I’m starting my Cycle 3 tomorrow (3 out of 8) and so far I have been faring well. The consultant says that my haemoglobin keeps going doing down and I feel a bit of fatigue sometimes when doing sports but when it happens I just take it easy for a bit. I’ve been cycling a lot (but very slowly) and started to play tennis (with a bit of time on the bench when I need it). I’ve been joking that if I pretend that everything is fine, then my body won’t get the memo that I’m actually doing chemo right now. So far this strategy has been working. I must mention that I’m 35 and had been healthy up until I had BC. Installing the port for the chemo was my first time ever at hospital.
The only thing that I noticed was mouth ulcers and in general it’s getting much more sensitive. I’ve bought toothpaste without sodium lauryl sulphate and a toothbrush for sensitive teeth, that has helped a lot! Also, doing regular mouthwash (both antibacterial and saline) has worked wonders.
My hair has started to shed a bit, but it’s not noticeable yet (thanks for that - my wig is still en route!)
I feel like I’ve just crawled out of a cave after my last session. No idea why that hit me so much harder than the first 2, but boy did it ever. My whole body just ached, it felt like pretty much every inch of my body - aside from my hands and feet was bruised and it was painful to have anything or anyone touching me. I had to force myself to eat and didn’t have the energy to leave my sofa/bed on Sunday/Monday. No idea why this one hit me so hard, but it was really not fun. Glad it was a bank holiday, so I didn’t have to take any sick days though… I’m still trying to hide it all at work, so it helps when my down days are over the weekend/on holidays.
Finished my fourth and last EC last Thursday and feel like I have been hit by a bus. Was tired yesterday but today can barely keep my eyes open and absolutely zero interest in anything.
Due to start 4 x biweekly paclitaxel next week. Roll on another set of side effects!
@kartoffel You’ve done so well and I hope you are starting to climb back up after your final EC. So sorry you had a really rough weekend. I have my sofa/bed ready for this coming weekend. It takes me about a week, I reckon. The Phesgo heart damage thing is a worry but you are young and fit so hopefully you will be fine. I also am glad I have chemo on a Thursday so that I can be ill over the weekend and back at my desk on the Monday morning. I think the minimal steroid dose I have seems to get me through the Friday every time then I write off the weekend. We must be mad to keep doggedly working throughout. My work have been really supportive so I should probably relax about it all a bit.
@shonas Sorry to hear that you also feel like you have been hit by a bus. I will be ready for this 4th EC to do the same to me this week. Let us know how you fare on the Paclitaxel.
@pinklilli3s I have put the breathlessness down as something to discuss with my oncologist as I had read it could be anaemia. Probably on here actually. I’ve now written down ‘low haemoglobin’. I am grateful to you for your medical knowledge. You know so much about all this. Are you a breast cancer nurse? It’s great. Thanks.
@tinatin That’s bloody unfair getting breast cancer at 35. I think it’s great that you are still doing sports. I’m walking every day and am also trying to trick my mind by telling myself constantly that I am strong and healthy and breezing chemo. If it isn’t exactly true then hey, just don’t tell my subconscious that! It’s what Dr Joe Dispenza says we should do and not just him. I also have been suffering from ulcers and have Corsodyl and pineapple. I’d not heard of eating pineapple for ulcers but am reliably told it works by a friend who is a practice nurse.
In other news, I have purchased a wide-brimmed fedora and a particularly fetching beaded cowboy hat. I think I may wear it round my Mum’s house as a silent protest against white plastic ones!
On a separate note - I‘m actually debating with myself whether I should continue working during chemo. My employer has an amazing employee benefits package (I work in consulting, so I‘ve done my fair share of late nights and weekend work for this) and I don’t need to work for the first 6 months and will be receiving full pay. I have deliberately planned my chemo in such a way that I feel best when the weekend comes (my weekly treatment is on Tuesdays), because I wanted to spend this time with my husband and friends. However, as I was mentioning, chemo is going well and I should be able to work a bit. I do find my work interesting but having been out of the loop for about 3 months now (I was on medical leave for mental health reasons and was doing an IVF cycle before my chemo), it is difficult to get back into it. I am planning to start working Fridays and Mondays but sometimes I think I should just make use of me my benefit and chill for a bit. I‘ve been working really hard over the last 10 years and never had a holiday longer than 2 weeks in a row. I sometimes think that I have been breezing through chemo so far just because I‘ve taken work out of the equation and it freed up a lot of resources in my body.
Hi @tinatin - that’s interesting. Perhaps you should give yourself the optimum chance of recovery. It sounds like your body has been going through the mill with the IVF, let alone chemo on top of it and as we all know, the mental health takes one helluva battering. I know mine did.
I honestly think that I would be fine if I didn’t work, but my contract only gives me Statutory Sick Pay and I am in sales, so I stay motivated by making sure that I make the company money and get my commission! If you have worked hard for your company and put in the hours, then it would seem that this is exactly when you should take advantage of the employee benefits package. If you get too bored, you could always start working Fridays and Mondays at a later stage. And it gives you more time to work on yourself. Someone on here said to make you your project. Great advice. I say give it some serious thought.
Feeling sorry for myself today
Day 7 cycle 3 of EC. I seem to have all and any of the listed side effects.
