I just wondered what the state of play is these days? Are people being offered this facility?
I see a lot of discussion on here about how to cope with chemo-induced hair loss. Definitely one of the worst aspects of chemo which I had 2 years ago. At the time my local (NHS) hospital had the cold cap equipment but no-one trained to use it! My BCN said that if I insisted on having access to the cold cap (on the NHS) it could be arranged at another hospital. I didn’t fancy travelling far so declined and in retrospect am glad I made that decision as the chemo days were long enough anyway.
Anyway, my understanding from BCC at the time was that the cold cap should be made available to all patients on the NHS who are likely to suffer scalp hair loss because of chemo. I know it can be very unpleasant, that the results aren’t guaranteed but it does work for some people.
I felt quite cheated at the time that it wasn’t available locally for me and was hoping that by now its usage was widespread so that at least people now going through chemo can have another weapon in their armoury against the dreaded side-effects.
Would be interested to know people’s experience of whether it’s offered/available.
The cold cap was offered to me at my pre-chemo appt. they explained how it worked etc. Im in East Anglia & as far as i know all the pts are offered it at the two local hospitals. Unfortunately it didn’t work for me as my hair started to fall out big time just before the 2nd FEC. Mind u i still maintain it was because the cap didn’t fit properly, it was quite loose at the top where i did lose most of my hair at the early stages.I think it does work for a lot of people & im glad i tried it, i just wish i’d have been a bit more forceful with the fitting. I agree with u that the hair loss is such a horrible aspect of chemo, it certainly was one of the things i found the hardest to cope with. I do think the cold cap should be available & offered to every single chemo pt who’s likely to suffer hair loss.
I had my 3rd chemo last thursday, i’ve used the cold cap and it has worked (so far) for me.
I am still shedding hair and it seems to have thinned on the side i sleep on, but not really noticable
i totally agree that all patients should be offered this, and i do know of people who have chosen not to try it, but i’m so glad i was able to use it
Great to hear it’s being offered and has worked for some. Up to people whether they chose to use it but important that they are offered the opportunity to do so and make an informed decision.
It has not been offered to me, I didn’t want it anyway but asked out of curiosity, the nurse showed them to me, nurse said they used to offer it to everyone, but stopped doing this and only give it to a patient who “twists the oncologist’s arm” as they feel (althoguh there is no evidence for it, she stressed this to me) that it might help the odd cancer cell escape, they rather want the whole body in an even temp and not have some cells freeze down.
Interesting comments Christine. What a shame that people have to go through the stress of ‘twisting the oncologist’s arm’ when they are already going through enough stress already. He/she wuld have had a very twisted arm if he/she had been my oncologist.
That’s what they told me too, 3n3. They didn’t offer a cold cap to anyone at that time (2008). Though they didn’t stop me sucking on crushed ice all through FEC to prevent mouth problems, which certainly worked.
Interesting thread! I was never offered cold cap when treated for primary bc last year. Losing my hair was more devastating than losing my breast
I now have secondaries but the chemo I’ve used so far has not affcted my new hair, which I can just about get into a little ponytail, 18m post fec-tax…
I’m starting a new chemo regime next wk + hair loss is likely + I’m dreading it again. I’m tempted to ask about the cc but I’m not sure if it’s just primary ladies who get it?? Don’t think I’ve ever read about secondary ladies using it? I’d be interested to hear if any stage 4 ladies have been given the option.
Tina x
Thanks sandytoes, that’s really encouraging to hear! Sounds daft but I’m just starting to feel a bit mre ‘normal’ + the thought of being bald again depresses me. My new chemo is given 2out of 3 weeks so it would mean a bit more hassle with the cc, but the infusion itself is only 5mins. How long before + after do you have to wear the cc for?? Think I will call the chemo unit today + find out if it’s an option.
Thanks xx
It depends on the chemo. For AC and TAX I had to wear it for 30-45 mins before and 30-60 mins after infusion - and during the infusion too. It obviously makes the time spent in hospital longer - but I didn’t mind as it takes a LONG time for hair to grow back.
I think on the Paxman website they list the places that have it and if you call them thet will also be able to tell you how long you’d have to wear it for. They’re really nice and helpful.
I really hope you manage to find somewhere that offers it so you don’t have to lose your hair twice. For me it was a huge confidence boost looking ‘normal’ as nobody would know that i just finished chemo. My sister had cancer when I was little and I also lost my mum and I remember being so scared and worried when they lost their hair - so for me it was also a psychological thing I think.
