Ice cap or no ice cap? personal experiences?

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

If you've been given the option and are interested enough to give it a go, why not - you won't know if it's successful for you until you do it.  I did try it for the first couple of AC treatments but found that not only was I losing a fair bit of hair throughout but also that I ended up with a landing strip across the top from ear to ear (possibly caused by the cap not being firm enough against the scalp although the nurses were pretty thorough about that).  That's when I chose to stop as I found that more upsetting than being bald.  The cold cap does add considerable time onto each treatment but if you don't mind that, and keeping your hair if possible is important to you, there's no reason not to try it - you can always discontinue if it's too much.

Cold cap is certainly worth trying but don’t ignore the possibility of a wig. I wore one right through treatment and while close colleagues knew everything, most of the large number of people I worked with on projects had no idea at Allen . There are lots of options from wig libraries to purchase at a range of prices. I opted for a good synthetic wig, easy to look after, no styling required and lightweight. Best wishes. 

Sorry, at all not Allen!! 

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

Dear looeeze,
I very successfully used the cold cap, and would recommend it. I had thinning, but no-one else noticed.
Other than my close family and friends, no-one knew I was sick. I did not find it painful.
I probably got a lot less sympathy.
I did purchase a wig prior to starting Chemo, to be ready. As COVID lockdown was about to start
and I didn't know if I would be able to get to a wig shop or feel up to it. Or if cold cap would work for me.
I also had my eyebrows tattooed prior, as I knew they would go.
All the best with your treatments.

Thank you Abbydog
Ive not been told anything about the cold cap really bit only that i will be offered it. I have read you need to have wet hair and conditioner? Do you apply this there? Did you? 

Dear looeeze,
A good fitting cap is important. Even though I always had the same, best size for me. Sometimes an air bubble would be on top of my head under the cap. You could tell because if if you pushed down you could hear a noise of air coming out.
They had extra straps that I sometimes used when in doubt of the fit. That went over the top of my head around and under my chin. 
Wet hair is very important, I found out during my 20 week Chemo duration that curly hair should be really wet.
My nurses never suggested conditioner and I never used it. I suppose it couldn't hurt.
If you want to talk on the phone send me a private message.

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.

I think its success is in persistence. If you’re willing to do it correctly, and go through the extended time it requires, it works. If it’s not put on correctly, sometimes cos the nurses genuinely don’t know how, it won’t work. Also, if women find it uncomfortable and don’t persist it doesn’t work cos they stopped it too early, obviously, not because it lacks effectiveness. I think the question is, are ladies willing to persist with it or not? Meaning, wear it correctly and long enough for it to actually have a chance to work.