A very warm welcome to this forum. 🤗
I'm so sorry to hear of your diagnosis especially with being so young !
I've not started my T yet , it's due this friday ( dependingnon blood test results )
I think theres alot of posts and comments on other forums about how tough T is but my onco said it's just different and people who struggle on EC tend to do ok on T . Heres hoping. A lady I'm speaking with on whatsapp seems to struggle for about a week , with tiredness, nausea , nosebleeds and diahorea and a sore nose . She classes her SE as minimal so I'm hoping mine are too. I've got some evonail from amazon which protect the nails during chemo, must admit with ec I haven't used it but I will with the T .
Stay well lovely 😘
My name is Nicole and I’m 25. I was diagnosed in December and had a lumpectomy and lymph node clearance, luckily lymph nodes and margins were clear! Unfortunately due to my age chemotherapy was highly recommended. It’s been a stressful and emotional rollercoaster even before chemo started as I needed to freeze my eggs as I don’t have any children.
I started chemo EC-T on 11th March, up to now I’ve had three EC which I struggled with sickness and fatigue which seemed to fade after a week or so, thankfully! I started on the cold cap which I thought was going great till about three days before another session when my hair pretty much all fell out on top of my head. I gave up with the cold cap due to the hair loss and the fact I didn’t want to spend all that time in the unit with the covid situation!
Tomorrow I start my first of three sessions of T. I am fairly worried, like I was at the start of EC because of the unknown with the dreaded side effects! But as my oncologist likes to say I’m going to ‘just hang in there.’
My chemo nurse said to paint my nails a dark colour and to have Imodium to hand, but any other tips and tricks for side effects is very much appreciated!
Hope you’re all well and hanging in there!
thank you.Yes it’s less than ideal.Just hope it gets sorted Wednesday but it’s not on being messed about for sure.Im still in bed but eating a bit so hope to get up tomo. Usual exhaustion plus filgrastim aches -joy!
glad you feeeling normal enjoy everything when we can I say.
hope everyone else ok too 🌸💓
Oh jowels ,
I'm so sorry your being messed around. Having breast cancer is bad enough without not having good communication from your oncologist. It's a total mind f@@@ .
I really feel for you, it's so not good for you mentally to keep having the goal posts moved.
Stay strong lady and I hope you manage better this cycle.
Hi to everyone else going through the misery of side effects. I'm feeling quite normal this week, however I'm mentally preparing for a bad time on the docetaxel. But forever hopeful I breeze it at the same time. 🤞
Sending virtual 🤗 to everyone
Shefgirl thank you lovely.
its complete crap 💩 you are right.I hate to say that I’ve been so let down but that’s what has happened. It really saddens me.
im still in bed but managing some ready brek.I will do some research and look for the evidence relating to 4 cycles vs 6 cycles in terms of recurrence. I hate the idea of having more cycles after what I have already had but also I don’t want the cancer to return because I didn’t have 6.The whole nightmare just is dragging on and on.
how are you doing on the docetaxol ?
sending hugs 🌸🌻
the poor communication has been very poor from day one really.It has been a lot of fighting from my end and I’m so tired of it all.
you are right though makes it is so tough.
reallg tougher than it need be.The worst is that they know how much I suffer after each cycle 😫
hope to get some answers on Wednesday and will be explaining how let down I have been.
hope you getting on ok x
Oh Jowels... so sorry to read this. What a load of crap!
Really sorry that you are being messed around like this. Hope you get some answers soon.
Rest up now and take good care of yourself xx
Big hugs Jowels...that sounds awful for you and not knowing which is the last one makes it even tougher...
