Can I just add, depending upon your treatment can depend upon how much you may shed. I got told to expect a 30/40% hair loss, but mine is always a bigger shed after hair wash days, hence me trying to go longer without washing it but its working for me so far
@belle1 congrates on half way point , its amazing how the mindset changes, or at least mine has. I needed a big kick up the arse yesteday before my treatment, its been a hard few weeks with side effects, it was my mums 85th birthday yesterday (sheās in a carehome & has dementia, so Iāve been trying to be super protective off me & her & Iāve not seen her since the day before my 1st treatment) my big sister looks similar to me & has been amazing by doing all the visits, I just cant put mum through this as she will know straight away somethings wrong with me & she worrys when I go on holiday let alone this, so this time its a I know best & mums not getting put through this crap.
@ivegotthis01 sorry to hear about your mum. Not the same but Iāve got an uncle with dementia in a home too who I usually visit and I donāt want to visit either for the same reasons so Iām avoiding him the now too as heās able enough to notice something isnāt right. If he fixates on something stressful he continually asks everyone about it too so not wanting to do that to him. Itās good your sister is doing all the visits!
Yeah I feel quite fed up today even though Iām also happy about the halfway point. I woke up and my phlebitis was worse and part of my arm swollen and red so when I went in for chemo I told them about the change. Had to get an ultrasound of it after chemo and confirmed 15cm of my arm affected by blood clot(s) so have been put on blood thinners now for a few weeks to try settle it and prevent it getting worse. Not sure why I feel in a funk today ā¦. When I have to get bloods redone then no one phones to tell me if theyāre ok it seems to knock me off kilter a bit too as itās the uncertainty that chemo will actually go ahead so might be partly that. Iām sure Iāll come out of it by tomorrow! They also upped my fluconazole and gave me back up Nystan again for the oral thrush so if I can avoid it this time Iāll be delighted!!
Omg hopefully the thinners work ok, god your having a time of it.
Nah definitely same thing, its so hard not seeing mum & this did not help me yesterday for sure.
But you get days off being ok & then days of wtf-ness & anything can & does set you off, tomorrow is a different day & am sure it will be better for you.
Today am wired too the moon with the steroids, hardly slept last night so hoping for a sleep tonight (Iāve not even had my normal disco nap)
@ivegotthis01@belle1@gromit12 - Pleased to hear that you have all successfully cold capped! Been too caught up in myself and hadnāt realised how successful itās been for you - well done on the half way points too Heading for the homeward strait now!
Well Iāve 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 Iāll cope tbh as I already feel awful. @swk1981 - hope you are continuing to improve and will be able to home soon
How far out are you from your last dose @ivy-cat ? Iāve found that 4-5 days post treatment have been the worst for me in terms of side effects on the docetaxel and then itās a slow climb back towards normality before the next round. Iām definitely feeling the cumulative effects after 6 rounds of treatment and donāt 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 havenāt been that consistent through the rounds - first one was primarily diarrhoea, second I was given loperamide for the diarrhoea and didnāt 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 Iāve 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. Iāve just had my third round of docetaxel yesterday, so itāll be exciting to see which SE I get this time aroundā¦
@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 . Iāve also not been sleeping which doesnāt 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!
Sorry youāre feeling so shocking. Iām 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 canāt 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 canāt handle the multiple stimuli and am just so very weak. I feel like a different person and I think itās really knocked my confidence in my strength and abilities. Itās the first time Iāve felt like itās not guaranteed that Iāll bounce back and Iām not sure Iāve 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. Iāve often thought they were comparable but it turns out theyāre 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 thereās no bacterial infection then loperamide is fine for me to take if I get diarrhoea (Iām very anti-Imodium style drugs and arguing with the body). Since my stomach seems to be calming itself, Iāll hold off for now on loperamide.
The Oncology nurse told me that my peripheral pains wonāt go between cycles but should go after the last cycle. Iāve 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 thatās not what I was using it for).
All in all girlies, this last half is just really really tough on all of us and weād 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 weāre mere mortals for a while. Iāve never been as humbled as I have been with Docetaxel and itās not an easy road to bear.
Iām still able to pay myself from work but itās made me wonder why there isnāt a set up for people going through cancer treatment because I canāt see how anyone could work full time on Docetaxel and survive on SSP. Iām stressed enough by my uselessness without worrying about income too. It is so hard. Xx
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 wasnāt so they upped it to twice a day and I swear itās 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 theyāve 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 doesnāt work there are other tablets they can try you on too
The worst thing I realised with neutropenia was that I was the person mostly responsible for my medicines and checking if I was okay. Thatās where it went wrong. I was too in control.
Iāve found an app (Vinehealth) and Iāve 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 donāt have to be the boss anymore. Iām 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. Iāve realised Iām not well enough to hold it all in my head and remember everything.
Lol youāre defo more high tech than me with recordingā¦. Iāve 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 thereās no doubt on whether Iāve took something or not this way! Using a good old paper notebook to keep a diary too as also found Iād forget my summary of side effects and dates they started. Itās fab for establishing patternsāŗļø My husband laughs at me as heās a total spreadsheet geek for finances etc and Iām always writing mines in my notepad and tell him Iām āupdating my spreadsheetā when I redo itš drives him mad that I insist on writing things hehe
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
Youāre incredible @gromit12! You are my inspiration for afterwards! I am going to achieve somethingā¦anythingā¦that isnāt lying in bed!!! You should be so very proud of yourself! X
Am now half way through my treatment (had the last off my EC on thursday) Iāve 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. Iāve already had my surgery (3 in total) 1 to remove grade 3 tumour & 3 nodes, the other as there wasnāt 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, Iāve 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 & Iāve learnt to take each day as it comes, take the meds given & be kind to yourself.
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
Omeprazole twice a day may help. Iāve 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
@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 againā¦
Heading for the homeward strait now!
. Iāve also not been sleeping which doesnāt 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!
