I’m so sorry that you’ve all been having a bad time. I’m just bumbling along with my EC every 3 weeks and touch wood it’s all still going really smoothly for me.
Lots of love and hugs ladies I hope they manage to get you sorted out as it sounds like you’ve all had a rough time.
Hi Butler10, really sorry to hear your news. What date is your 60th, we can all have a drink to you at home, I am sure your team will come up with an answer, we are all so close to the finish line, my team have reduced my Docetaxil from 120ml to 100ml as my upset tum was much worse last time, and I hadn't realised that I will need a p & t injection every 3 weeks for the next year!!!!!!! but it is for my benefit, life must go on.
Take care, love aNN
Good morning all ,
feeling much better now the antibiotics and steroids have taken hold Thankyou !
my oncologist is going to meet up with the chemo team and discus what they can give me for my final 2 treatments as the Docetaxel doesn’t agree with me .
i hope you all are coping and having a good week xx
Hi jo 77
These taxil drugs seem to be giving some of us nasty side effects. I had chemo last Thursday then on Saturday I started getting these pains in legs and that was before the injections. Then Sunday pain got worse was up all night then hv been in bed all day since Monday which I hv never done before dragged my self out yesterday as had picc clinic. Cancer nurse has been phoning me to see how iv been but as got no temp they didnt want me going up to hospital. They hv now got me a face to face appointment next week with oncology doc. As I'm not going through this again. Paxitacil gave me reaction straight away and this Abraxane one is obviously fighting my body to.. so hopefully they can find me somethink else as only got 2 more to go. And one of those is on my 60th birthday. Lol wont forget this one. Sorry for going on. Hope you hv a good day. And feel better soon to.xx
hope everyone is feeling okay today.
Jo77 I too hope you are over the nasty se and feel better now.
Weather not too nice here, but hopefully will pick up for the weekend.
Enjoy your day all!
Hi you are still in Nadar so temp could be sign of infection not just reaction, please just keep checking with your unit, it’s not being a fuss pot, it’s being vigilant and you doing what you can to get safely through 👍💕💕✨✨Shi xx
yes I have it every 3 weeks . Docetaxel was on 14th , started reacting worse on 18th with slight itch then day by day rash and bumps appeared and got worse ,then temperature started on 20th. They said any reaction can start within a week after treatment .i am keeping a log of it and hopefully they will change my last 2 treatments to something else .... I’m not going through this again !
I hope you’re ok and have a good week x
I don’t have aches and pains as such just feel really uncomfortable. Took me from 4:30am Tuesday morning until 9 Wednesday night to get to sleep because I just felt really uncomfortable like I was over tired.
I have had some weird spots on Doxetaxel though. Like gnat bites in between my legs. They felt like sore when I was walking and when I asked my hubby to look because I can no longer see past my chemo belly he said it looked like little blister that have burst. I put vasaline on them and slept with no pjs on and this seemed to work and dried them out.
Got to watch my eldest play football in a friendly this morning was great to be in the fresh air. Have to say I loved it. Although I don’t know about anyone else but I am sick of hearing people moaning. The amount of people that moan about having to get up on a Sunday morning because they are tired I thought I find it hard to get up each day as I’m tired but I do because I don’t want to miss out on anything. My Son is a goal keeper and gets a lot of criticism from other parents if he lets shots in. He was told to wake up today. I lost it and and said well actually he is only 9 has lot played for 6 months and sleeps by the side of my bed each night as he is so worried that something might happen to me! I also realise today for the first time how lucky I am to have found the lump and still be here to watch him play football.
Sorry ladies rant over.
Hope you are all having a nice day
I got put on Abraxane last Thursday with Carboplatin as reacted on 2nd round on paxitacil. Not had no sickness but got terribly hurt burn Friday night and last night got all the pains in all my joints and pain in places I didnt think. Alternating between heat pads and ice blocks at moment plus paracetamol. Any body else had this. This is my 5th chemo round just 2 more to go. Then op and radiotherapy. So nearly there. Have a nice Sunday ladies. X
Jo, do keep ringing your team and updating them keep record of your temperature too, what day are you on in your cycle? Are you having every 3 weeks? 💕💕✨✨Shi xx
Thankyou ladies .
Seemed to feel more itchy / sore and temperature not decreasing so rang the hospital again .... was told to get myself to a&e
ASAP. Their first thought was neutropenic sepsis( which it isn’t ) so was put on an anti biotic drip , blood test, urine test , X-ray .
