Member
Posts: 163
Registered: ‎07-02-2017

Re: Cold Cap - did it help keep your hair?

Melia, I wore bobble hats in winter and then struggled as soon as the warmer weather arrived. I do have a sunhat and baseball cap but am loving these headbands at the moment - much cooler than a hat! My balding is across the top of my head and my crown and wearing a headband covers the worse bits and does a sleepover type effect on my crown!
I don't know how to paste a link but if you put China flower retro hair band on Amazon, it will come up!

Member
Posts: 199
Registered: ‎16-03-2017

Re: Cold Cap - did it help keep your hair?

Hi ladies did any of you use the paxman shampoo and conditioners whilst cold capping and for normal washing or is their something better out there? Can I wear a baseball cap to hide bald/spots and shedding or is wearing hats not recommended. I am not a scarve kind of girl x
Member
Posts: 1
Registered: ‎04-05-2017

Re: Cold Cap - did it help keep your hair?

I did great with the cap. I used the Penguin Cold Cap May 2015-August 2015. My treatment was TCH. The way my oncologist set up my. He I mess, I only had to do it 4 times. I did everything they (The Penguin Cold Cap Company) told me to do and I continued this regiment for 10 months after I completed chemo, just to be on the safe side. I also had 6 weeks of radiation treatment. I had a little shedding but in all actuality, the strands I did loose weren't much more on a day to day basis than I have had throughout the rest of my life! When my hair fell out everywhere else, yet still upon my head, it was absolutely the greatest feeling. My eyes filled with tears because I could see the proof that it really really worked! It was also very nice to have a goal, something to focus on, something positive that I could do for myself. Something other than focusing on the cancer diagnosis. My husband and daughter got into it too. It gave them a way to be helpful, something they could do to help!  As far as the temp (30' below C), well, that wasn't an issue either. I swear, it was only a few minutes of cold. Your head gets so cold, you don't feel it and there it is... problem solved! A little Ativan (0.5mg in my IV) did the trick and I stayed alert and talked with my friends and relatives while they capped me every 30 minutes! I recommend it and i's a shame so many people don't know about it. I work in the medical field as a nurse and as far as I know, it still isn't FDA approved here in the USA. I think the cost of renting the caps ($1600) was well worth it. It would take me years to grow my hair back and the cool thing was I had something positive to focus on and people didn't question me and tell me stories of loved ones with cancer etc when they saw me. It was my business if I wanted to talk about it, not someone else's. 

Member
Posts: 11
Registered: ‎06-07-2016

Re: Cold Cap - did it help keep your hair?

Hi ladies,
I just wanted to give you all a big high five you are all doing amazingly well.
I had four FEC and four Docetaxel ending on December 22nd I used a paxman cold cap and had the most amazing team of nurses only my two lovely ladies touched my hair as I trusted them. I knew I'd lost a fair amount of hair but I lost it all over and havevthock hair so it wasn't that noticeable. Now only four todo entries months on I have full brows, lashes although not as thick and hair which is insanely thick and curly I'm in love with it 😍 Oh and as a blonde my hair eyebrows and lashes are now really dark it's like being a new person!!!
I will say I've found I still have nightmares of my hair falling out and count the hair in the shower, I shudder if my head gets cold but then I take a moment and realise I'm so lucky to have tried the cold cap and have kept my hair as I now go out curl my hair and no one knows I've had anything wrong with me this helps me. Although I have noticed the buzz cut is becoming very fashionable!!!
I would say my tips for cold capping is as follows;
1. Try and go somewhere else for those ten mins when it hurts your oncologist can prescribe meds to help with this they do help and I have no idea why I didn't get them from the first session!!!!
2. Use paxman products if you can they are expensive but work like a dream!!
3. Check your own cold cap after the nurses have and if your not happy with the fir get them to recheck it they really don't mind.
4. Wide toothed wooden combs are your best friend at the end you can go onto a tangle teaser but they are scratchy during chemo if you have any bald patches.
5. Don't believe everything you read - I did and convinced myself that I was shedding in a way I would go bald and that the tingling you feel means your losing your hair at that moment.... it dosent mine is still attached and no tingling scalp now woop!!!
6. Use Teppid water to wash your hair and don't rub it with a towel it will create a nest of attached and non attached hairs so you lose tons more.
7. Coconut oil on your scalp will help but be careful as it clogs the scalp of not washed off properly which is hard with teppid water.
8. Don't use a conditioner when cold capping that you want to use afterwards the smell will make you feel nauseous and remind you. I used a deep conditioner from lush and now want to vomit when I smell it which is unfortunate as it was my fave!!!
9. Watch the time don't let the nurses start treatment early as this could compromise your treatment and at the end let your head defrost. I always nipped to the loo as I was too scared to unplug the machine during treatment got my stuff sorted then gently checked befor taking it off.
10. Ask if there are supilments you can use that helps I took tons and my growth furring chemo was insane!!!!
11. Sleep Ina silk pillow case because you are a damn queen and deserve the very best oh and it will stop your hair drying and knotting. Also use a soft bamboo cotton cap (I still use mine to dry my hair and as a comfort love my little skull caps).
12. Get someone to pour water gently from a jug whilst you wash like you would with a baby it stops knots and causing trauma also itsvthenone time you may want some moral support if those little curls of doom start coming out!! Having a reassuring voice telling you it's fine and taking the hair out of your hand helps!!!
13. Use gentle detangler with your bamboo comb when wet bit then leave it alone!!! Comb your hair morning and night but try to just leave it be!!!
14. Bandanas are also a friend they keep the falling hairs off your face and cover your scalp if it's hot as burning is easy with the shiny patches I can only imagine this would hurt!!!
15. Afterwards hair growth products are your best friend!!
16. The cold cap doesn't work for everyone- this isn't fair but is the bottom line.
Sorry if this is long but I kind of wish I'd have had it laid out for me from the start.

