This round is going better @nicnac17. I ferl better prepared. My dose is lower and I’ve better meds. You might find its all ok. But be prepared. Ask for imodium and codeine in your prescription. Drink loads of water. Stock up on fruity lollies. As i say, taste buds not great but they fo come back. I found strong, spicy and salty flavours helpful. It helped me lose weight. Once taste buds returned to normal, so did my appetite.
I wanted ice cubes in every drink. Fizzy apple tango was good.
If you do get the aches after filgrastim/pegfilgrastim, codeine is helpful. I felt like I had flu.
Steroids finish earlier so I slept better.
Hope that helps. You’ll be ok, but ask away if you need any advice. Xxx
Thank you so much for all your insights and it’s good to hear this round is going better. Be prepared is going to be what you and others have mentioned. I asked the onc about compression socks they said there is no proof they work but its up to me, so I’ve decided I’m going what’s been said on here so I’m going to put them on and see what happens. Noted on ice lollies and ice cubes and spicy food.
Ive been OK with the filgrastim on the EC so will see how I go on the D. I do have some codeine but should I ask for more?
It helps enormously thank you so much, I’ll let you know how I go on Monday. X
They told me prior that I’d need the zolondronic acid every 6 months for 3 years and ADCAL for 3 years. They just started both on round 3, my 1st Docetaxel.
They taste like parma violets!
Nope I’m on 3 x weekly chemo & they’ve pushed my PICC clean and flush to every 10 x days (which I wasn’t happy about so got district nurses every 7 x days but they were shit so I reverted back) so I get that once between chemo sessions (with a HCA) then bloods + PICC flush & clean the day before my chemo, also with an HCA. It’s in & out. Will go onto EC every other week soon so maybe I will get more face time then?
Yes in on Tuesday for my last Abraxane. Then it’s a 3 x week wait to start EC which will be every other week. I really wanted to start sooner as this last, 3rd week im on now im fine - they won’t let me and of course the week i start EC is the week of my daughters nativity play
Well good luck for Tuesday. Obviously we are all different but my first round of EC was manageable, the worst symptom was acid reflux which I just sucked up so you could be A-OK and nativity will be a lovely escape from the trials and tribulations of chemo. X
Thanks @nicnac17 , that’s really good to hear. I’ve deep dived into people’s side effects on here and other places so many times I’m far too in my head about it & overthinking - just going to have to leave it as what will be will be. I am very stubborn tho so if I can do it I will
When I was on docetaxel (1 full and a couple of interrupted cycles so x3 altogether) it messed with my taste too. Made sweet things taste super nasty and has made me hate even the thought of chicken and cheese (let alone taste, not that I frequently combined them). It would last about a week and I would lose my appetite for anything that wasn’t beef. I recommend, IF you have similar side effects, asking your oncologist to prescribe some protein shakes like fortisip. Hopefully you won’t get that though, just be prepared.
It’s so satisfying when your tastebuds return though. I always gained back the weight I’d lost during that week the week before my next cycle cos I made up for lost time.
Oh my gosh, that taste crazyness sounds annoying and sweet things tasting nasty I hope to god I don’t get that side affect. Noted about fortisip thanks for that. X
@nicnac17 like you I’m starting docetaxil in a weeks time and so nervous. It sounds horrible doesn’t it. I’m seeing onc on Monday so might ask for more info about side effects .
Hope everyone is having a lovely weekend. I wish I could get my Xmas decs up but hubby had to have a shoulder op last week and we can’t get into the loft. We are a right pair - maybe next week .
I’ve seen a few people say fruity and sweet things help so maybe it was just me having issues with that stuff. I’ve been more of a savoury person of late anyway (before diagnosis) so I’m fine with not wanting sweet things.
My oncologist prescribed a load of fortisips from the hospital (3 hour round trip to collect them) and then I asked her to put it on my repeat prescription so I could get them as needed locally and my blimmin GP surgery requested ANOTHER batch (without asking if I needed more, I just wanted them to be ready to order as and when I needed them, I had enough) so I’m now drowning in the things. Thank goodness they don’t expire soon.
Now I’m on nab-paclitaxel it doesn’t mess with my tastebuds so much, perhaps I’ll need them after my surgery though in January.
