That sounds tough with a little one to look after. I hate not being able to sleep. I’ve got a couple of suggestions. Have you tried melatonin? And also CBD oil might help. I am taking both. You need a reputable brand to buy from. Xx
Hello all, this is my first post but started chemo on 6 Aug. I’m having four cycles of EC then 12 of paclitaxel. I’m 39 and I’ve got a two year old. My cancer was invasive ductal carcinoma, 2.7mm, HER2- but oestrogen positive, two of 17 lymph nodes were positive. Had a lumpectomy and lymph node clearance followed by second surgery to get clear margins.
So far I’ve used the cold cap for both chemo cycles but my hair is coming out thick and fast. I’ve got (had) very thick curly hair so it’s not that noticeable but if it continues at this rate I’ll have none within a week. Also got a fetching bald spot at the crown. I’ve decided I’m giving the cap a go for the next cycle but if the shedding continues I’ll stop and shave it off. I’m not going to spend the next four months dreading every hair wash.
So far for me the side effects of the EC haven’t been so bad, I’ve not had any nausea or sickness. The worst thing by far has been sleep disruption from the steroids. I take them for 3 days after each cycle and for about 5 days I can’t sleep for longer than a 90 minute stretch. I get a grand total of about three hours a night, with big gaps between each chunk of sleep. This means I’m exhausted by midweek after chemo. I’ve mentioned it to the nurses and they just keep telling me it’s normal, how does that help?
Has anyone had the same and any success improving the situation? Atm I’m on fortnightly cycles, so I can catch up on sleep in the second week but I’m really worried about how I’ll cope with weekly cycles!
Morning @amy46 of course you can join us ☺️
I’m having different treatment to you. X4 of TC. Grade 3 Hormone + HER2 - Lumpectomy. No lymph node involvement.
I had my second round last Friday and I think side effects have been slightly less this time. Although I think someone has already mentioned … Going into the second one being more aware of what’s likely to occur definitely helps. I didn’t feel too nauseous after round one so I lowered my steroid intake this time. That helped me to sleep better. I don’t feel so good when I wake up but once I’m up and about I’m fine. Energy levels are def on up again now from Friday.
Sending love. Super impressed you’ve managed a run or two 👏🏻👊🏻👏🏻 Sarah xx
Morning everyone, I joined the September starters but I was wondering if I could also come on here as it seems I am the first one to have had chemo (started Paclitaxol and Carboplatin last Friday) 12 cycles the due EC four cycles 2 weekly. I’ll stay on September too as they are a lovely group but I was hoping also for a little support from people a bit ahead of me.
I had a WLE first 35mm Tumour nothing in the nodes grade 3. Then a licap flap. I have coped pretty well with the first chemo. No sickness just feeling a bit odd and occasionally a bit fluey. No temp. Had one day where I felt a bit gritty all day but mostly I’ve been better than expected. Even managed a couple of short slow runs. I was just wondering what I might expect after second one? Could I get lucky again?
I've had 2 ECs so far (I'm having them fortnightly). I cold-capped for both of them. My hair has started falling out, it has happened really fast, it started on Saturday and I think I have lost about a third of it in 3 days.
I'm feeling ok, the worst bit for me is the Pelgraz injection, that makes me feel really sore for three days, I can barely move with the pain.
Sending my love to everyone, take care of yourselves 🐵
Well done on the hair shaving.. mine hasn’t started to come out but I am on day 15 so think it will be soon. Going to get mine done this weekend. Very anxious about my first glimpse and the meltdown that will follow.
in hope your next cycle goes better for you.
Purple world ❤️ Do let your team know how anxious you are when you go for treatment, they will reassure you and keep close eye on you during infusion ❤️ After I had reaction on 2nd T my head was 🤯 and I just wanted to leg it, but you keep 😁 think that’ll be another one ticked off and treat yourself to something nice ❤️ Always reward yourself with a treat ❤️ 💕💕✨✨Shi xx
Sending you love for tomorrow. I hope that your oncologist can make things a little easier for you this coming cycle. It’s a long old time to feel rough if not.
I am a teacher too and will likely be signed off for the duration. I had been hoping to go back in some capacity maybe during weeks 2/3 of the cycle when I’m feeling ok. But I too am worried about germs! Coughs, colds AND tummy bugs are always rife in school during Sept/October 😳 so I think probably best to stay away. Work have also been very good 🙏🏻
Thinking of you, Sarah xxx
Hi all - hope you’re all ok 😊
Its been an up and down 3 weeks for me and I go back tomorrow for my 2nd cycle. Can’t help but feel anxious about what reaction I’m going to get this time.
