Just had chemo today, feeling very tired and a little nauseated. Got boys to put to bed then I'll be in bed too. I'm worried the sickness is going to be bad like my pregnancy.
I'm home and my goodness it feel great. Shi I really hope I am like you as I found it so hard being away from my children. They said in all likelyhood my consultant would lower my dose. I had the injections to help with the white blood cells from day 5 and they extended these in the hospital. I wonder if I could get a higher dose of these?
How are the rest of you getting on?
Hi Wishuponastar really hoping your are feeling better and have some idea of when you might be home. Thinking of you x
Wish upon a star, sorry to hear you’ve ended up in casa nhs ❤️ Your neutrophils will start to raise day by day, it’s just pants waiting for them to whoosh up, but they will. I had reduced dose chemo for my remaining 5 after doing casa nhs on 1st Chemo, might be something for you to discuss with your onc if you want to. Right jan thread time for the May17 chemo starters famous neutrophils 💃🏻💃🏻🕺🕺💃🏻💃🏻Don’t ask me why but it works, worked for them and is oct17 chemo starters, do wish upon a star, you pick the tune on the chemo jukebox and jan2020 thread will get neutrophils 💃🏻💃🏻🕺🕺💃🏻💃🏻For you 😘💕💕✨✨shi xx
Hi Drida, I had EC on 7th and felt rough on 8th and worse on 9th but have felt loads better since Friday and pretty much normal over the weekend. I'm starting the bone marrow injections tomorrow so not sure what that will bring. Hope you're feeling better soon.
Wishuponastar, sorry to hear you're still in hospital, hope you can get home soon xxx
Hi Wishuponastar, so sorry to hear you are still in hospital. It is very hard when you have young children as you feel you should be there for them. Hope the ct scan is ok and you get home soon.
Until I started fainting exhaustion was my worst symptom. I did sleep better once the steroids stopped. Sadly I am currently still in hospital and have been here since Wednesday. I am now on oral antibiotics and not introvenious. I am waiting for a CT scan but that may not happen until Monday. It is breaking my heart being away from my three children. They came in yesterday and are coming back today.
I had my 1st EC chemo on Wednesday and sleep has defo been the hardest symptom for me, really fatigued all day and then keep waking at 3.38am or 4.38am every morning and can’t get back to sleep! Please someone tell me it gets easier, no head aches (I feel for you drida! ) but defo have heart palpitations.
Are you taking the steroids and anti sickness tablets? I came home with 3 days worth which finished yesterday and not suffered with sickness yet?
it’s such a strain on our bodies, defo rest if you get the chance and spend the day in bed, it’s time to be selfish and make yourself number one priority xxx
I had my first chemo AC on 10/01. On 11/01 I woke up at 3 am with nausea, head ache, heart beating was racing.
I would like to hear from your ladies when are the sides effects gets better?
I also spent the whole day in bed .
Had my portacath under general anesthetic so been a busy week. They were able to use it next day at chemo as it was nearly 24 hours from insertion. Mine is quite painful currently not helped by being used today I am sure. Spent all day at oncology but feeling okay currently except for being awake at 2:50am 😵
re the trips to the loo whilst " hooked up ".
yes i just got the ok from the chemo nurses, unplugged (whilst having chemo going through) and wheeled myself off for a wee. Obviously i was careful not to catch the tube but it really wasnt a problem.
i used to have migraines and thats why i decided against the cold cap. I did find my chemo regime gave me headaches nearly every day and took regular daily meds.... 1 paracetamol and 1x 400 ibuprofen which worked for me.
my hair was also quite fine, so growing back thicker is terrific 👩🦲 👱👍
if possible take yourself off for s short walk, i did everyday even when i felt grim...
good luck n let me know how things go for you. Mini mad xx 💖💖
Ha! Same here! Early to bed but wide awake since 4! Have taken the dog for a walk and am now having a day with box sets!
