@Zanna38 I got my husband to do them whilst I pinched the flesh, as the job of pinching flesh, holding device, pressing plunger etc, seemed to need more hands than I had. I wouldn’t have been able to do it myself on the 2nd and possibly 3rd days anyway given how it triggered the osteoarthritis in my hands. We used front upper thigh, alternating legs. I felt squeamish about my stomach. The thought of the injection is worse than the reality of it. It’s 2-3 seconds and then the device automatically retracts the needle (assuming you have been given the same devices). I panicked mos on day 2, mostly because I feared it would step the bone pain up even further. In fact it was successively less of a problem with each day, so if you suffer this, don’t panic - it will pass.
Happy Friday to you all. I am glad you're all feeling a bit better today.
@SusanR - I'm happy to hear you feel better now. It sounds like you had a horrible ride for the first one - that must have been so hard. I hope that the team can sort you out with meds to make it a little easier the second time round. Are you on two or three weekly cycles?
@Coddfish thanks for the advice on injections. I start mine tomorrow and I'm going to try evening. Are you injecting your stomach?
@Soggs52 I hope the injection goes well today! I still haven't fancied coffee. I have an invite to a new bar opening locally tomorrow and I heard they're serving free prosecco. I'm not one to turn that down, so will be curious to see whether I want it. Gotta say that a whole summer without aperol spritz or rose sounds kind of sad 😞
It's day 4 for me: my first day without steroids or the sickness pill, and I feel ok. A bit weak and tired but nothing much more than how I feel when my three year old has a bad night.
I'm curious what your strategies are for staying safe from infection during treatment - do you plan to go out and about or are you being cautious? I'm keeping my toddler in nursery and praying that there's no more chicken pox till the autumn. Not sure what to about my own socialising though. I went to my office yesterday and felt pretty safe there, as people have been asked to work from home if they're at all ill. It's different out and about though. I just feel so thankful I'm doing this in summer not winter
Hi @Coddfish - thank you. I'll try doing it this evening then. I'm sorry to hear about the pain - can't say I'm looking forward to that much. Did you take paracetamol or something stronger? My oncologist did mention codeine but I haven't been prescribed any.
I'm guessing I have to do the injections for all my treatment as I'm having TC throughout.
I've never injected myself before - am a bit nervous. Have got my partner on standby to do it in case I wimp out!!!
Hi @Soggs52 I went for 6pm for the Filgastrim, meaning my anxiety abated before dinner! I found the evenings ok. Overnight and morning were awful after the first two, the final three a bit better. It seems to seek out any arthritis you have which meant I could barely move my hands or one of my shoulders. I have also been getting a bit of neck tension leading to headaches. Really glad I only have them during the EC part of treatment. I also have been getting a lot of lower abdominal wind during this phase.
@Zanna38 how are you doing today? I think my steroids have worn off as have been really sleepy this morning and have felt nauseous for the first time really. The anti-sickness meds seem to have kicked in now though and I've kept snacking.
I haven't had any coffee today but will try some later and see if it tastes ok. Weirdly I fancied some tonic water yesterday but it tasted so vile I had to abandon it.
@SusanR sounds like you've had a horrible time of the sickness you poor thing. I'm glad you're feeling more yourself now.
@Coddfish glad to hear you're coming out the other side of it too.
Hope everyone else is ok x
Quick question about Filgastrim: I've got to start my injections today (day 3 for me). Does anyone have any advice about the best time to do them? The nurse didn't specify but I've seen people suggesting doing them in the evening - is that what you've all been doing?
Morning everyone, I am now on day 9 after EC#1. Have to say the first 2 days were the worst. I suffered from vomiting within hours and couldn’t keep anything down. I managed to sleep but as soon as I woke the next day the sickness started again, and I couldn’t even keep the anti-sickness meds down! I ended up back in hospital at 8am for fluids and anti-sickness injections as I was so dehydrated. I learnt the hard way as I felt so rough, but I had totally lost my head on the morning of chemo in the flurry of jitters and forgot to pack lunch and failed to eat properly afterwards. So, one thing I would recommend is eat, drink normally and don’t forget! I’m ready for next time, I’m determined it won’t happen like that again!
