Hi all, I've just started chemo again for Breast Cancer. This is the second time I've done it; I also had breast cancer back in 2002. Then, I lost all my long hair, which I actually found to be the most distressing part of the whole process. It took literally years to grow back to the length it had been, and I didn't feel truly like myself until it had. This time, 2 weeks in, I still have hair! I used Penguin Cold Caps, which cool your scalp enough for the hair follicles to be protected from the Chemo Drugs (I'm on TC.) While I'm thrilled that it works, it's really disappointing that no hospitals in Melbourne offer it as a service (as far as I can tell, the only hospital in Aust is the Mater in Syd). I'm really lucky my oncologist said it was OK for me to do it, and the nursing staff are allowing it, but it means all the organisation of hiring, refrigerating and the fitting them (a new one goes on every 20-30mins) is up to me and my lovely husband. From what I can tell, the hurdles for hospitals would be something like this; they are too labour intensive for the nursing staff to change them on top of their other responsibilites. So the patient would need to arrange their own support person. If that person puts them on too cold and causes an injury, the Hospital wouldn't want to take responsibility. If they are fitted incorrectly (not cold enough, not consistently close to the head, not for the full length of time required etc) and the hair falls out, again the Hospital wouldn't want to take responsibility. Getting them cold enough (-35 degrees, which is colder tha a standard freezer) requires either an (expensive) medical grade freezer or some logistics involving dry ice and eskies. So hospitals put it in the "too hard basket" and we are not even informed that in many cases it's actually OPTIONAL to lose your hair. I wonder if this will ever change? I know a set of caps were donated to a large hospital in Melbourne, but they aren't being used by anyone, because it's all too hard... I also know someone who changed hospitals mid treatment because the hospital she was at was not allowing her to use the ones she'd hired. How can we change this? Maybe its just a matter of more of us arranging our own, and asking for hospital provided Cold Caps until there's a groundswell? Keeping my hair really is crucial to my sense of well being. While it's certinaly not life saving, it is actually vital to me feeling like myself. Has anyone else tried them? What were your experiences?

Wow that is so great that you get to keep your hair. I would love to have had that option. I remember reading a brief reference to cold caps in amongst all the literature I was given before chemo and it said they didn't really work. Maybe that's just what the authorities want us to think.It does sound like a bit of hassle for staff and patients but bloody hell it would be so worth it. I absolutely hated losing my hair. It's growing back now but I still really really hate it - still so short and curly - yuck! No offence to people with curly hair but it looks dreadful on me. It's been almost eight months since I finished chemo and I still wear hats at home and a bloody annoying wig when I go out. Frankly I don't go out as much as I used to because of my hair or lack of it. And it's really hard to exercise in a wig. I suppose I should get over myself and not be so self-conscious but that's just the way I am.I hope I never have to go through this BC nightmare again, but if by some chance I do, I will definitely try and arrange somehow to have the cold cap. Thanks for you post Sharon. I hope all goes as well as possible for you. I'm sure chemo is still pretty horrible even without the hair losss. Good luck. Janet.

Hi Sharon, I used the frozen gloves during my chemo. They worked a treat for my nails. I get what you are saying re the time factor for oncology staff. I found the gloves excruciating the first time but tolerable from them on. One time I had to "share" with someone else as the unit only had two pairs!!! "Somebody" is not very considerate of "us" are they? Hair always does grow back but if it is important to the owner then it is important enough for something to be done (especially if there is an option). I must say I thought wearing the frozen cap would be horrendous after the first time with the frozen gloves. I never want to have chemo again - I would research the frozen cap option though. Well done to you for perservering and standing up for what you want. Best wishes XLeonie

Thanks Janet, Yes I feel for you, I lost my hair first time round... All the comments of "you have a great shaped head" from my friends were nice, but... I'm sorry you didn't have the info on the Cold Caps when you needed it. I hope you never will again, but in case you do, I got them from these people; http://penguincoldcaps.co.nz I'm not sure if there are other suppliers. Leonie - when the Cold Caps first go on they are COLD! But after 2-3 minutes it kind of settles down. I managed to stick it out for the hr prior, the chemo and the 4 hrs after, and I'm glad I did. But I can also understand it's not for everyone. Thanks to both of you for your support, may we all come through this with our equanimity intact!

