Just looking for some advice/reassurance. I had 2nd T a week ago after 3 EC. I've cold capped each time and thought I was doing quite well - hair thinned, probably by 50%, but I felt didn't look too bad. I was hopeful that I wasn't going to need wig. However on washing hair yesterday I lost loads, much more than previously - I feel very despondent as understood T generally kinder to hair.
What is generally time frame for hair loss after chemo? When does it stop/slow down? When would you plan to go to hairdressers to improve style? I am having final chemo on 8th March and just want some idea of what to expect over next few weeks.
Thanks for any advice/info you are able to share.
Hi Vicky...... This time tomorrow you'll be done and I'll be just starting number 4! 😧 Had bloods yesterday, no phone call so far today so assume all going ahead on schedule.
Trying so hard with the PMA ☺️👍🏼 I'm a bit perplexed that I'm not having any interim appointments with my oncologist?!..... Not seen him since the day I signed firms the week before cycle 1! Only see the nurses (all be it the main one I see is head onc nurse who assists my onc dr)
Think I'll ask tomorrow when I'm likely to see him again? Deep breaths....... Got to be done, it WILL end!
Will be with you in spirit Hun xxxx 👍🏼 hugs xxxx
PS...... Thanks again Kate! Will keep you posted xxx
Hi Ladies - while cold capping I developed a thin patch and also lost my sideburns (have short hair so it showed) I bought a powder from Amazon that disguised any thinning. I was only £5 something compared to the very expensive ones. Lots of colours available. Don't remember the name and have passed it on to a lady at Chemo Unit.
Really did the job and I would highly recommend it. Marlix
Thanks Vicky I'll take a look. Though touch wood, I've not got any bald patches......🙏🏼 mine user leg th, very dry, thin and as it dries goes fuzzy! My parting is widened and I'm trying to Comb over it to hide xx
I've just finished 3 Fec and 3 T which will be followed by surgery. I've been wearing wigs from the start and in this cold weather its been really helpful. I stopped using the cap after the first session as my hair was falling out anyway and I knew I'd have to explain to people what's going on. The wig is easily acceptable and friends think I have fancy hair extensions. Little do they know as I haven't told them anything. My tips for wigs depends on how you normally wear your hair and if you wear glasses. I wear glasses so I find a wig with a fringe is too much on my face. So I wear a lace front wig which means the front has no fringe and gives a really natural hairline. I use a special wig glue at the front to fix the wig in place and it stays there for about three weeks.
Psychologically this is important for me as it means I don't really see my real head that often. I also ensure that I replace my wig before my fingers get too numb from the Doxetacel. That kicks in from about day 4. Does that help?
Hi guys..... Been a while since I've been in this thread. I'm cold capping, already had 3 FEC and first of three T due next Friday.
Ive shed about 50/60 % of my hair. It's thinned a lot but it's still there. I hope every day I wake that today is going to be the day it slows down or stops..... But no. More strands on pillow this morning. I've got a wig ready, which I've not been brave enough to put on.
My questions are.....
On having the T drug did this change, improve, or stay same in your opinion for you?
Have had burning sensation in set area and slight pain that started last night...... Why? Am I to expect a bald patch?!
Any tips on coping better as hair much thinner since the start?
Tips on putting wig on and keeping it on? Please xx
Thanks guys. Xxxx Tina
Hang on in there SueFag and hope you're feeling better today. It's tough but I keep telling myself that the bad cells are hopefully being dealt with. Sometimes I get forgetful and normally throwing out dates and schedules and ahead of the game!
. I've had two Tax so far and last one tomorrow then I have the op to deal with. I'm expecting the constipation again from Day 2 though I'm on Senna tabs and Buscopan to help with the lower stomach burns. Fingers are still sore whereas after the 1st session my fingers and toes felt normal after two weeks. Each night I drench my feet and hands with Diprobase which helps combat the dry skin.
Hubby has been brilliant.
Brilliant that you have your daughter as support. My stepmother comes along with me and sends me pictures of nice wigs. There are some good wigs out there and the wig consultant at the hospital gave me a wig catalogue by Browns. What has really helped me with the hair loss is the fact that I only see my bald head once every two/three weeks as the front of my lace wig is glued on with special wig glue. The type that celebs have and I can pull the hair back in a bun. No unfortunate windy moments.
Thanks I am planning to make an appointment to try some wigs on soon while I still have a decent amount of hair! I am coming to terms with the prospect of hair loss, it helps that the roots have started to go so grey and I can't dye them anymore! My daughter is 18 so isn't bothered by the fact I might have to wear one, in fact she wants to come wig shopping with me.
All the best to you too.
Thank you Pumpkin,
Had a bad day (lucky as first one really) sick even with anti sickness tabs ugh! Aching, dizzy, like a bad hangover without the fun! Had palpitations too after only one steriod in the morning. Not going in workntoday, they are all fine and I do have a computers here so can work. My partner Wolf, tells me to accept the treatment and be brave, and I must, as he has been just that!