I was anxious about the Filgastrim injections on day 5 but they turned out to be a lot more straight forward than I expected. Would say the side effects for those were quite surprising as its so unusual, but day 6 I woke up feeling like an old lady, all my joints hurt and even my skin on my chest and back was really sensitive to touch, very odd. I have had a few days of headaches with them, but paracetamol kept those at bay. The achiness wore off by the second morning and now on day 9 I feel like me again!
I am very thankful for this forum as it nice to have somewhere to share these things and it’s really reassuring knowing we are all here for each other in this.
Hope everyone else is doing ok x
3 weekly cycle. No particularl come down from the steroids that I noticed but the injections caused a lot of bone pain, particularly the first two. It seems to seek out any arthritis you have.
Thanks for sharing @Coddfish. I'm really glad you're feeling better. Are you on a two weekly or three weekly cycle?
I feel pretty good on day 3 post EC#1. I start filagstrim on Saturday and I'm a bit nervous about that. Coddfish, did you have any comedown from the steroids when you stopped taking them?
Just wondering how everyone is doing this week? I am on day 10 of my first EC cycle. I had the last Filgastrim injection last night. I feel like I am gradually returning to normal. I have seen a lot of people say day 11 is suddenly a lot better and at the moment it feels like that might be my experience too. The Filgastrim stage has certainly been harder than the earlier days but at the moment I am feeling I can face doing this 3 more times. Hope everyone is well.
Well done for getting through #1 Soggs. It sounds like you've done really well with side effects. I'm on day 3 now and feeling normal, but I'm a bit worried about tomorrow which is my first day without steroids. I've gone off coffee entirely (sob) and haven't wanted alcohol - curious if that lasts.
How's everyone else doing?
Hi @Zanna38 thanks for your messages. How are you feeling today?
It went ok but was a long day - I was there 9 to 5. The nurses were lovely and it was more relaxing being there than I'd expected.
I had an injection of herceptin/perjeta first which only took a few minutes so that was pretty easy. I also did the cold cap but found it harder than I'd imagined - the first 10 minutes are definitely the worst and then it gets easier but I kept randomly shaking when I was having my chemo infusions despite the blankets and cups of tea. I nearly gave up half way through but thought I'd stick it out for the day as I'd done so long already. Not sure if I'll carry on with it but I'll wait and see how I feel in 3 weeks. And it is only 6 times in total.
I didn't have nausea last night but I did snack a few times to try and prevent it. I was really wired though (I think that's the steroids) so found it hard to sleep. I'm feeling much more myself today and will probably nap for a bit this morning. I don't need to take any more steroids until the day before my next treatment so am pleased about that.
How is everyone else doing? x
hi @Soggs52 just checking in to see how you are. I hope it went smoothly and you're sleeping it off now. I've felt pretty normal today so I hope you wake up feeling good tomorrow.
Hope everyone else is doing well - anyone got chemo tomorrow?
One thing @Soggs52 - I’d try to eat when you can today. I had lunch after my chemo (when I felt fine) but couldn’t stomach anything in the evening. Feels like being pregnant again (but no baby at the end of it)
Hi everyone - thanks for your kind messages yesterday. My first treatment went smoothly - I was in at 9 and out at 1. The cold cap was better than I expected - gets a lot better after 10 mins.
I felt fine till about 7pm and have been quite nauseous since then. Hope it wears off soon 🤞
wishing you good luck today @Soggs52 - you’ll be fine xx
hope those that had treatment today are coping ok this evening. Thought about you all today and sending positive thoughts for a restful nights sleep.
Good luck for those starting today/this week, trust the process…the nurses will look after you and other patients are chatty as all in same boat - it’s going to be ok. We’re all here for each other ❤️ Xx
Good luck! I think the days leading up to it are so much worse. I'm day 7 now and I am starting to feel like myself again. No hair loss yet, I have about another week or so before that happens. I've cold capped so hoping I can retain about 50%. My chemo was nowhere near as bad as I thought, I'm trying to concentrate on each stage at a time rather than getting myself in a mess. Keep reaching out on here, its helped me so much. We are all warriors! x
I’ve been off work since March when I had my diagnosis, couldn’t focus on work. I felt better to be off but been hard as too much time on my hands. The overthinking and planning (buying) has taken over for me too.
i think I’ve decided not to cold cap as for me (very personal choice) I need to accept that this will happen. I’ve got a hair appt on Thursday to have hair cut very short (currently mid length Bob) the hair loss felt massive before I found out I needed chemo now it’s the side affects and coping while living alone (other than the cats). Feel so much better now have this forum to reach out. I’ve found it helped so much already.
