Hi fe2020 as I mentioned earlier I started chemo this time last year. I think each department vary in their approach to the cold cap but my chemo nurses dampened my hair and applied conditioner before each cap went on. My hair was thick and I did lose some but probably kept about 60% but I could not bear the prospect of being bald and was really stressy about it. Make sure the cap is pulled down tight especially on the crown which is the most common area to thin out, also take a hair band to protect your forehead. I also had some long layers put in my shoulder length hair but Im not sure if that really made any difference. I was provided with a wig but it is still in its bag as I never used it. Good luck x
Hi Carol and all February 2020 group,
Hello. My first post as I join the Feb2020 club. What a roller coaster! Have my first of chemo FEC-T this week. Agree, having hot flashes already so nothing new!
Lots of reading as desperate to know as much as possible before I start. Having found lump end November, diagnosed in December, surgery delayed 4 hours before on the day as secondary area suspected and lymph node sent for biopsy. Tested positive which lead to CT scan, bone scan - panic while while awaiting results but finally diagnosis complete. Surgery (mastectomy and reconstructive) in January and now chemo to start with 6 cycles followed by radiation.
Any tips on how to prepare and wear freeze cap? Do you wet your hair prior? My hair v thick!
Appreciate all the past and present posts to help during this time of uncharted waters! As others have said, I worry more for those closest who are impacted just as much. Very strange to have to go through all this medical treatment while feeling fine. It has slowed me down mentally / professionally as I step back from work and I do worry a lot, not sleeping through the night as long but otherwise I don’t feel physically sick. Hope to be more physical with walks and yoga and slowing down enough to enjoy every day so much more.
First chemo this week. Acutely sensitive to anything going on within! If only we had listened a bit more earlier you think you may have caught it earlier.
Wishing each and everyone the strength and positive energy as we journey through this disease 💖 I take much strength from medicine today which has taken the fear out of diagnosis. If anything, it has given me much empathy and made me a kinder person. Thanks to all who share during this time and since to offer wors of advice and experience 💕
i don’t think it’s stupid not to be anxious. The more positive you can be the better (although that’s easier said than done at times!)
Hope it all goes smoothly for you on Tuesday and that the side effects following are minimal!
I had previously posted in the January surgery thread but then I forgot my password and even trying to think what it could be seemed like too much of an effort . However, I am now starting FEC T chemo on Tuesday 19 Feb so was motivated to remember, as there is a wealth of info and support available on these threads.
I am apprehensive but, possibly stupidly, not too anxious at this stage. I am not cold capping, for various reasons, so debating whether or not I should cut my hair shorter now (it's pretty short anyway) or just wait until it falls out. I would consider whether to even bother with a wig, and just make do with hats/scarves if it wasn't for my daughter's wedding right at the end of my chemo treatment.
I just want to start it now as the sooner its started the sooner it is done.
I have to admit that now my hair is short I like it so much I’m going to be even more sad when it starts thinning! And you’re right...people will have to tell you it looks great. The poor hairdresser was more upset about cutting it off than I was. I just want to get on with the chemo now and feel like something is being done to stop things getting worse than they already are. Good luck with your cut on Friday and with everything else to come xxx T
Hi Artycart, I am getting there thank you. I had 3xFEC and 3x Docetaxol followed by 20 radiotherapy sessions and I am now on Anastrazole as my bc was hormone positive and I am just about to start zolendronic acid infusions to try and keep my bones safe. The new hair that has grown is rocking little curls but at least it is growing. Its all doable but challenging. I walked my dogs most days even during chemo and I really think that did help. I used to drive home after chemo, wash all the conditioner off my hair and then take the dogs out ...
That’s great advice about taking own make up to look good session. I’m booked on in a couple of weeks so will remember to take my own stuff
hair definitely starting to come out more today but thankfully no major chunks yet!
Thanks Shi...would be great to hear hair regrowth tips!