I really hope things ease for you as soon as possible. That’s really miserable for you.
take care...gem x
Thanks lovelies for your well wishes
Sheffgirl -I wish there was a bell ☹️The specialist nurse who works with my consultant told me I may still have to have 2 more-so frustrated and pissed off as no one ones what is happening.
all geared up for last one to then have it and walk out and know it may not be.
nothing discussed with me is driving me insane.My Oncologist is ringing me Wednesday so will have to see them.
as usual I had to fight yesterday and Theo promised me dose reduction then said no one had sorted it .Eventually they reduced this by 10 % to see if I can suffer less.
im still in bed as usual but less retching thank god.Still very weak and nauseous but least no retching.
so fed up with it all especially when you have your head together for the last one.
hope you are all getting on ok
cant wait to be able to get up in a couple of days maybe
sending hugs 🌸🌻
Thinking of you today Jowels.
Hope it is your last one? Did you have a bell to ring on the ward?
I have been gardening and eating ice cream so for all those having docetaxol it really does get better but be prepared that it might take longer to recover from than FEC - although I appreciate that we are all different and I managed FEC reasonably ok.
Hope you are all seeing some of the lovely sunshine today xx
Does anyone know the name of the cap to protect very thin hair/bald patches to wear under the cold cap at all?
ah thanks...I’ve never used Imodium but might get some in.
I’m still only bathing with my arm out of the bath so hopefully that’ll be ok...as a kid who had nosebleeds not blowing is great advice 🤗
I hope everyone is ok and the sun has come out for you all 🤗
The side effects the other lady has had , have been nosebleeds but was told not to have a hot shower for 3 days and not to blow her nose. These seem to of stopped for her now. Also diahorrea which asnt been pleasant and stomach aches. Mixed with tiredness and low energy . And a few taste buds changes but not many. She says shes found it ok. She hasn't had all of these at the same time. Shes now had 3 sessions of T .
I suppose with all chemo you have to see how you are and do things around that. I'm hoping I have minimal like the above. Hope this helps everyone who will be having T at some point.
so sorry you have had a rough time.Hope you pick up soon.Good for you treating yourself we all need treats.
hope your sleep continues to be better too
I take some tablets (my oncologist approved them) called Dequadin...round one I got an awful sore throat but round two I managed to keep on top of it and round three I’ve not had one...as a teacher I used to get tonsillitis whenever I was run down...these are something I learnt in the past help me so much (and they may help you too?) xx
thank you for your good luck message for today.I hope it goes ok as apparently yet again there had been probs with my prescription-every time I go there is a carry on which just adds to my anxiety.Hope your T chemo goes ok too and you manage side effects ok too.
have a lovely time with your best friend too 💜🌸🌻
I’m so sorry I haven’t been on. Round three EC totally messed up my sleep and gave me weird jet lag side effects. Also, I had this weird reaction to anything cancer related...the word, the idea of my PICC flush appointment...sponsorship ads that were coming up on my Facebook. It all properly (and physically) turned my stomach so I had to just shut down a bit and trust it would pass.
also the smell of everything has been awful...my oncologist prescribed the Zarzio injections (immune boosters) for bloody 7 days after each chemo round and I think they’ve added to my stress (hate injections), the smell issue (with the chemical cleaning wipes) and the not sleeping. But finally the last two nights I have bloody slept! I could cry I’m so happy 🙏
EC is now finished thank God...three rounds of T to go which I’m dreading but then they are all strong chemicals aren’t they?
I keep trying to be grateful for the fact that we have access to them...and for free...some days that works...some days not...
Someone mentioned hair loss...humm mine is very, very thin with some slight bald patches on top...does anyone know what I should buy to protect my head under the cold cap next time please?
I know that I’m Plymouth they are condensing our 18 radio sessions into one week- apparently the evidence suggests that it’s just as effective and side effects no worse do that will be after 3 more rounds.
i have to say I have into shopping online two days ago...a treat for getting through the crap so have two dresses coming and a pair of trainers...something to wear out in the garden 🤣👏
take care all of you 🤗🤗🤗
Jowels hope today goes well and 🤞 it is your final session. I know you'll have to endure side effects but there is light at the end 😘
How fab that you saw your son yesterday, hope you had a lovely time.