@crazycat I'm also on my own and trying to figure out how best to navigate this journey. We can figure it out together as I also start on the 27th. Friends and family have been amazing but it’s a real battle in your own head when you're trying to self calm and self soothe isn't it.
I met a lovely lady at the hospital today who cold capped and you would never know she lost any hair looking at her. It gave me so much hope. I'm trying to get some bits together but mindful I also don’t want to go overboard I think i'm trying to focus on the small things to avoid dealing with the big stuff. I still have moments of not quite believing this is all happening to me.
The anxiety of starting is really getting to me now, i'm wrapping up work this week to take some time off, something else I’ve dug my heels in on for too long but I have to be realistic.
@Zanna38 Sending you lots of love for tomorrow. The start will always be hard but once you’re going you will at least feel like you’re moving which I think is a lot better than where we are right now. I know you can do this x
@Soggs52 Fingers crossed for Wednesday – it’s weirdly comforting to know we will all be in and around a few days of each other - sending virtual hugs to all xx
@Soggs52 for the cold cap I was advised to get some tights (to wrap around the inner cap, like a bandana, to keep it tight. And then I've got a few Daniel Field products that supposedly help (he's great - called me directly to discuss it all). I hope you get the all clear to start on Wednesday xx
@Zanna38 I've been to see my oncologist and do blood tests today today. Fingers crossed I'm starting on Wednesday. I guess we can only do what we can to avoid infection! My oncologist told me I didn't need to isolate but to try and make sure I have quality of life while going through this. Have you got someone to help with your toddler if you did get an infection?
I'll sort out my back tomorrow. Can I ask what cold cap related things you have? I haven't bought anything for that!
@crazycat Sorry to hear you're finding the nights hard. Someone is usually here if you need anyone to talk to.
@CatalinaD I think we're all wonderful brave women!
Good luck everyone who is starting treatment or having treatment this week! x
Hi everyone -
I'm starting tomorrow. Just got back from seeing the oncologist and getting my blood tests done. Feeling ok about getting started, I guess, and reassured by those of you who have started. The oncologist did put the fear of god into me about infection - which I was already worried about since I have a toddler in nursery.
I've painted my nails black, downloaded the whole of Line of Duty on my ipad, packed a bag with various cold cap related things and a blanket. Hope I manage to sleep tonight.
I start my treatment on 27th May found out from my oncotype that this is best option to prevent recurrence. Having 3 cycles of EC then 3 if Doxorubicin. Had lumpectomy in April diagnosed in March ( had mastectomy 19 years ago for DCIS, no other treatment needed then)
echo all your feelings want to get started as the wait feels hard, although nervous about how will cope. Live on my own with fantastic friends near by but nights are when the brain over thinkings and I struggle.
following this thread to see how everyone gets on and sending hugs to you all x
Hi. Thank you for all your reassuring posts and beauty product advice. I start EC tomorrow. I still cannot decide whether to cold cap or not... I am feeling positive and trying to see chemo as an energy to make me better. This makes me think that I want to let it run through me without freezing my scalp, even if I don't believe in any scientific basis.
I do think you are all wonderful brave women.
Sorry to hear this - I was told to do the injections at night, so can sleep through pain and try Epsom salt baths if achey. Not sure if that’ll help xx
Great to hear how everyone is getting on so far. Sounds like you are having different side effects - hope you're all bearing up ok.
I'm getting increasingly nervous now my treatment date is (potentially) looming. I sometimes think the anticipation is the worst bit - though I might change my mind once I get started of course!
I went to see the wig service at my hospital on Friday and chose one most like my current short haircut. Now I'm thinking maybe I should have used the opportunity to try something a bit more out there. I might actually buy another one once I'm into treatment.
I'm feeling more tearful these days which is saying a lot as it doesn't take much to set me off. This might be amplified by the having to stop HRT!
I am entering day 6 and am finding the filgastrim stage the hardest so far. Had a really bad sleep with various bones aching, especially anywhere I have osteoarthritis. Hard to use my hands as I have osteoarthritis in both of them, also left shoulder. Also low level wind problem getting me up every 90 minutes or so. Hey ho, the first 5 days were straightforward. Only 5 days of this each cycle!
