my mum is due her 2nd round of chemo on Wednesday and her hair has started to come out, so she asked me to shave it last night. My mum didn’t want to go to a hairdresser but I think the best thing would have been a mobile hairdresser, as it was actually harder than we thought as her hair was thick! So took a lot longer than anticipated but there was some cries and laughs. She had that hair pulling pain but is now gone this morn. X
I think either 2 headwear are suitable, if you google sleep cap they are quite cheap. I’ve heard a silk pillowcase is also a recommendation x
my mum had the injections for 7 days, she only got some bone pain but paracetamol worked x
can I ask what headwear people are wearing around the house and at bedtime? I am thinking bamboo beanie or cashmere?! Having held on to my hair during the first cycle it has now decided to leave me ahead of round two today. I have thick curly hair which is now a matted mess and distributed all around the house 🙄. I’m not quite sure how I’m going to deal with it today. Did anyone out there shave their own off or did you go to a salon.
on an aside note I too had the injections and suffered the bone pain and whilst it was awful I found paracetamol worked for me and quite quickly too. I’ve been advised to take paracetamol in anticipation (assuming there’s no associated temperature) rather than wait for the pain to come x
i had neulasta injection
after the docetaxel part of my chemo. They aren’t given routinely as they are very expensive ( think over £600) but it is better as it’s only the one injection instead of the multiple ones!
Unfortunately I did find it gave me bone pain so I took painkillers at the same time as I did the injection the next time and it worked a treat.
i did get awful nausea on ec and was given akynzeo to take an hour before and cyclizine for after which didn’t get rid of it but did make it much better.
on docetaxel the antisickness was given intravenously before the drug and I took cyclizine once home. Again it didn’t completely go but was bearable.
I also found strong lemon and ginger tea with honey was the only drink I could taste and it made me feel better too.
good luck xxxx
Thanks for getting back to me 😊. They gave me aprepitant today and have those for next 2 days too. It's the heartburn that's making it worse aswell. I just have to have one injection and as I have to go to hospital tomorrow for Ultrasound ( they think I have fibroids in uterus, to make my life even more pleasurable) and an ECG so the nurse is going to do it.. my fear of needles is huge and I am a big baby 😂. Think they are giving me jab as have kids living at home aswell and they are full of the cold...
Glad to hear change of meds helped you. Yes I heard that the bone pain is because the injections are working! Sorry to hear you have had problems, with your blood count, hopefully tbey will sort it out soon. 😔
Welcome aboard 😊😊.
A quick google told me neulasta is similar to filagastem (sp?!). I have had the later in both my october chemo rounds as I'm really struggling with my nutrafil levels. I was low before I started, so was given 5 days worth of self-administered injections the first time. Still went severly nutrapenic and only just recovered levels in time for round 2. So 7 days worth given this time.
Are you to self administer? I really hate doing this... but I think it's a mental thing as the reality isn't so bad. It doesnt really hurt and is quite easy. I get a slightly greasy feeling about 20 mins later but have been lucky and had no bone pain! But then they don't really seem to be working, and I have wondered if that's why I'm getting no bone pain... because no neutrfils are growing. That of course is pure conjecture, probably fuelled by steroid induced craziness, and far too much time to think 🤣🤣
I was also really sick with terrible nausea round 1. But they adjusted my antisickness for round 2 and it's been easier. So make a fuss ❤❤. In fact make a fuss now, because they also amended my meds part way through and it helped.
I have just joined this group and squeezed into last day of October. I started my Chemo today. I'm her+ so long year of chemo ahead of me.
I am feeling really sick despite being given loads of antisickness meds. I was told to get an injection tomorrow, Neulasta? and have read that it is really common to get bone pain. Anyone had any experience?
Curedars I too have just been prescribed cyclizine tablets as it worked for me in a and e. Just trying to get as much fluid in as possible which I'm starting to manage this afternoon luckily so I hopefully won't need another drip.
Hope everyone else is doing as ok as possible xx
I'm 41 I could even ! And the fatigue has completely flattened me. Yesterday I had so little energy move my hands to hold a glass.. had to be given water! My jaw was slack with fatigue, and although I dont think I actually dribbled, I wouldn't have had the energy to wipe it if I had.
I'm a bit better today and have managed to sit up for a couple of hours.. but I'm still flattened by it.
It happened to me on round 1 too.. and it did start to ease by day 10. Peaks day 6 for me, which i think is when the steroids leave my system. Think i emotionally crash from them too.