I'm doing ok this round with side effects, I'm sure this will change next week as i start the dreaded T. Although my friend from macmillian site has managed with her side effects of T amazingly. Hoping I'm as lucky.
Anyone having treatment this week, I hope it goes well and to everyone suffering side effects 🤞 they are short lived.
The weather seems to of changed again today , it seems warmer here in sunny sheffield. Hope it stays this way for tomorrow as I have plans on having a garden meeting with my best friend who I've not seen for 3 months. Obviously I shall be social distancing.
Have a good day everyone 🤗😘🔆
so pleased you enjoyed seeing your son.
thanks so much for good luck wishes for tomorrow 😍🌻
Hope you pick up soon
It was so lovely to see my son 😊
I will be thinking of you tomorrow going through your last session 😬
Will have lots of things crossed 🤞 for you.
Sending love and positive vibes. 😘😊🥰🌈
Thank you for your lush message Salsa.
so pleased your son is going a garden visit bet you can’t wait 💓💓
enjoy that 😀
yes you are right my oncotype score was 75 so I am keen to get everything I need.
its so worrying with everything changing all the time.
trying to keep calm today and keep postive despite knowing what awaits tomorrow.
Hope you pick up soon lovely
have a great time with your son 💜🌸xxxxx
Oh I do hope tomorrow is your last one. You must have such mixed emotions about it after all your last experiences. But 💡 at the end of the tunnel. 😀 Just thinking of what you have to endure to finish it ☹️
Sounds really frustrating with the communication with oncology. So I hope you have a clear plan soon. It all seems to be changing. And more info coming in about radiotherapy and herceptin treatment timetable. I remember you saying your oncatype score was high so you want to make sure you get everything you need. It’s all so overwhelming. And so it goes on. Sending hugs 🤗
I am okay. Just need to rest up again today. My son is coming round for a garden visit later so really looking forward to that. 😁
Take care and 🤞for tomorrow.
Stay safe and sending love to all 😘💕🤗
so sorry you feeling so shattered.The changes in sleep can cripple you.Im the same for the first two weeks after chemo.Hope you feel better soon.Hope you can get some answers about Herceptin soon too.
yes my last chemo is tomorrow 😀
mind I’ve had such a chew on getting communication from the team again!
drives me mad -apparently my oncologist ringing next week.Im hoping she doesn’t say she has decided more chemo,not sure I can get my head round that when I think I’m done.Given the awful time I’ve had and the time back and forward to hospital surely not.
no clue about my endocrine treatment and radiotherapy.Plan had been 20 sessions but who honestly knows!
hope everyone picks up soon,it really is the pits.dreading the next two weeks.Took me a week to get up last one then into hospital.
sending love and hugs to you all
one step closer lovelies 💕
Sorry to hear home schooling is also something else to worry about. I hope you finish your cycle with the minimum of side effects. One can but hope. And then in for what may be a shorter course of radiotherapy. I guess more things to discuss with your team.
Hope you get to enjoy some time in the garden. When is your next session. Is it guys week.
Take care and sending love 💕 😘🥰
So sorry you’ve been feeling so rough. And for so long. I do hope you pick up soon. Sounds awful.
I miss the walks too. But I’ve had a constant sore throat and having missed two weeks of treatment due to low bloods I had sort of confined myself to physio exercises and the garden before I was advised not to leave the premises. As you say thank goodness for the garden.
Take care and stay safe. 😘 💕🥰
So sorry to hear you’ve been suffering so much. Sounds truly dreadful. And on top of already going thru the mill with FEC.
I’ve had rounds of herceptin now and I find it hard to distinguish any of the side effects from Paclitaxel. I am doing the night shift again as my sleep patterns are completely out of the window. I spend so much time feeling hot and flushed for several days I can’t sleep. My skin is awful and the nosebleeds have started. And although I am fatigued I’m not bed bound. I lie in the sofa for much of the day but so many of you sound like you’ve had a much tougher time.