Hi All, Good to hear some of you are doing OK. I'm on day 5 now of cycle 1 and starting to feel a bit better. Felt great on the steroids, not so good yesterday. The cold cap was fine. Hair very limp but no loss yet as its too soon for that.
My appetite has stayed the same which I'm surprised about. Have to be very careful now not to eat too much lol. Anyone else been a bit teary through it? I'm vowing to come out of this and making my life better, what's the point in going through all this and not be living our best lives. Hope you all have a nice weekend. X
Its now been a week since my first cycle, I enjoyed the sunshine with my family yesterday and felt completely normal. Finished the weeks immunity boasting injections, so I now I have a week of ‘normality’.
My experience of cycle 1 EC wasn’t horrendous, felt nauseous for about four days (Saturday night hit me hardest) and had a bad belly on Weds (I think the steroids caused this). I find eating little and often helps (it’s a bit like being pregnant you can prevent nausea/reflux if get ahead of it) I didn’t need to take any extra anti sick meds….easiest foods for me to stomach was porridge, that def picked me up and a lovely avocado & chicken salad - I’ve been tasting the saline/chemo and have a strange fuzzy feeling in mouth, it’s nothing major just noticed it.
I cold capped too, it adds 30 mins at start and 1.5 hours after….but so far no hair loss (although read this starts day 14). I have a wig on standby and selection of scarfs.
It looks like a few of us are having very similar treatment, I know it sounds daunting but I’m sure we’ll get each other through it. How’s everyone feeling??? Have you all had a good weekend??
❤️Try on as many wigs as you want and all types of styles, you could be surprised and end up with one totally different from your usual style. I had one that I wore for all treatments only and another one for best. The steroid crazy shopping finger kicked in tho and I also had coloured bobs, tinsel wigs and any other one I fancied off Amazon too. Do look at luvyababes too they have great wigs not just dressing up ones and also your macy at your trust might have pre loved wigs that you can have for a donation. Don’t forget to get your wig vouchers from your trusts too ❤️ we’ve tips for helping your hair back after chemo that have been passed down the threads too ❤️ stay focused step by step you will get each other through and if your thread want to arrange a meet up day for when you are all through, our oct17 gang had a weekend in London we got a big apartment and all stayed together, gave us all something to look forward to ❤️💕💕✨✨Shi xx
Thank you @Shi for all the tips and the hugs. It helps 🙂
@Coddfish Likewise - glad to hear your first EC has been kind to you, please keep us posted. Thanks for sharing your experience it really does help.
@Zanna38 I booked an appt yesterday to get my hair cut and look at wigs, it was emotional. I keep looking at myself in the mirror wondering if it'll ever come back to what it is now. I think this waiting game is really not helping, I am imaging all the worst case of everything.
I have to try and remind myself this is a set period of time, we'll work through it then once out the other side we can get out lives back - please stay in touch on your journey and share and share alike xx
I had my first EC last Tuesday and it’s been a lot better than I expected so far. All of us are different and hopefully not all side effects are experienced by everyone. I am now on day 5 and haven’t had much more than a touch of acid reflux so far. I managed my usual Saturday morning parkrun this morning (on day 5 of cycle) although I walked it because the stitches on my portacath are still in and it’s still bit sore. I also have 4 rounds of EC then 12 weeks of weekly Paclitaxel. I have already had a WLE and SNB back in March, my chemo is to reduce the risk of distant recurrence, as even through the 4 lymph nodes were clear, I have a grade 3 TNBC, and I had vascular invasion in the tumour. I joke that they got Boris out of the office but they have to search the corridors of my body to make sure he didn’t leave behind any babies. I then have radiotherapy and I have 3 years of bisphosphonate injections.
I cold capped (it’s not too bad), have got a wig and various turbans. I am putting Polybalm on my nail beds and I also have some ice gel pack booties and gloves for when I reach the Paclitaxel stage. I start the immunity boosting injections tonight for 5 nights.
Thanks @Shi - great tips. I didn't know about the Macmillan days - I'll definitely check that out. Sadly I didn't have enough hair to donate but I agree that's a wonderful way to feel better about this ordeal!