With regards comments on the cold cap and it protecting some cells and causing mets, I was worried about that and asked my BCN and onc who said they weren’t concerned about that. I also spoke to Paxman who sent me a report showing a study with the only women with scalp mets presenting mets elsewhere too. I then got a second opinion for my treatment up in Harley St and the onc there said he was a huge fan of the cold cap, that they’d been using it for years and hadn’t had any cases of scalp mets.
Gingerbud - you should definitely ask especially as you lost your hair previously. As far as I know, all patients likely to lose scalp hair through chemo should be offered it - irrespective of whether they are male or female, wherever the cancer is in their body, whether it’s primary or secondary.
A 63 male friend of mine had chemo for a different type of cancer to me at the same hospital at the same time as me. He wasn’t offered the cold cap either. He was bald on top of his head but was very distressed when he lost the rest of his lovely thick curly head hair - it was yet another indignity for him to suffer in his final few months on this earth and I wish some effort could have been made to spare him that.
Sandytoes - it’s fantastic that it worked for you and it sounds like it made a big difference for you. It gives me hope that, should I ever have to go through chemo again, there’s a chance I’ll keep some of my scalp hair. Thank you so much for your uplifting comments about it.
I was not told about the cold cap from the hospital but from a friend. I insisted on giving it a go when I had my chemo. I was told that I could use it but it wasn’t encouraged and often did not work, especially with high dose epirubicin, red stuff!! ( The E in FEC!)
I sprayed my hair with water then dabbed Simple conditioner on it. Had the cold cap on for half an hour before FEC and for 2 hours afterwards. Painful initially for a few minutes but not too bad with the help of swabs on my forehead and ears.
Although my hair did shed a bit and my scalp was sore from the chemo, I still had enough hair for people not to realise that it had thinned.
I was on full whack FEC x6 and grateful for this advice.
My unit offered the paxman cc, unfortunately the staff didn’t put the right size cap on and removed it too early after my first FEC, I didn’t realise at the time only when my hair fell out and I contacted paxman for advice directly and queried it at my second session which resulted in the correct size&timings. My hair went almost completely but I carried on using it as paxman said there was evidence that it can help with regrowth. Nearly 17 months after fec/tax I have a chin length bob.
Hi, I’m also using the cold cap. I’m in Preston, Lancs, and they have 4 on the go when I go to the chemo suite. I’m on 4 x EC and then 4 x Docetaxel. I’ve only had 2 ECs so far. I noticed a lot came out after the 2nd round, nearly 2 weeks ago, altho it seems to have settled down again now. I had about 3 inches chopped off my length yesterday, and had it cut shorter at the crown. I wanted my hairdresser to chop it really short because I felt it looked too thin. But she said it was me being too critical of myself and that I still had a decent head of hair. I’m so glad I listened because, whilst it’s much shorter, it really does look ok! Not sure how I’ll look after a few more chemos, but we’ll see!
I found the first 10 minutes is the worst when you wear the CC, only coz my body went into shock, thinking I’d shoved my head into the freezer! It was trying it’s best to heat the rest of me up and was overheating - my legs were restless, had a knot in my tummy, and was kicking off my boots and rolling up my sleeves coz I was so hot - weird! 2nd time around, it wasn’t as bad tho. Just uncomfy for 10 mins, and then you kind of forget about it. About 30 mins before any treatment given, and then 30-40 mins after, so it defrosts enough for them to lift it off your head and so not take your head and all your hair with it!
Tina, that’s very interesting what you say as re the cc helping with regrowth! Your hair looks fabulous! I wondered what happens as re regrowth when you’ve lost some hair using the cap, but also retained some of your ‘old’ hair. Does the new hair grow back differently to the old hair? Is it a different texture and colour, like most ladies experience when they don’t use the cc and completely lose all their hair? Do you have 2 types of hair for a while?
Hi, the picture is from May 2011, my last chemo cycle finished end July 2010. My hair was gone on top but thicker round the sides (friar tuck style) my friend who is my hairdresser cut the very ends off about every four weeks and after 6 weeks we did a strand test and I coloured it with Naturtint which blended the regrowth & the old hair quite nicely together. By about November it looked like a real if short hairstyle. The new hair came back very wavy, I bought one of those mini straighteners. I also used a minoxidil based shampoo and took a supplement (wellwoman trichologic). It feels totally back to normal now, I am growing out the layers to have it below shoulder length again.
