Hi Amanda, I'm so glad you found my experience helpful, it makes it so worthwhile using this forum! If you need any other tips/support do please let me know. Wishing you all the best in your treatment, and let me know how it goes. If you do need chemo remember it's zapping all those nasty cancer cells!! 🙂Take care xxx
Hi Gill... Thank you so much for sharing your experience and tips which has given me hope if I have to have chemo. I am still waiting to hear as I was only diagnosed last Thursday and have been told that I will have a lumpectomy and radiation initially but then dependant on other tests such as my HER2 results they will br able to establish other treatment for me.... dreading chemo as I don't want to lose my long hair (down to my mid back). I hope yours continues to work and that you make a full recovery Gill, take great care of yourself- Amanda xxxx
Hi mishy, yes I'm at the QE. I've had the rest of my treatment there so thought I might as well have it all under one roof. Although apparantly the radiotherapy is only carried out at the Freeman so I'll be there for that, and I would like my reconstruction carried out there as well as I've heard really good things about the plastic surgery.
I had my pre assesment (bloods etc) nearly three weeks ago, it's taken this long to get my ward visit monday 3rd and then straight in for chemo the next afternoon.
I'm cold capping so maybe I wouldn't of been entitled to a voucher anyway. Like you, I'm worried about the gollum look. I not overly keen on wearing a wig either, but I really wouldnt be comfortable wearing head scarfs. I couldn't stand people looking at me thinking 'she's got cancer'. I'm just not brave enough for that.
Carole, your hospital sound generous and on the ball when it comes to making sure you have the things you need. I cant tell you the hours I spent trawling the internet looking for advice. I didnt even know what a softie was until I came home with one boob and wondered how I was going to wear a bra. x
I've found my hospitals pretty generous with things. They referred me to a wig service despite saying I was going to cold cap, which meant I got £120 off price of a wig. Therefore I only paid £40. It is synthetic but the guy recommended this as it is so much easier to look after, stays in style and doesn't need any styling. I'm quite happy with it.
My BCN gave me half a dozen softies after surgery. Yesterday I had a PICC fitted and they've given me a prescription for the waterproof Limbo cover for showering. That saves me £18 buying one.
So I've no complaints on this side of things.
My chemo nurses advised me not to use a dry shampoo between washes as they contain lots of chemicals. I found I could manage anyway with twice weekly hair washing. x
I just wanted to encourage you cold-cappers; I shed quite a bit of hair two and a half weeks into my first FEC but that was really the bulk of the hair loss throughout 3 FEC and 3 Docetaxal. I kept about 40% of my hair and now, 8 weeks after final chemo am wearing headbands just to keep it and the new hair in order as its quite fluffly and unruly. I did find it very uncomfortable, although as others have said its the first 10-15 minutes in particular, and I always dosed up with paracetamol beforehand. By chemo 6 I was unsure I could face it again but I did, and with hindsight I'm so glad I did. So don't be discouraged by early hair loss ladies !
I have just finished chemo, x4 cycles TC and used Paxman cold cap throughout, as I was dreading losing my hair with the Taxotere. I'm very fortunate that it worked for me. I started with quite thick hair, and I had it cut shorter to a mid shoulder bob to reduce the weight, as advised by my breast care nurse.
Two and a half weeks after my first chemo I shed the most which was quite upsetting, and it was very matted after washing so took ages to untangle with my husbands' help, but after that it the hair loss slowed and although my hair is a bit thinner it isn't noticeable really unless you look carefully. I've since found out that the hair follicles in the growth phase are attacked and as hair follicles are the 2nd fastest dividing cell in the body it's quite normal to shed 2-3 weeks after 1st cycle!
It's really important to have a tight fitting cap. Mine was put on for 30 minutes prior to starting the drugs, and left on for 20 minutes after being switched off at the end of treatment, if it's removed any sooner the ice crystals sticking to the hair will pull the strands.
I had conditioner applied before the cap was put on, and bought an empty tiny spray bottle in Wilkinsons to spray warm water before the conditioner in my last two treatments as that's what Paxman suggest.
My breast care nurse suggested using a wide toothed comb - I got a cheap plastic one by Mark Hill in Boots which has been fantastic at detangling in the early days when I used baby shampoo as advised. DON'T!!
I was told by the Chemo unit that baby shampoo contains lots of parabens & chemicals to make it non sting, and to use Palmers, Simple or Dove. Since I switched to Palmers (I got mine in Wilkinsonss) my hair stopped getting matted & tangled after washing, felt much softer and the shedding lessened considerably. I stopped wrapping my hair in a towel turban to dry it and just pat it, and let it dry naturally, wash only twice a week.
Yes, cold cap is uncomfortable at first, but with lots of hot drinks and chatting to others, plus my husband and something to read I kept myself distracted, after the first session I got paracetamol prescribed and took that as needed. The last two cycles I took 2 xParacetamol 30 minutes before I knew the Cold Cap was starting which worked for me.
Hope this helps. I only saw a Paxman leaflet halfway through my treatment, the website is:
Good luck to everyone with your Chemo!
Hello, I'm new here. I life in Belgium and here many breast cancer patients get 4 EC dose dense (this meens concentrated and every 2 weeks) + 12 weekly Taxol's.
Normally only patients who only need to have Taxol can have an ice cap. I convinced my oncologist with recent study's to use an ice cap in my case but they have no idea how long it should stay on. (Paxman cooling machine) So they have put it on for half an our before the chemo and 90 minutes after, as they do for Taxol. Please, can any of you who has/had a combination with EC (FEC e.g.) tell me how long it has to stay on? Sue124?