I’m really sorry to hear you are unwell and away from home which is where we all want to be at the moment but as my nurse keeps telling me ‘There’s no heroes in chemo!’ Just try to keep calm and know you are in the best place. I’m a primary school teacher and know that children are very resilient- at the moment it’s much harder for you than it is for them - so try not to worry about them. Have a good cry 😢 I find I do it quite a lot now but it does make you feel better. 👍👍🤞🤞
Sorry to hear you're not well , hopefully it wont be too much longer before you are home with the family. Glad the hospital staff are looking after you. Good luck with the rest of your treatment x
Thinking of you Wishuponastar and hope you recover soon but you are in the best place. Hope you have help for your little ones. Keep fighting and smiling
Hi mini mad, thanks for your kind words, it helps to know that someone else had same issues especially re the loo! We’re you able to unplug while the chemo was going in? My nurses were reluctant to do that.
It is good to hear that you didn’t loose all your hair despite not using the cold cap as I used it but found it very uncomfortable and am debating whether to continue! I also get headaches and now have a migraine, so not a good sign. Actually getting thicker hair as a result of loosing is an incentive as mine is quite thin!
i am feeling shaky but determined to get outside for a walk today.
take care and good luck to everyone on this journey
Oh Wishuponastar that sounds horrible. Hope you turn a corner soon. Sounds like you're in the right place. Thinking of you xxx
Sadly I am still in and not leaving any time soon. I am neutropenic, fighting an infection which we do not know from where, and keep fainting. I was out for over 4 minutes during one.
Oh my wishaupon a star, hope you are okay now? It is horrid being away from your children and so hard for them to. I hope you have plenty of support. Keep being strong, hopefully we can all get through this.
Blimey Wishuponastar! Hope you're ok? What happened? Thinking of you and sending lots of get well vibes xx
Helsbels20 am the same, had my chemo yesterday at 9am I was in bed last night at 8pm! Downside I have been up since 4am...😴🥱 struggling with sleeping at moment ( or should say staying asleep!) please if anyone has tips, nothing on my mind as I have tried to have note pad and pen and I just wake! Xx
Oh no wishuponastar! Glad to hear your back at home where you belong! Take it easy and get yourself better!!
I got told days 8-10 are the worst so am not looking forward to next Thursday already! Keep us posted.. xxx
I had a port fitted last Friday and it was fine, I had a small sedative and was a wake all through it. A little sore afterwards but doing normal things, even went for a run, do don’t worry! It was a little sore yesterday being connected to the drip but after that nothing and others who have had a port tell me it a really good thing as they take all your bloods etc from it. Just the waiting ... again.... 🤞😘
I have had a similar journey so far to you starting my chemo tomorrow 6 cycles FEC-T then radiotherapy, herceptin and HRT. Busy waiting for my portacath insertion today its been a busy week so far. I'm 43 and have HER2 positive and hormone positive BC. Hopefully tomorrow will go well
Sorry I have not been posting but I have been admitted to hospital. All very frightening and I hate being away from my children. I only made 8 days.. I thought I was doing so well.
i had my first chemo session today - have been dreading it but it was actually fine! Did the cold cap which also wasn’t as bad as I expected and now just feeling a little tired so fingers crossed for the next few days. It is really reassuring to hear there are others going through the same things and so many positive comments. I’m 47 and have her2 positive. I had a lumpectomy in November so was actually really pleased to get going today as the waiting is the worse. Good luck to anyone about to under go treatment - I really think all the uncertainty and waiting is the hardest bit (but then again I’m only on day one of chemo!!) 👍🤞
Thanks for the reply and for the tip , I'll try the salt water rinse.
I've just purchased some manuka honey today , not a massive fan but prepared to try anything I can.
Hope your treatment / recovery is going well.
I use a teaspoon- and starting out you could start with half a teaspoon and work up to the teaspoon. I do a quick salt water rinse and then I enjoy a teaspoon of Manuka honey which apparently also has healing properties. According to others, your teeth will benefit from the oil pilling too!
All the best!
After reading a post on here I thought I'd give oil pulling a go before starting chemo. Just to get my mouth in the best possible bacteria free condition as possible. Nothing ventured nothing gained.
I watched a few you tube videos on what to use and how to do it. Some say a tablespoon some say teaspoon. Well all i can say is a heaped teaspoon was way too much I ended up gagging and swallowing some . Quite funny looking back. Hope it doesnt cause any side effect but I suppose time will tell. I'd definitely say a level teaspoon is enough to start the process.