I wish all of you the best outcome possible in every aspect of your treatment. I found this thread a lifeline so like to pay it forward. Xxx
Member
Posts: 21
Registered: ‎03-04-2017

Re: Cold Cap - did it help keep your hair?

Hi all

I went today for my third FEC , I have lost 90%of hair and resemble Gollum now too, I was thinking I could no longer do the cold cap but they said carry on as changing to Tax next round and nurse advised it is not as harsh on the hair so my hair should start growing back so after reading comments on here I carried on. it was much colder this time couldnt wait to get it off , however painkillers took the edge off , I wear my topper to work  and thats all good and hats and beanies at home . Like someone else said I was really disappointed in my results as other ladies I saw still had so much hair but it growing back quicker motivates me to carry on

 

Community Champion
Posts: 1,189
Registered: ‎24-11-2014

Re: Cold Cap - did it help keep your hair?

Hey billy bear thank you for commenting - hopefully our thread will help others through their treatment.

I didn't lose as much as you (probably 50% all over) but like you it started growing back during treatment. Had my last chemo 10 April 2015 and 6 weeks later had cut and colour and 2 inches of new hair growth filling in the gaps.

Many ladies had commented similar experiences, it seems that even if you do have hair loss with cold cap it appears to help re-growth to be quicker. X
Member
Posts: 1
Registered: ‎27-04-2017

Re: Cold Cap - did it help keep your hair?

Hello ladies. I'm a bit nervous because this is the first time I have added to a blog but I found others peoples' comments useful when I was considering using a cold cap.  Like many of you I struggled through 6 chemo sessions using the cold cap and found the first 10 minutes or so the worst part but despite the tears I persevered and am glad I did.  I'm not sure if anyone has experienced the same results as me but I lost more than 90% of my long hair by the time I finished chemo but found that "new" hair has continued to grow! Now just 5 weeks after finishing chemo I have a full head of hair that is 3 to 4 centremetres in length and 2 days ago trimmed of the last of my long hair so I now sport, what my best friend cals, my pixie look. 

Member
Posts: 1
Registered: ‎23-04-2017

Re: Cold Cap - did it help keep your hair?

Hi Everyone, I am going to have my 3rd AC Treatment next Tuesday, I have been using the

 Paxman Cold Cap.  I am shedding loads and I'm now on Day 20,  I have another 6 treatment to go.  I Am following all the guidelines about how to take care of your hair during Treatments and using the Cold Cap. I would like to know if my Hair Shedding will slow down?

Thanking you all in advanceSmiley Happy

 

Member
Posts: 8
Registered: ‎23-02-2017

Re: Cold Cap - did it help keep your hair?

Hi Amoyart, I am using Paxman too fingers crossed to you get to day 14 !!Mine was ok until then and now is shedding heaps ! My hair grows very fast and they said i might lose up to 70% but it will grow back faster so I am continuing with it-they will have to put some gauze or a paper hat on to protect my scalp from frost bite lol hope I got hair in 4 days as more chemo..Good Luck hun xx

Member
Posts: 8
Registered: ‎23-02-2017

Re: Cold Cap - did it help keep your hair?

Hi Ladies I started the Paxman cold cap -the nurses use it -about two and a half weeks ago and as they do everything I hope its all ok, but in the last 2 days its coming out and 6 hairs together in clumps it just wont stop!! They say if your hair grows fast that you could loose up to 70% but that it will grow back quicker and to not shave it off-I am tempted but am wearing a hat all the time to collect the hair thats falling.The ladies using their own cold caps and ice seem to have better results as they monitor the temps more closely. Baldom here I come lol I am getting a wig as I will need one, I have some turbans but need a wig for work. Sharon.xx

Member
Posts: 522
Registered: ‎28-10-2016

Re: Cold Cap - did it help keep your hair?