I'm planning to book my look good, feel good session next week
❤️ Fantastic so many of you are donating your hair ❤️ we’ve tips and tricks for when treatments finished for helping hair growth ❤️ have you managed to book your look good feel better sessions ❤️ even if you are not a make up person it’s worth going ❤️ like I’ve said before take your own bag of make up too in case what you get in your bag you are unable to use, so you can still enjoy the session ❤️💕💕✨✨Shi xx
Hey Tracy Good to hear you found cutting your hair a positive experience...I'm having mine done on Friday, all the long locks are coming off and like you will be donating hair. Part of me feels anxious but another part feels empowered that I can create whatever look I want (and let's face it people kinda have to tell you that you look great 😂😂) I've had long dark hair for about 20yrs....time for a change I think! Good luck to all you cold capping ladies🤞😘 Sara x
Hi Daisydi, Thank you for sharing your cold cap experience. It’s all a big mystery to me at this point but I am due to start chemo at the beginning of the week so I’m sure I’ll learn quickly. How are you now and did you have any other treatment after chemo? Xx Artycart
Hi ladies, just a message to say this time last year I was just starting my chemo journey. I cold-capped all the way through and am so pleased I did. I had thick hair and although it did thin out you would never have known. In fact people that saw me didnt even know I was having chemo. I got a wig just in case but it is still in its bag as I could never get it on over my hair anyway. I used Simple shampoo and conditioner, let my hair dry naturally and was very gentle with it. I took paracetemol just before my chemo session just in case and put the cold cap over dampened and conditioned hair. It meant so much to me to keep the bulk of my hair but it is a worrying time not knowing whether it is going to go or not so good luck. I just wanted to let you know that the cold cap does work and even if you get bald patches you can still use the cap but with a theatre cap under it to protect the bald bits.
❤️Artycart ❤️ good luck with cold cap 👍 the people from my oct17 thread kept going with cold cap even though they thinned a bit but they definitely were pleased they kept on with it 👍 wonderful news you are donating your hair ❤️ 💕💕✨✨Shi xx
Same here. Mines a bob and wig is just a bit longer. Glad I decided to cold cap but equally if it doesn’t work and I lose lots I’m happy to scarf and wig
when is your first treatment?
I am now rocking a collar length bob which is just a wee bit longer at the front. I am going to try cold capping so if it thins but doesn’t all go it should be easier to manage I hope. I’ll probably go for a similar length wig so it’s an easier transition if I decide to wear it. I’ve told my hairdresser I’ll be back to get her to shave my head if needs be...xx
Hey Tracy, that’s amazing to have it cut off to donate it. Always nice when a little bit of good can come from this horrible situation!
i tried on a lush red bob but just didn’t feel like “me” and brown made me look so washed out! Funny how different hair styles make you look so different!
they did have some pink and purple wigs but nothing crazy outrageous!
how short is your hair now?
Sounds cool. I’m thinking of going for something different too... always been dark brown but blonde would be interesting for a change...but then nobody will recognise me! I’ve just got home from the hairdressers having had 9 - 10” cut off and intending to donate my two wee plaits. Poor hairdresser didn’t enjoy having to cut it off but I feel good about it now it’s done xx PS Do they even have really funky wigs when you go to get one? Tracy xx
Sorry to disappoint Ladies but went for a very simple ash blonde wig with a fringe (which I’ve never had before so little bit different!!)
Yeah this is deffo the best group...you made the right choice
The cold capping thing does seem like a lot of effort and I know for a fact I wouldn't stick to it....good on those that have the discipline though.
I reckon you could totally rock the purple afro look....pictures welcome!
Ive been browsing lots of groups but this one really sounded lovely so thought it was time to join!
Im already getting excited at the financial savings from not having to shave or imaac!!!
i gave lots of thought to the cold cap too and agonised for ages but decided to give it a go and keep my fingers crossed. I’ve been pretty bad at “sticking to the rules” tho and continue to wash, blow dry and straighten my hair with the view that if it falls out I’ll embrace it and rock a head scarf!!! Take my hat off to you for braving the shave but love the idea of having lots of different wigs for every occasion and outfit. Going to get my wig tomorrow and trying to decide between a pink Mohawk and a purple Afro 😉
Pleased you've found the group (I think we can forgive that you're a Jan starter) It's been massively helpful for me over the past few months
Hope the cold capping works out for you (love the pick!) how true about the lady garden...and the legs and armpits, silver lining and all
So, technically not a feb starter as first treatment was 30th Jan but hope you don’t mind me gatecrashing!! Diagnosed with her2 +ve invasive ductal bc which has spread to lymph nodes so having 6 cycles of FEC-T with herceptin too from cycle 4. One treatment in and thankfully been quite lucky with side effects but starting to notice hair shredding around my ears (day 15) (and from my lady garden which I’m not complaining about). Used cold cap which was ok but felt a bit claustrophobic. Next treatment in a week so see what that brings.....