Sorry... touched the keyboard...
as i was saying... ahem cough !!
i think our bodies adjust to the treatments, the more we have.
i had 12 weeks of Paclitaxel and every 3 weeks Carboplatin.... or maybe its because we learn how to handle our side effects more efficiently.
good luck and take a day at a time.
mini mad xx 💖💖
Hi 68 year old !!!
i'm 69 so i can definately relate to the tiredness/fatigue.... its completely overpowering isnt it 😬😬 but i believe as you have your treatments, that our bodies k
Had 1st round of EC on 21st Oct and this is day 10 of the cycle. It is the first time I have had the energy to report back. Although I have not suffered the awful vomiting some of you have, I was completely overtaken by nausea and heartburn and the fatigue has been indescribable! On day 8 I was given Cyclizine and Lansoprazole and everything improved. Have started eating small amounts again. Glad to be back in the land of the living!!! I wonder if my age-68-has any effect on how long it is taking me to ‘bounce back’? Thanks.
ive just seen your post regarding being investigated for possible lung mets, I’m terribly sorry - you think the worst words you hear are “you have breast cancer” but I think as time goes on there’s a lot more to it... how did your biopsy go? I hope whatever the outcome you are given the best plan and there are so many more treatments becoming available now so who knows what the future will hold in regards to treatments! I go with my mum to every appointment. she, like you say, is feeling horrendous waiting and not knowing.
thank you for your kind words and please be assured you are surrounded by lots of support x
sorry to hear your mum’s news. Hope it’s nothing ominous. These times spent waiting for tests and diagnosis are the worst, so grim. Once you all know what you are dealing with and have a plan it will probably feel a bit better. That’s what I am hoping. Your mum must be so glad of your support, but it’s hard on you and all our loved ones. Thinking of you
im sorry to hear how bad you felt on your first round of FEC! Like others have said, please be assured that they are now aware of your side effects so will try everything to get these under control for next time! I am also glad you’re feeling some relief now. Please rest up x
a small update as my mum is now 14 days post chemo cycle (herceptin/docetaxol/pertuzemab) and side effects have been minimal! After struggling with Lymphedema due to cancer in the nodes, the swelling has started to go down after getting progressively worse for 8 weeks!
And some not so good news.. after something showed on her ct scan in liver, after an mri she was told ‘theres something there’ but it cannot be confirmed until a specialist has confirmed and then a possible PET scan. This is quite a shock as she only initially got diagnosed on 16th September.
we’re all keeping positive and have a lovely Wednesday x x
That sounds horrible Rubyblue. So sorry. Good to have got help and here’s hoping they can make sure you don’t struggle like that again!
Oh Rubyblue, sending so much love ❤❤
Dont lose hope... I was pretty sick with my first FEC, they changed my sickness meds this time and got it under control. No pukey pukey at all for me this round.
You must be so pleased to at least be at home.
Let us know how you are in the morning, we are all here for you xxx
Ruby blue 👭sorry to hear you’ve been 🤮 they will tweak your meds till they get right combination so you did right thing not trying to battle through and getting yourself in 👍always do that. Also some ladies used travel sickness bands which helped so maybe you can try them? My meds were akynzeo and metroclopromide and I had no sickness or loss of taste during chemo, so maybe worth a mention to see if they could try you on that combination? I know different things work of each of us, but just wanted you to know about this combination. 💕💕✨✨shi xx
Evening. Just a quick update from me- had first FEC yesterday (can't believe only yesterday) and unfortunately not plain sailing for me. 2 hours after the end of chemo I was really sick and faint and then so so sick all afternoon / evening (I'd had all the sickness meds including emend and it didn't touch the sides). Also numbness in both arms and a bit in legs so ended up in a&e as the chemo assessment unit was full- so from 10 last night until about 5 today been in hospital having cyclizine (amazing by the way) and a drip as my sodium was low. In a way I'm not surprised as I was told if you have bad morning sickness you're more likely to be affected by the sickness and I always respond to any meds with side effects! I'm back home though, in my own bed after hours on a trolley and touch wood at the moment I'm feeling ok. I can still call the district nurses out as well to give metroclopromide as well xx
So sorry to hear how FEC is affecting people, and a little anxious as I will move on to that in January.