There are 2 reasons you may be losing hair on your crown. The cap may be too big and not getting a proper seal to the top of you head. Make sure that bit is really wet and has plenty of conditioner. Go down a cap size. And tighten chin strap.
Also make sure you defrost. Pulling the cap off to soon will break the hair as it is frozen to the inside of the cap xc
Member
Posts: 1
Registered: ‎22-04-2017

Re: Cold Cap - did it help keep your hair?

You're not alone! I've done everything perfect according to the cold cap directions and lost a ton of my hair days 11-21 leaving a bald spot on my crown that I could have gotten away with hiding with a combover however the thinning grew and and grew over the next few weeks down the sides. Right now I could get by with a clip on topper instead of a full wig but I still have 2 more chemos to get through and shedding continues daily. It's at a lesser rate but that can add up over the next 6-8 weeks. I'm devastated. My expectations were such that Zero wigs or hair pieces would be needed in this process and I am totally depressed about it. I k kw I should be greatfyl for the hair I still have in the back so trying to focus on that. Love and hugs dearie. I share your woes and send you the best wishes.
Member
Posts: 2
Registered: ‎21-04-2017

Re: Cold Cap - did it help keep your hair?

I am about to have my 3rd FEC on Monday and using cold caps, too.  I have been fortunate.  I had a lot of hair to begin with and only shedding a bit more than usual, but nothing noticeable.  I start 45min before, but continue it for 6 hours after.  I know it's a pain, but it's worth it to me. my hair has not changed at all.  I'm not sure if it's me or what, but I only feel a bit of discomfort the first few minutes.  I will pray for you.  I know it isn't easy.  xoxo 

Member
Posts: 2
Registered: ‎21-04-2017

Re: Cold Cap - did it help keep your hair?

I am about to go through chemo #3, and thankfully, I still have all my hair.  I am using Arctic Cold Caps.  i start 45min before infusion and continue 6 hours after.  I wash my hair 2-3 x a week, but do use organic conditioner or cur activator everyday.  I have curly hair, so I cannot go a day ala natural Smiley Happy  i still have my eyebrows, my eyelashes are thinning, but still have my hair.  a Bad hair day is better than no hair day for me.  Good Luck, all. 

Member
Posts: 21
Registered: ‎03-04-2017

Re: Cold Cap - did it help keep your hair?

I have had two fecs using cold cap but 80 percent gone now and what's left looks terrible so I got a hair topper which I have to say is so much more comfy than a wig I just need to hold on to my small bit of hair as it clips on I had loads of Thick hair too which I constantly had to blow dry so that's one consultation I guess as all I have to do now is clip on my hair
Member
Posts: 20
Registered: ‎11-12-2016

Re: Cold Cap - did it help keep your hair?

Many thanks riversidedawn, that's a good idea. I will suggest it, that's made me feel better about tomorrow.
X
Community Champion
Posts: 1,189
Registered: ‎24-11-2014

Re: Cold Cap - did it help keep your hair?

Amoyart, my nurse put a layer or two of gauze on the top of my head when I thinned, to prevent ice burns. It was still effective through this x
Member
Posts: 20
Registered: ‎11-12-2016

Re: Cold Cap - did it help keep your hair?

Hi everyone,
I am just about to have my 3rd FEC tomorrow. I have had a cold cap so far. I had no hair loss in the first cycle and then in the last 3 weeks it hasbeen persistent generalised hairloss. I am quite disappointed and I had to wear a wig yesterday as my parting is now quite wide and my crown quite sparse. I wished to know if the cold cap will be bearable or not. I was ok with the first 2 treatments with doing deep breathing. I was lucky not to get a headache. I am due for 3 docatexel next which involves a much shorter time with the cold cap so I am going to try to keep going. I know I feel better having some hair.
Xx to you all
Member
Posts: 13
Registered: ‎03-04-2017

Re: Cold Cap - did it help keep your hair?

 
Member
Posts: 1
Registered: ‎17-04-2017

Re: Cold Cap - did it help keep your hair?

I've had 5 out of my 6 chemo treatments (docetaxel and carboplatin) so far and have been using an ice cap throughout. The first fifteen minutes is very painful but after that I seem to go through the pain barrier and rely on a heat pad to try to keep me warm. Take something to distract yourself and help get you through the difficult bits. I didn't loose any hair for the first couple of cycles. Then each time I washed my hair I probably lost about 30-40 strands and a few more each time I brush it. The good news is it's not from one area and therefore you can't really notice the loss. Fingers crossed it stays that way. I've always had quite fine hair and had it cut into a short bob during my first cycle. I wash my hair using a ph balanced baby shampoo, no conditioner (except whilst wearing the ice cap). I pat my hair with a towel after washing it and then use a hair dryer on medium heat, medium power as if I let it dry naturally it gets greecier quicker then I'd have to wash it more. I comb it with a wide toothed comb. Good luck to those on their cancer 'journey'.