Had my first chemo last week and found cold cap the worst part. Stuck it out for the full 3 hours, but feeling like I won’t bother again. It’s hard to be normal and have a laugh when you can barely lift your head.
Has anyone else made the same decision, and was it the right one? Also, am I right in thinking that I would have to wear the cap for 5 hours during the paclitaxel?
Finally, even though my oncologist tells me there’s no risk, I just can’t bear the idea of giving those little blighters anywhere to hide.
I was offered the cold cap at first. When i actually went for the chemo, the nurse there put doubts in my mind about those ‘little blighters’.Although no one can say for sure. So with that in mind, plus the extra 4 hours i would have to be there (its long enough anyway), i opted not to have it. My hair started coming out after the second and third chemo. I bought two nice wigs (the nhs paid part). I even had a comment from a complete stranger on what a nice colour my ‘hair’ was!
I found i could get ready in half the time i used to take!
That was four years ago. My hair has now grown back as before, fine, straight, and still takes me a long time to style, i e rollers, tongs etc…
Good luck.
Rosie x
I had the cold cap for the first chemo (epi-cmf) at my oncologists suggestion. However my hair still started to fall out after a couple of weeks. I could have given the cold cap another go as my hair may have just continued to thin and I may not have totally lost it but to be homest I hated the extra hours spent in the chemo unit and was always glad to be out of there as soon as possible.
The hair falling out part wasn’t great but being bald wasn’t really that bad. I had a wig for a little while but I always felt self conscious in it, although people told me they couldn’t tell, I could, so mostly wore little hats or scarves and then when I had a covering of hair I went without anything. I got a few odd glances from time to time but mostly I just forgot about it!
Personally I still think that I would have struggled more with the extra hours in the chemo unit than I did with being bald, so I definitely made the right decision for me.
My chemo finished sept 2009 and I now have darker curlyish hair that is about two inches long. I have even had to buy some mousse for it and will be visting my hairdresser again soon.
I tried the cold cap for the first 2 cycles but it still fell out , and it really wasn’t worth the effort. As you say, I felt cut off from the others in the ward and couldn’t hear well. It was much better without as I could chat and even have a laugh with the nurses and patients.
As time went on I abandoned my wig as well, and was fine in buffs (which are great) and some cheerful hats I bought. I really feel there are so many people out there with cancer and just getting on with their lives, that the more people that do this, the less stigma will be attached to the ‘no hair’ look. I met a woman in Cardiff who was walking down the street looking very elegant and completely bald. I talked to her and turned out she has never had hair from being a child and decided she wouldn’t pretend - I then felt a bit ashamed that I had been so embarassed.
thanks schmooley and rosebud. I think I’m going to bite the hair loss bullet. I suppose if the cold cap has a useful purpose it’s in giving those of whose for whom it’s suitable, some feeling that we have a choice to make in hair loss. By saying ‘no’ to the cap I’m sort of controlling my own destiny.
hello all of you,
i start my chemo {E-CMF}next week, and am really torn about the cold cap. Part of me feels i have to at least give it a try, a {smaller} part of me thinks, hey, us gals have cancer, be part of the sistrhood, bald and proud. I dont know if i am that brave or bold. This link is realy helpful to me…i’m nurturing the hair i have while i have it and kinda saying my goodbyes.
Thanks to you all
Kathy x
I have used the cold cap and have kept almost all my hair through 3 x FEC and my first Tax. It does get harder - have just had my 5th round put back to next week, so will decide on the day whether to keep going. I hate it, but the results have been very good for me. If you are going to try it, I would recommend you get your hair cut short first - this seems to make quite a lot of difference as the cap has to be in close contact with the scalp to work. Good luck with whatever you decide.
I decided not to go for the cap, as I was told by one of the medical team , that it could mean that the chemo was not circulating around the hair follices sufficiently. Hated the thought that I may be hindering the process , so went bald instead.
however hair regrowth started as soon as the Epi was finished, I am now sat here with silver,black hair bout 2 inches long and gelled up like a hedgehog, but everyone says its trendy, and the time has gone so fast , I can hardley remember last summer with my wiggy wiggy hairdo.
Booked my haircut today for the 29th very short to start the transition. Bought a few hats online and see how it looks, if the coldcap is such a struggle it may not be worth it in, the end it will all grow back anyhow. Trying to see the bigger picture (trying very hard actually!!)
hugs to allxxxTina
I used the cold cap for my first chemo but my hair fell out anyway after 3 weeks.