My oncologist is going to reduce my dose this time to try and help with the side effects so 🤞🏻.
My hair started coming out on day 12 so on Saturday I plucked up the courage to have the rest shaved off - now need to get used to rocking some funky hats!!
Ive taken the decision to be signed off work for the duration of my treatment. As a teacher I was nervous about being around the little ones with all their coughs and sneezes!! Work were very understanding and have been great.
Take care everyone!!
I had chemo on Friday (TC) and I drove to my parents in Essex afterwards from Brighton. I was fine. I wouldn’t have contemplated it if I’d felt even slightly off kilter but felt fine. xx
Has anybody driven home from chemo? Just got a small one of Pacli and due to friends being unwell may need to drive.
Thank you for letting me know…these things are set to test us aren’t they! I will keep an eye on it and mention it on Tuesday..my chemo is weekly.
Oh yes that will be tricky with young children and bugs but hopefully you will be ok..lots of sanitizer and separate towels.
My hair hasn’t started to fall out yet but I think it will be this week so I think I am going to get it shaved when it does and put my wig on. I have had my eyebrows micro bladed on in prep but need to work out how to put on false lashes!
@justine1970 i did end up also with bad nosebleeds midway through my second week. After two dreadful ones which took over 15 minutes to stop I was sent off to a&e to get my bloods checked. Unfortunately that was midway through a Saturday evening 🤣 so it turned into a 5 hour trip. I had to mostly wait outside since the triage nurse was worried that the waiting room was a hotbed of viruses and didn’t want me to catch anything else.
My bloods turned out to be utterly fine and I just had to get used to having a nosebleed every day for 4 days till my nose lining sorted itself out again.
I’m sort of looking forward to treatment 2 on Wednesday. Oncologist seems confident she can smooth out some of the side effects I had last time around and I feel way more prepared this time.
After a week of hair falling out I think what is left is choosing to stick with me into cycle 2. I look quite a bit like a slightly balding dandelion clock but I’m strangely happy with that. My eyebrows have survived this cycle I get the feeling that’ll be a blow when they give up.
I think the only thing really worrying me is what sort of horrible virus or bug my kid is going to bring home from school when that starts back up next week. 😞 not sure how to cope with that.
Good to hear you’re doing largely ok. I’m not feeling too bad now the worst of the sickness is over, and I’m managing to go out for a walk most days. No nose bleeding for me so far. I have had a bit of indigestion, maybe worse around day 6, but nothing too bad and it was manageable with a couple of indigestion tablets.
I have had a bit of aching in my back and upper legs. I can’t help noticing that most of the side effects I’ve experienced are the same I got with either pregnancy or menstruation, almost as if (for me at least) just growing up a woman provided some practice for chemo! Having said that, I do envy the older blokes in the chemo unit who don’t need to bother with a cool cap because they don’t have any hair left to lose!
best wishes and good luck to you all
Iv been ok so far too really. Better than expected but iv finished my anti sickness tablets now so will see.
Iv not noticed any bleeding yet but I do have a couple of things - I am finding I feel the need to pee alot - but I dont need to really and I have the worst heartburn/acid feeling which iv not suffered with before.
Anyone else? X
how are you all doing?
I seem to be doing okay, I had a 3 mile walk yesterday which was nice and make me feel a bit more energetic.
Today the lining of my nostrils started to bleed, I have called the hospital but they have said to just keep an eye on it unless it starts to trip. Does anybody else have this?
I had second blast yesterday. All fine so far.
Nurse said that because I didn’t suffer any sickness last time it sounds like I’m not reacting badly to the drugs so I can reduce my steroids this time. I had the 8mgs at hospital yesterday as normal. But have only taken 3 tablets this morning instead of 4 (3mgs). I’ll see how I go over next 24hrs and if ok I’m gonna reduce to 2 tomorrow 🤞🏻 I’ll def take the strong anti-sickness drugs for the 4 days though. Slept so much better last night too, compared to the first night of first cycle. I drove to my parents after treatment though and spent 2hrs on M25 so that probably aided sleep 😬 Have woken up this morning feeling like I’m pretty normal - long may it last 🙏🏻
My hair started to moult quite considerable on my crown on Wednesday and yesterday. I’ve not touched it today yet! Wondering if cap wasn’t close enough in that part?!?! It felt much colder yesterday too but maybe my head was more sensitive this time 🤔 And when I took it off I had ice on top of my head 🥶 For any using the Paxman cap there is a good FB group started by the cap manufacturer Paxman Scalp Cooling Group. Lots of handy info plus loads of ladies going through very similar to us. We’re a real mixed bunch it seems re success rates.