I wonder if you have all found Dr Liz O’Riordon on twitter - breast surgeon who had triple negative breast cancer and a recurrence. She and a GP who also had bc (Trisha Grrenhalgh) have published a very practical, non scary, helpful book “The Complete Guide to Breast Cancer”. Very good. One of the things they recommend for when undergoing chemo is to drink two litres of water a day and to drag yourself out for a walk every day. Hearing your experiences it sounds like every day maybe way too ambitious! Still i think the book is helpful.
i am trying to live in a positive emotional space atm. Wishing times of warmth and hope for everyone today.
I'm 5 days post second FEC. My first was quite similar to yours ... sickness built from the off and was then very sick night 1, also sick night 2, then nausea for at least 5 days. Couldn't eat much at all, losing weight. I had breathing problems so also ended up in a&e early on... was fully tested for pulmonary embolism but thankfully not. white blood cells up, so given antibiotics. Then the following week I had two trips to the chemo helpline at hospital with uti symptoms and throat symptoms. Severly neutrapenic, more antibiotics. Everything such a drama. Rashes, constipation/ diarra and the list goes on. For the first week I struggled to move, couldn't lift my phone some days. By about day 10 I think I managed to a 10 min walk and got stronger from there but not back to normal. I managed about 30 mins kickboxing by the end of 20 days. My onc is contemplating reducing the dose because I have been hit so hard, but the good news is that he can feel the tumour has softened.
This time I stuck with same dose, but better antisickness. I also drank alot more water, and I ploughed into liquid iron and some meat as I was borderline on my iron. I havent been sick and been able to move about the house, noticeably brighter than last time. Ive started losing weight again but can at least eat a little. I have had breathing problems again, but because I know it's a reaction to the FEC, rather than a complication it's not so scary!! I have managed to sit up at the table for about 40 mins today (🎉🎉🎉) so it's certainly not a breeze. But definitely keep a diary, tell your onc everything, and 'make a fuss' because they can help.
Ah Kath it sounds like you’ve had a terrible time so far , I’m 11 days post 1st EC and feeling pretty much back to normal now. I would write a diary of all your symptoms and take it to you’re appointment before the next chemo so they can tweak any meds you may need. A lady I met had similar problems and her diary led them to realise she was allergic to one of the anti sickness meds and she was fine for the rest of her cycles .
Take each day as it comes and try to eat something, I made some homemade soup before I started so knew I was getting some goodness each day, I also drank loads and loads of water which others have said helps with side effects and I must say I’ve been very lucky so far , apart from a muzzy head I’ve been fine .
Be kind to yourself, and take care xx
First fec on friday gone, chemo nurses were lovely and it went without a hitch, got home at lunchtime, from 4pm felt really sick and was sick several times and temperature playing up so off to A&E. white blood cells in blood were raised so put onto antibiotics and given new anti sickness jab, which worked 🙌🏻🙌🏻👏👏. Saturday was just really tired little sickness feeling, but felt wiped out washing a sink of dishes. Had a bath and spent most of the day in bed. This morning feeling ok, hardly managed any food from friday, just smoothies/yoghurts & half a slice of toast. Going to try and go to watch my son athletics training at lunch, just sitting and getting some fresh air. Saying that my stomach may have other ideas as I have a lot of rumbling going on and diarrhoea 🙈🙈 sorry TMI. Was everyone else similar after there first dec session? Hope you are all getting there. Thinking of you kath x
👍 there is a good tutorial on YouTube a lady with alopecia gives great tutorials about using powder and small angled brush to create brows and how to do the eyeliner so it looks like illusion of lashes, might help as alternative if you need it. Have you got your look good feel better sessions booked with your Macmillan centres? Great tips and tricks on there 😘💕💕✨✨shi xx
I have messaged my breast cancer team and I'm waiting for a response 😘
Please check with your teams about microblading during chemo, not worth risking infection ❤️Please keep safe 😘💕💕✨✨shi xx
Please check with your teams about microblading during chemo, not worth risking infection ❤️Please keep safe 😘💕💕✨✨shi xx
I was told I kissed the boat with microblading because of risk infection... so do look into it carefully 😘😘😘
Thank you for everyone’s kind thoughts.
Emzlew - you are absolutely right to adopt a fierce attitude about hair-loss. We need to look after us, not worry about the impact of how we look on strangers! Go you!
And I sympathise with lack of sleep Claire. Waking up in the night is a lonely experience. I am using podcasts as distraction. I have found a very dull sci fi series works wonders for me. Anyone got recommendations for when I finish it?
I'm in the midst of no sleep and shedding like a Labrador so I won't hang about today.