However if it had worked - and it works very well for some people - I wouldn’t have hesitated to use it for the whole 6 sessions of chemo. I was really upset when my hair fell out and I hated being bald. I had to wear wigs and hats for 8 months altogether. I certainly think it’s worth trying the cold cap.
But this is a very personal decision and everyone has a different approach.
Good luck everyone.
Anthi xx
Just finished chemo and used the cold cap throughout. I still have my hair and it has been a major confidence booster for me. I have worn the odd hat and have to say have some bad hair days but I wouldn’t chance my decision for anything. Unfortunately dyed my hair a plum colour before which was a huge mistake as now have plum and grey hair not a good look. I also cut my hair fairly short as when it comes out looks worse when its long.
Elle
Hi, am fairly new to forum - diagnosed with bc on 25th Feb and had lumpectomy on 5th March. Seeing the Oncologist on Friday to find out my treatment plan but am getting more emotional the closer it comes. Thinking about the cold cap and going to ask Oncologist but have read it only works with some chemo. Just wondered if those who have used it did their Oncologist recommend it? Just a bit wobbly making decisions at the moment and would be glad of some advice. Realise that Oncologist might just say not suitable for my chemo but just panicking before appt. Trying to stay strong.
hi kiti, i am having my 3rd treatment next wed 31st ,i have used cold cap last two times , still have my hair, though it has thinned quite alot on the crown area ,so i wear my wig if going out and scarves sometimes, i am on fec 100 the higher dose ,paxman the manufactures,told me that the lower doses 50,60,have better results,approx 90%, where as 100 dose about 50% to 60% but on the whole i am quite pleased with results so far.!my oncoligist did mention cold cap to me but had heard about it beforehand and done some research into it. in the end it is your personal choice, but i am pleased i used it.good luck for friday .chris xx
Apparently there is a scientific reason for the “brainfog” during these difficult times, apparently, when you are dealing with high levels anxiety your brain becomes “fuzzy”, I sit in the docs office and become a nodding doll, only when I get home I realise I did not ask any sensible questions! Preparing for tomorrow’s onco app with a list of questions. Have the same cold cap queries as you! Had a panic yesterday, I can not remember at all the day when I was given the diagnosis, it has gone, how can I forget, it was only six weeks ago. Has this happened to anyone else?xxxTina
Hi Tina, yes I keep forgetting the date I got diagnosis and have to keep checking on the calendar. Part of me thinks how can you forget the date that turned your world upside down and when you feel your life will never be the same again? It is only a month since dx but feels like forever. I can’t help sometimes thinking this time 2 months ago everything was normal, does anyone else do this? I’m sure it’s not helping me come to terms with having bc but can’t help wishing.
Good luck with Onc appt tomorrow, let us know how you get on with cold cap dilemms. I will be in the same dilemma on Friday!
Oops sorry Maisie54. am only new to this forum and forgot to add a thank you for your info about the cold cap! I keep thinking I will have a try and then 2 mins later change my mind. I need someone to say you can have it or not, I’m finding it so hard to make decisions at the moment. I suppose I will just have to wait til tomorrow and see what the Oncologist says. The waiting is awful though - I thought I would see the Oncologist last week in results clinic but an appt hadn’t been made so had to wait another week.
Thanks for your support and good luck with your next treatment.
Hi beetle,
I had my first chemo yesterday and decided not to have the cold cap, it felt like the only control I had left, deciding to lose my hair!
Good luck and best wishes
Seren
What sort of chemo are you having Kiti? Some chemo’s do make your hair fall out more than others.
I was on Epi-Cmf and it is only the epi part that makes you lose your hair, it actually starts to grow back on the cmf part. So really uou would only have to endure the cold cap for the first half of the treatment.
Having said that I was on e-cmf and only bothered with the cold cap for the first treatment and my hair started to fall out anyway. I wonder if it didn’t work as well as I have very thick hair. Perhaps the cold cap wasn’t close enough to my scalp?
Just musing really. I really didn’t find being bald too traumatic but I have a friend who won’t leave the house if she’s having a bad hair day, so she would really struggle if something like this ever happened to her.
Good luck for those just starting chemo. I started mine on 31st March last year and now it just seems like a dim and distant memory. I think perhaps you blank it out a bit afterwards, like childbirth!