Really interesting to hear that 6 months of herceptin May be as effective. I’m going to look that up and talk with my oncologist as I’ve already been to A&E once with chest pains. Turned out to be fine but I was worried.
So sorry so many of you are having to struggle with home schooling on top of this. Such a tough time to be coping with that when your support network is also cut. I would have really struggled with that as I know I’m just so tired and my brain is fogged. I keep putting things in the wrong place. Doh.
Thinking of you. Take care and I do hope you feel better soon. Sending love. 😘 💕🥰
sorry to hear you been suffering.Im still on FEC well ec now but I’ve so far pretty much every side effect going,with two stays in hospital.
hope you pick up soon and can eat whatever you can.We are all with you 💓x
Wildspur sorry to hear you suffering too,I’m the exact same.Taking longer each cycle to pull myself back round.
home schooling is so tough as well,although does bring me some much needed smiles ♥️💓x
sorry to hear of your suffering those side effects and hope you improve from your cold so can keep on your schedule.
sendinh hugs x
It’s a relief to know you haven’t had any side effects with the herceptin. And yes doectaxel is the pits. I hope your treatment manages to go ahead as planned. It’s good to know that by day 13 I should hopefully be feeling like my old self again.
Wildspur, thanks so much for sharing the article about radiotherapy. That’s put my mind at rest a bit about the effectiveness of one week as opposed to 3 weeks.
My home schooling confession is it’s not going to plan. My hubby is working from home as well as trying to continue working on our house extension and he’s doing the home schooling while I’m not well. But on a positive note my 5 year old daughter still has a smile on her face and enjoys spending time with daddy despite seeing me looking so unwell.
love and hugs to all
Interesting read. Let’s hope so eh!
Lovely to hear from you tmmorris. Will reply fully to everyone. I have been off the radar too for a while with effects of chemo and homeschooling (which just isn’t happening!)
So sorry to hear that you are having such a rough time.
I'm totally with you regarding the docetaxol! It really is tough.
I am now 13 days since my first docetaxol treatment and only now has my stomach settled, my taste buds come back and I feel human again.
I too had the strange mouth, and aches and pains. The latest issue is a daily nosebleed!
I am due round 2 next week although I have a cold at the moment - so will see how my bloods come back. I am so pleased to have only 2 more of these to contend with.
I had my first Herceptin injection the day before the docetaxol. This was so they could monitor if I had any adverse reaction. All absolutely fine - although a bit of a sting when they inject you but no side effects as such.
Interesting to read what you were saying about them reducing the no of injections and also radiotherapy. Nothing has been said to me yet - but no doubt they will be make decisions against the general cv19 situation.
I am missing being able to go out for a walk but generally feel very grateful to have a garden to sit in and a family who are happy to stay in and shield me.
I really hope that you turn a corner soon.
Thinking of everyone. Stay safe and well xx
Sorry I haven’t been around for a while. It’s surprising how fast time flies when you’re trying to cope with side effects of chemo and home schooling.
I’ve just had my 4th round of chemo and my drugs changed from FEC to docetaxel. So just as I’ve learnt to cope/manage painful constipation, PICC line dressing allergic reactions, nausea, dry skin, sore mouth and lack of taste docetaxel comes along and it’s a whole different ballgame. This is the worst so far although my oncologist nurse did tell me that the 4th cycle would be bad because I’d have late effects from FEC and early effects from docetaxel. I didn’t realise how bad. I didn’t get the nausea this time but by day 3 I was under the duvet feeling completely wiped out, aching bones particularly my legs and back, White furry tongue, sore mouth and a horrible taste in my mouth constantly. My mouth is slowly getting back to normal although I still have the constant horrible taste and am still under the duvet feeling completely wiped out.