really glad to have found this group to share support and experience with xx
Started treatment this week, herceptin on Wednesday and first Paclitaxel yesterday, so far so good. The only difference I've felt so far is tired from the antihistamine. I will be having a picc line fitted next week as I've got 12 weekly sessions and only 1 arm to use with fairly small veins. I thought long and hard about cold capping, I have long dark hair halfway down my back and tbh I do rather like it😊. After reading lots of stories from others I've decided not to do it, I think a combination of all the different treatments I'll be having will cause thinning so I'm gonna go bald and brave 🏋️♀️😁(I shall be having some fun with wigs though, as many colours and styles as my bank account will allow😁💃) I really love the idea of donating my hair to the little Princes trust, it makes me feel better to know I could maybe help a girl who is struggling with hair loss..it's difficult to contemplate at the age of 49, I can't begin to think how tough it must be for teenagers and young women. I've started reading a brilliant book for anyone who is interested it's called the "Biology of Belief" by Bruce H Lipton, I've found it massively empowering. Great to read posts from other ladies going through similar experiences..I'll.keep sharing mine❤😘xxx
PICC line is fine. Only had it in a week but most of the time I don’t notice it. It has been sore a couple of times but settles quickly. I had surgery to clear lymph nodes on left side so they don’t want to use that arm for bloods/chemo. Having the PICC will cause less stress on the veins in my right arm. Often it took a couple of goes to get bloods and that was when they had two arms to try. For me it made sense to have it. There are disadvantages too. I do have to go once a week to have it redressed. You can use your arm normally but they won’t let me play tennis.
I don’t know yet if I will have a PICC line but since I am having a long course of chemo maybe I will get one too. Is it uncomfortable? I will have my first cycle on Monday or Tuesday next week. I’m going to try the cold cap too but my hair is pretty long so I think having a bit cut off will help. I’m going to ask if it would be suitable to be donated as I would feel it hadn’t been wasted and was helping someone else xx
I've just seen you post. I also cold capped and had a PICC line. The hospital should be able to prescribe a waterproof cover for you to wear when you have a shower. It's rather cumbersome as it is for protecting plaster castes but it does keep the line dry. You can also buy covers on line. I bought a much more compact one which I used during a short holiday and continued to use until my PICC line was finally removed. I was on a trial so had it in for7 months. As for cold capping I did lose quite a lot of hair, resulting in 4 bald patches and general thinning so I did wear a wig and bandanas. The good thing is that my hair has all come back thick and healthy. Some of the girls in our group kept their hair long and didn't lose too much hair. The only downside is that the new hair came back curly, chemo curls, so the hair doesn't lie flat. Hope this helps. If you or anyone has any questions or want any tips just post on our thread and someone will get back to. We all chat on Facebook Messenger now but have recently started back on here so our thread should be easier to find.
Susie B, February 19 Chemo Starters xx
Starting chemo in next couple of weeks, 6 rounds of FEC-T
Look forward to chatting to you all x
Hair is what I am currently thinking about too. I am only a few days in to first cycle and I did the cold cap. I have shoulder length hair and fingers crossed I can keep it. However, the part for me is washing it. With the picc line in one arm and trying not to get that wet, I’ve thought about shorter ( but still able to pull back) just for ease. I think I am going to wait until next cycle so I don’t rush into anything and I can see how effective cold cap is. If you know it is definitely going to go then I can understand how taking control by cutting it helps.