Thanks for the link Sharon. I have made a note of it. Hope I never need it though. Janet :)

Hi there, I am about to start chemo with HTC combo. The cold caps blog gave me some hope but when I looked at the cost I dont know if I can justify it as I am also considering paying for reconstruction post surgery. Has anyone had any experience with sharing the cost with another person receiving chemo? seeing as you only need them once every three weeks?? Love to know so I could consider this option.

Keeping my hair thru Chemo | BCNA Online Network

15 Replies

JessicaV
Member
11 years ago
Hi, I am going to write a blog post about hair and cold caps, but thought I should mention a new opportunity for Perth chemo patients wanting access to coldcaps

Arlene Chan at the Breast Cancer Research Centre in Perth told us she is going to start a trial of coldcaps and how well it stops hairloss with different chemo regimes at 2 different temperatures.

. She explained well that these are very unlikely to have the risks that I was concerned about. But she wants to get evidence of what works best to really save hair, and how effective it is for diff chemo regimes. She said if she can help prevent one more side effect of treatment that people find distressing she will be very happy.

She will have the machine provided for 6 months, and will be able to treat 2 people in the morning (1 higher temp and 1 lower temp) and 2 people in the afternoon. She will offer this to both primary cancer patients and metastatic cancer patients.

I think you have to be scheduled for chemo with her starting at the right time. So anyone coming up for a new block of treatment with her might be lucky.

If you have any enquiries, you need to contact the Breast Cancer Research Centre on 9321 2354
Suite 42 Fourth Floor, 146 Mounts Bay Road
Perth WA 6000
sharond
Member
11 years ago
Also, depending on the specific Chemo drugs (for example, Doxetacel), black or dark coloured nail poilsh might be the solution to keeping your nails. In some cases is the combo of chemo drugs and light that makes them fall off, so no light getting through the nail; problem solved.

See here for more info

http://www.bcna.org.au/new-diagnosis/treatment/chemotherapy/nail-changes
sharond
Member
11 years ago
Hi Jessica.

There are, many, many different types of breast cancer.

Each has it's own profile of hormonal response, stage, grade, involvement of lymph nodes, specific breast tissue that it affects (eg ductal etc), genetic risk factors and places they are likely to spread to.

Your oncologist can give you very specific statistical information on the likely spread of your particular cancer to specific body parts including the scalp and fingers. It's not a "one size fits all" scenario.

A review of studies into the safety of cold caps said this;

"The 2010 expert opinion review paper by Rugo reviewed the existing studies on scalp metastases. They concluded that, “Scalp cooling has not been shown to increase the incidence of scalp metastases in patients with both early and late stage breast cancer….It is our expert opinion that scalp cooling can and should be offered to breast cancer patients who will be treated with adjuvant chemotherapy, and also those who are offered palliative chemotherapy associated with a significant risk of alopecia. The risks involved appear to be extremely small and the potential gain for the large number of women receiving adjuvant chemotherapy for breast cancer in the United States is substantial” (Rugo, 2010)."

For more info see the full document here

http://www.rapunzelproject.org/LinkClick.aspx?fileticket=6zLSpIu5Hro%3d&tabid=58

In Australia the cold caps aren't very well known (they have been used for nearly 20 years in Europe) so some oncologists here automatically discount them because they are unfamiliar.

All the best,

Sharon
JessicaV
Member
11 years ago
While I sympathise with the wish to keep your hair and also your fingernails during chemo it is a choice I would never make myself.. My oncologist warned that if you choose to use the cold-caps and cold-gloves, you increase your risk of a recurrence in those areas. The reason they work is that cold shuts down the blood supply to your scalp with the coldcap, and to the surface of your hands with the gloves. You keep your hair or your nails by not giving those parts of you the full intensive chemotherapy. treatment. Skin cancer is one of the forms metastatic spread of breast cancer can take. If you are fine with the risk that you may later get skin cancer there because of this, then that may be a good choice for you.. But please be aware of the possible costs..

best wishes

Jessica
shat
Member
11 years ago
Hi Sharon,

i dont feel at all pressured. In fact I really appreciate you looking into this so I can consider my options because it is all sooo overwhelming. I will try to give Vanessa a call today to discuss technicalities.

thanks heaps :)
sharond
Member
11 years ago
Hi again

I hope you don't mind that I mentioned to Vanessa there was someone in Hobart considering cold caps. I didn't give her any contact details for you of course.

