Keeping my hair thru Chemo

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

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

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

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

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 :)

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

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

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

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)..

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.