Sending love to you all. Sarah xx
Glad to hear u r doing ok. I habent really had much in the way of side effects yet - lucky i suppose. Jist a little tired.
I did feel a little like I needed to concentrate harder when the nurses were talking to me when I had the cold cap on but I was expecting it to hurt.
Fingers crossed it works for us both but im trying to prepare myself just incase.
Hope all u ladies stay well - lots of love
Had my first EC on Monday and had the freezing cap. The treatment went well but found the cap was very disorientating, really made me feel dizzy. Main side effects have been sickness and tiredness but nothing thats no manageable with the meds given out.
Overall it wasn't too bad and just waiting to see if the cap works also scared of losing the hair !
Hugs to everyone going through this xxxxx
Hi @Mel1978, it’s really encouraging to hear when someone is doing okay on the treatment, hopefully with the right meds we can all make it through with (relative) lack of discomfort.
@SlightlyBewildered fingers crossed all goes well for you today and the figs, prunes and cold cap do their thing! 😉
love to all xx
I'm day 2 following my 1st EC and touch wood I feel ok. Yesterday I felt completely normal which was unexpected tbh. And today so far the same. Im expecting to crash at some point but while I feel ok im carrying on as normal.
I tried the cold cap on Wednesday and I found that it didnt hurt one bit. I made the nurses check it 3 times as I was expecting it to feel like brain freeze but it didn't. So now I'm worried it hasn't worked - as I know it may not anyway.
The main thing through all this for.me.is hair loss, which I know is massively vain but I just can't help it.
Anyway, let's keep going ladies- I really hope u feel better amd we all get through this chapter of our lives together, remember this is not our full story
Lots of love xxxx
I hope you’re all doing well, or at least better than expected! I am now on day 6 following my first EC and am a bit tired and achy, but it could be a lot worse. Days 1-4 were grim with vomiting and nausea so I’ll be demanding stronger anti-sickness meds next time. I suspected I’d be vulnerable to nausea because I suffered from travel sickness, morning sickness etc, but am generally fit and healthy so was hoping I’d be one of those women who “sailed through”. Turns out I’m not.
My big mistake was wearing a conditioner under the cold cap that had a perfume to it - the smell then made me feel nauseous and I didn’t seem to be able to get away from it despite (reluctantly) washing my hair twice. I threw the bottle away as soon as I could get out of bed.
By the evening of Day 4 the nausea was under control and I’ve been able to eat, but only certain things. It’s a bit like pregnancy cravings. Trouble is, I put on a LOT of weight during all my pregnancies so will have to watch that. Let’s just say I didn’t crave lettuce.
It’s probably too late for all you August ladies but my one extra tip (on top of all the brilliant info already available) is that I wished I’d lined up a load of radio programmes, podcasts and sleep/meditation apps before I had chemo, because I was too nauseous to read or look at a screen but would have welcomed some audio distraction.
Thanks to everyone else posting, it’s very good to be in company even if we’re all here reluctantly. Very best wishes to each and every one of you - and fingers crossed that we all experience a bit more “sailing through”.
I am due to start chemo on Friday fortnightly for 8 weeks then weekly for 12 weeks of different mix cant say Im looking forward to it either but glad to get things started too after diagnosis early July then mastectomy and immediate reconstruction 27th July . hope all goes well for you and we get to the other side of this journey bright and sparkling new
just catching up on your messages.. you are all doing so well.. especially with shaving off the hair.. that idea is making me anxious.
had my 2nd chemo today which was delayed due to BP 205/110..it’s still 180/99 so they are monitoring it..sat on the sofa and pulse is 110 as I will check it tomorrow.
Tomorrow is kidney function test so will see if they will slip an ECG in!
Anyone else had this?
