Hi
Just thought I would give some encouragement to anyone who is using the cold cap. I had my chemo last year, 6 sessions and I wore the cold cap throughout and I managed to keep my hair! After the second treatment a lot of hair came out and I nearly gave up, however, I didn,t and although my hair went very thin, it had thickened back up again a couple of months after my last chemo. So it does work sometimes, although at the moment I have hair that is two different lengths, it is not really noticable to other people unless I point it out.
Best wishes
Dawne
Hi
Just thought I’d say the same as Dawne. I too used the cold cap for my chemo which finished in Dec07. My hair did thin out again after the second and I too nearly gave up. However it was well worth it in the end. My hair is growing back the same colour so you can’t really notice it especially as most of it is underneath. I just can’t wait for another two months when I can have it highlighted again as it’s too dark for me at the moment.
Take care
Angela
Hello
I had my first dose of Chemo (EC) 11 days ago and wore the cold cap. It wasnt the worst thing in the world by any means. I looked like a jockey my parter said! It was changed 3 times in the hour and half. My scalp is itchy now and the pillow definatly has more than usual hair on it. I did have it cut short because I didnt want to see long hair falling out. I will definatley being trying it again and will expect more hair loss next time.
Lyn
Which type of cap did you use? I had first Epi yesterday and tried the cold cap, but they don’t have the plug-in helmets, only the neoprene ones that come out of the freezer and were changed every half hour. Went on 45 mins before the nurse prepped my portacath, but my hair is still shoulder length and xxI think it must be too thick as it hardly felt cold, except where it touched my forehead just below the hairline. It had a little neoprene Biggles helmet over the top to pull it tighter but even pulled down as tight as it would go, I could push it down from the top so it wasn’t in contact with all my head anyway, and I didn’t feel cold enough to want the gloves and scarf I’d taken, or the blanket they offered me. Some tips on here have suggested covering the hair in conditioner first but the nurse said they are told by the manufacturers to keep the inside dry - is this just with the plug-in kind? I’m sure I’m heading for baldness now 
Lyn xx
I’ve had waist-length & longer most of my life and aggressively thick. I can’t face it falling out & had it cut to shoulder before surgery (my god-daughter didn’t recognise me in a shopping centre) and am going to shave it before chemo starts in about ten days. I want to get it over with. Like Lyn, mine is so thick that the doc reckoned the cold cap was probably a waste of time, though I was welcome to try it. I’ll think about using it after shaving - maybe it will help re-growth? Anyone know?
Seabird-Sarah on another thread joked about having a ‘head-shaving party’ - which made me laugh because I’ve been considering the same thing. I think it might make people uncomfortable, however, so probably won’t. Shame, really.
I had waist length, very thick hair as well, and I too, had it most of my life. I could only bear to cut about 18 inches off it before chemo and wore the cold cap throughout.It thinned quite a bit during 4xFEC mostly on top but as my hair had been so thick it was hardly noticeable - even the chemo nurses said they hadn’t seen anyone hold on to so much hair!..I really think I would have kept it had it not been for the Taxol - I had 4 and didnt have a hair on my body by the end of it! I didn’t care by then,I was just happy to be getting on so well with my chemo(I sailed through it)Only my close family knew about the BC.I bought a fantastic American wig on e-bay which looked like a shorter version of my real hair- I think it cost about £40! It lasted me until my hair was long enough to go without it.My chemo finished august '04 and my hair looks pretty much the same as it used to- in fact it’s well on the way to my waist again!.
Josie x
Oh, it’s just horrid, and it shouldn’t be so significant, but it’s not just vanity, losing it is the badge we don’t want to wear. Mine was chest-length and my daughters, 16 and 21, cut it to shoulder length and layered it. My son volunteered to shave it to a no 4 or shorter if I want. I’m sure my cold cap wasn’t hitting the spot, and wasn’t cold enough anyway. Have ordered a £25 wig from eBay in about the style it is now and if I think I can face wearing one without it feeling like a skinned animal, I’ll go for a decent salon fitting. Got satin pillowcases and a satin sleep cap - good thing only the cat shares my bedroom! Lyn xx
In reply to palamino98, the cold cap I had was the one out of the freezer. I had 3 each time each one for 45 minutes and had to have a jockey type hat pulled over the top of the cold cap. The place where I lost the most hair was at the top of my head, when I had the second treatment and lost the most the cold cap did not feel as if it was touching at the top. I mentioned this to the chemo nurse and she said that there were different sizes and probably that one had not been big enough. after that I was constantly pressing the cold cap onto the top of my head to try to prevent a bald patch. I am convinced however that I only kept so much hair because it is very thick. After the cap had been on for about 5 to 10 minutes it did not feel cold but I think this was because my head had gone numb.