I had microblading done a few weeks back just before I started treatment. you can absolutely go ahead and do it now. It just might take a little bit longer to heal than usual. Mine are fine with no issues. I went to people that specialise in hair loss because of this **bleep**ty situation.
Thank you everyone for picking me up in the past day or so. I know I have literally nothing to moan about given what some people are going through but I know you guys get it.
Im thinking of you all, keep talking and I'm keeping everything crossed for you guys still waiting for biopsies and results.
Hello lovely ladies ❤️
Had my second round of FEC yesterday, happy to report no sickness this time for me either...so far. 💪
Rubyblue.. Once you get started you will feel better. The whole wait and build up is the worst part! You will feel better knowing you have started the treatment to evict the A****OLE that decided to join you uninvited!!
You've got this!! 💪🥊
I felt so much better when I shave my hair. I spent 2 days fretting about my hair and that I had things to do before I was ready to lose it... The day before I was so scared to have a shower as I knew it needed washing but I didn't want it falling out whilst I was home alone with the children. I need to wait until my wife was home..
I just got fed up with feeling so worried about it. Sunday I washed it and it matted into a dreadlock instantly. I could feel it happening as I washed it? It was so bizarre. There was nothing to do other than brave the shave! I had all my children with me when I did it and my wife filmed it so I could send it to family and close friends. At least it's less of a shock for them when they do see me in all my bald glory!!
It felt so liberating to do it!!
I've been wearing beanies on the school run but I've been braving shops and hospital appointments without any cover. It's not our fault we are in this position!! If people don't like it then bloody look away!!
We are warriors 💪❤️🥊🥚👨🏻🦲
I've been thinking of you Kath everyday and hoping for a good result. You cry as much as you need to!! ❤️❤️❤️❤️
getting started with chemo is so daunting but i think we all found it better once we were over that first one and could feel the relief of getting treated!
Sorry to hear of people’s challenges. It is tough, in so many ways.
I have been so tearful the past few day. Biopsy on lung Tuesday. I just dread the outcome.
take care all
Hey rubyblue ❤❤
So I'm doing ok. 3 days post 2nd treatment... not been sick this time 🎉🎉🎉, but slightly more wiped out this time. I'm expecting the FEC train to hit tomorrow. My lungs have been affected again, but as I was fully tested last time I'm not so worried this time.
Sorry to hear your hair is getting to you claire xxxxx mines all gone now, but it does feel lovely... like a little velvet mole. That was very insensitive of your friend... so much of other peoples reaction is about them I find! A friend asked me what stage I was, and when I said 3 ( I think?!), she burst into tears and I had to comfort her!
I think we all know in here that we would rather lose our hair than our lives! I think of it as a stripping back, a paring back of the irrelevant. I just know the stronger me will emerge from the baldness... more connected to my true self. Well, on good days anyway. Other days I think what's the bloody point!!!!
Stay strong lovelies xxxx
im in a good week but still get wiped out. Don’t feel down. It’s all just a phase that will be over as quick as it started. Have you made any plans for sans hair? I’m with you. I’m dreading it too but need to embrace it. My husband looks better in my wigs than I do 🙄!!
Welcome ruby 🙂
Been having a crappy day because my hair is starting to go. Really been dreading this bit. A so called friend said 'i'd rather die than lose my hair' in a message yesterday which just put me on a downer.
Also doing the washing wiped me out today. Stupid really.
Other than that all ok here. How is everyone else doing?
Good luck Ruby. We have got your back and all feel the same xx
how are people getting on with hair loss? I did the cold cap and still seem to be hanging on in there although I’m only day 15. Other areas are departing rapidly 😳 if you know what I mean.
Hello ladies, well I wasn't sure if I was going to make it into the October group but I've just snuck in - starting on Monday with first FEC. Nervous is an understatement although pleased to be getting started!
Morning ladies!!! Hope you're all taking care and staying well ❤
Just following on from posts re: dry skin. Randomly as an eczema sufferer my chemo has totally cleared my skin 🤷🏼♀️ weird although I'm advised that it will likely return following treatment 👎
Any hoo . Back to my post. I know at this particularly unpleasant time we need to pamper ourselves however let's spend our pennies wisely.
Aqueous Cream - cheap, unscented moisturizer that can also be used in the bath and shower as a cleanser ( just be careful getting out as it can get slippy 😂) also great for keeping bald heads supple. Don't forget sunscreen/facial moisturizer with decent SPF tho if going out uncovered !!!!
Available from most supermarkets for £2-3.
