Hair Loss Despite Cold Cap

[Berretumkin]

My sister had a similar situation...it was hard to get over it, but we decided to do a hair transplant. Our Cassie is a real beauty, and it was difficult for her to endure all these trials and changes in her look. Her body didn't respond well to chemotherapy, as she had always been in poor health. We have already chosen a clinic for the transplant procedure, but we are in no rush. The main thing is that she comes out victorious in her fight. Now she needs strength to recover. I admire my sister's endurance and she plays it very cool. She says these are all temporary difficulties.

[Niki57]

Hi. Like you I'd grown my hair really long for years . I used the cold cap , have to admit it was the most uncomfortable experience,  but did start losing my hair in handfuls after my 1st EC infusion.  Eventually it started to fall out at a slower rate then stopped but I was left with hair about 6 inches long ( I had to have  it cut short about a month after it started shedding). Its growing back very fine and very grey ☹☹ but 99 %  of  the ladies I saw in chemo every week who didn't use the cap were bald. I can't say with certainty that the cap saved some of my hair...I may have just been lucky...but I'm glad I preservered.  Good luck 👍 💓 

[Susanmanchester]

I was lucky I kept 60 per cent of mine although by the end it was very thin . I sadly think there are no guarantees they are still working on a new prototype . Might be worth persevering for a little while 

[Garlifld]

I'm sorry that you should go through this. I didn't have any EC interventions. However, one of my friends did, and despite any accessories or products she used, her hair did fall. After some months after she sy=tarted the EC, more than half of her hair was gone. After she finished all her sessions, the only option was to do a hair transplant. After some searches, she chose this clinic: https://maps.app.goo.gl/pB4jNPywKLTVhSrJ9. If you need one, check it out and believe me, it's a safe and convenient procedure in your case.

[Niki57]

Hi  . I had my 1st EC chemo nearly 3 weeks ago and used the cold cap, as its taken me 3 years to grow my hair long and the thought of losing it is so depressing....on top of everything else that's going on. But I'm losing handfuls several times a day........so disappointed 😞.  Now don't know whether to try cap again this week for my 2nd session as it's not pleasant and if not working there doesn't seem any point.  Anyone else had same problem?. Should I persevere with the cap....?? Thanks.  

[loraine0319]

Hey sweetie! Dont worry i went through the same exact thing.  I just finished my chemo December 4, 2020.  It will all be OK I promise.  Your hairs will grow back faster because you are using the caps!

[loraine0319]

Did you continue having hair loss you were done with chemo? I have been done with chemo for seven weeks now and I'm still losing a crazy amount of hair.  I used the dignicap

[loraine0319]

Hi ladies 🙂 I had my last treatment chemo on december 5, 2020 and used dignicap for all four treatments.  I just wanted to know if it's normal that I'm seven weeks post chemo and my hair shedding is still horrible! Im so worried! Also I've noticed that my Hair Growth is not even.  On the sides of my head I don't even have any baby hairs growing 😞 i feel like some of my hair loss is permanent.  I don't see the same amount of hairs that fell out growing back.  I'm very concerned about both of these things anybody have any suggestions or ideas or been through the same? Also I had thin here to begin with, i lost most of my hair permanently to lupus

[renpen]

I’m not sure if this has already been mentioned but Paxman scalp cooling have a brilliant Facebook group. There’s lots of members who have had fantastic success stories and a large number who have had significant loss. All the members are really supportive, it’s been a wealth of info for me about treatment as well as hair tips.

I did everything by the book but have still lost about 70%. It is growing ( grey roots) and I have a fab wig that I wear on the rare occasion that I leave my Covid bubble! Some regimes are harder than others and some people respond better. 

good luck xx

[Mindy63]

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. 

[autumnj84]

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.

[Kmpries]

I used dignity cap. Yes i shredded and still am. 20 strands not bad. Yes i only washed once week no cream rinses. Brush lightly am and pm.

[Kmpries]

I think was worth it. Make sure you start the 30 min prior to chemo and keep on 2 hours after. Your there being treatment so what's the extra time. Sleep it off. I did 4 rounds. 

[Kmpries]

Im not on anything just yet. Will be doing a zometa fusion next week then go on a hormone pill for the next 5yrs. I've read alot of people do die there hair this soon and have been good. 

Yes keeping the hair people haven't realized i was sick. My grandkids most of all. I guess i'm really lucky that my treatment started during the covid also. Thank you for your reply

[JJJYYY]

Are you on any type of maintenance drug like Zoladex or even Tamoxifen?  Those drugs do cause hair loss too.  I understand how you feel about the grey and wiry hair!  I colored mine after 5 months and felt a lot better after a nice trim as well.  Best wishes to you and glad you only lost 50-60% of your hair.  

[Kmpries]

My last chemo was in june 2020 and did radiation. Finished radiation 3 weeks ago. Im still shedding. Yes makes me nervous too. Im going to color my hair next week. I can't take the grey and wired hair anymore. Feel 10 years older. I have kept 50 to 60% of my hair. I used a digni cap for 4 sessions of chemo

[Tracy Brain]

I have had my first cycle of chemotherapy three weeks ago and despite wearing the cold cap my hair is coming out ,is this normal? If so how much does come out  , is it worth carrying on with. 

