5 out of 21 lymph nodes affected. I’ll be having radiotherapy to my chest wall and collarbone, dates tba. Anti-oestrogen tablet for 10 years, type tbc, as they’re not sure if I’m peri or post menopausal now.
Armpit had ER+ and HER2+ receptors, breast had ER+ and HER2-, so I’m being treated as HER2+.
I don’t understand why I have to have the TDM1. I asked her twice “so this is to prevent recurrence, not because there is still cancer in there?” and she said “yes to give you the best outcome, and based on your earlier response to chemo” etc etc. But the chemo shrunk it before, a lot admittedly but not total clearance, so what’s chemo going to do now?
Anyone else had both neoadjuvant and post adjuvant chemo, or TDM1 specifically? My head is spinning 
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