i did a military cut and I find it easy to wear all my scarfs and no worries also when my hair starts falling
Artycart you could donate your hair to little princes trust they make wigs for children and give them away free ❤️Turn a negative into a positive 👍 I went to bob from long and gave my hair to little princes trust, it was me deciding what happened to my hair, gave me bit of control back. Suew from oct17 with me and her sister did a sponsored head shave to raise funds for cancer research, it’s your choice lovely you always do what’s right for you. Meesh on oct17 thread with me cut her hair to short bob before she cold capped and did well with it, so hope this helps you and anyone reading with your choice ❤️ My hair started shedding about day 16 after first fec then I buzzed it to grade 1, by day 10 after 2nd fec my hair was gone. Everyone is different though and hair can go at different rate. Always discuss with your units to get their guidance too 😘💕💕✨✨Shi xx
how are you all getting on with things? I have seen my oncologist today and I will be starting on Monday or Tuesday next week. Visited my local Maggie’s Centre and found it so calming and with loads of help and it really made me and my other half feel better. I had my bone scan today so hoping for some positives from that. I have had varying suggestions about my hair. Some have said to leave it long and others have said I should cut it before chemo starts. Anyone have any advice on this? T x
Hi Mini Mad
I have been to Thetford and Downham Market quite a few times, Norfolk is a lovely part of the country.
You stay safe too ♥️
Thanks for ur welcomed reply.
im one of those people who needs to know everything thats going on with me, its my way of coping i guess. Yep, second time , first was 2017, TNBC. Lumpectomy. 3 nodes, but all clear margins then 15 radiotherapies.
March 2019. TNBC again, same boob , different area. Left mastectomy and anx level 1 nodes, margins again all clear. 12 paclitaxel n 4 carboplatin plus Filgrastim jabs n zoladronic acid iv's every 6 months for 2 years.
i was determind to stay strong n positive thru the bc and i will do the same if ncessary again.
i am in a small village between Thetford and Downham Market. Been here for 16 years after moving up from down south.
so, you stay safe down there in Bristol.
mini mad xx 💖💖
Hi Mini Mad.
Try not to worry too much about biopsy results and your consultant wanting to discuss things in a meeting, it may be nothing as serious as you may be thinking. I think we all over think things when we are waiting for results, the waiting is always the worst part.
Sorry to hear this is the second time you have been on this journey 🙁.
Just look forward to that holiday it sounds just what you need and you deserve it 😊😊.
I have heard Madeira is beautiful too.
Stay safe in Storm Ciara. Stay inside and keep warm. Whereabouts in Norfolk are you? I know it very well. I am in Bristol but have spent many years holidaying in Norfolk and have family in Walsham.
Let me know how things go and stay positive
Love Carol ♥️
sorry the reduced speed didnt work for you 🥴🤷♀️
hope you dont wait too long to see ur consultant and get ur treatment sorted.
i had my final chemo last August 2019 so am settling down into ' normal ' life, whatever that means after having had bc twice now... got my first mammogram again on the 17th..
have to admit im dreading it 🤨🤨
not sure yet what i want to do for my 70th in september. Quite fancy a quiet holiday in Madeira, never been but told its beautiful 😘
just waiting on a biopsy result from my thyroid... apparently my consultant wants to discuss it in a " meeting " next wednesday with his colleagues.. doesnt sound too good to me. Whatever it is i'll just have to get on with it....
sunny here in Norfolk, just waiting for storm Ciara as we all are ... stay safe.
mini mad xx 💖💖
Have you got this info? This is what my hospital advises. If the above was the situation and you had an appointment that day don’t wait ring them straight away.
my temperature has come down and it is normal after that so decided to check with the oncologist tomorrow itself as I have an appointment with them
Hi Mini Mad
Thanks for the reply.
Yes they tried slowing down the Placitaxel drip and said this works for 9 out of 10 people but unfortunately not for me. As soon as the drip started to speed up after 30mins I then got the allergic reaction again which is why they had to stop it completely. Waiting now for appointment with consultant to see what he suggests.