I hope everyone is doing ok? I’m gearing up now for Blast 2 this coming Friday. COVID test today, bloods at GP surgery tomorrow then in at 10.30am on Friday. I’m feeling ok although I def think I’m a little anxious about feeling so grotty again next week 😩 I know it will pass though and am hoping it pans out similar (if not slightly better) than this first cycle. I’m going to ask if I can have something to help me sleep during the nights I’m taking the steroids. I struggled on 2/3 hrs sleep for about 4/5 nights. I have also had constipation pretty much all way through! Nurses said to stay on Senecot though which I’ve done. Those and more prunes, figs and raspberries than I’ve ever eaten before! Any other tips for this would be greatly received 🙏🏻 I’ve lost my hair in my nether regions 😂 it just all pretty much did a runner on Day 12! Head hair is hanging on in there for now 🤞🏻but I’m on a FB group for the type of cold cap I’m using (Paxman) and everyone’s stories are so different. Lots say that cycles 2 and 3 tend to be the crux times so we shall see. I’m totally accepting of the fact that I may need to get the clippers on it at some point and I have a few hats, headbands and scarves at the ready. I also had an eyebrow tutorial with a lovely girls in Boots (the chemist - she wasn’t wearing boots 😂) last week. She used an amazing tiny brush that is like a super fine pen nib ✅✅ I’ve never done anything to my brows before so wanted to be a bit prepared should I need to draw some on 🥸 Apart from that … the time between cycles seems to have gone super fast. I’ll be half-way through with this one and that seems like a big milestone. I’m going to my parents after this one for a few days - very thankful for this 💗 but hoping I’ll feel ok to come home after 4/5 days. I spoke to the nurses about working in between cycles this time - I’m a teacher and school starts back on 1st. They recommended that I leave it for this cycle as it may pan out slightly differently due to the fact I won’t be heading into it quite as ‘healthy’ as I did the first one. Then to see how I feel after that. Weeks 2/3 I may potentially be ok to head into school in some capacity or another although I’m mindful of fact that potential risk of germs/infections may mean it’s best to stay away. I’ve not been into work since I had my operation in June and I miss it 😢
Sending my love to you all Sarah xxx
So just had the call and I have my 1st round of EC on Wednesday - got to go for bloods this afternoon.
I'm scared but glad to be getting going on the road - think its the unknown that's the worst.
I have a wig already but for me I'm finding the prospect of no hair the worst thing. I am really selfconscious of myself, always have been, so I even hate having my hair cut - i hate looking different. But this is, fingers crossed, only temporary and I'm hoping I can embrace it.
Glad you're feeling well xxx
@purpleworldmine also decided today was the day to get started with falling out as well. 😥 even though I expected it to happen it did shake me when i noticed it had begun. Wishing you strength for this latest trial.
The hairdresser that helped me prep for it all with donating my long hair and getting a wig sorted referred to it as my “hair going on holiday” which I found strangely comforting. In my case I think my hair decided to beat the traffic to the airport, checked their bags and is now browsing duty free. Kinda narked it started on day 12.
Otherwise today has marked the first day when my energy levels felt completely normal, which was great. True I still have a weird taste, dreadful acne and other oddities but I felt I could see the light at the end of this cycle’s low points.
❤️Purple world ❤️ get your makeup on if you clipper it off when you are ready to take control❤️ try grade 2 setting ❤️ rock the sinade O’Connor for a bit ❤️❤️❤️👭👭❤️❤️ sounds nuts but it does make you feel back in control, think most of us 😢 when we did it but after thought that was on my terms not BC’s if that makes sense❤️😘💕💕✨✨Shi xx
@purpleworld I took the plunge tonight and shaved my hair off! My first treatment was on 3rd August so it's been nearly 3 weeks. Up till today I'd been noticing a bit more on my comb, however this morning I decided to wash my hair and a lot came out (I had a little bald patch on top!). I didn't let it stop me from going to church but did wear a hat while out walking this afternoon to protect the exposed scalp patch!
I'd already arranged a friend who owns hair clippers to do it for me so she came round tonight. All in all it wasn't as bad as I feared (chocolate may have helped with that!!). She cut it short first and then used the clippers. We had a good time laughing about it all and then I got to try out my wig for the first time.
I'm fortunate to have been almost back to 'normal' health and energy wise this week. 2nd lot of EC for me on Tuesday though and really hoping the headaches won't be as bad this time.
We all knew the hair loss would come. Doesn't mean it won't be emotional or a shock but don't let that stop you from living your life! We can do this 🤗
Hi @MargoB, hi @justine1970 , thank you very much for your messages.
Well I’ve now had my first EC (and zoledronic acid). Not an unpleasant experience, all things considered. A few hours in a comfy chair with people being nice to me, and providing tea and biscuits. I’d already had a PICC line inserted so didn’t even need any new holes poking in me.
I tried the cold cap so let’s see how that works. I had 30 seconds of “ooh that’s nice and cooling”, followed by about 6 minutes of “ow my head really hurts, I’m not sure I can cope with this” but by 10 minutes in it was manageable, and just got easier from then on.
So now it’s just the side effects to look forward to 😬, and trying to remember what pills and injections to take on which days.
Best of luck for Monday Margo, hope all goes well and your hospital offers a decent selection of biscuits!
Same here the process from diagnosis to this point has been going on since April including a lot of waiting and I have returned to work for 4 weeks so life has gone back to normal - I start on monday with EC and then T so back on the roller coaster
Hope it goes well and let me know as it looks like we have the same regime
Good luck @Sephie
I found it much less stressful than expected.
