I started Chemo, 4 cycles of TC mid April, using Cold Cap, and two and a half weeks later started shedding hair and scalp very tender in places. Has anyone out there experienced this? I’d thought the Cold Cap would work. My hair matted really badly and took ages to untangle it. I’ve been using a silk pillowcase, gentle paraben etc free shampoo and wide toothed comb, no hairdryer etc. I guess I’m just unlucky but if anyone out there is in the same position I’d love to hear from you. The fatigue is worse after my second treatment, after the first treatment I was pretty much living life normally until the second week. Thanks in advance.
I’m sorry to hear the cold cap didn’t work for you. Whilst you wait for other users to respond, feel free to contact our specialist nurses about cold caps via our Ask the Nurse board or helpline on 0808 800 6000.
I’m sorry you are losing your hair but hopefully you are also retaining a lot of it too.
I don’t know if you were told that you could still lose some hair even if you use the cold cap. Have you had your hair cut a little shorter to help cope with the matting? You are right to use a gentle shampoo and a conditioner will help smooth out the tangles when you do wash it. If you can bear it only wash it once or twice a week and use dry shampoo in between washes. Also sleeping with a sleep cap may help with reducing tangles in your hair at night as well as catching any stray hairs that do go absent without leave! :smileyindifferent:
I used baby shampoo along with biotin and collagen conditioner and I probably lost around 30 to 40% of my hair. It was very hard to cold cap at times but I’m so glad I stuck it out. My hair is growing back - hard to tell what colour - a mix of my normal hair colour with plenty of grey in there lol. But my hairdresser says it’s actually coming in as a really nice colour so I’m growing out what’s left of added colour with a view to going natural!!
I had the FEC-T chemo regime so can’t comment on the side effects of your chemo regime but all Chemo regimes will all have their own quirks - but tiredness is universal I think for most treatments - so that means look after and nurture yourself. If you can - do get out for a walk even if it’s around the block or your back garden - however tired you are - a little exercise will give you a boost even if the end result is another little nap!! :catvery-happy: Eat whatever tastes OK and that you can tolerate - I lived on Fish Finger sandwiches and Marmite toast for the first week after my chemo treatments and drank plenty of water.
Sending a you hug!!
I too did cold cap on my first round of chemo but still lost most of my hair. As this was the case I did not bother to cold cap on the other cycles. Best advice is to have it cut short as this will lessen the impact. I did buy a wig but have spent 90% of my time wearing cotton beanie hats. I have finish d my chemo now and withnin a few weeks of finishing my hair has started to grow back.
I was dreading hair loss more than anything but in all honestly it was ok once I got used to it and o actually felt less relaxed wearingbthe wig than going au naturale!
I hope you manage to keep most of yours but don’t feel to dishearten if this is not the case. Everyone who was on FEC T that I have spoken to lost their hair and in all cases it has grown back.
I wish you well with the rest of your treatments.
Sorry to hear about your hair loss. I was the same, probably lost c.50% of my hair. There were 4 of us on the same regime doing the cold cap & everyone else kept enough so it wasn’t noticeable. I ended up wearing scarves to cover my greasy locks. It was still worth perservering because my hair grew back way faster afterwards. Also post chemo hair can be quite frizzy & unmanageable, so I was glad half of it was still its usual straight silky self to calm it all down. You do end up with the new growth a totally different length to the rest & it literally takes years to grow down. I’m nearly 18 months post chemo & the new stuff is only down to my ears, so I tend to put that up. People say ‘oh your hair is back to normal’ but if they could see it after a hairwash they wouldn’t be saying that. If it’s not too hard to carry on, I would recommend doing that. Some people hate the cap, but it didn’t bother me that much to be honest. All the best xx
I had my first round of chemo using Dignicap. I went really two weeks with virtually no shedding and then I hit the two and a half week marker and started to really shed. Worried how much I will lose. Do you shed throughout the therapy typically or are there times when you don’t shed? Starting my second round on Thursday so worried about how much I will lose and if I will need a wig. Love to hear if people experienced shedding throughout the cold cap therapy or if they tended to shed primarily around the 14-17 days after chemo? Also did you find that the hair you kept grew or was it dormant? And of the hair you lost - did you find it started grow back while you were taking chemo with the cold cap therapy?
Glad you perservered Surrey Hills. Great result for you! I gradually lost more & more as I went on, the worst was a FEC 3, but it did start growing back on Paclitaxel. I think FEC is the real hair killer. My friend is doing TFEC & is really pleased her hair is ok after 3 T, didn’t like to say the FEC might be worse! x
I began chemo in November 2012 and wSas so paranoid about losing my hair that I cold capped. Iwas in a small private hospital and the cold caps were the old fashioned type which are kept in the freezer. I had 6 FEC and managed to keep 50% of my hair. If you didn’t know me you woud have known I was having treatment and never wore hats scarves or wigs. The only time I wore a hat was on very windy cliff top walks as the strong wind can literally blow your hair out.
Hair shedding throughout is normal so don’t give up on the cold cap. If you are using the ones from a freezer just make sure they are touching your head all over and there are no gaps near the crown. If the cap doesnt touch bald atches will aoear. I used to wet my hair and apply conditioner (paraben free) before the cap was put on. Washed it only about twice a week, never rubbed it just sort of patted it clean, and allowed it to air dry. I was told to have my below jaw length bob cut as it would make the cold cap work better. However if I ever had to have this treatment again I wouldn’t cut my hair. I could have done less messing about with my now layered hairstyle than if I had left it all one length and just stuck it up in a clip.
So glad I persevered with the cold cap as when I went out I didn’t look like a cancer patient and for me that really help mentally. I only told my husdband, children and brother that I had cancer and my friends never knew because I looked normal. This is just me you understand. Doing this made me feel better but we are all different.
Good luck with ther rest of your treatment. There is light at the end of the tunnel. I’m 5.5 years NED now and I feel great. However when I was going through treatment it was this Forum that kept me going.
I’m almost 3 weeks post for my 1st treatment. I’m using the Paxman Cold Cap too and over the last week have probably lost 70% of my hair. I’m not washing but once a week, no products and using the tangle teaser comb that came with the cap.
Im super bummed and as some other users have said, I’be cried a lot. I didn’t expect to lose so much and it’s still just coming out like crazy.
My 2nd treatment is this coming Friday and I’ll use the cap again, just didn’t expect to lose this much hair while using the cap.
I had a similar experience however I persevered. I had 3 EC chemo and was due 3 Docetaxol but ended up just getting 1 due to being hospitalised. By the last treatment I still had some very wispy hair left. The reason I continued was that I hoped that the cold cap would protect the non visible roots of my hair and that this would aid regrowth. When I discovered I wouldn’t be having my last 2 chemos I took scissors to what was left. Turns out I had more coverage than I thought. I am wearing a hat when I go out but I could probably get away with the patchy shorn sheep look. It’s hard to tell if I have any new hair sprouting a month after my last treatment due to having some ‘old hair’. But comparing what I have to what I had in 2013 when I didn’t use cold cap, there is a significant difference.
Witnessing hair falling out is very distressing and disappointing but, for me, I think persevering, despite initially poor results, has been worth it.