I’m due to start herceptin injections on my next cycle but I’m going to talk this over in my next telephone check up with the oncologist nurse. I really don’t think I’ll cope if I have more side effects on top of what I’ve experienced this time. Hubby agrees that this is the worst ever and we’ve even started sleeping apart while I’m so bad.
I’ve been advised that there will be changes to my treatment plan as a result of Covid some of which will become best practice and others just to try and keep me safe during the pandemic. I’ve been told that clinical trials showed there wasn’t much difference or benefit between herceptin injections for 6 months or 12 months so my original 12 month plan is changing to 6 months. It also causes less heart problems over 6 months.
I’ll be referred to the radiotherapy team once chemo finishes but at present it looks as if I’ll just have 1 week of radiotherapy as opposed to the original 3 weeks. Not sure what the impact will be on overall effectiveness but I’ll be able to ask that once I meet the radiotherapy team.
Has anyone else had 2 cycles of docetaxel so far? I’d be interested to see how side effects compared between them. Has anyone had herceptin injections yet and if so how did you find the side effects?
I’ve tried to catch up on the various threads but might have missed some. I’ve added a few new items to my shopping list to see if they help too (malt loaf and ginger cake).
Sorry you’ve also got gallstones to contend with on top of chemo Witchhazel.
Love and hugs to all
Oh Witchhazel you poor thing. Fancy having to manage a gallstone and chemo. That sounds really tricky. I do hope things go okay for you. I’ve been warned they are incredibly painful 😖
Its lovely to hear from you. And half way thru. Yay 😁. Brilliant.
I just hope the docetaxol is kind on you. Take care and take it easy.
I too am eating way too many bread based products. Strange how your taste changes.
I think the weather is going to improve for this weekend. So sorry e just have to get thru this week and then you can enjoy the garden again. Sending love 💕 to all. 😘
Happy Sunday everyone.. gosh it's turned cold!
Been quiet for a while but have been reading... I switch from FEC to Docetaxol for my next session so seeing some of the experiences here is making me anxious! But I'm halfway through chemo, trying to focus on that. It's gone surprisingly fast, even though I've been home doing not much the whole time. I still have some hair, don't have clippers so it's a wispy shoulder length - I have cut about 4 inches off, in small steps. I definitely don't have a nice headshape! But at least lockdown means I'm not worrying about wigs and hats to go out in.
Had fun and games after my second session, ended up in A&E because I'd been running a fever. The fever had gone by the time I got in but because I'd also been having what I thought was bad trapped wind, and the blood tests flagged my liver function, I was given the full shebang... So now I can add a bloody gallstone to what's going on!
I've been told I have a high pain threshold but a gallstone.. possibly the worst pain I've ever experienced. So now I have to try and manage that bbecause surgery is obviously completely off the table at the moment. Also need to work out what triggered it as the preceeding 48 hours I mainly ate crumpets and a pizza!
So sorry to hear it’s been so bad on docetaxol. Back pain and fatigue sounds horrendous. I do hope you pick up over this weekend. Take care. Do you have any treats planned?
It is looking like it’s going to be another lovely day so I hope you get out into the garden. Been awake for a while this morning. Sleep still a bit messed up.
Sending love and positive vibes to all of you out there. 😘 😎
sorry you feeling so rubbish.Hope you can pick up over the weekend and enjoy the sun ☀️ and any treats
sending hugs ♥️🌸
Thanks Chuck for sharing that info on Docetaxol.
I had chronic back pain on day 6 of treatment and put it down to the injections but now wondering if exacerbated by the docetaxol. It got that bad I phoned the chemo line to see if I could have a break ... but they want me to continue with injections and up pain killers- which I have done.
I have found this round very difficult as it has messed with my stomach and mouth and left me fatigued. Really hope I will start to pick up over the weekend.
