Thanks for the really helpful comments - very encouraging 
Yvonne, I have PMād you too.
Iāve just had 2 Paxman Cold Cap FEC treatments and was the first person to use the machine at the hospital I go to. The first session I was advised to have a couple of paracetamol before hand and found it quite painful and had a sinus type headache fo about 3 days afterwards. No hair loss until the day before my second treatment. A friend in Oncology advised me to have a hot drink with me as they put the cap on and to hold a mouthful of hot liquid for as long as I could before swallowing. Result, only minimal discomfort and no follow on sinus ache. Hair is now coming out quite freely but it still looks as if I have short styled hair so Iām happy at present.
Trying to only wash my hair once a week and to brush it once a day - hats are my friends!
Hi girls I have worn the cold cap for all of my last 7 chemos (1 left whoop whoop). I had very fine hair but lots of it and although it has thinned slightly itās not at all noticeable. I have used any old shampoo and blow dried it. I had to have it cut a few times along the way too!
I was motivated to try the cold cap because:
My onc muttered under his breath that I would need grit to use it (Iāll show him)
My ten year old was mostdistressed to think I would loose my hair (he wasnāt bothered about me loosing a breast 'itās not as attractive as the rest of your body")
I didnāt want to pay Ā£60 for a wig
I wanted to stop people putting their heads on one side
It worked really well but it does hurt and is uncomfortable and your in the hospital for hours longer. If I knew what I knew now I would still weather the pain and inconvenience as the benefits to me have been worth it. But it is horrible! If you have sufficient motivation give it a go.
Anyone got any tips for what to wear with thinning hair - I have a couple of nights out coming up and want to look good, NOT wig (I am not letting the old bag in the wig shop win that one yet!). I have plenty of hair everywhere except on top and top of the back of my head, not bald but very thin and obvious.
Day times, I wear baseball caps or scarves but for an evening out, wanted something that looks nice but still shows the hair I have got.
Thanks guys xxx
Bumping for you Jayne, no ideas on this one, I still resort to wigs for nights out (even tho I hate them).
Jayne M I am 3 cold cold caps down and thinning on top, I have invested in 2 crinkly silk scarves from Suburban Turban which will wrap round as a head band or can cover whole head, really gorgeous colours and very glam!
Hi Jayne my hair did the same, I went to Accessorize and bought a very wide, stretchy black headband which covered most of the baldy bit and then glammed it up with a narrow beaded elasticated headband worn on top of the wider one. Looked nice, kept my head warm and hid a lot of scalp. Could have pinned one of those silk flowers to it instead, or a sparkly brooch
Hi Jayne,
I rarely felt well enough to go out in the evening so if you do you should make the most of it and not let hair get you down. I found that I could buy a variety of wide headbands even in Boots, some of them quite glam. I found a shop in Milton Keynes selling jewelery and hair accessories. I think any large shopping centre is likely to have such shops. I got a chiffon black one with little sparkly bits stuck to it.
Enjoy!
Another question ladies, did you all manage to keep a reasonable amount of hair by the end?
Thanks guys - great tips I will get shopping. To be honest my only nights out are the weekend before chemo, I have a meal out on the 24th with some good friends and a Mumās meal out on the 14th December then New Years Eve, which I am worried about as we have booked a 3 night break in a hotel, we do it every year with my sister and her family but it will be after FEC 5 and in the low immune period. I plan to give it a go, the hotel room we have is very comfortable and has sea views (Bournemouth) so I anticipate some relaxing, just more worried about being with so many people and germs - oh well, guess I will just have to see how it goes. Cant see me making midnight though unless I ask for extra steriods!!!
Jayne x
Hi, I used the cold cap for all six of my FEC and only had minimal hair thinning. I noticed it at the back underneath, and above my ears but no-one else noticed. I had my hair cut into a short bob and didnāt wash my hair more than once a week ā I used Johnsons baby shampoo. On the day of chemo I would apply conditioner all over damp hair before the cap was fitted. The first 10 minutes are the worst and then I found my head went numb so I couldnāt feel it anymore. My chemo nurse also prescribed larazepam to be taken the night before and the morning of chemo day and it definitely helped ( on my second treatment she forgot to prescribe it and I never asked as I assumed it was just to help you through the first one because you didnāt know what to expect) I found that treatment a very different experience and I was very cold throughout and I had bouts of uncontrolled body shivering. I also waited until the following day and sometimes the day after that before washing my hair and I didnāt use a hairdryer, tongs or any products.