best wishes and good luck to anyone going through it
Dawne
Hello again girls
My cap sounds the same as Dawne’s.The nures said to take paracetamol before I went in. It was put on 15 minutes before I got the bolus dose of Epirubicin. I had gauze swabs pushed under the cap where my forehead is. Then a timer was put on for the nurses to come and change it again. My 2 friends tried the cold cap a few years ago One has migraines and just couldnt tolerate it at all and she lost her hair. My other friend tried it and her hair thinned but looked great.
I used to have curly long hair and the short look I think is fine. I havent a clue how to style it though! It goes from spikey punk to a sort of comb over every other day. Much to the horror of my male dominated family.2 sons, partner and dog. If it falls out it falls out. At least Ive had a go. Im going for a wig though on Wednesday.
Love to everyone hairy and none hairy.
Lyn x
Thanks Dawne, that’s encouraging. The photo my ex took of me in the little neoprene helmet will be an image etched on our memories for ages…! Crossing fingers, though I expect at least to have a bald patch in the middle where it just didn’t seem to make contact! Maxbryn, I’d bought migraine patches just in case, but really just didn’t feel anything but slightly chilled, rather as if my head had been dipped under a cold shower for a few seconds. I had the gauze swabs and timer too, I was thinking my unit must be a bit behind the times for not having the flashy plug-in helmets like salon hairdryers!
Lyn xxx
I think youre very brave Lyn letting youre Ex whip out a camera whilst wearing youre cap!! My partner came with me for the first one but can’t for the rest because there is not enough room as I have to go in the “big room” with the other
chemo people.
Next one is the 23rd. I know what you mean about the lack of contact in the middle. Maybe we’ll get away with a monk look for a few months. Thing is Im small and everyone (but the dog) looks down on me. Should be fun.
Lyn x
We’ve kept a photo record from the day before mastectomy, when I was still blue from SLN biopsy… all the tubes and stitches, the lot. Maybe one day I’ll look back and grin - I beat it, didn’t I?
I’ve told the kids there are two options: I wear a baseball cap (back to front, obviously) to cover a bald middle bit.
Alternatively it can all come out, I’ll get a snake tattooed up my scalp, and a few facial piercings.
There is much muttering downstairs about chemo turning mum nuts… they ain’t seen nothin’ yet!!
the other Lyn xxx
Glad to see everyone’s retaining their sense of humour. I am cold capping too - currently in cycle 3 (FEC). Same sort of jockey cap arrangement that you are all talking about. I find it really uncomfortable - almost unbearable. I have short hair anyway and before I started I had it cut as short as I could and still look like my normal hair. Loads fell out after the second chemo session, so much in the bath - handfuls - that I was amazed there was any left on my head. It is much thinned, particularly in the monk area, but OK for being round the house and when short people come to visit. I got a wig before chemo started but haven’t worn it yet. I wear a hat or scarf some days - it depends on the condition of the hair that day and how I’m feeling about it. But I hate having things over my ears.
Good luck everyone.
Hi again.
Im very impressed with youre photographic work. I couldnt have done that. And Im a nurse! I too had a mastectomy. For invasive lobular cancer as a day case. Operation at 8.30 in the morning.Home by 3.30. Its amazing what the body can deal with.But mentally not easy and in hind-site wished I had stayed in longer.No drains,Loads of seroma.All nodes removed. 1 affected. Hence the Chemo.
Had my operations 27th Feb diagnosed 1st Feb. Ive been a nervous wreck before any of my appointments, treatments etc and expect that to happen even with checkups in the future. At least the 1st chemo and cold cap bit is over. I see from another of forum threads you had ondansatron. I had it for 4 days and was really constipated. Im hoping they change it for something else next time.I had the usual bran, water, laxatives etc. Horrible.
My main problem now is arm movement even though I DO my exercises. I have a tight band of tissue. So another phone call to my breast nurse tomorrow who is so worth her money in gold. And Ive a stitch sticking out! Being a nurse definatley doesnt help!!
