Hi All,I was newly diagnosed mid December, have had surgery and am recovering well. I am due to start 12 weeks of weekly chemotherapy using paclitaxel. I will also be receiving Herceptin 3 weekly for 12 months and goserelin (hormone treatment) for 5 years. I have been told about ice caps to minimise or prevent hair loss. From reading it seems that this doesn't always work and also sounds painful. I was wondering if any of you had personal experience of using or trying the cap - obviously the good and the bad. I think it's not so much losing my hair that is bothering me, but the thought that then it is so public and there is no hiding it then :( Thank you so much.

From memory (and I haven't got much of one), the nurses wet the hair and put conditioner through it, then put the cap on, fit it well, then put a tighter cap on top of that.

Thanks ladies. I really do appreciate you taking the time to respond. Im starting to lean towards the 'stuff it' angle and just go with the flow. I mean how often do we get to start our hair all over again? I have been advised off a great local store that sells head coverings especially for this and their website shows lots of choice. I will also look at wigs down the track when I am in a position to return to work. I teach so I want to be able to confidently stand at the from of the class again and not scare the children :) I wish all of you the very best of health as we fight our battles. I really am being sincere when I say what a bloody fantastic network of strong women we make xxx

hi @looeeze , my treatment was very similar to you. 12 weeks paclitaxel , an 3 weekly herceptin. I used the cold cap and it was very successful, very little hairloss. Yes it does add to treatment time, but in my case I had it during our first lockdown, so didnt have anywhere else to be. The nurses at my oncology unit were really good with the process. I wet my hair and combed conditioner through just before cap was fitted. I didnt find it very uncomfortable, a panadol helped dull the initial icecream headache. There were some ladies who didnt like it and stopped after first try. For me it was important to keep my hair, as it helped me to feel "normal". If you are being offered it, there is no harm giving it a try if it seems right for you. Happy to answer any questions you might have. Good luck travelling down this interesting road.

Hi @looeeze I'm using the cold cap currently on TC chemo - I would recommend going to the Paxman (brand of cold cap) website to understand a bit more about how to fit the cap. Unfortunately I didn't do this before my first chemo as didn't know the brand name and definitely had the wrong size cap on. It's hard to absolutely know - but I'm rocking a bald patch now and suspect it's because the cap was too small. I squeezed the small sized cap on thinking if it was super tight it would be the best fit, but this isn't actually the case. In my second session I used a large sized inner cap, and a medium sized over cap and this fit better. I've lost hair pretty evenly everywhere else but the crown is where it is most visible. I will persevere as am hoping more loss doesn't continue, as I can sort of conceal the thinning by arranging by hair - and have hair that is visible under hats etc. Best of luck but definitely take your time on getting the fit right and try out a few options - the nurses sometimes aren't so helpful and I wish I'd known how the cap should fit better first time round. xx

Hi @looeeze, I am sorry about your diagnosis, but it’s great to hear you are recovering well. You will find a wealth of information about the cold cap as many of us have used it with varied levels of success. The good thing is, you can try it and stop at any time as you will know if it is working within a couple of rounds. @kezmusc had a lot of success and has put a lot of information up with pics on the forum and I am sure others will join in too. Don’t forget, you will experience thinning of your hair, but hopefully you will keep most of it.I had 4 x AC before the 12 x taxol and the AC is known to cause hair loss, so my experience will be different to yours. It is quite an individual thing and you won’t know until you try. I didn’t have success with it and ended up losing my hair, but I gave it a red hot go and I am happy I gave it a try. Also, my hair started to grow back while on taxol (a lot of us had this) which may mean you have an even better chance of a good result with the cap.It adds time to your treatment as you will need to put the cap on for 1 hour before the infusion starts and leave it on for half an hour after the infusion finishes - I think those were the times and I hope I got it right. This adds quite a bit to your time, but well worth it if it works I think. The infusion itself took less than 1 hour in total without the cap, so you can see that it does make for a longer experience if you use it.Yes it is super cold - minus 4 - but I just kind of zoned out as you will get used to it. I also took Panadol before I arrived and that helped. The nurses will also give you a warm blanket to keep you warm. I would recommend doing your own research so you know what needs to happen to try and maximise your chance of success - cap needs to be tight and fit well, hair needs to be wet and coated with conditioner etc. The nurses are very supportive, but you need to make sure the cap fits properly as this is the key to success - only you will know if the cap is really snug on your head.I am wishing you all the best with your decision, but I definitely think it is worth a try. I know what you mean, once your hair is gone, your diagnosis can become quite public, but, I bought a fabulous wig (human hair) and it looked great and I can honestly say, a lot of people had no idea I was going through chemo. Take care. M x

Ice cap or no ice cap? personal experiences?