Take care, Sue xxx
Me again tonight. I know there are different types of steroids but I was advised by the nurses to take them by lunchtime and no later than 3pm avoiding caffeine after that time as well. Once I forgot taking them later and like you was wide awake watching tv at 2am. I've been really lucky that my employer has allowed me to work at home totally since mid Oct. Apart from a few occasions I have resisted sleeping in the afternoon as I wanted to be knocked out sleeping at night otherwise I start to think negatively if I wake up and can't go back to sleep.
I struggled through the cold cap for about 6 hours when I had the first session of FECT and like you had terrible headaches. As I started to lose hair anyway after two weeks me and hubby said it wasn't worth it but I know for some people it has worked with just minor hair loss. I've even read that some people moved from FEC to T and their hair started to grow! I had already purchased three wigs in preparation which I now wear everyday and my kids haven't even questioned them.
Not been on the site for some time, been hectic this last couple weeks, self assessment time!! Felt good this last couple weeks thoug, maybe the adrenaline of work and the fact I'd got my bowels sorted !
3rd EC Fri, felt a little nauseous and the fact they were running two hours late, helped me decide not to have the cold again. My (very fine hair to start with) is noticeably getting finner on topso this made the decisions easier. Its not tge temporary loss that worries me butvthe fact thst that the Oncologist mentioned that it may not grow back! People I have spoken say this is very rare, so hang onto that. The nurse , at Christies said tgat she would email my oncologist to ket her know what I'd decided and as this is last EC, next Doxetaxal and Herceptin, she woukd ask if I coukd go on weekly chemo after no 4 , this can help hair loss, but reading below may be paxlitdaxol instead ??
As ive told you, my partner just finished stroing EOX chemo for oesphageal cancer, so been through tge journey with him. My journey different I know, today is the first day I've felt rough, bad nights sleep, aching, palpitations, I only took1 steroid as it seems to pump me up so! The nurse gave me some to take ore next session which didn't give me much confidence in next one. Should I be asking for advice on steroids. Help, feel awful, and sad Terry Wogan has died of this awful disease!
Love to all, Sue xxxx
Hi, first time poster here so sorry for it being so long!!!!! Diagnosed November with grade 3 Invasive ductal carcinoma. Had lumpectomy/mamoplasty and 3 sentinel nodes removed the week before Christmas. I was/am quite large breasted so have lost almost half of the left breast I'd guess. Looking very lopsided & wearing post surgery bras which I can fit my 'chicken fillet' into (which I get on Thursday, currently using a softie) to evens me out!! Thankfully lymph nodes were clear, I am ER+ & HER2- so based on those results I got the oncotype DX test. I needed to score 18 or below to avoid chemo, test came back with 65 so chemo was a definite. I see it as a plus that I am only having to go through 4 sessions of TC (Taxotere or Docetaxol as its also know & cyclophosphamide). Had my first session on Friday 29th, I used the Paxman cold cap. The headache & brain freeze started almost immediately when I was connected to the machine. Went prepared wearing layers & took a fleecy blanket. Had loads of hot drinks too. Unfortunately I only lasted just over an hour, I was very upset. The headache, brain freeze & putting up with cold weren't too bad in fact if it was only these I had experienced I could have continued but it was my claustrophobia which got the better of me I am sad to say. The cap and chin strap especially were so tight I felt I couldn't breathe properly and went into a panic several times. I tried relaxing, deep breathing, reading to try take my mind off it but nothing work and I kept having panic attacks and crying. I promised myself I would try the cap and I feel gutted it hasn't worked for me, felt very jealous of the lady opposite me on Friday who managed her whole session with the cap on. Feeling apprehensive about hair loss but the cold cap was not for me and I will deal with whatever happens in the best way I can. Got 3 weeks of radiotherapy after chemo, then oncologist says some hormone treatment (not sure what that is yet) and eventually my surgeon will give me further mamoplasty on right breast to "even" me out.
Thanks for reading, good luck to all you other brave ladies xx
Significant dawn?........ Meaning it's a given? Or not? I'm on last of 3 FEC tomorrow then 3 X T. Xxxx Tina
feeking anxious!! 😖
Hi guys. 3rd and final FEC due this Friday. Hair thinned and still falling but ive still got hair on my head! 👍🏼 Hoping (as I've heard it can happen!?🙏🏼) That the hair shedding slows down after FEC done.....? . I'm due 3x T too, told the cap isn't on for as long and side effects change. DREADING the thought of losing nails!! 😖 But praying I'm one of the lucky ones not to as its not a given...... Not been told of the ice gloves, so thinking it's not an option at my unit?