It is an allergic reaction also an infection but they are unsure what ! Discharged at 11pm with more steroids / antibiotics/ etc
the itching / stinging is driving me insane ...never felt. Nothing like it .. nothing is helping yet .
hope you all have better luck and enjoy your weekends !! Xx
Hi sorry you’ve had reaction to t, it can happen, it was my 2nd t when it happened to me. I went back on fec for my 6th and final chemo and I know others have switched to abraxane when the t didn’t suit them. Keep 💪 this is just for now and once chemo is done you will ping back, just pace yourself and you will 💕💕✨✨Shi xx
Oh Jo, that sounds miserable. I’m sorry you’re having such a rotten week. I hope it comes under control and that the oncology team can do some things to improve the reactions (assume they will want to continue another 2 rounds?)
Take good care,
Really sorry Jo77, you seem to have all the side effects for the rest of us, hope it is all under control soon and that your team plan very, very carefully for your next treatment. love aNN
Oh Jo77 that sound awful, you poor thing. I hope they are able to change things to make it better for you.
Gentle hugs. x
I hope everyone else is managing ok. I’m due my 4th EC treatment on Tuesday.
We are getting through it ladies and we’ll be out the other side of chemo soon.
Have a good weekend.
Hi Anna , and all you lovely ladies .
Unfortunately since my update, the Docetaxel has now shown its effects on me . I had 8 steroids the day before Chemo , on the day and decreasing amounts over the next 4 days . First day without the steroids And I started itching my neck ... then chest ... then shoulders . Over 24 hours it was as if I had severe prickly heat and sunburn.... also oral thrush ! Seems I have an allergic reaction to the Docetaxel which can start anytime over 7 days of infusion ! Now on antibiotic mouth drops , antihistamines, steroid cream . Had a temperature last night but kept drinking iced water and stripped off . Oh and a mouth full of ulcers this morning 😖
The hospital is ringing me today to see how I am.
I thought I had got away with things on Docetaxel but nope !
The Fec made me feel very nauseated which lasted a week , and was pleased after the first Docetaxel didn’t make me feel like that , however .... I’m not sure which treatment is worse now !
I get a phone call from olncologist a week before each chemo treatment, so maybe they will change something for next time ?
I hope you all are having a better week than I am xx
Sorry forgot to say, although my eyebrows and lashes have thinned they are still there. Eyebrows are the best I have ever had them and my husbands says he seems to think my hair is growing back on Docetaxel at the back in my crown xxx
Hi ladies, hope all is as well as can be. Wanted to give a quick update. As I said I had first round of Docetaxel on last Thursday , went smoothly with minimal side effects until Tuesday morning. My eldest felt poorly so woke me up at 4:30am to ask me to lie with him. I went and lay with him and do you think I could get back to sleep? I started to get the most terrible heart burn so took a lansoprazole at 5:30 and continue to read surviving triple negative breast cancer until 6:30. The heart burn would not ease and I found it better to sit up so went and sat in the recliner downstairs. I then noticed that my mouth felt really dry and I had a **bleep**e film on my tongue, quick call to the hotline and antibiotics were prescribed! I found it hard to rest all day. I was not in pain or achy but could not get comfy. It was like I was looking in from outside my body. No temp though so all good.
I did not sleep again at all Tuesday night, had a little doze for 10 minutes yesterday afternoon and finally managed to get to sleep at 10 last night. Slept right through til 7:15 this morning.
I have to say that I think Docetaxel is easier in terms of you don’t have the sickness or nausea feeling, however it completely takes your taste buds. It also makes me feel so exhausted like someone is dragging me down, however it is not painful. Strange really like when you have gone past being tired and are frustrated because you can’t seem to do anything to settle and rest.
I had the steriods to take 4 times a day for 3 days starting the day before chemo. They are great and have stopped me from feeling sick. I know I have had heart burn but think that is more to do with eating spicer food as I just can’t taste anything.
Hope this helps as it really is not too bad!
Have a lovely day all in the sunshine 🌞 lots of love 💕 Tara xxx
Hi Anna & Jo, I hope this helps, I have had two Docetaxel infusions with two more to come, I take steroids the day before for 3 days and so far they have worked, I do feel tired, still have some eyebrows and eye lashes, have not had any problem with sickness, my food tastes funny, my stomach is non too keen, I get a very upset stomach and take "Loperamide" otherwise known as "Imodium" which works a treat and is much cheaper to buy. I don't find it as toxic as EC, I seem to have avoided the muscle aches thank goodness and I am lucky, I see a oncologist between every infusion. It could be worse and from the sounds of it possibly better than FEC? My next infusion is in a weeks time.