She mentioned that her landline is down at the moment but if you wanted to, you could text her and she can call you back. Here's her mobile number; +64 21 585358. There are 2 sets elsewhere in Australia that could be sent to you in the next day or two if need be.

I certainly hope you don't think that this is "pressure" or feel uncomfortable about this info but I just wanted to make sure you had the info you needed in case you do decide to go ahead. (It is sent with love!)

She also mentioned she would rather someone paid it off over a longer period of time, than missed out because the costs were prohibitive.

Wishing you an easy path through your treatment and beyond.

Sharon
sharond
Member
11 years ago
Hi there

Vanessa can freight them anywhere (she sent them to me in Melbourne, from New Zealand) so being in Hobart isn't really any more difficult than Melbourne.

But you definitely need to start the cold caps for the first (and every) treatment. Missing cold caps for ANY treatment will mean you will lose your hair (as far as I know.)

Vanessa is lovely and will be able to talk you through what's involved, the timelines of getting caps to you, whether there may be a set already in Hobart that you could possibly access.

I hope this helps.

I know there's a lot going on when you are about to start Chemo and it can be overwhelming. I lost my hair the first time I did Chemo in 2002 and absolutely hated it. I found the whole experience so much easier to get through knowing that I had a normal looking head of hear to walk out into the world with. (it did thin a bit, but not so much that others would notice.)

Feel free to give me a call if you want to aks any questions? 0414401779.

All the best

Sharon
sharond
Member
11 years ago
Hi there

Vanessa can freight them anywhere (she sent them to me in Melbourne, from New Zealand) so being in Hobart isn't really any more difficult than Melbourne.

But you definitely need to start the cold caps for the first (and every) treatment. Missing cold caps for ANY treatment will mean you will lose your hair (as far as I know.)

Vanessa is lovely and will be able to talk you through what's involved, the timelines of getting caps to you, whether there may be a set already in Hobart that you could possibly access.

I hope this helps.

I know there's a lot going on when you are about to start Chemo and it can be overwhelming. I lost my hair the first time I did Chemo in 2002 and absolutely hated it. I found the whole experience so much easier to get through knowing that I had a normal looking head of hear to walk out into the world with. (it did thin a bit, but not so much that others would notice.)

Feel free to give me a call if you want to aks any questions? 0414401779.

All the best

Sharon
shat
Member
11 years ago
thanks, I will look into it. Unfortunately, I am in Hobart so I doubt there is any service but all this info is good to know and you never know unless you put it out there.

I do have limited time to arrange, do you know anything about starting to use coldcaps on the second round ( apparently I may not lose much hair on the first round)..
sharond
Member
11 years ago
Hi there.

It can be done (in theory) if there is someone in your city using them at the same time. But keep in mind there is the possibility that your scheduals could change so that you were both wanting them on the same day (which would not work because you need to get them cold enough beforehand.)

So if you feel assertive enough to say "actually i need to postpone my treatment by a day" if the need arises, then it could work. The hospitals are actually quite used to shuffling the scheduals around for various medical reasons, so it might not be as daunting or impossible as it might seem. Also a good idea to get a couple of contact numbers for the family or friends of the person you are sharing with, in case they become hard to contact (which can happen when chemo bleariness kicks in.)

I suggest you have a chat to the lovely Vanessa at Penguin Cold Caps NZ (who used them herself for her own chemo) Ph 0011 64 333 96 351.

I'm not sure what citiy you are in but I think the Epworth in Melb recently got some machines that do it (rather than individual caps you have to keep replacing with cold ones.) not sure what the cost implications of changing hospitals would be.