I used it with 3 drops of clove oil as stated in the you tube video.
Mouth feels clean but whether it works is another matter when I start having chemo. My node clearance op has now been brought forward to next week. Which I'm thankful for because I find the waiting around the worst part. As anyone else tried the oil pulling ? What was your experience?
Well I have popped my chemo cherry so to speak, didn’t have any issues with cold cap... actually didn’t even bother me so hoping that it’s worth it as I am not ready to get the buzz cutters out, even thou my 7yo is eager to shave my head 😳 all I will say is try it dollymixture If you don’t like it you can take it off and I brought my own leave in conditioner (palmers) as this smells delicious and I didn’t want to use the NHS own brand! good luck for tomorrow, please keep me updated with your journey
came home with a bag full of goodies (medicine) but just very tired and that is due to lack of sleeping last night in anticipation for today!
might need a PICC line as veins not great, so that’s been put out there.
Its sounds like I’m following a similar regime to you. I was diagnosed at the end of November and am also ER/PR + and HER2 positive. I start my first round of 4 EC tomorrow (9th Jan) followed by 4 cycles of Docetaxel/Herceptin before my surgery and radiotherapy followed by 14 x Herceptin/targeted hormone therapy so it’s going to be long haul.
I’m just keen to get started now ( so that I can hopefully get finished quicker!) as this period from finding the lump/diagnosis/tests/ct mri bone scans to starting treatment has been horrible and just dragged.
Im going to try using the cold cap in an attempt to keep some of my hair.
Thinking of all the January Chemo starters and wishing you all the very best of luck Xx
Hi Sunnybear...love the name 😀
well i am also an older lady, 70 this year 😳😳
my treatment plan fnished in august last year. I didnt do the cold cap, my surgeon said as i get regular headaches, could make them worse.
i lost my hair in patches with normal hair inbetween after my 3rd chemo ( i had paclitaxel and carboplatin for Triple Negative bc ) so just buzzed it short but not down to my scalp... was told this could be painful.... i had no head pain at all.
i now have a full head of hair, its the same colour as before, no curls and its thicker... yay... re constant trips to the loo 😆😆 i was exactly the same but i used to unplug myself and wander off. Had a picc line in so didnt need my cannula wraped up everytime.. good luck with your future treatment, if i can offer advice/suggestions just get back in touch. Mini mad xx 💖💖
No longer a chemo virgin, I had my fist taxol yesterday! The meds were fine except the taxol irritated my vein and needed a saline flush part way through. I used the cold cap (paxman) it was very cold and very heavy. I know others have said the first 15mins is the worse but I found it uncomfortable all the way through and still have a headache. I will see how I feel next week and decide whether t9 try again, although I think it will be easier now I know what to expect. One thing I didn’t expect was how cold the rest of me would get. I was cold to the point of shivering to my waist! Luckily the nurses kept bringing me blankets and I warmed up.
I am an older lady (60+) and all the saline and fluids being pumped in made me need the toilet badly - something I hadn’t thought about until I had the nurse unplugging me from all the machines for the third time! Anyone else had this or is this just my cheap bladder?
last night I was exhausted, slept for 2 hours and then wide awake - I assume the steroids kicking in. I will see what today brings, good luck to all especially those doing chemo today.
I had my last chemo on 8th Aug last year but just wanted to offer some reassurance to any EC ladies. I had 6 lots of EC chemo over 18 weeks and luckily suffered hardly any side effects. When I had the EC only I was absolutely fine (did work out I needed to eat prior to and after the chemo otherwise I got bad heartburn, as soon as I figured that out I had no further issue). I was unfortunate enough to develop phlebitis but got that seen to and it disappeared. My veins did struggle which is a known side effect but I didn't want a port or anything fitted which would have avoided it.
I had Zometa infusions every 2nd chemo and this is when I felt tired for a day or two but recovered well. I kept up with plenty of fluids, gentle excercise and healthy eating throughout both my chemo and rads and compared to others sailed through; mind you I could put up with anything apart from being sick but luckily nothing like that happened.
