Hello, I start 6 months of Chemo in April and wondered if any one has tried the cold cap treatment and whether it saved your hair. I have been reading that it can cause headaches, so wondered if it is worth trying?
Hi there. I used the cold cap and it worked for me. My hair did thin slightly and I lost hair completely in 2 small patches either side of my of my head where the cap wasn’t a snug fit but I could always disguise these parts. I didn’t find the process to bad, the initial first ten minutes of every session was cold but bearable then your body seems to adjust. I always took something in to occupy my mind so I forgot about the cap and the nurses supplied endless cups of tea which helped keep me warm. The only downside was the extra time spent on treatment day in the ward, cap was on 30 mins before treatment and 40 minutes after. I was a bit apprehensive when I was offered it but the team encouraged me try it and said if I didn’t like it or couldn’t stand it I could stop it at any time. Good luck with whatever you decide.
Hi Learningtorest, I have used the cold cap throughout my chemo. EC is the toughest on hair loss even with the cold cap. I lost a lot on EC but it has started to come back on docetaxel. The cold cap has helped to prevent complete hair loss for me and it’s also good on helping with the regrowth. The first 10 mins are normally the hardest but paracetamol helps and if needs be you can have a relaxant too. If you don’t use it on your first session you will be unable to use it. It’s worth a try, if you don’t get on with it the nurses can remove it for you. I always take an extra fluffy cardigan with me as sometimes you can feel a bit chilly but most of the time the chemo units are so warm it’s not needed. Hot cups of tea help like Kaybell says.
I am cold capping and have currently had 2 rounds of EC. I am due another round next thursday before moving to weekly paclitaxel. So far I have retained all of my hair - which to be honest I didn’t expect as I have fine hair.
As Kaybell said, the first ten mins are the most challenging as the freeze starts - you just need to distract yourself with something else rather than focus on it. I haven’t had head aches with it. Where I am (Saint James in Leeds), they have heat pads for your lap to keep you warm - brilliant idea! Warm and comforting!!!! So do ask about them!
My advice is if you have half a thought about wanting to keep your hair its definitely worth trying - my consultant said would lose with EC so probably not worth it - breast care nurse disagreed and so far she is right! If you find it intolerable you can just remove it.
Finally - have you thought about having a wig on standby? I do have one supplied by the lovely Macmillan - but hoping not to need it.
I started chemo last week so early days but have had 2 treatments now with cold cap. I took paracetamol a half hour before & haven't found it too painful.
Depends on where you are getting your treatment but my hospital do the wetting the hair & conditioning & put material around forehead & ears to prevent contact & pain in these areas. I saw about using a material hairband for this if your hospital isn't doing this. I watched Cold Cap Club videos on YouTube prior which I found very useful in knowing what to expect. At my second treatment for example I felt the cap wasn't fitting as snug to the top of my head as the first treatment & felt the videos had given me enough info to raise this & they got me a more snug fitting cap.
The only way to find out is to try it. The first 10 minutes are uncomfortable but you get used to it. The effectiveness depends on your hair type and on the chemo drugs being used. My hair fell out anyway so I only used the cold cap once.
Just wondering how you went about getting a wig from Macmillan? I am at the start of treatment & trying cold cap but would be good to be prepared as you have mentioned
I was referred by the breast care nurse to the service which is located within the hospital (in Leeds it is anyway ). I had a zoom consultation with a lovely wig worker (sure not called that but don’t know the proper term). She was very experienced in all things about hair and hair loss. We looked at wigs on the zoom and she ordered three. A week later I went in to try them out and choose one. It was a really nice experience - well as nice as it can be under the circumstances. The wig is brilliant I have to say - looks amazing! But I do think it would be hot to wear so not sure how it would be with warmer weather coming our way etc etc. I do however feel happy that I have it as a standby. There is no cost attached so thats amazing as it is a difficult time financially with all associated costs of working less hours etc etc.
Hi JPH, I use the scalp cooling cap. When I had EC I had 2 cycles and said to my oncologist I was very please I hadn’t lost any hair. He told me another week or so and then it would start to come out. He was right . I still continued with it and have one more cycle now to go. I lost most of my hair but it has now been growing back on the docetaxel. I am pleased you have still got all your hair, I’ve heard that people on Paclitaxel also seem to find their hair starts to grow back too. Wishing you all the best for the rest of your journey.
Oooooh - it’s so random with the hair loss isnt it? I have had three cycles of EC now - still with hair although one bald patch under ear where I dont think the cap quite reached perhaps. Cant see it unless lift hair but clearly would be completely bald without the use of cap.
Now have. Three week break before staring the weekly pax - not looking forward to the weekly cold cap but will try and smash it out even though my consultant said was pax was harsh on hair - but my reading says less so than EC?
