Thank you for the tip on coconut oil..I will buy some…I have tried to find a scalp look good feel good but they are on the day & time I have my chemo so unable to attend on line.
@amy46 I'm sure everyone's hair loss is different. However my experience is this. I shaved my head 2 weeks ago, when it started seriously falling out. Even with the shave I still had lots of tiny little hairs over most of my head. Since then the tiny hairs have been shedding and I'm now much bolder than I was 2 weeks ago. Nothing appears to have grown for me. I haven't lost my eyebrows or lashes yet which I'm very grateful for, but I am expecting them to go when I start Decetaxel in October.
@justine1970 I have found my wig to be quite hot so good idea to wait for the hot weather to finish before doing the shave. I've actually enjoyed wearing scarves and hats though so it's not been a big issue for me.
The big thing I learnt this week is do no put shower gel or moisturiser on your scalp as the PH of your scalp is different to the rest of your body. I've now started using coconut oil and massaging it in daily.
Also, ladies, look up 'Look Good, Feel Better' and do their online workshops. This week I've done the makeup one and the nail care one. Both were great and they send you a goody bag afterwards! I'm still waiting to do the scalp care one at the end of September.
I totally understand what you mean. I had a good sob about my hair last night. I’ve always had really thick long wavy hair and I’m so sad about losing it. It also feels like I will finally have to accept that I really do have cancer once once my hair is gone. It’s very symbolic. And such a visual clue to others. I’m trying to be brave about it but it’s quite hard. None of mine has come out yet so I don’t know what to do about timings. I do have a beautiful wig that’s actually very much like my old hair. Hopefully it’ll be comfortable 🤞🤞
good idea I think to wait if it’s going to be hot this week x
I’m feeling a lot better, thanks @justine1970
I was prescribed promethazine hydrochloride which I understand is one of the ingredients in Night Nurse. It definitely works and I don’t seem to feel too drowsy the next day.
I hope you are starting to feel better and can have your treatment soon.
My doctor has given me zopiclone for sleeping but they are super strong! What have you been given?
I am holding out now until Wednesday as the weather looks hot next week so I don’t want to wear a wig in the heat! It started falling out on Tuesday so this is day 5..its everywhere though and it’s becoming annoying but it’s my last thing of me if that makes sense.
good luck with yours too..I have a couple of wigs and a topless wig (just the sides) that I will wear with hats.
thanks for your reply. It’s a bit frustrating to have a delay as apart from the cold I felt like I was handling the side effects well, but having had a big sleep I feel so much better that I can see it would have been bad for me to go ahead. It’s a marathon, not a sprint!
I’m so sorry you’re feeling so rubbish. Last this you need is a cold to fight off. I am super pleased to hear that you managed a mammoth sleep though. That’s got to go some way towards helping you fight this cold off. Bet you could’ve hugged the GP! Sarah xxxx
@justine1970 Just wanted to wish you luck with your hair shave. I think I’m going to do it next week even though no sign of it coming out at all yet. Does anyone know - once you’ve shaved it, is that it or do bits grow back even on chemo? X
My third cycle of EC was delayed today because I’ve been battling a cold for three weeks now and it’s not getting better. I’ve got antibiotics and a week off to sleep, eat all the vitamins and relax.
I’m disappointed about the delay, but wasn’t up for feeling any worse, so it was the right decision.
I also mentioned the sleep problems to my gp and she prescribed an antihistamine which causes drowsiness. Tried it last night and slept for 11 hours!
So had my second round of docetaxol and phesgo on Wednesday. They managed to not have me react that time after another pile of piriton and extra steroids up front. Nausea seems worse this time around but the tapering of the steroids has at least stopped me crashing on day 3. I made it past lunchtime!
Does anyone else get really bad brain fog for the first 5 days or so? I feel utterly away with the fairies and can’t tell if that’s the chemo drugs, the mild lack of sleep, the anti ovary injection or a combination of all 3.
I’m really appreciating having my diary of symptoms from last time, makes planning so much easier. I’m expecting to utterly crash this weekend so have basically marked the next two days as mostly bed days where I pool enough energy to cook a main meal and supervise some washing getting done.
For those of us dealing with the hair loss I found this video really helpful for learning to tie a few different styles of head scarf https://youtu.be/5yeNjDPbEZY after raiding a few charity shops I got some cheap scarves in lots of different shapes, colours and sizes. I can pretend like I have long hair again and have something to fidget with (I always used to play with my hair). For those on the cold cap massive fingers crossed for you all that it does the job 🤞
Thank you, that’s really reassuring to know. Fingers crossed for you that it contributes xx
I had my first carbo/plaxo 3 weeks ago then 2 weeks of Plaxo…then the same again for the next 12 weeks then 3 x EC.
So far have felt ok on all 3..slightly achey today but probably from lack of sleep due to the steroids yesterday.
My hair started to fall out yesterday (day 15) so getting it shaved off this weekend and putting my wig on.
I am triple negative.
Well done on the run!
@bananasatsuma Instead of taking 4 tablets for 3 days. I took 3 on day one after treatment. Then 2 for the following 2 days. I decided myself how many to take. My nurse seemed a bit blasé to be honest 😳 I kind of got the impression I could forgo the whole lot if I’d wanted to. Was far too scared to do that though 🤦🏼♀️ I’m pretty sure they go quite a way to getting you through some potentially horrid side effects. Def worth asking though for sure. They may say no but you never know xxxx
Re the sleeping. I was exactly the same after my first round. When I went in for my second I asked the nurse what could be done. She asked about sickness/nausea and I hadn’t had much/if any so she said I could lessen my steroids this time. I did and it made a huge difference to being able to sleep. Not perfect by any means but much better. Was able to actually get to sleep at a reasonable hour and then stay asleep for 5/6 hours. That didn’t happen when I was on max steroids. Sarah xx
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