Well I’ve been hit hard by the docetaxel! I did OK with EC but this has been awful. Sore mouth, terrible indigestion (I had to sleep sitting up last night) stomach ache and bouts of diarrhoea. The nurse told me that rather than easing off like the EC, the side effects from docetaxel tend to get worse over the coming days. Not sure how I’ll cope tbh as I already feel awful. @swk1981 - hope you are continuing to improve and will be able to home soon 
3 Likes
How far out are you from your last dose @ivy-cat ? I’ve found that 4-5 days post treatment have been the worst for me in terms of side effects on the docetaxel and then it’s a slow climb back towards normality before the next round. I’m definitely feeling the cumulative effects after 6 rounds of treatment and don’t rebound quite as high before the next treatment but there has been a little respite in between rounds. you get a break soon.
Strangely enough my side effects haven’t been that consistent through the rounds - first one was primarily diarrhoea, second I was given loperamide for the diarrhoea and didn’t need it at all but the heartburn was like you described and I was popping the gaviscon like sweets and having to sleep slightly elevated. I also had the worst insomnia I’ve ever experienced and I was pretty much in tears and completely emotionally overwrought the whole first week post-treatment to the point where I was in a seriously dark place mentally. I eventually got ahold of some sleeping pills which made a world of difference. I’ve just had my third round of docetaxel yesterday, so it’ll be exciting to see which SE I get this time around… 
4 Likes
@kartoffel - currently on day 4. Really hoping to turn a corner soon as I can barely function. The indigestion was so bad last night and then woke up early and had to dash to the toilet. Weird how the side effects change - for my first EC I also had awful indigestion and then never had it again 
. I’ve also not been sleeping which doesn’t help with my mood. The doctor offered me sleeping tablets so I may take her up on that. You must be so relieved to be reaching the end of your chemo!
Hey @ivy-cat,
Sorry you’re feeling so shocking. I’m on Day 10 today and I have come home from hospital and will continue on oral antibiotics. Stomach still not great but definitely better and I can’t wait to have decent food at home.
My bed feels like a warm hug in comparison to the hard hospital beds. What a change!
It feels like a LOT to have the noise of home though. Even having conversations is too much. I can’t handle the multiple stimuli and am just so very weak. I feel like a different person and I think it’s really knocked my confidence in my strength and abilities. It’s the first time I’ve felt like it’s not guaranteed that I’ll bounce back and I’m not sure I’ve ever felt like that before.
I was chatting to the oncologist before I left hospital and I was generally referring to taxanes and he said that all taxanes are not equal and that Docetaxel has twice the toxicity of Paclitaxel and is a much harder drug to tolerate. I’ve often thought they were comparable but it turns out they’re not.
He said the main attack by Docetaxel is the mucosa. So throughout our mouths, throats and all the way through our entire digestive system. He said to make my entire focus be in support of my digestive system and it will support my body. Obsessive dental care and rinsing and he said that as long as there’s no bacterial infection then loperamide is fine for me to take if I get diarrhoea (I’m very anti-Imodium style drugs and arguing with the body). Since my stomach seems to be calming itself, I’ll hold off for now on loperamide.
The Oncology nurse told me that my peripheral pains won’t go between cycles but should go after the last cycle. I’ve ordered the ice gloves and socks for next cycle of Docetaxel to try to diminish this horrible pain getting worse. The Polybalm seems to really help with the pain (even though that’s not what I was using it for).
All in all girlies, this last half is just really really tough on all of us and we’d all done so well at staying positive. We will get through this but I truly understand now why they say it takes 6 months to recover from chemo fully. We may have to just hang up our super hero capes and accept we’re mere mortals for a while. I’ve never been as humbled as I have been with Docetaxel and it’s not an easy road to bear.
I’m still able to pay myself from work but it’s made me wonder why there isn’t a set up for people going through cancer treatment because I can’t see how anyone could work full time on Docetaxel and survive on SSP. I’m stressed enough by my uselessness without worrying about income too. It is so hard. Xx
4 Likes
I’m over 2 weeks since docetaxel and phesgo. Rang hotline yesterday as incredible chest pain, turned out to be heartburn. Never felt anything like it. Was recommended to take Rennie and Paracetamol. This really just keeps on giving. Another 3 rounds of this - eurgh!
4 Likes
For those with heartburn and indigestion I had it really bad after my first round of EC and nothing over the counter was sorting it. I got put on 20mg Omeprazole once a day and that still wasn’t so they upped it to twice a day and I swear it’s been life changing the heartburn/indigestion I had was horrific and it did take a week or so for the omeprazole to properly build up in my system but now I just get slight indigestion the day after my EC and they’ve told me to stay on the twice a day dose through chemo due to potential for Docetaxel to do the same. Worth looking into for those struggling. If that doesn’t work there are other tablets they can try you on too
6 Likes
The worst thing I realised with neutropenia was that I was the person mostly responsible for my medicines and checking if I was okay. That’s where it went wrong. I was too in control.
I’ve found an app (Vinehealth) and I’ve plugged all my medicines in and my husband is logged into it too (with my login) on his phone.
It tells me when to take everything (prescription or things like mouthwash) and records all my temps so that I don’t have to be the boss anymore. I’m hoping this will keep me safer and also take some pressure off. You can record symptoms too to be able to report back to oncologist or simply for you to compare cycles. I’ve realised I’m not well enough to hold it all in my head and remember everything.