Keep your chin up girls, will be thinking of you both.
Thanks for that Polybalm recommendation, Cubot! Will look it up in readiness.
Does Docetaxel have any further impact on eyelashes /eyebrows? My lower lashes are pretty much gone but holding on to upper lashes and eyebrows are thinner but still there. Suppose the three cycles of Docetaxel may affect what’s left.
I’m so interested to hear your feedback from the Docetaxel as I am slightly dreading the change of drugs next cycle, after 3xFEC. I’m glad you’ve no heavy side effects yet and it’s good going that you’ve got from Fri to Tuesday without being completely miserable. Because the doctors have given me extra steroids to start 24 hours before the Docetaxel (round 4 for me is Sept 2nd) I reckon they expect your body takes a beating and that makes me a little nervous!
Like you mentioned, I’ve found the nausea/vomiting during FEC really wearing. How long did you find the symptoms lasted? It feels like all my symptoms are concentrated in the stomach. In the first week I feel wretched and just drag myself through the week, spending lots of time in bed. I bet I sound a complete wimp, it does go against the grain. Even a variety of anti nausea meds don't seem to hit the spot although they do help control the vomiting. Usually for me it turns a point after a week and it’s more bearable but still nausea present and I can’t eat my normal diet - chemo in my body just hates fruit and veg, it seems - which is a shame since I was going great guns with lots of plant based meals after surgery!
Did you see a doctor before you switched to Docetaxel, Jo? My hospital has been doing phone reviews on the morning of treatment day, but they want to see me face to face before the next one. Consent forms I reckon 😉
Hi ladies , I hope things are going well for you all . I hope things get easier Tara for you , how awful !
I had my first T...Docetaxel on Friday , no awful effects as yet apart from Very hot flushes the first 24 hours and a furry /dry tongue, which I use Biotene mouth wash and Tongue gel, and a slight loss of taste . No nausea which is great as I felt dreadful after FEC !
i was told that 70-80% get Quite lethargic And bones aches from Docetaxel , fingers crossed it’s not happened to me yet ! X
Btw, so none of you worry, abscesses are just something that I've been lucky enough to have been prone to over the years when stressed. It's not a chemo thing, definitely A level related. Good luck if any of you have got kids with GCSE results this week.
Your symptoms from your latest chemo sound not nice, to say the least. I'm glad it's clearing up. Are you on 2 week cycles? I start 12 weekly cycles of paclitaxel on 7th September. The weekly cycle are meant to be more tolerable than 2 weekly but I'm worried it's going to be fairly relentless. At least with the 3 week EC cycles have felt like I've had 2 weeks off each time. Am just coming out of days 4-8 of my last EC. EC combined with my eldest's A level results produced the most enormous abscess on my bottom so I've also been on antibiotics and Glow Up. I finished series 2 on Sunday so will be in desperate need of TV recommendations for 7th September. Hopefully the Autumn TV schedule will have started then and hopefully enough new stuff was shot for it pre lockdown. I hope everyone else is doing well. Tabs
Oral thrush quite common during chemo 🙄 glad you got antibiotics, fluconzole is also one they prescribe. Ask for it in your goody bag so at first signs of it you are armed and prepared if it happens again 💕💕✨✨Shi xx
Hi Tara hope you're doing OK and Michelle, cross fingers for tomorrow!
So I'm 10 days into docetaxel (with pertuzumab and trastuzumab) now. I've found it quite different to FEC in that I am so, so tired and unlike with FEC that doesn't seem to be getting better as the days pass. Been quite difficult to adjust but i've worked out that any activity bursts needs to be followed by a rest (in my case lying on my bed watching the second season of Glow Up on Netflix!) and that's helped.
Also had my first bout of oral thrush (mmm lovely). It wasn't what I expected - I thought I'd burnt my tongue as I had several inflamed tastebuds which at first looked like normal inflamed tastebuds which I've occasionally had in the past. Then they grew and looked pus filled (so delightful) and the rest of my tongue hurt A LOT. Good news is I called the hospital and they gave me some Nystatin which has been very effective so two days after the worst symptoms my tongue is almost back to normal. Thought I'd share as my oral thrush looked nothing like the horrific cases you see when you google so you might not realise what you've got, though hopefully you won't get it!