On a positive, like Jowels my hair is growing back since last FEC . It’s grey and curly but hey ... it’s hair!!
well done on braving the shave 🪒 so pleased you could have a laugh through it is as it’s so tough.Its wierd what you get used to.i have lots of headwear but to be honest I have my head bare a lot and am just so used to it now.Something to hold onto though -my hair is growing between cycles 😀hope this means my hair will grow back fast after treatment.
hope the other side effects are manageable for you 🌺
enjoy the sun ☀️ hugs x
Julie. So lovely 😊 to hear from you. Thanks for asking, I am feeling so much better than last week. Phew. A few strange things tho. Every time I blow my nose it bleeds. I was warned but it still catches me out.
Sowed some peas and marigolds yesterday. So lovely in the garden.
So you had to brave the shave 💩 Sorry for you but you are being amazingly positive. I’m so glad you had a laugh with your son. Good idea to do your face first. I have checked out how to wear head scarves as I am developing a bald patch on the top of my head. It’s not been too bad so far but if it continues I’m going to start looking like a monk.
Anyway. Well done you 👏👏👏👏👏
You Rick that wacky wig and enjoy the sun. Stay safe and take care. 😘💕🌈😎
These cycles are tough aren’t they, I dread to think what it would be like if we were all still going at full pace before we were all told to stay at home and chill out lol 😂🤣
As for Doc whatever it’s called, mmmmmmm😏 I think the only way to look at it is as a different set of side effects rather than the worst is possibly yet to come. I was given extra steroids 40mg to take two days before the treatment and extra heartburn tablets to compensate. If you think back to the first cycle we had to deal with those effects which were a shock but we adapt. Only thing is as soon as we get the hang of it they change it 🤪😂🤣😂🤣
My nurse, who is incredible and has also been through this, told me you get sore feet so either treat yourself to a foot spa for home or some cooling foot balm. I love those plastic foot boots, they are hilarious even my husband loves them!!
She also explained pains in the back similar to period pains but can get uncomfortable and at the top of you legs, similar to the effects of the filiwhatsit injections (sorry can never remember the names of them, to be honest I never want to see them again after this lol😂)
So for that she advised paracetamol after your temp check and then heat packs of hot water bottles. I found the heat packs they use in hospital to warm my veins up on Amazon in a pack of 3 for about £7. They are amazing you can freeze them or microwave them, wrap them in a pillow case and your good to go. You can mould them then on legs or back where you need them.
Mine treatment is on the 27th so we can do this together mate. ❤️❤️❤️❤️❤️😘
Hi you bunch of wonderful ladies ,
Sorry I've not been on but the 3rd ec last week really knocked me for 6. 🎳
Jowels , you're almost there for the final chemo !! 🥳 I know we all struggle but I'm amazed how fast these 3 weekly cycles pass. I'm with you on the white carb diet , I'm turning into a barrel.
Salsa140 , hi lovely how you doing after your a & e visit last week ? Hope the chest Infection as eased. Yeah I'm now half way through. Yay !! 😄
Shefgirl , hope youre feeling ok a week on from the docetaxel , I've heard this one is terrible from others but my onco said it was just different and some people cope better ....hmm I think she was fibbing 🤔 you are almost there number 5 next. 👍
Chuck , sorry to hear you've been struggling but glad you are back and feeling positive. Your post cheered me up, so many positive vibes. From my understanding you'll be starting the D at a similar time to myself. I must admit I'm nervous too.
To everyone else I've not mention you are all doing amazing.
Well yesterday I decided to brave the shave 💩 thought theyd be a mass of tears but due to my 22 year old son helping me shave I had such a laugh. I looked like Ken bloody dodd at one point with the mad sticky out hair!! I was recommended to put my face on before hand. Which really helped. As I dont think I looked too bad after i was finished. It's a bit nippy round the back of the head , but I've plenty of bandanas and my wacky wig to wear to keep it warm.
Anyway I've rattled on far to long. Hope each and everyone of you as a fabulous day , enjoy the sun. Stay safe xx