Sister
Member
5 years ago
From memory (and I haven't got much of one), the nurses wet the hair and put conditioner through it, then put the cap on, fit it well, then put a tighter cap on top of that.
JaneinMelbourne
Member
5 years ago
Hi @looeeze
I'm using the cold cap currently on TC chemo - I would recommend going to the Paxman (brand of cold cap) website to understand a bit more about how to fit the cap. Unfortunately I didn't do this before my first chemo as didn't know the brand name and definitely had the wrong size cap on. It's hard to absolutely know - but I'm rocking a bald patch now and suspect it's because the cap was too small. I squeezed the small sized cap on thinking if it was super tight it would be the best fit, but this isn't actually the case. In my second session I used a large sized inner cap, and a medium sized over cap and this fit better. I've lost hair pretty evenly everywhere else but the crown is where it is most visible. I will persevere as am hoping more loss doesn't continue, as I can sort of conceal the thinning by arranging by hair - and have hair that is visible under hats etc.
Best of luck but definitely take your time on getting the fit right and try out a few options - the nurses sometimes aren't so helpful and I wish I'd known how the cap should fit better first time round. xx
kezmusc
Member
5 years ago
@looeeze

I have a full walk through for the cold cap. Just PM me if you would like it.

Is it worth trying?................a resounding absolutely!!!!
I kept 90% of my hair and the stuff that came out shed evenly so no body could tell. @Abbydog is right though, nobody knows so no sympathy...but hey, that's how we want right?

It's definitely worth going in educated. Some nurses are well trained in capping and some are not. If you have an idea of what you're doing it's helpful.
looeeze
Member
5 years ago
Thank you all for taking the time to write such supportive and informative responses. You really have all helped me no end.
I still keep swinging between 'f@@k it, just embrace the bald' and 'save your hair at all costs', but at least now I have the information to back my crazy thoughts up!
I did have my hair cut and coloured yesterday with my beautiful hairdresser who is ready for whatever I decide. So for the next 2-3 weeks I will enjoy looking glamorous and fully appreciate it.
I wish you all well with your health and your roads to recovery.
xxx
RiotAtMidnight
Member
5 years ago
Hi @looeeze! I’m curious to know how you’ve been going with the cold cap? I’ve been using it. I’m heading into round 3 AC chemo this week, and in the last few days have shed So Much Hair! About 1/3rd of my hair I reckon, but at least it’s been even overall. I hope you’re doing well with treatment, and would love to hear how the cold cap is working for you (or not!) as I’m tossing up whether to continue... mainly due to the time it adds to each treatment day.
looeeze
Member
5 years ago
Hi!
Thanks for your message. I am
on a different treatment regime to you and am on taxol and not AC, and from what I can gather taxol is more gentle? I have been lucky so far. I am going into week 7/12 weekly treatments and have not shed much at all. In fact, I still had to shave my legs this weekend!
The best thing I did was go onto the Paxman website (brand of ice cap using) and watch the videos and read their info and FAQs (recommended by someone is this group). I have also joined the Paxman fb group which has been so helpful with women posting questions and feedback from all around the world using the same system.
It seems to be that everyone has a different experience even if on the same regime. Some women, like you, experience lots of early shedding but then get regrowth towards the end of their treatment. Others like me start to shed towards the end. Shedding can continue for 3 months post chemo. Some argue that even when lost a lot during chemo, continuing with the ice cap actually meant regrowth came back earlier, thicker and faster? It really is such a personal thing.
Wearing the cap is hard. I struggle with being connected to the iv let alone the cap too, especially as you say it adds another hour on to the end of treatment. That said i tell myself that every minute I wear it, is one less minute i won’t have to if that makes sense.
I know I have been really lucky so far but I am keeping myself level headed and open to the fact that i may lose lots at any time. I did a ‘look good, feel better’ course the other day (not sure if you can do those where you are) and part of it focused on wigs. I was fascinated by the human wigs and how real they looked. I won’t hesitate to get one if I need one and it has made me less fearful of losing my hair.
Sorry this has turned into an epic message lol.
Im not sure if Ive really helped in any way, but I will put the links below to the website and fb group if you wanted to check them out.
Happy for you to ask more questions, i think you can direct message if needed.
Lots of love x
looeeze
Member
5 years ago
https://www.facebook.com/groups/PaxmanScalpCooling/?ref=share
looeeze
Member
5 years ago
https://paxmanscalpcooling.com/

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