Currently really sore mouth, can’t taste anything, keep trying and discarding different things.
Extreme fatigue, have to calculate how many times I can face going up and down stairs.
Vagina and vulva like sandpaper. Whole body feels like dried out to a crisp. Diarrhoea every morning only stos with loperamide, and everything just hurts.
It’s like even my lumpectomy boob has started hurting again.
Dreading another filgrastim jab tonight.
And the thought that Docetaxal might be even worse scares me to death.
I’ve got everything in place to support me, but really finding it hard currently.
I think to some extent my support people have hit chemo exhaustion, they’re conking out before I’ve finished.
Sorry, just feeling very fed up today xx
How’s everyone doing and coping?
I had my last EC (3rd cycle) last week and had the worst side effects so far- whole body aches and severe fatigue. Even just a simple touch, my body aches. I was really irritable for the past few days and just don’t want to talk.
Glad I am picking up now and feeling much better.
Hooray! I am halfway to my treatment. But am thinking what is waiting for me for the next cycle. The next drug I am having is docetaxel. Anyone who has had it? Any side effects to watch out for?
Take care everyone.x
Hi @starapple, I’m due to have my first Docetaxel next Wednesday and have severe anxiety about the side effects. My EC side effects were really bad and had my last dose reduced due to how bad I was.
I’m hoping it won’t be as bad but not sure if that is just wishful thinking
@Vibby I know exactly how you feel, I am day 6 post sessions 4 of EC and yesterday was a real struggle. Not helped by the awful weather!
Struggled to do anything and nothing tasted any good, even water tastes bad.
Slightly better today, keep going we will get through this. Xx
Hi @sammybp.
I’m really worried too as it’s a new drug and don’t know what is to be expected. It’s like when we had the first dose of EC I guess. Each person responds differently. Hoping we can stay stronger again and finish the treatments needed.
We can all do this!
Bless you that’s grim. My third EC was worst yet. So tired and felt rubbish. Nystan from your GP very good for oral thrush. I could only have half my fourth round as had a reaction to the Epirubicin but that is virtually unheard of on fourth round and EC is normally well tolerated going in. X
Also re very sore vagina I would recommend GP checks out it’s not shingles which can lie dormant but chemo can flare up. Very simple to treat. However do put on some Replens and there is a good 2% Lidocaine gel which helps. If thrush then Canesten
Just really hoping Docetaxal isn’t worse !!
Not sure how I’ll cope if it’s any worse.
I won’t make it out of bed !!!
It’s almost worse because I know every few days the next lot of side effects are going to ramp up.
And my hair is falling out again
Just want to be normal again!!
Sorry to hear side effects are worse for quite a lot of you but (trying to find the positive) it’s great that you’ve managed to complete the EC part of treatment and are halfway through your chemo.
I am starting Docetaxal this coming Monday after 1.5 lots of EC and like many of you I’m dreading it and the side effects it may bring as I also reacted badly with EC even after a reduced dose.
Had an update appointment with oncology yesterday and she said the main side effects with the Docetaxal tend to be bone and joint aches and diarrhoea and sometimes mouth ulcers but shouldn’t feel the nauseous and dizziness of the EC.
I picked up my steroids yesterday for Docetaxal as I have to take them for 3 days and start them this Sunday - the day before the chemo, I’m a bit concerned that I have to take 8 a day for 3 days and the side effects they may cause too??? It seems like an awful lot!!
Please everyone keep posting on how you’re all doing - I will send an update after Monday on how it went.
On a further note, I had my genetics testing results back this week and I have an ATM gene mutation which can increase my risk of breast cancer by around 30%. I’m now waiting for an appointment with the genetics team (once my chemo is finished) and a follow up with breast surgeon and have been told the next stage of my treatment plan may change from radiotherapy to double mastectomy. I’m trying my best to just concentrate on the chemo until then and will go with more surgery if it’s recommended- I’m now resigned to the fact that this year will be taken up with my treatment but hopefully next year I’ll be planning one hell of a holiday.
Take care everyone and keep sending your updates Xx.
@kitty77 8 steroids a day? You’re never going to sleep again… Hopefully docetaxel will be kinder to you than EC. I think the only thing that’s keeping me going right now is planning my holiday for when this is all over… I was supposed to go to Japan for my 40th which got delayed because covid happened and then each year something keeps coming up but next year will be my year!
That’s a lot of steroids isn’t it!! I warned my husband I may be bouncing off the walls . The oncology team advised me to take them at 8am and 2pm every day but I still don’t think I’ll get much sleep!! I’m then worried about the crash after day 3 when the steroids stop!
Japan sounds fantastic and like you say it’s good to have something to look forward to and plan for outside of treatment.
I’ve always wanted to go to New York so would love to do a trip there but could also probably do with a lazy beach holiday when this is all over!!
I’m still trying to hide it all at work, so it helps when my down days are over the weekend/on holidays.
Hopefully docetaxel will be kinder to you than EC. I think the only thing that’s keeping me going right now is planning my holiday for when this is all over… I was supposed to go to Japan for my 40th which got delayed because covid happened and then each year something keeps coming up but next year will be my year!
. The oncology team advised me to take them at 8am and 2pm every day but I still don’t think I’ll get much sleep!! I’m then worried about the crash after day 3 when the steroids stop!