BYO Cold Cap?

katym

Hi all,
I have just found out that my hospital (Monash) doesn’t offer the cold cap for chemo. The breast care nurse I spoke to was very disparaging of them, saying there was no evidence they worked, which surprises me as they seem relatively common in better hospitals. 

She said the only option was to BYO frozen caps in an esky - has anyone here tried this? Was it successful? How do you keep the caps cold enough?

arpie

Hi @katym

I am sorry that the Breast Care Nurse was disparaging of the Cold Caps - they seem to work for some women, but not for all. It may depend on the 'strength' of the hair - some have very 'thick, strong' hair whilst others have very fine hair (or it may be the other way around.) 

Some women are keen to use them, but find they just can't cope with the coldness ..... yet others don't have a problem with the cold.  So, it is a bit 'weird' that some find it 'easy' yet others find it 'hard'.

Even if successful, the use of a cold cap may still result in 'some' hair loss - just not as much or as patchy as if not used at all.

I didn't have chemo so didn't need to access one.  I know with our local chemo Rooms, that a lot of money was raised to provide a Cold Cap machine, that supports 2 patients at a time ... and I am sure they would have put that money towards something 'better' - if they didn't have evidence that the Cold Caps work! 

The chemo hits all the fast growing cells, as many cancer cells are also fast growing - which is why skin, hair and even fingernails & toenails are often impacted.  Some people have cold things for their hands & feet too, to help prevent neuropathy!  Once again - it helps some, but not necessarily all.  I don't think they really know  who & why someone is going to 'miss out'.   

Take care & good luck

unicorn3

Can you elect to do your chemo at another hospital that does offer them? I did do cold cap but I had to do it at the local private hospital and use my private health insurance.  I still did lose a lot of hair and had to cut it super short at the end of chemo, but I didn’t go bald so while I gave this weird haircut now I was able to keep everything a secret and still attend things for my 8 year old daughter which is what I wanted, I’m sure people wonder why my hair is like this now instead of my previous long hair but no one has said anything
in regards to the byo caps I followed a lady in instagram who did it and it looks like a lot of work, you need to have multiple caps and keep the caps on ice and kept at a certain temperature and changed at certain intervals, this lady had to take her mum to every session to help with it all, it did work but it looked expensive and tricky. 

Best wishes with whatever you decide 

Blossom1961

If there is a private hospital close by that does the cold cap you may be able to go there as a public patient for your chemo. In Geelong, public patients who want the cold cap are sent to Geelong Epworth private for no cost. Worth asking anyway.

katym

Thank you for your comments!

@arpie - I know - I feel like the evidence is there that the cold caps work. They're not exactly new technology. I would 100% try if I could. This attitude from the nurse is pretty on par with my ongoing experience at this hospital, so I am not surprised.

@unicorn3 - thank you for this insight. I have looked into the frozen caps but I don't know how one would keep it at the right temperature - surely it begins to warm up once on the head and thus isn't really stable. Plus this hospital say that no-one is allowed to sit with you during the infusion so I don't know if it is really an option for me.

@Blossom1961 - this is amazing! Thanks for this tip I am going to ask! I would do this in a heartbeat.

unicorn3

@katym yes definitely ask if you can go elsewhere I do think cold cap is definitely worth it, just not the byo ones as it does look way too hard to make it work. 

I made a couple of crucial errors with mine in stopping a couple of sessions early as I just couldn’t deal with the cold and I probably wasn’t gentle enough with my hair in between but I’d definitely still rate it worth my effort and am happy I did it.