Please be reassured not everyone has a difficult time and finds it much more doable than they feared.
Fingers crossed any side effects you have are minimal.
p.s I lost the majority of my hair on day 16 so that's when I had it buzzed very short, didn't fully lose my hair until mid July (started chemo last friday in April) and had a fine covering again by mid Sept and today it is growing really well with a rather fetching chemo wave and is quite thick and approx 2 inches long.
No, I'm not doing the cold cap. I actually live in France and I'm not even sure it's offered here. I've never heard anyone here mention it and it wasn't offered to me so I'm just going to have to brave the baldness. I'm not looking forward to it but do feel slightly better since I chose a wig last week. Good luck for your own treatment.
Pleased your 1 st session went well , fingers crossed the nasty side effects stay away. Sounds like your staying strong and positive. It's a journey we all have to take and from reading others stories I gain great comfort from how well people cope with the treatment. I've not yet started mine.
Can I ask did you try the cold cap ? And if so how did you find it ?
Thanks jemmalou, yes it does sound like we're in a similar position. Today's chemo session went well for me. Everyone was lovely, it all went smoothly and l was in and out in 2 hours. The nasty side effects haven't kicked in yet so obviously I might feel a bit different about it when they do! Good luck for tomorrow!
Good luck for this afternoon I will be thinking of you @frenchie_77, our pathways see identical ... and you sound like me, the quicker we start the quicker we finish. Just trying to have a positive attitude and we can get thorough this!
I agree hearing other people’s encounters really help as it does make you realise that there is a light at the end of the tunnel!
keep strong and keep positive, let me know how you get on xxx
Jemmalou I'm in a similar position to you. I'm starting neoadjuvant EC this afternoon (3 rounds), followed by taxol and herceptin, then surgery and radiotherapy. I also have 2 boys (8 and 11). I'm nervous but just want to get on with it now.
Thanks very much to those of you who have posted positive stories about your treatment, really helps.
Hi ladies.... About to start my EC chemo on Wednesday 8th and thought need to join this group to see if anyone has any hints or tips that can be passed along?
Am eager to start chemo, know it’s going to be hard but as i am having neo adjunctive chemo 1st and then surgery so am keen to get the ball rolling as cancer is it getting removed just yet!! Anyone else in same position?
Mine is ER/ PR+ HER2 positive so getting the full treatment (3 x EC, to begin with and then 12 x weekly tamoxifen, endocrine, radiotherapy, the whole hog so to speak!) dreading EC as nurses told me this will be tough, but if I can get through the first 3 cycles the rest will be a breeze! 🤞🏼🤞🏼🤞🏼
I also have 3 young boys (10, 7, 3) and worry how this treatment will effect them too 😢 xxx
I was diagnosed in July with lobular BC followed by surgery in August (left mastectomy and lymph nodes). Chemo (3 FEC and 3T Docetaxal) started at the end of September. My last treatment is this Friday!!
i wanted to share my experience with you.
Everyone is different, but for me, FEC was not as bad as I expected . The anti-nausea meds they’ll give you work well. I never got sick and never used the optional anti-nausea meds - I just used the 3 days of required meds. I purchased Queasy Drops from Amazon so if I had an edge of nausea, I just popped the candy into my mouth and was fine. I started Oil Pulling with Coconut oil most mornings for 20 minutes and only had 1 tiny mouth sore which the prescribed mouthwash eliminated. (See YouTube video on oil pulling through Chemo). I cold capped, had the big shed between Day 21 and Day 25, but have not required a wig. I have lost over 50% of my hair, but no bald spots - it’s just thin, so now I wear it in a claw clip and nobody at work has noticed. I purchased Polybalm online and apply to my finger and toenail when I started Docetaxal to prevent nail issues. I may buy 2 more tubes to continue applying after treatments are done since nail issues can occur months after finishing treatment. The toughest day for me was Day 4 of my 1st treatment of Docetaxal - very lightheaded and sore bones. My Oncologist reduced the strength of the 2nd round so it wasn’t as bad. Prepare for Day 4 and side effects hang on for about a week. This included loss of taste, but keep drinking water!