Love to all xxx Tina
PS....... Is it ok to use something like Nioxin during cold capping? I'm using simple shampoo and conditioner once a week. Also, first two sessions I didn't wash my hair for 48 hrs after chemo, but read now on Paxman that if you feel up to it you can wash it as soon as you're home? This might make me feel better as I hate the feeling of my hair stuck to my head with conditioner even after its dried..... Oh and the smell of the conditioner used in unit (dove... 😖) and smell of cap 😜
Thanks Yasmin for the info.,
I must admit I haven't been good at exercising and probably should havecdone so pre surgery. Are these the exercises they give you in the lit pre surgery?
I think I will need some physio before the next surgery.
Thought I was doing so well but felt absolutely yuk today, I normally dontbhave the bestvof bowel habits, but they have gone worse onnthe chemo. I know constipation Sd Chemo. I've taken meds but not to be descriptive I was in agony today. Made it to work, busy time tax retuns! Felt awful though. Trying to eat and drink plenty. Hopefully better tom.
Thanks for the advice love Sue xxxx
Red-robin - for the very slight thinning on top and for the sideburns I used a concealing powder to brush on. It was very good and did not rub off. Available in many colours I think from Amazon only cost about £5.99. There is another available about £25 but mine worked well. Just passed it onto a lady on the chemo unit.
Have you read the information on cancerhaircare.co.uk - it is amazing the amount of info there and lots on scalp cooling too. Marli xx
Hi Tina and red-robin. You are both doing so well. Try not to panic yet as I found hair lose slowed down at 3rd session . It is awful when it this and sheds , especially when in the kitchen! I wore a think headband so it did not shed all over the kitchen.
I washed my hair once a week and actually did it in the bath so that I could lie and let the water just flow through it and that way did not need to rub. Then rinsed with clean water. Combed very gently with wide tooth comb. After 3rd session definitely slowed and even started to grow fluffy new hair. Six week after last chemo it was almost back to normal. Did use some hair thickening lotion but not sure if it would not have come back anyway.
Good luck ladies. Marli xx
Hi Vicky, I'm using this system, the 'cap' is attached to the machine and at the temp when you arrive. Before it goes on my head the nurse sprays my hair with warm water, puts conditioner on my hair and gently combs it all back before placing the thing on my head and tightening it at sides and back. The conditioner us to help it ease off when finished...... I will never use dove conditioner after this!! 😖 I thought I read it was best to leave hair washing following treatment at least 24 HR but have now read it's ok to wash off conditioner when home if feel up to it. 👍🏼 which I will be doing as the smell was really getting to me for the few days post session! All in my head I know, but it's all association mentally eh?! Xxxx Tina
Quick question guys...... How often is it recommended to wash your hair after sessions and Paxman cold capping? I had round 2 of FEC Friday (so day 6 today). I washed it (and cried buckets on losing hair!) on Sunday (day 3). Should I only wash once a week? I'm using 'Simple' shampoo and conditioner.
To be honest I'm afraid to wash it for fear of it all going...... But I know I'll need to! Have apt to look at wigs Friday. My hair was, before this **bleep**e started, a shoulder length Bob. I had it cut chin length before chemo no.1 I'm putting it behind my ears now as I can't stand feeling the strands fall down cheeks. I'm wondering if its advisable to get it cut shorter? Will this affect the cold capping? Will it be more unbearable to wear the freeze helmet!?! Thanks for any advice ladies 👍🏼 Tina xxx
If helpful I thought I'd share my experience to date. I too had cording after my mastectomy and lymph node biopsy (surgery was in late Sept) but after a few weeks of doing the exercises religiously it did go away on its own. If you're finding it too painfuil or restrictive, or doesn't go away on its own do speak to your surgeon as your hospital should offer specific physio for tendon problems post-surgery. If you're in London, Maggies or the Haven can also help.
Full respect that you're working through your EC! I finished my 4th cycle of EC last week and havent been to work since just before my second EC - I couldn't cope with the tiredness and general grottiness (and low white blood count). I've worn the paxman cold cap each time and although I have probably lost 90% of the thickness of the my hair, I still have a full head of hair, albeit much much thinner. Eyebrows began to thin after the 3rd EC but according to my oncologist and all the nurses on the chemo unit I would be bald and browless if I hadn't scalp cooeld so its worth persevering if you can. It is upsetting when your hair starts falling out - for me its been one of the hardest things to get to grips with - but it will grow back!!
I start herceptin and 3-weekly docetaxel at the end of the month (with the option to switch to weekly paclitaxel if I'm finding the side effects of D too much) and plan to use the cold cap again if I can still stand it.
Good luck today, hope all goes well.
Good morning girls,
Off work today, off to christies with Wolf to sortbout his new Trial!
Following my lumpectomy and biopsy I have noticed that my tendons are very prominent under my arm. Does anyone else have this ? I know some people mention cording? Can anyone shed any light on this? I didnt do any of the recommended exercises before my surgery so dont know whether anything to do with that.
Day 4 second EC long day at work yesterday so tired , awful constipation!
Love to all Sue xxx