[JJJYYY]

Hello, I realize that some of these posts were done a month or so ago.  I'm almost 2 weeks out after chemo #1 (of 4) and started experiencing heavy shedding.  I would run my fingers through my hair and about 10-20 strands would come out each time!  Please tell me what happened with hair shedding from treatment #2 and so on?  I am using the Paxman scalp cooling cap.  I too am worried and scared.  My hair is not thick and fine so I am worried about bald patches.  Also is it advised not to wash or wet your hair during heavy shedding?  How long did the hair shedding last, a few days?

[Lselga]

I just had a huge shed. I’ve had one of four treatments of TC and on day 20. Washed my hair and lost so much hair that I’m terrified. I couldn’t stop crying. Trying not to worry, but I’m scared!

[Sigi]

I have just had my 2nd chemo and I am shedding a lot. Strands of hair are coming out. I don't have any bald spots and I had a lot of hair to begin with. I am going gently through my hair and strands are coming out which worries me. I have 2 more chemos to go. What was your experience. Did you eventually keep most of your hair? I am on Taxotere and Cytoxan. 

Thanks

[Susanmanchester]

Me too ! I kept most of my hair during chemo but four weeks after finishing an still shedding strands .... it seems to be mainly at the back new hair is coming through at the side . My scalp also dry and flaky ... however no-one would know the volume and condition is far better so stick with it . Just don't expect it to stop shedding right away 

[daisydi]

Hi I cold capped and probably lost about 30% of my hair but you would never have noticed.  I must admit my hair was shedding until about 6/7 weeks after chemo finished and it was making me very nervous too but its all ok now.  Think it is normal to shed about 10% each session of FEC.  Good luck x

[AML119]

Hi

I am having the same shedding issues after the cold capping and finished my rounds of chemo.

I have not started the Arimadex yet so that isn't an issue to consider at this time, however this shedding every day is also making me nervous

[Tdacosta]

Hello,

I finished chemo on 3/19/19 and today is 6/7/19. I cold capped and it has worked. My dilemma is I am now noticing a lot of shedding. As In when I run my fingers through my hair strands are coming out. It's freaking me out. I will be almost 3 months out in another week or so. My hair still looks good but this shedding is scaring me. Let me know your thoughts. I am so glad you kept your hair too. I am continuing to wash and condition my hair carefully. No hot irons or hair dryers.

[Border_Collies]

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.

Border-Collies

[RebeccaInLA]

Hi there. I saw your post and know your focus is the hair loss but the other symptoms you mentioned such as heart racing etc are signs of orthostatic neuropathy.    Did you let your ortho know?

[Bibi44]

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

[Surreyhillsgirl]

Hi

I shed the most hair two and a half weeks into the first cycle of TC using Paxman cold cap so thought it wasn't going to work, a bit depressing, but I've just finished chemo and I've kept most of my hair, it's just thinned.

unless you knew me you probably wouldn't even know!

Hair won't grow much during chemo as the hair follicles are the second fastest growing cells so get zapped!

i was recommended to buy a silk pillowcase which is so soft! After using baby shampoo the first couple of cycles I had a chat with the chemo unit manager about my hair and she said to ditch it as it's full of chemicals to make it non-sting which is probably why my hair would get so matted after washing as it wasn't lathering, and I had stopped using conditioner. She recommended using Palmer's coconut butter/oil shampoo &conditioner or Dove or Simple. Palmer's is great my hair immediately felt better and wasn't tangling or matting. Hope this is helpful to you. All the best.

[swampy1901]

Hi Bluemcghee

I lost hair throughout FEC-T but the hair loss definitely slowed down on the T part of the chemo. I tried to be as gentle as possible with my hair and only washed it once or twice a week with baby shampoo and Biotin conditioner. I also wore a sleep cap - more to catch the hair than anything else but it was still pretty scary counting the hairs that came out but it was a gradual loss and the first hairs started to shed around three weeks after the treatment. It was very thin in places but a strategic comb over or moving the parting sorted that - the nearly bald patches are growing well now and in places my hair is sticking up with new growth!!

Swampy

[Bluemcghee]

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?

[Bibi44]

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

[Surreyhillsgirl]

Hi Fiona,

Thanks for your reassurance and taking time to reply. It's nice to know your hair started growing back so quickly.🙂 You may see from my other reply that I was in hospital hence the delay in replying. I go for a wig fitting today in case I lose it all. I'll carry on with the Cold Cap though as I've had very thick hair and apart from my parting don't think it's so noticeable. Gill x

[Surreyhillsgirl]

Thank you so much for your reply. I was in A&E last Friday as had felt ill all week and they kept me in as I had a chest infection. I had felt far worse than after the first chemo. Am still on antibiotics and was back in A&E yesterday as felt really breathless, sweating, and fast heart rate etc and that was just. doing normal things!

I had my hair cut shorter before the cold cap, I suppose I wasn't prepared to start losing it so soon. I'm lucky to have very thick hair so apart from my parting I don't think it's obvious yet. I swapped to Palmers shampoo & conditioner on he advice of a chemo nurse and it's lathering better and the conditioner leaves my hair easier to comb. I've only been washing it every 4-5 days. I will start doing some walking once I'm able. 

Sending a hug back to you too🙂

[capelmum52]

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.

Regards

Fiona

[swampy1901]

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! 

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!!  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!!

Swampy

[BonitaE_BCC]

Hi Surreyhillsgirl,

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.

Best wishes, 

Bonita 

[Surreyhillsgirl]

Hi,

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.