Hope your through all your treatment by the time you reach the big 70 so you can have a big celebration 🎉👍
Love Carol ♥️
Artycart, I kept 3 week graphs of when I’d taken meds, when I’d done injections what my temp was, it helped me keep track of everything. You will be fine 😁 I had a positive up in the kitchen and ticked each one off, I broke it down into 3 week cycles and that worked for me, is oct17 thread had a chemo train and we 💃🏻💃🏻🕺🕺💃🏻💃🏻 Like 🤪🤪through together as you will with the feb20 thread ❤️ It’s your journey do it how you want to and any questions jump on here, use the ask the nurse facility, always speak to your bcn and your units ❤️ 💕💕✨✨Shi xx
I had my first chemo on 4 th feb and they gave me Neulastim 6 mg injection on 6th feb and now I am running a temperature of 37.1C
I have an appointment with oncologist tomorrow. So I am confused should I meet them today itself or wait till tomorrow
I am EC too. The E is red and they tell you it can turn your urine pink. In between the E and C administration I went to the toilet and wasn’t expecting it to happen that quickly. It made me laugh.
Thank you so much for your help and advice. It is really helping me so much to have somewhere to find others who can share their experiences. I have been told I will be having EC chemo. I will see the oncologist on Tuesday for a second chat and will ask about anti-sickness meds and trials. I’ve already been told I will have to call a helpline if I feel at all unwell or have even a slight temperature so will need to get a thermometer 🤒
I feel so matter of fact about all these alien bits of information that i know I’m probably going to come down to earth with a bump soon...
I fully intend to keep laughing as much as I can xx
I found the cold cap very manageable so definitely worth giving it a go if it gives a chance to save my hair. Does add additional time to session but we are used to waiting around. Cold but not uncomfortable. For me it was a bit like going outside in winter with wet hair. I had a slight headache but I have had normal headaches that have hurt more. I don’t suffer from migraines. The ache was more on the scalp rather than over the eyes. I did take the advice about taking paracetamol before. Not sure if that is what you are supposed to do.
Thank you for sharing your experience of your first chemo session. You sound as if you are feeling and reacting in a similar way to me. I fully intend to try to stay as positive and cheerful as I can and as you say just follow all the advice from the doctors, breast nurses and from all the lovely friendly people here. It is helping me so much reading everyone’s tips and stories. How did you find the cold cap? I intend to try this too. Xx
I have had my first chemo session today with cold capping. Strangely I found it a positive experience. I felt prepared and looked after. I know that what happens next is unknown as everybody reacts differently and they have to list every scary possible side effect. So will try to stay as positive for as long as I can. My surgeon commented that I was always smiling so I think it helps. Don’t get me wrong I do worry about things but they tend to be things I have control of. All along since diagnosis I have felt normal and that in itself makes you think. I continue to say I’ll turn up when they say and do what they advise and that’s all I can do. I know it’s hard to tell someone to stay positive. You feel what you need to feel but I just wanted to let you know my first session was good. Fingers crossed that continues.
Re microblading. I have been told not too, and I have to wait 6 weeks after treatment has finished to have a top up.
@mini mad wrote:
re micro blading , i would say no, not a good idea. Too close to ur chemo and rusk if
Hi artycart I was lucky my onc prescribed me perfect antisickness meds from the start, no sickness and didn’t loose my taste either. If your antisickness meds don’t work ring your unit, you will get a rapid response card. They will tweak your meds till they get right combination. Treat chemo with respect, it’s not like normal, if you get thrush mouth (se from chemo) it will need antibiotics, if your wee burns like cystitis even if you’ve no temperature spike it will need antibiotics not just a bit of cranberry juice. Have they told you which chemo you are having? It differs around the uk as to what’s given also discuss with your onc about any trials you could go on, there might be something you could be eligible for. Drink lots of water it helps flush things through and pace yourself, rest when your body tells you. There are no right or wrongs on this journey, it is your journey and everyone’s treatment plan is specifically for them it’s not a one size fits all. 👭 we are all here, breast cancer now have lots to offer you with support ask away and ring the number on here too. I kept focused on the bell in the unit and told it every time I had chemo that I’d be ringing it soon, gave me a goal. Keep 😁and always 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻💕💕✨✨Shi xx
i also had a reaction to the paclitaxel when i had it on its own n not with the carboplatin.
horrendous back spasms 👿 from then on the nurses slowed the speed at which it was going through for half an hour, then increased it back to normal. I didnt have a reaction again, hope they sort you out next time.
ive got my big 70 coming up this year .😳😳🥴🥴
mini mad xx 💖💖