Thank you for your kind words!
Bloods tomorrow and oncologist, I’m just hoping everything is ok for the go ahead!!
I must remember to take the steroids tomorrow 😀
Hi Michelle, will be thinking of you, it makes for a very long day and a half, I spent my time watching Judge Judy and eating, hope it goes well for you. love aNN
Hi ladies, I got back from my treatment about 3. No reactions which was great. Worrying fir nothing again! I appreciate all of your advice, it really helped.
I felt sick when walking out of the hospital, ran to t try he loo and did a big burp and it went off as quick as it came on thankfully no sick. I felt really tired when I got home do had a couple of hours sleep. Mum had to cone around and cook for Adam and the boys and showers the kids , because Adan fell down the ladders cleaning windows yesterday and damaged the ligaments in his foot. He has a boot and is on crutches. It’s a nightmare lol. Mum is sleeping over tomorrow to help out, bless her 💓
I felt really hungry when I woke up do had some dinner and are now bracing myself for the side effects to come.
Hope everyone is doing okay.
Thanks for the support.
Take care all
lots of love 💕 Tara xxx
I hope every one is as well as could be.
Tara i hope your treatment has gone well, ive been sending positive thoughts your way today!!!
I have Docetaxel next Wednesday and Ttastuzumab, Pertuzumab the following day. Im also dreading the change in treatment from EC.
Thinking of you today Tara. I’m sure you’ll be fine.
Its a bit cooler here today which is nice. I’ve not been managing to walk as much because the heat was just too much but hopefully I should manage 3miles today with the dogs.
I had my third EC last week so 3 more to go now. Great to be halfway through but October still seems a long way off!
Love to all xx
Hi girls, Tara and Cubot, thanks for the tip about the nail cream, I will look at that but I am half way through my Docetaxel so not sure if I have left it too late already. Tara, no sickness at all so one less thing to worry about, will be thinking of you. We are all getting close now, keep you heads up girls and if you feel your crown slipping, remember the thousands that have gone before us.
Thanks for the advice Ann, did Docetaxel make you sick? FEC madd me feel really sick but not actually sick. Also do you have the injections to boost white blood cells?
I am such a baby being scared. My mum just said you are nearly there now get a grip! She is right. I have radiotherapy after 3 cycles of T too. Then hopefully an uplift to my good breast.
I woke in the night with terrible cramp in my leg. It feels like I have pulled a muscle now. Don’t think the heat is helping!
Hope everyone is okay today.
Lots of love 💕 Tara xxx
Hello everyone and sorry for long radio silence. I hope everyone is doing well 😊 especially in this heat which is not exactly ideal for coping with chemo flushes etc!
I wanted to let anyone know who's having docetaxel soon that I had my first cycle last Thursday and it went smoothly (I'm on FEC-TPH). I was a bit worried about the potential for allergic reactions but the nurses talked me through it and were very reassuring that whatever happens it's easily treatable there and then with piriton and hydrocortisone. Obviously everyone is different but I know after getting 'used' to FEC I was nervous about docetaxel being worse, so it's a relief that the side effects for me haven't been that bad (no sickness, some constipation, slightly painful stomach, headache, sensitive tongue and throat), in case that's reassuring!
My chemo nurse also told me about Polybalm http://polybalm.com/ which is specifically designed (and tested through clinical trials) for nails while you're having chemo, particularly taxane based chemo like docetaxel. It's designed to stop your nails deteriorating/falling off which is a common side effect and - though I'm quite enjoying having no hair in this weather - I am very keen to keep my nails! I've just bought some (arrived in about 4 working days) and put it on for the first time; if nothing else it smells lovely! I hadn't heard of it from anyone else so wanted to share here in case anyone else wants to give it a go. It's £37 so not cheap but I reckon that's worth it for your finger and toenails!
Thinking of you all 😍 xx
Good luck Cecilia with your last chemo. Iv got 3 more to go. I started paxitacil last week but unfortunately it didnt like me and I had a reaction to it on ward. So they now going to move me bk to 3 weekly chemo and give me a different drug as well as the Carboplatin I was having as well. Hope you get a rest or break before you have to start anh think else. Xxx
Hi Girls, nice to hear your news, well done Cecelia for finishing, you must be the first, I have 2 more infusions then my op then radiotherapy. Tara, will be thinking of you Thursday, it is always worrying changing to something new but the steroids should control any reaction you might have, ps Docetaxel is also known as T, I was advised to take my steriods before 3pm as they could affect you sleeping, lets hope this weather breask soon.