I had my second dose of EC 9 days ago. I started losing a lot of hair on day 19 after washing it very gently with baby shampoo as they recommed me. And I'm still losing a lot of hair. I think I've lost already 50% evenly and I have a bad feeling it won't stop. In 5 days I have my third chemo
To anser the question: Nevertheless I think it's worth the pain, cold, headache, feeling of nausea! For me it's not about keeping all my hair or not having to use a wig. I would be enormously happy if I had a little bit hair left to camouflage the short hairs afterwards. But I don't think I'll be so lucky.
Hi, I've had 4 of my 6 EC chemo cycles and have used the Paxman system. Like others I had my long thick hair cut ear length before it started which, although a wrench, I'm glad I did. It is painful and the first 10 to 15 minutes especially so. Also this pain seems to have increased as my hair has thinned and I too have gone down a size in caps. I estimate I've lost 50% but evenly so it's not obvious to those who don't know me. The condition is not good,very dry and brittle, and I may be overdoing the conditioner As my scalp is flakey or there's residual conditioner - not sure which. Is it worth it? It has been for me - have a wig tucked away in a cupboard which I can't bear to look at despite my partner and friend telling me it's fine. I've got this far so I'm going to continue. But I do wonder after all this is it actually better then to cut it off to allow the, hopefully good condition hair, afterwards to grow. If not I'll have soft hair near the scalp with my current fuzzy stuff at the end!
Hope this is useful, Sue
Hi, I've had 4 of my 6 EC chemo cycles and have used the Paxman system. Like others I had my long thick hair cut ear length before it started which, although a wrench, I'm glad I did. It is painful and the first 10 to 15 minutes especially so. Also this pain seems to have increased as my hair has thinned and I too have gone down a size in caps. I estimate I've lost 50% but evenly so it's not obvious to those who don't know me. The condition is not good,very dry and brittle, and I may be overdoing the conditioner As my scalp is flakey or there's residual conditioner - not sure which. Is it worth it? I have a wig tucked away in a cupboard which I can't bear to look at despite my partner and friend telling me it's fine. I've got this far so I'm going to continue. But I do wonder after all this is it actually better then to cut it off to allow the,hopefully good condition hair, afterwards to grow. If not I'll have soft hair near the scalp with my current fuzzy stuff at the end!
Hope this is useful, Sue
I had 12 weeks of Taxol last year and I used Penguin Cold Caps. It worked very well for me - I would say I kept 90+% of my hair. Cold capping tends to work pretty well on weekly Taxol. I know it worked for me as I lost it EVERYWHERE else. It's a pain in the ass - it makes the chemo day long and it caused a lot of neck and shoulder pain in my case. But for me, it was well worth it. I did all of my normal activities and felt mostly fine. And after the 12 weeks, it was easy to move on. Hope that helps. Best of luck!
Cuteboy, I cold capped for my first FEC treatment and by day 19 I started shedding significantly and developing a thin patch on top. The cap was well administered and fitted. It gives you 10minutes of brain freeze agony and then numbness which is easy to tolerate. I didn't cold cap again for my next 2 sessions as I personally felt it was too much pain for too little gain. I also decided I wanted to make sure the chemo gets into every cell in my body, especially since the lymph fluid runs under the scalp and I am lymph node positive. I had my 3rd FEC a couple of weeks ago and still have about 40% of my hair (I had it all shaved off after 2nd FEC which makes it easier to manage with a wig). Hope this helps. X
I used the Paxman 1st one March 2nd 2017 No 4 was May 4th I am having the operation June 16th I found the cap quite horrid very uncomfortable and gave me a splitting headache I have lost 30% of my hair. not sure if I need more chemo after operation .
Before using the paxman I had my hair cut from shoulder length to just below chin length which helped a lot as my hair was heavy and thick . I bought shampoo and conditioner called Korres ( you can buy from amazon ) expensive but worth it . I found the best way was to comb my hair gently with a large shower comb ( wilko £1) when it was dry . when washing dont rub in and the conditioner I watered down just pat it gently then rinse off . Pat with a towel then drape this over your shoulder leave hair to dry naturally. I only wash my hair twice a week.. The outcome is a bit wild looking but at least I have some left . I woud use the cap again. Hope this helps anyone who is like me wanting to keep their hair . There is no guarantee but at least I have tried .. Good Luck Anne x
Thanks for your previous advice. I have had 3 rounds of FEC and 2 rounds of docetaxel, so one left to go on 22nd June. I have lost 80% of my hair despite using the paxman cold cap. The nurses used gauze particularly on my crown and a blue scrub cap to prevent ice damage to my scalp. I moved down from a medium cap to a small cap when I started docetaxel as I guess due to the hairloss it now fitted on. I am spurred on to continue with the cold cap as there is a 6% risk of permanent alopecia with docetaxel, but the head nurse at the chemo day unit was unsure whether I should continue. I am definitely going to try to manage one more time if I can. I had abit of a headache by the end of the last session so I was relieved it was over, I am hoping in 2 weeks I will feel up to it.
I was wondering if there is advice on supplements that will help hair growth, the registrar mentioned zinc and selenium.
Any thoughts appreciated, I too might ask about the tramadol if it doesn't make me too sleepy.
Blue2 you can wash your hair as normal from now on. Don't colour it for at least 6 weeks after you last chemo.
I am getting my existing hair trimmed ever couple of months until my regrowth catches up. To disguise it I use a topper if I am going anywhere have a look here:
The best one for me is the Jon Renau Top Notch but it is expensive - worth it because I like myself far better when I am wearing it plus you don't have to pay VAT if you tell them you have had chemo.
This one is also good but cheaper:
http://www.internetwigs.com/toppers/medium-tp-top-piece-.html same thing with the VAT