I’ve been working Monday through Friday throughout except when I have chemo. I take a couple of hours off every 3 weeks for Oncology appointment and bloodwork and I have chemo on the Friday. Back to work on Monday. It’s a long slog but we will all get there.
Get lots of rest when you can. All the best!
So I have my start date next Monday and they are putting in a port that morning. My Lymph nodes are showing cancer going towards collar bone and a spot behind breast bone but the doctor was very calming. Fingers crossed we can all beat this. Thats good to know re Picc line.
Glad the picc line wasnt as bad as expected.
Good luck with your treatment tomorrow.🤞
I'm also new to this forum and yes it takes some courage to post. But we are all going through similar and it's nice just to be able to talk to someone who is.
Again good luck for tomorrow
Hi, I think I’ve found the right place now! I posted a Feeling Scared comment on the general board last week by accident as I’m new to this.
Well today I feel a bit better as I’ve been and had my PICC line fitted this morning and visited the chemo department. I have to say it was better than I expected and as always everyone was lovely. The PICC line took around half an hour to insert and all I had to do was lie on a bed! I had a local anaesthetic injection in my arm and the nurse used an ultrasound to find my vein before covering me in a sterile sheet and inserting a needle in my arm. She then threaded the line in (it’s a lovely purple colour!) and she could see where it was going with a monitor laid on my chest. It was a bit fiddly for her to get it in the right direction and I was just started to worry that she would have to start again when she announced it was all over. I then had to go to x-ray to check the positioning before waiting to be told it was all ok. It’s slightly uncomfortable now the anaesthetic is wearing off but otherwise not too bad.
It was good to see the lounge and cold cap equipment, which I am going to try, before I actually start treatment tomorrow, one less thing to worry about. It turns out that Tuesday is cream cake day!
Hope this helps anyone due to have a PICC line fitted - it was a doddle after everything else and sounded scarier than it actually was. Xx
Wishuponastar, none of us know how long the cancer was there before diagnosis. I was underage for routine mammogram so only found a problem when it was about as locally advanced as you can possibly be. Try and focus on what you can control and that’s loving yourself enough to rest, accept help and attend appointments. Anything else is a bonus. Your hair shedding will start to accelerate after your second EC and that will probably be your deciding factor on shaving. Have you tried lemon and ginger tea or adding slices of lemon to water? You may need to experiment a bit with flavours to find what helps the water go down but it’s important to stay hydrated. Check out my blog for some coping ideas during chemo including mind management too: http://lifeafterlola.com/
I was diagnosed in October with invasive lobular breast cancer. Sentinel node biopsy showed spread. So had mastectomy, immediate reconstruction and lymph node clearance on 5th December. Saw my Oncologist on Thursday and starting chemo 15th January - FEC-T 3 x FEC then 3 x Docetaxel. I’m going to try cold cap but also getting a wig just in case.
I’ve got two young sons - 6 years old and 20 months. Worried about coping with them obviously if I end up feeling quite rubbish and also worried about my eldest sons reaction to my possible hair loss.
Guess it’s just the fear of the unknown at the moment! If anyone who has already started has any hints or tips to help minimise symptoms I’d be really grateful to hear them?!
Mai7, thank you. That is really reassuring. I am so happy to hear how well you are doing. I had actually been to have a Lymph node checked out in my arm pit about 12 months before I found the lump in my breast. They did a mammogram and ultrasound and reassured me it was fine (no biopsy- it did not go but my GP assured me it would be okay as it had been investigated). This node was removed with my initial lumpectomy and this was diseased. I am just very worried I am a lot further down the line!
I am on day 6 and actually slept properly last night. I am hoping this will continue now I have stopped the steroids. Yesterday, my temperature was up but not high enough to call the rapid response number but I had no energy. Certainly my worst day. Food tastes very strange. I can not longer find anything I like to drink so am just drinking and everything tastes disgusting. I was told to expect total hair loss from EC so I am now deciding when to shave it. I want to do it before a clump falls out.
LornaJ, best wishes for Monday. I have my fingers crossed for you and my toes. There are lots of treatment options which can knock it into remission. X