Hi All. I am due to start EC in around 2 weeks and thinking of cold capping. I have thick long hair and really don’t want to lose it all. Has anyone who’s tried this, could you tell me your experience and how best to prepare. Also those who have had EC what side effects did you get. The plan is for me is to have 3 weekly cycles and maybe 2 weekly if I can cope with it.
Hi @rosa1 , I’m currently on fortnightly EC, due my 4th infusion on Thursday. I’ve cold capped all sessions so far and took advice from this forum about taking paracetamol before I left home, bringing a headband for my forehead and focusing on getting through the first 15/20 minutes, after which it does become more bearable. As I’m sure you’ve heard, cold capping is tough, I find it painful but focusing on the benefits was something that kept me going.
The charity Cancer Hair Care have lots of really helpful information.
That being said, I started to loose hair around a week after my second cycle, which I’ve found very difficult 
Truthfully, I am at a stage now where there are clear patches of lost hair and I intend to speak to my BCN in clinic to discuss how this will work (continuing with the cap when there is already lost hair) should I continue etc. I understand that the cap protects the follicles and so supports regrowth, which is a motivator for me, but I need to look into the information a bit more before Thursday.
I’m sure that there will be people on here with more positive experiences and wish you the best in your decision making and treatment 
Hi, I echo @altoan’s comments. I just had my second EC (fortnightly) and haven’t started shedding yet so still waiting to see how I respond. However, make sure you ensure it’s a tight fit with no bubbles/gaps at the crown of the head and I also seen a tip for the first 10/20 mins to sip a cup of tea (or other hot drink lol) and that really helps me do the first wee while till you acclimatise to it! It’s made a huge difference in addition to taking the paracetamol. EC is also really cold going into the hand and I actually found it like a little sore just with the cold the first time so my second time they put a heat pad on my forearm which also counteracted that too☺️
Overall I’ve been ok on EC - some nausea the first couple days and disrupted sleep along with heartburn/mild constipation/mouth ulcers but just make sure you phone your helpline and take the stuff they give you and it’ll sort that stuff out. I’ve had my meds tweaked for the second time after I knew what side effects I was having etc and it’s made a difference this time too so don’t be shy to say.
One other thing is I have 5 nightly injections to do for the white blood cells (filgrastin). If you get those or have issues/side effects, try taking a loratadine antihistamine about an hour before and also take the injection out the fridge an hour before doing it to let it come to room temp then also have a nice Epsom bath salt afterwards. I read that here as a tip before as I’d seen people get bone pain etc and have been doing this and touch wood I’ve not had any pain etc so it’s now my ritual just in case 
I did the cold cap years ago with 6x EC. I found i would get a bit of loss every 3 weeks, but overall kept enough. I did have one session with a different cap and it didn’t fit as well, so i did get a bit thinner there. The cap needs to be touching your scalp to work. It does take 24 hours or so for your head to warm up again, I was surprised at that. It worked ok for me and when it grew back, it was fast. Hope it goes ok for you.
I also used the cold cap many years ago. My hair thinned a bit, especially around the edges. Alot seemed to fall out when i washed it. Keep washing your hair to a minimum and avoid using a hairdryer etc. However it was only me who noticed! Take a scarf for your neck and something to keep your arm warm too. Good luck with your treatment x
Thank you to all your responses. I will be taking the injections as well so thanks for your tips. I hope it works for me. I wish I could know if it will work or not as going through this and for it not to work would be so disheartening but if I don’t try it I’ll definitely lose everything. X
Hi there. I’m having weekly EC treatments with the cold cap and so far haven’t lost any hair. Although eyelashes and brows are getting a bit thin! I echo all the comments re paracetamol and hair bands. I was given the advice of just get through the first 10-15 minutes, when you might want to tear your head off! Then it should ease. Also, I was told to bring a warm hat for afterwards - not ideal now we’re going into summer but it helped me warm up immediately.
The side effects I’ve experienced are fatigue and nausea. The chemo nurses have had various medications to deal with the nausea. Fatigue is trickier! Good luck with it all, I hope it goes well for you, x
I’m currently on Taxel but doing cold capping too. My advice would be to cut your hair short before chemo (not pixi short but you can choose the bob style that is very in fashion right now!).
I’ve always had very long hair and I thought that cutting it would be painful for me but it was the best decision ever. As you should avoid washing your hair too often and using a hairdryer, washing and drying long hair is really difficult. Also, once you start shredding, it’s easier to manage with shorter hair, otherwise you’ll have your hair clogging all your pipes and littering your carpet. Also I find that it’s easier to manage cold cap with shorter hair.
I personally don’t find the cold cap painful, but I grew up in a cold country, so the feeling of having my hair frozen is something I’m used to. I usually fall asleep when wearing it because the premeds for Taxel make me really sleepy. I would also recommend buying an electric blanket to keep you warm, mine was worth every penny!
Just attached a pic of Elle Fanning to show the style I went for.
I just found this too due to doing a look good feel better hair course! Really useful
Hi,
I had long thick dark hair & used cold cap. I lost a lot of hair & ended up shaving it but glad i did everything i could to keep my hair.
Tips; turn up to treatment with damp hair, put leave in conditioner in your hair to stop the cap from sticking, use a soft material hairband to protect your forehead from the cap, use the smallest cap possible to make sure its really tight on, take a couple of paracetamol before your appointment as it can give you a bit of a headache when on. You can go to the toilet during treatment, just ask the nurses to unhook your cap (they take out the tube) and then pop it back in when you return.
Main EC symptoms were extreme tiredness (i managed to work but had to work from home the two days following treatment). I was a bit nauseous so i stuck to plain foods that i enjoyed (mashed potato & melon). I also had to take syrup of fig for constipation.
Its ok to be apprehensive before your first treatment. Its a scary situation but you can absolutely get through it.
Good luck
I had a lot of long, fine hair when I started chemo. I cut it to a shoulder length bob, which helped with some of the fallout. I managed 11 rounds of Taxyl/carbo chemo losing about half my hair, but nobody could tell because it came out pretty evenly (and I still had a lot!). I decided to cold cap again with EC, but after 1 round it was all gone. It literally just fell out if you touched it, and I shaved my head the night before my second cycle because my head literally hurt. Just felt like when someone pulls a strand of hair out, but all over!! Some hospitals wont let you cold cap with EC because they say you will lose it anyway. I needed to do it for my sanity, knowing I tried everything! So, you do what you need to do.
Definitely concur with other tips, cut your hair, paracetamol, distraction techniques, elastic cotton headband etc.
Good luck! 
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