I’m not bothering with Christmas decs this year, certainly not a tree anyway. Had to banish my cat to downstairs cos her anxiety and stress about me being sick was making her poo everywhere (had her for nearly 7 years and she’d never done that) so I’ve given her free run of downstairs as I feel so guilty (she’s desperate to be with me upstairs) so she’s unattended in the living room, I’m not adding a tree to the mix (previous years she’s been very tempted to climb the tree I’ve put up), I’d probably find it knocked over if I did. My parents are going to put decs and a tree up and I’m having Christmas with them anyway.
I don’t have the strength to put all that stuff up and then take it down again, I get out of breath just going up and down the stairs.
Who do you see for assessment before each cycle of chemo? That’s who I’d be asking. I see a consultant the day before each cycle and she asks about side effects from the previous cycle and issues a prescription for anything I might need. For example when I mentioned having heartburn she gave me omeprazole and when I mentioned the red flushing she gave me antihistamines etc. Is the phone number you have really only for emergencies? The number I have is a 24 HR helpline but it’s not just for emergencies, it’s for any issues at all. I wouldn’t ring out of hours if it wasn’t urgent, but 9-5 I’d ring them with any queries at all and they triage the call and decide who I need to speak to and what needs done. I’ve found my eyes very watery and wondered if I’ve lost some eyelashes, but it’s not been bad enough to mention to the Dr so I’m not sure what they would advise. Hope you get something sorted soon.
@pod123 I have bloods taken & PICC dressing change the Monday before my chemo on a Tuesday, also with an HCA. I have always been asking to see the ANP on duty about something every single cycle…one is really nice, one is not (i overheard the HCA asking him to come see me once, he wasn’t happy!) always feel like a nuisance but I will probably continue doing this as
I definitely feel like I should be being “checked over”.
It’s good to know what other ppls experiences are to know I’m not being OTT
I don’t think you’re being OTT at all. It seems odd that you’re not being reviewed before each cycle. In my chemo unit a consultant has to give the go ahead each time, after a face to face assessment which is built in automatically each cycle. I think sometimes they do the reviews by phone, but there’s always a review of some sort by a doctor. Another example of the difference in treatment between different units
I was told to ring up with any issues I have. I can e mail or ring my onc though as I have his number. Last time I saw someone every 3 weeks though face to face.
Hi @lizk I’d really like to know too on the nutrition/movement side. I’m also on zoladex and I don’t know what side effects are from what as I’m on so much else, but I’m putting my hot flushes and menopause symptoms down to the zoladex too. A friend said what I have been calling “chemo brain” is probably actually “menopause brain” thanks to the zoladex - mixing up words, saying things in the wrong order, forgetting really easy everyday words, slow reaction times etc etc. It started suddenly when I started chemo so I know it’s a side effect, but I don’t know what from! Anyway, any nutrition or movement tips are welcome. Have you all heard of the charity Move Against Cancer? They seem to do great work; I follow them on insta.
It seems really shocking to me that you have so little access to an oncologist. Like @pod123 I see either a consultant or a registrar oncologist every three weeks, one or two days before my next dose. I go in with a list of questions and side effects, tell them how the round has been, and they talk me through the side effects. That’s who I take this kind of question to. I can’t access them in between these clinics, but if I’m having trouble with a side effect during the cycle I’ll ring the 24-7 helpline - I don’t think it’s just for emergencies - I think it’s for anything you’re worried about, and sometimes it’s nice just to have someone say “don’t worry, that doesn’t sound serious.” I agree I wouldn’t ring about watery eyes, but I would mention that in my clinic appointment. If you’re not getting seen by someone between your doses of chemo, I would ask about that - like ring the nurse (or your CNS if you have one?) and say that you’d like to see an oncologist regularly, and can that be arranged. It is so rubbish to have to push for this, but I think it’s really unfair if you don’t have regular access to someone. Presumably they are checking your bloods before each dose, so you should be able to at least have a quick conversation with them. Otherwise how do they know how it is going for you?! Anyway, I’d push for that if you don’t already have it (I know it’s super uncomfortable but everyone I know who works for the NHS or has been through similar things has said you really do have to push because far too much falls through the cracks with the NHS being so under-resourced at the moment). Otherwise, if they say no, maybe just do the callback thing like 3 days before your next cycle every time, to ask about your bloods and talk through your side effects! I.e. make your own regular appointment (ha!).
EDITED TO ADD: Oh sorry I just saw your response on this. Oh my gosh you are SO not being OTT - you totally deserve to have your questions answered and I think it’s really normal in other places - so sorry you are having to ask for it every time!