Hey @RC24 - I'm sorry it's feeling so tough at the moment. I hope it feels better once you start and you can start ticking off the chemos. I'm trying really hard not to focus on my hair. I've always had boring mid-length hair and I cut it short last week. I had heard that short hair is easier, as it doesn't matt as much as so is less likely to tangle and all fall out. And I also figured I should try a short style as it's likely to all fall out and so this way I'll know what it looks like when it starts to grow back. We're going to have a rough old summer but it will be over and I think we'll all feel proud that we've been able to do this tough journey. And I know we'll find strength we never knew we had xx
❤️Just a quick tip some of the people who cold capped on the Oct17 thread only used to wash their hair once a week and very gently, they did thin a bit on top but they stuck with it and it worked well for them. Please do think about donating hair to little Princess trust anyone who isn’t cold capping you won’t loose you hair for nothing then and you turn a negative into a positive. Don’t forget to book yourselves onto the look good feel better day through your Macmillan offices at your trusts. You will be shown how to create illusion eyelashes and how to do your brows. An eyebrow stencil and dark brown eyeshadow stippled on over the stencil with stiff brush was my go to not as harsh as a pencil. ❤️ 💕💕✨✨Shi xx
Hey @Zanna38 I've been told the same about EC, the 12 weeks for the Taxol feel so long. Reading up on blogs sometimes doesn't help either.
It feels odd right now like nothing has changed. I look the same, feel the same. Every day I look in the mirror at my hair and it breaks my heart. Night times feel the heaviest.
For my brows & lashes I bought Revitalash & RevitaBrow - they were created by an ophthalmologist whose wife was going through BC to help her get her confidence back. I can only try. For brows I've bought some stencils and some natural lashes. Who knows if i'll use them, I've never been able to work with lashes to now, not sure why all of a sudden I think i'll be able to become an expert but it helps me feel like I'm in control or at least trying to be honest.
Hey RC24 - what did you buy for your brows and lashes? I want to do all I can to keep it all, but I am assuming it'll all go.
I really do know what you mean about not knowing. I'm anxious about getting started because I don't know what it's going to be like. But I also want to get going so I know what it is like. I see I'm about 10 days ahead of you with the same EC every two weeks - I heard that's a bitch but my nurse also told me it tends not to be cumulative (except for hair loss). She says my side effects after cycle 1 will be similar to cycle 4. The taxol on the other hand gets worse. Gulp.
HI @Zanna38 We'll get through this together.
It's the 4 cycles of EC every 2 weeks I worry about the most but as with anything a lot of this is uncertainty. No one can tell me yet how poorly i'll feel, however I'm inspired from reading some of these posts that in some cases it seems manageable, so we hope for that.
I've just bought some bits for my eyebrows and lashes, I hope they don't go but if they do I want to be prepared. It's never easy for anyone but I love my long hair 😞
Good luck for next week and know I'll be with you in spirit - the sooner we start the sooner finish xx
I've read this thread with some relief. I am starting on 16 May and was getting scared about what to expect. I am having four cycles of EC (every two weeks) and then four cycles of Paclitaxel (also every 2 weeks). I had a double mastectomy on 24 March and feel well recovered from that. I'm ER+ and HER2- and am having the chemo because my tumour was quite large. I'm a single mum to a three-year old, so a bit scared about staying present for him over the summer.
I've bought some products to use with the cold cap, and have just ordered the nail creams recommended here. Please do keep the advice and experiences coming - it's so useful and also reassuring. Good luck to you all - we'll get through this.
Yes I've got a wig appt sorted as well, part of me is in denial I won't lose my hair and the cold cap will all be fine but I want to be prepared no matter how hard it will be.
A big part of this for me is the acceptance. Of what's coming, and what will be, and I hope like plenty of the other lovely ladies on here I find I can say, it wasn't as bad as I thought but I will only know that when I start.
I do think the waiting is really hard - you can't help but imagine all sorts. And feeling anxious is quite normal.
It sounds like you haven't had much time to get your head round things either - it does take time. I was booked for surgery in April but then my HER2 came back positive so that was cancelled and then I kept having to have more tests and it seemed to take ages to get booked into chemo. I've just looked at the calendar to see when I was diagnosed - it was 7 weeks ago. It feels like a LOT longer! 🙂 I honestly thought it was about 4 months!
I'm going to the wig service today - can you do that at your hospital? I'm in denial about my hair really and wasn't going to bother with a wig but my oncologist recommended that I get one as I might change my mind. I'm going to try the cold cap too (she persuaded me to try that as well). Let's hope it's not too uncomfortable and that it works!