Take a book/phone to keep you busy.
They told me 2 litres over 24hours - I think I managed more. I’ve felt much better today so am making sure I’m always toping up my glass.
I start chemo tomorrow, 4 rounds of EC at three weekly intervals, then paclitaxel. I can’t exactly say I’m looking forward to it, but the process of diagnosis and surgery has taken many months so it’s a relief to be moving forward.
best wishes and good luck to everyone else on the journey xx
Thank you for that information, I have been really thirsty but havent been so good at drinking the water today. Did they say how much we should drink per day?
You can stay in this group now you have started here. Yes I totally understand that the delay is stressful, they just have to be super careful though dont they to make sure you are getting the right treatment.
Use these extra 2 weeks to visit family and friends, sort out lots of batch cooking and things that you may have not been able to do whilst having your treatment.
Hope you're all coping. I had my pre-chemo appointment with my oncology consultant this morning, only to be told that there is a slight problem with my echocardiogram I had on Tues. I'm supposed to be getting Herceptin with the other drugs, so now I have to go for more tests to find out whether I can have Herceptin or not and the consultant has put back my chemo for a couple of weeks. I'm glad they are being thorough, but now I'm worrying about my heart as well as breast cancer. I'm feeling very emotional. I was building up to the chemo on Monday and now that's not happening, I'm all over the place. Plus I suppose I'll have to change to the Sep chemo starters group now! I know in the scheme of things I'm better off than a lot of people, but today feels rubbish. Sorry to off load on you all, but I know you will understand, and I just needed to vent.
Take care everyone xx
Amazing! Well done for both working AND sloe picking 👏🏻 Are they to be turned into end of chemo celebratory gin? 😂
Hope you’re all ok! Just wanted to remind you all to drink, drink, drink …(plenty of water!!). I had my first cycle on the 9th and was feeling quite chuffed that I wasn’t feeling too bad. Early hours of day 8 and I woke up with sickness - I ended up having to call 111 who sent a doctor to give me an anti sickness injection. Twenty four hours later I woke up to lower back and leg pain/spasms - the hospital diagnosed that I was dehydrated and prescribed meds and LOTS of water- and warned me that I’d have to be admitted for IV fluids if it didn’t get sorted.
Woke this morning feeling much better (and slept through for the first time since my first cycle).
I’ve filled up a container with water to drink from so I can monitor my intake throughout the day!
Take care everyone and happy drinking (and peeing!!!) 😂
so my first chemo day was yesterday…I had carboplatin/plaxi and feel ok! The thought was definitely worse than the treatment.
Broken sleep but I worked today for 6 hours from home and went sloe picking.
Good luck all on your first one.
Re being on your own - if you can make sure you have some easy access food options to hand. Proper meals that you can just heat up - no prep. From about Day 3 to Day 5 I think I would’ve struggled to eat healthily. No energy and felt queasy so actually cooking something would’ve been a struggle I think. I’ve since done a bit of prep and my freezer is wondering what’s going on 😂 It makes me feel a bit less anxious knowing I can just grab something and heat it up. Although I did have a Pot Noodle the other night 🙈
Sending love. Sarah xx
@ali 3.141592 Love this brutally honest account of your day. Made me smile too. The greasy hair got me. I’ve washed mine one since my treatment day. When I look in the mirror (not often) I don’t recognise it as being my hair! The greasiness has actually made it silky smooth to brush through though so every cloud 😂
I’ve had one round of chemo. First of 4. I used the cold cap and I found it not to be half as bad as I was dreading. Yes it’s cold! But I was expecting to be sat shivering whilst turning into an icicle 😂 I didn’t shiver once! It will prolong your treatment time - mainly after. They put mine on whilst I was having pre-meds etc so didn’t effect time before. Time after depends on what drugs you have I’m lead to believe - I had to have mine on for 90 mins after. By then though I wasn’t really aware I was wearing it 👍🏻
Thing is … You have no idea if it’ll work or not. Hair loss occurs around Day 17 apparently. I’m currently Day 12 so still have my hair. If you’re considering it, my advice would be to give it a go. You don’t have to commit once it’s on. Nurse can remove it at any time. You might find it ok.
I’ve included a photo. Didn’t know we could do this 👏🏻😂💓
Sending love Sarah xxx
Im starting on Friday. Wah.....
Was keen to try the cold cap but reading through the booklet I’m beginning to think it’s not worth the hassle and sounds blooming awful. Anyone else going to give it a try?
Keep in touch