It is not the most pleasant experience but I would say to anyone considering it to give it a try the first time and if itās bearable go again for the second treatment because you should know by then (3weeks plus) how successful it has been. I found I had similar amount of hair loss after each session and became a little obsessed (counting the hairs on my brush after each use). I never needed to wear my wig or a scarf but I did live in a baseball cap for the few days following my treatment just because my hair looked so bad with the left-in conditioner. I also donāt know if it helped at all but I used a chillow pillow as well which is supposed to keep your head cool during the nightā¦my friend recommended it for tamoxifen flushes but I used it all through my chemo and then didnāt need it when I was later put on Tamoxifen.
Hi Loubel
My hair has thinned quite a bit on the top (11 days post FEC 3) and is still shedding daily but I still have plenty, those who donāt know me probably wouldnāt notice. I am waiting for the shedding to slow down but maybe that is unrealistic.
How long did it take after your last FEC for our hair to stop shedding completely and to go back to washing hair more frequently?
Thanks
Jayne
I have worn the dreaded cold cap for my 2 chemoās so far. FEC 100. Upset now that after all that coldness and pain i am now losing a lot of hair from the top of my head. I have a central parting which is now way wide going back even wider to my crown. Where there is a huge āmonksā area of scalp showing. All lower down hair is cut short and is hanging on in there. Not enough hair to do a comb over. I went in Primark yesterday and bought some lovely hair bands and scarves, got a friend coming round today and weāre going to See what we can do with them.
Not sure whether to carry on with the cold cap. For me it is the worst part of the whole chemo experience. The 1st 20 mins is agony and Iām thinking "can I take nearly 4 hours of this? it does settle down, maybe distracted by the nurse doing the injections. But then the 2 hours afterwards waiting, headache, shivering, I was give a blanket the 1st time, was offered one at 2nd but it didnāt appear. They were very busy. And the nurse did apologise profusely when she came back round the corner and found me with my coat wrapped round my legs and my sisters coat around my top half. ( the cold cap machine is tucked always at the end of the unit I guess as its a bit noisy). Was almost time to go home then though.
I do have very fine limp mousey blonde hair. And I cut it short and dyed it fiery red before the treatment. Which may have had some bearing on the effectiveness of the cold cap. May work better on strong thicker hair.
Hi catzooo. My hair has also thinned a lot on top and on the crown and I have ordered some hairbands and have taken to borrowing my sons baseball cap. I do like having hair showing around the hat and plan to persevere even though I am still shedding hair daily! I am thinking of having it trimmed as the hair I have is getting quite long (havent had it cut since July) but I am scared to let a hairdresser touch it as I am so careful, only wash it once every 6/7 days and only comb it once a day. My main reason for hanging on is that I would like to have some hair left at the end as I am hoping that as the lost hair is growing back it will fill in the gaps!
The cold cap isnāt pleasant but several people in our unit use it and the nurses seem very experienced and have even tried it themselves so they have some idea of the discomfort.
I may reach a point were I donāt have enough hair left to make it worth it but I hope not - number 4 is next week so fingers crossed. One of the nurses advised me that it works better when the hair is thinner as it has less insulation - that could have just been to make me feel better though.
The other thing that is odd is that I havenāt felt cold at all during the treatment - yes my head is freezing and the first 10 minutes are hell but my body has stayed warm even though I am wearing a t-shirt so they can get to the port in my arm - strange
Thanks very much for posting about your cold cap experiences, everybody - I am starting FEC on December 11th, and have been agonising about whether or not itās worth trying the cold cap, but have now decided itās definitely worth having a go.
Hi Jayne,
Iām afraid I canāt remember exactly how long it took to stop shedding after my last treatment but I donāt think it was too long or I would have remembered that. I gradually increased my hair washing and was probably back to pre diagnosis routine within a couple of months ā although I still use the baby shampoo because I had lots left over and then it was going cheap in the supermarket! I did not get my hair highlighted for six months after last treatment. I also donāt use any other products regularly on my hairā¦but I didnāt before the treatment.
Lx
Thanks Loubel - i cant wait to be able to shower and wash my hair without freaking out at the loss! Did you shed hair to some degree all the way through?
HI Jayne,
Yes I lost hair after every treatment but roughly the same amount each timeā¦certainly wasnāt a case of progressively more hair loss after each treatmentā¦hope the rest of your treatment goes well and now you are at treatment four Iām sure you can see the end of chremo is in sight!
Good Luck
L x
Hi Jayne. Looks like your hair is in the same state as mine. I do understand what you mean about still having some left at the back as can still look ok wearing a baseball cap.
Really getting me down today. Itās falling into my food. All over my clothes. And am sure some is stuck at the back of my throat. trying to decide whether to get my partner to shave it all off when he gets home from work.