Lyn x
Wow, Lyn, how on earth did you cope with going home so soon? I guess being a nurse meant they trusted you? I had immediate DIEP and axillary clearance at the same time, and the last two drains just wouldn’t ease up, finally had them out and went home on day 11, and back three days later to have the tummy wound drained for the last time. I’d happily have stayed longer, the kids were coping and I dreaded being alone during the day. I’m not exercising the arm enough and have some cording for which I’m seeing the physio. I took Senokot last night and it worked, gently, this morning, Awful constipation in hospital needing an enema on day 5, then piles blew up, more painful than any of the surgery, so I’m desperate to avoid that again. I’ve only had one Ondansetron and one steroid today, saving the last two for tomorrow as I have to be awake to do the pm school run!
Lyn xx
Hello again Lyn and other cold cappers.
I was told my hair would fall out if I didnt wear the cap about 2-3 weeks after treatment. They had good results with the cap and why not look like a national winner for a few hours to see if it works. I must dig out a purple and red shirt and tight black trousers for the day as well to complete the look.
The mastectomy as a day case is something my surgeon does frequently and has horrified most people Ive talked to. I was booked in for a wide excision but the MRI scan results came back 2 days before with another lesion present which he wanted to biopsy and delay op by another 2 weeks. I couldnt wait that long having waited nearly 4 weeks so asked for a mastectomy. He said he could do it as day case and I went along with that.There was a lot more discussion than that really. It wasnt really that straight forward in the end. Surgically absolutlely great. Mentally no.
I too am long suffer of piles and have found a wonderful new spay (new to me) germoloids EC. You can buy it from Boots. Painfree in a few minutes.
I know what you mean about being alone during the day. I hate it as well. Lucky I badger my mum to come over and sit with me, my partner works shifts.
Love to all
Lyn x
Thanks for the tip re piles, I’ll get some. I don’t like suppositories and have found the most helpful topical application to be proctosedyl, but it’s prescription only and of course I’ve run out. My mother had hers cauterised, awful, and I so do not want to get that bad! At least Senokot is taking care of the slight constipation for now, thank goodness. I think you must have been very confident prior to your op, which surely must have helped tremendously. I’m happier about being on my own now, sometimes it’s too hectic when all the kids are about (they’re 16, 19 and 21, middle one off last week with a football injury, now he’s back at work and the eldest is home with a streaming cold, so I’m keeping a distance). The animals do love me being off work, unconditional delight in just being together!
Lyn xx
Hi Lyn
Have you had any hair loss yet? I cant tell really because I used to loose hair everyday when I tied it up in ponytail. There is some when I wash it but so far so good.
Felt great yesterday. Ate loads. Not so good today. Dont know why.Probably all the eating!!
Doing a jigsaw as diversional therapy. First one for years and years.
Youre animals, horse’s? horse? I can see how that could be diversional therapy and wonderful for you. I have a smelly boxer who drives me insane with his slaver.
We also have a cold ridden child here as well.
Back to the jigsaw. Bet its got pieces missing!
Lyn x
Hi Lyn, no sign of hair loss YET but I’m so sure the cap wasn’t in contact, I’m expecting it to go soon. I’m washing and combing it less often, and got satin pillowcases. I have beanies and buffs ready, and a couple of inexpensive but quite nice looking wigs on order. I’m not particularly hungry, though I do pick during the day. No nausea yet, luckily.
We have four ponies (well, one is a 15hh part-Arab so technically a horse), four cats, a placid snake and an even more placid Jack Russell x Lakeland terrier. Yes, they’re a great diversion, though in winter it’s a lot of work, and today the old pony broke through the electric fence into the wood behind us, and from there into the neighbour’s barley, charging up and down for 20 minutes until four of us cornered him… it’s dry, luckily, so he didn’t cut it up too much. My eldest (21) is home with a cold too, and ran out in her pyjamas and slippers to help… Good luck with the jigsaw, great idea! Lyn xx
Hello there
Went for a wig today, Going to have a short one , brown with highlights in. She didnt have one in for me to try in that style but when it comes and I dont like it I dont have to have it. She’l ring when its ready. .It needs a little bit of maintainence! A wash once a week. Hope it dosnt need styling.
A week to go before the next chemo, This week Im suppose to feel really well. I took antiemetic today and the eating has been ok. Got backache though. Always something to moan about.
Youre home sounds part zoo like. My boys would like a snake but I know it would be me who would end up feeding it dead things.
One jigsaw done, the boys hare starting another now.
Small pleasures.
Lyn x