Thank you for the reply. I called the unit and was told to take 4 after my breakfast and take the other 4 with me to have at lunch time. I am so nervous, start making myself ill.
Well done you on getting to the end of your chemo. How many cycles did you have?
I can’t wait to be at the end of mine. Roll on next year I really want a holiday 😝
hope everyone is okay!
Love Tara xxx
The chemo drug I was Prescribe is paclitaxel and the nurse always gives me Steroids on the day just before the chemo treatment starts
I did not have any mouth also I have been using Sensodyne toothpaste and soft toothbrush And when he seems less I was going to get a mouth ulcer I wash my mouth with salted water
hope all is well with everyone
have any of you lovely ladies finished your chemotherapy treatments yet?
and what is the plan for moving forward
my last is tomorrow
My is to continue with Herceptin for at least a year and this will be taking every three weeks as an injection
Thanks for letting me know. I remember now seeing something that mentioned what you have said. Sorry chemo brain is not helping me remember things. Think it is good in some ways, however people that require an answer
to a question right away may struggle with the new process. I don’t mind either way.
Love Tara xxx
ttyler - the default notification settings have been changed on the forum to " daily digest " ,unless you go into my settings, notification settings and tick the box to always be alerted to new posts you will just get a summary .They are trying it to see if it works better as some people were being overwhelmed by notifications .
sorry for the late reply. My phone does not seem to alert me now when someone adds a new post it waits until the end of the day and sends me an update of all posts for that day. Is this the same for everyone else?
Tabs I have corsodyl mouth wash. Not sure I have spelt it correctly. I use it twice a day after brushing. Was not sure if I should do this or if I should wait til I get the ulcers and then use. Don’t really want to get ulcers, especially in my throat which is what my bcn said could happen Horrible side effects.
My dentist has told me to brush twice a day after eating and not to use the mouth wash straight after brushing. He said to use it at different tunes in the day. He also said should I get an infection he will Perscribe an antibiotic mouth wash. Mind you I might see about getting the difflam one. Thanks Shi
Hope everyone Is feeling well. I start my first cycle of Docetaxel on Thursday. I have steriods to take 4 lots twice a day. Can I just ask what time on the day of chemo did everyone take their steroids. Do you take 4 in the Morning before you go and then 4 when you got home?
Enjoy your day everyone!
Much love 💕 Tara xxx
Please use what teams give you for mouth sores or if you have concerns about using it please discuss with them, it’s better than not using and getting an infection during chemo ❤️Please keep safe. Lots of us were given difflam previously and that helped and didn’t cause staining, please keep safe infections can take hold so quick on chemo. 💕💕✨✨Shi xx
What was the mouthwash that you were using? I was prescribed some on Friday as on my last cycle, I had a couple of mouth ulcers that took over a week to clear up using just saltwater or bicarb water gargling and bonjela. I'm not due to pick up the mouthwash until tomorrow when I have the 4th and last round of EC. I was looking at the mouthwash contraindications online but didn't see anything about staining. I may try to hold out from using it and just try more frequent preventative saltwater gargling unless I get multiple or big ulcers. I move on to weekly paclitaxel in September but, hopefully, I think that the side effects aren't meant to be too bad with the weekly dose, though I may get unlucky.
I hope that everyone is well and not struggling with treatment too much.
Glad your second infusion went well. You are right it is very hot. Normally I wouldn’t mind but have to have the fan blasting all the time due to the night Sweats and hot flushes!
I have my first Docetaxel on Thursday. The anxieties have started. I get so scared 😦 it’s the thought of the unknown. Only 3 more to go now though.
My teeth have become stained from the mouth wash I have been using. I’m gutted more than loosing my hair as I have always looked after my teeth and until now have needed now. Dentist has given me some high flouride tooth paste and has said he will try and remove the stains after chemo. What a nightmare!
Hope everyone else is feeling okay?
Enjoy the weather if you feel up to it.
Lots of love 💕 Tara xx
Hi Girls, how are you all doing? I'v just had my 2nd P, H & T which went ok, no alergic reaction thank goodness. Hope to hear how you all are, bit hot for sleeping, lets hope for a jolly good thnunder storm soon.
yes it is very hot. I’m in the shade 😀
ive been visited by friends and family ( not many) and going out to walk my dog. It helps with mood and brings me some energy 😷.
glad your mood has improved x