Thank you very much Lou. I will try that, it sounds exactly what I need. It’s very kind of you.
Welcome to the group. I dont know much about Iberance, but good luck with it - do let us know how you go.
Both you and Kath must be finding it hard to know where your brains can go to find peace with all the talk of spreading, new treatments, and changes of plan.
Have you read Exhart Tolle's The Power of Now? I listened to it on audiable a year ago and it's my favourite book. And that was precancer! You could read it hardback, but the beauty of listening is he reads it himself and has a beautiful meditative voice. If you have never used audiable I can gift you the book for free. It's all about finding peace in the present and how to not dwell in the past or the future.
The Power of Now: A Guide to Spiritual Enlightenment https://g.co/kgs/ciXtAZ
With much love, from steroid-frenzied, sleep-devoid, Lou.
So much going on for everyone. This is a tough ride.
welcome to this lovely supportive group Bev. Very sorry to hear you have found yourself with bc a second time. have primary aggressive triple negative and now being investigated for lung cancer. Shocked to my core. Had a PET scan yesterday and doctor says balance of probabilities say it’s lung cancer but we need a biopsy. So I have to miss chemo this week to build my white cells and protect against infection from biopsy. I don’t know the chemo you refer to - ibrance? Is that for breast and lung? Let us know how it goes. Very much thinking of you
Hello everyone,I am starting Ibrance orally tomorrow,I have been on Letrozole for the last month and seem to be ok aside from hot flushes.This is my second time with BC,the first was back in 2002 and I had a lumpectomy,removal of lymph nodes,Radiotherapy and Tamoxifen and was discharged after 5 years.This time I had gone to my GP with pain under my left armpit and shoulder,she sent me for a mammogram & ultrasound.Something was picked up in the same area of the left breast I had 17 yrs ago,they did a biopsy then and there,which came back malignant.The original plan was to have a mastectomy,before that I had to have a C T to see if it had spread.Just got my head round that only to be told it had spread to my lungs,shock was an understatement.
This was in August,I have since had an MRI,Petscan & an EBUS where they took biopsy’s of the lungs,it has been a traumatic couple of months.I don’t understand all the abbreviations used on here but am sure I will be an expert soon!I am terrified of starting
the Ibrance tomorrow which is why I am writing this to get as much info as I can.
Thankyou for reading my story.
Just do what’s right for you to get through ❤️ Like I’ve said before we all do it our own way, there are no right or wrongs ❤️ When any of you switch to the t a good cream for the dry skin you might get is udderly smooth with extra urea from Amazon ❤️ This was tip passed onto us, so passing it on if anyone starts to struggle with dry skin ❤️ 💕💕✨✨shi xx
Great point about the does shi. Thanks!
I also have been eating beef this week.. I'm vegan but decided my health came first during this period. So beef chicken and fish are in for chemo period only. My iron is low, and I'm on omeprazole for digestion problems which lowers b12. So beef it is, dont even enjoy it!
Purple trunks ❤️ Just remember your lower dose could be someone else’s full dose, it’s all tailored specifically to you. I had my dose reduced after 1st one put me in casa nhs, so after 💩myself, I was scraped off the ceiling and took the lower dose ❤️ Thought getting some in was at least getting some in 👍 I went on life Mel honey and a steak a day too after 🤣😂🤣😂 and kept out of casa nhs for remainder of chemo 👍 💪💪💪 you are all doing amazing ❤️👭❤️💕💕✨✨shi xx
My second FEC went ahead today. My onc is concerned at how strongly I have reacted to chemo, particularly my neutrafils levels. They are upping my antisickness and bone marrow growth injections, but if I respond as sensitively this time they will have to lower the chemo dose because they have to balance my health and actually get me through it. Really dont want a lower dose!
The excellent news is that he felt the beastie and thought it was the same size but less dense. I also think it feels spongier! Which means it's working 🎉😭😊. Feels like the first good news since dx (just like you leaw) so I'm taking it and nailing it to the forefront of my mind.
Knocked for 6 this evening, worse than last time but hopefully the sickness wont kick in like last time.
Went for my look good feel good this avo.. was a lovely thing to do. Definitely book in if you havent yet ❤❤
Yes it is a relief, feels like the first bit of good news in the last 6 weeks. I’ll keep in touch with how the picc line goes tomorrow.
hope-everyone else is doing well today 💪🏻
Leaw, must be a relief about the MRI results and that lymph nodes are clear. You can now focus on starting treatment 🥊 🥊! Good luck for Friday x