It may help some of you.
6 Likes
Lol you’re defo more high tech than me with recording…. I’ve done this since the beginning too and also have a separate sheet for my temperature. I find it really helpful for remembering everything too as there’s no doubt on whether I’ve took something or not this way! Using a good old paper notebook to keep a diary too as also found I’d forget my summary of side effects and dates they started. It’s fab for establishing patterns☺️ My husband laughs at me as he’s a total spreadsheet geek for finances etc and I’m always writing mines in my notepad and tell him I’m “updating my spreadsheet” when I redo it😂 drives him mad that I insist on writing things hehe
5 Likes
Hi
How is it going for you ? I am starting this coming Thursday. Ive to be admitted wednesday to have a portacath inserted into my chest. I am more anxious about that really. I am also using cold cap and was told about fleece socks, something warm however to remember nothing thats to go on over your head if you are cold capping and something that they can easily access the chest where the line is to administer the drugs. I am thinking now what to wear and what to take. Would love to hear how it is going for you
1 Like
I realise I am currently very fortunate and have managed another half marathon this morning, with a fabulous Florence Nightingale medal
13 Likes
You’re incredible @gromit12! You are my inspiration for afterwards! I am going to achieve something…anything…that isn’t lying in bed!!! You should be so very proud of yourself! X
3 Likes
Hi,
Am now half way through my treatment (had the last off my EC on thursday) I’ve had 4 cycles in total & treatment is fortnightly, am moving onto Paclitaxel for 4 cycles & have an appointment with my oncologist this Friday, after this is radiotherapy, hormone tablets & injections. I’ve already had my surgery (3 in total) 1 to remove grade 3 tumour & 3 nodes, the other as there wasn’t enough clear margins but then found out rouge satellite cells were in this that are a grade 2, then finally another op to get clear margins again.
Cold caps been ok, its hard to start with, but do if you can persevere, I take 2 paracetamol along with the pre meds & this helps but the first 10/15 mins are hard.
I get treatment through a cannula, however my 1st two cycles I did wear my kuddly, however as its now warmer weather & the hospital is hotter, I’ve not even needed it around my legs.
Side effects have been harder the last 2 weeks & am kinda dreading what this cycle will have in store for me, Its the tiredness thats getting to me & the feeling sick, however our bodies are getting put through the mill for sure & I’ve learnt to take each day as it comes, take the meds given & be kind to yourself.
I hope thursday goes well for you xx
4 Likes
I love this @swk1981. I currently log temps and symptoms in a book but this looks like a good way of doing it. Thanks also for the information about docetaxel. The fact that it affects mucous makes total sense and explains why my mouth, oesophagus and stomach all feel inflamed x
2 Likes
Omeprazole twice a day may help. I’ve never found anything else works properly for acid. I was told to take it twice a day through the first week to reduce acid issues before they start. I really wish everything was just standardised for us all. I swear we are all our own oncologists half the time xx
4 Likes
@isthisreal - the indigestion I had last night was SO painful I can easily see why you may confuse it for chest pains. Already anxious about getting it again…
4 Likes
Congratulations- we all have a lot to thank Flo for! I managed a 43 minute parkrun this morning and was chuffed with myself 
8 Likes
@gromit12 well done, I’m totally in Awe of what you’ve achieved. You’re my motivation to get fit after all this. Hopefully everyone is muddling through as best they can 
I can’t believe how many of us our suffering such bad heartburn. Mines has got a lot worse this cycle and I’m taking 2 omeprezole a day plus Gaviscon. I use a wedge pillow at night which is fantastic. If I don’t use it I’ll literally be sick with heartburn. I’ll link it here.
Just another thing to be careful I was at the sea today and did a 20 minute stroll and this evening my face and arms are really red, blotchy, itchy and slightly swollen.Seemingly it’s photosensitivity. I’m on Doxorubicin and cyclophosphamide (AC) and it’s a side effect. I’ve been told to wear long sleeves, wide brim hat ( sure I’ll be gorgeous lol) and if possible to avoid the sun.
This chemo is a learning game everyday.
2 Likes
@swk1981 you’re having a really tough time and I totally get when you’re weak and fatigued it gets us down. I’d 6 weeks of antibiotics and just last weekend on here I was ranting I don’t think I can do any more chemo.
It’s totally understandable that you feel so vulnerable, this treatment leaves us feeling we’ve no control over any part of our lives at times.
Remember everyone is here for you and you’re doing amazing what you’ve got through already. 
4 Likes
Morning ladies, just catching up on all the latest chats, glad you are all reasonably well, I’m currently in a private room in a&e been here since 10 o’clock yesterday morning, I rang the emergency help line first thing as was so unwell Friday and yesterday morning, (no admission at weekends do advised to go through a&e) couldn’t eat, lethargic, head and face pain but this time something felt seriously wrong and I knew I needed to be seen, well to cut a very long story short my white blood count and neutrophils were through the roof a lot higher than they should be, my nivestim injections were supposed to go on for another 2 days but they said I needed to stop straight away , I’m still waiting to be admitted to a ward, feel like I’m in that programme 24 hours in a&e
Couldn’t even keep water down yesterday , anti sickness didn’t work , I’ve had fluid drip over night and antibiotics, feeling a bit more perky today, my point is sometimes you just know something is wrong, trust your instincts . Xx
5 Likes