Cold cap therapy
Just wondering who has used the PAXMAN scalp cooling system to reduce hair loss with chemo, and how successful it was or wasn’t? I’m on weekly paclitaxol treatments, and have decided to give this cooling system a try. I missed the first week as there was a lack of enthusiasm regarding it. However at my second chemo session yesterday a different nurse was very enthusiastic and I figured it was worth giving it a go. With breast cancer 10 years ago it was still very new and not easily available and so I lost my hair and it took months to return and then it was extremely curly at first. Chris
Scalp cooling - should I stop, done 11 chemos and 5 to go
Hi BCNA community, Thanks for all the helpful advice re scalp cooling. It helped me decide to start and perserve with it this year. I've done 11 chemos (4 x AC and 7 x Taxol) with 5 Taxols to go. At my last chemo the nurse sat me down for a quiet chat and said they were reluctant to continue with scalp cooling as I've lost over 50 percent of my hair (their advice is not to continue after this much loss as I could burn my scalp). Thanks to advice on here, I've been using gauze over any spots that are thin so I haven't burned my scalp (they did warn me about the burning about 6 chemos ago but I've been fine with gauze). It looks like I'm getting some regrowth now too, a few mms in some areas and mostly grey. My questions are: 1. Should I persist with scalp cooling if I'm getting regrowth during Taxol, is it regrowing only because I'm doing scalp cooling? 2. Has anyone actually had experience with scalp burning while using gauze for any thin areas? How bad is the burning? 3. If I am getting some regrowth surely I have more coverage to enable me to continue with scalp cooling? I do feel the nurses find it a bit of a hassle (not many people seem to use it at my day treatment unit) but at the end of the day they are willing to support my choice as long as I understand the risks. Also, I've kept enough hair that I generally wear hats out and about as I have enough wispy hair that makes me feel more confident. However I do pop on a wig if I am on a work call or going out in the evenings. Thanks!
My Scalp Cooling/Cold Caps experience
Below is a summary of my experience of the last 12 weeks with Cold Caps/Scalp Cooling When my oncologist suggested that I needed chemo, his very next words were ”we can retain your hair via cold caps”. Like many women, I was petrified of losing my hair and wanted some control of being "anonymous" during my treatment process. At that time I had never heard of scalp cooling/cold caps and had no idea what was involved. My oncologist was confident that it would work for me due to the Taxol chemo treatment I was about to undertake. He showed me pictures on his phone of his other patients and the success they had. So I was willing to give it a go and thankfully due to my private health insurance I was able to get into a hospital that offered the service very quickly. I used the Paxman machine. Ive attached a picture of what the machine looked like. Once its connected to your cap via the hose you see in the picture, it continually pumps out cold air to a certain temperature to freeze the hair follicles. My typical treatment day was as below I was given Ativan to take under my tongue to take the edge off that initial cold feeling. This usually takes about 30 minutes to kick in Whilst the Ativan was taking effect my canula was put in ready for infusion I then went to the bathroom with hubby who helped to wet my hair and place conditioner on it and comb it back to ensure there was no partline Back at my chemo chair, the caps were put on. There are 2 caps a silicone one underneath and another one that sits on top with the chin strap. I wore a Large inner cap and a Medium outer cap to ensure a tighter fit. The chin strap was annoying but tolerable. Its important that the cap is fitted properly and you have a snug fit, the nurses were great as they knew what to do but by the end I became an expert too The machine is then turned on and cold air starts pumping straight away. A 30 minute timer is set at this stage and my pre meds are given at this point too. The first 15 minutes were the hardest, after that my head was so numb I could not feel it. Taxol infusion then started after the 30 minutes was over, this typically took about 1 hour. After the Taxol was over I had to sit with the cap on for another 1 hour. When I had Herceptin every 3 weeks, this hour was used for this infusion so no extra time was really needed. So overall the cap was on for 2.5 hours, a few times when it was taken off I had icicles on my head J I repeated the above 12 times over 12 weeks. I really did not think I was initially going to tolerate it as I do feel the cold. It was easier than I initially thought and my encouragement was when I went in week after week and the nursing staff and oncologist were amazed at how much hair I still I had, it gave me the drive to keep going with it. My home care was as follows: When I got home from treatment, my hair was flat/wet from conditioner etc, so this became my wash day. I washed with Dermaveen shampoo and conditioner which was free from all parabens, sulphates, perfumes etc. The gentler the products the better. I also used luke warm water. I lightly towel dried and then sat outside to air dry, thankfully it was summer and it would dry quickly I never used the hairdryer the entire 12 weeks and I usually have styled hair so this was difficult My roots became a problem after a few weeks so I used some root touch-up products that were free from Peroxide and Ammonia and they helped to camouflage the grey hair. I used some Argan Oil at the ends as my hair got dry as treatment progressed. I used no other styling products. I only combed my hair with a wide toothed comb, no harsh brushes etc My Hair loss progressed as follows Hair loss started at Week 4/5 Hair loss was consistent, I did not have a big shed at any point in time Picture with the least hair loss is what I typically got daily after combing my hair The picture with the most loss was after wash day, this was always the most I lost The other two pictures are what my hair looks like at the end of the 12 weeks, as you can see I have lots of hair left, no impact on my part line either. I did have thick hair to begin with, I can notice that it has thinned but most others would hardly notice the difference. Im not sure how much more I will keep shedding and there is varying opinions as to when I can color my hair and go back to normal styling. For now im going to give myself another 6 weeks of “babying” my hair as if im still on chemo and then hopefully get back to my pre-chemo hair routine. There is varying degrees of success dependant on the chemo plan your on and with the harsher chemo mixes the results may not be as good but its worth having a conversation with your oncologist to see if it would be something you should try. I so wish it was available in more hospitals and especially in the public arena. My hospital had 2 machines (2 people can use it at the same time) which meant upto 8 patients could use it daily (AM or PM slots), on some days it was hard to get a machine and as my treatment progressed more and more patients were using the scalp cooling as part of their treatment plan. Im planning to talk to my oncologist about what it would take to do some fundraising to get funds to buy a scalp cooling machine for a local hospital that does not offer the service as yet, a little way I can give back for something that was a positive outcome for me. If anyone has any questions, im more than happy to answer them and provide support to anyone who is thinking of undertaking scalp cooling. Angie
First round of Chemo wearing cool cap
I had my first round of chemo yesterday. I’m scheduled for 4 cycles of docetaxel and cyclophosphamide at 21 day intervals. I really have no expectations of how I’ll handle treatment, however I am a little surprised to wake today feeling ‘normal’. This is an unexpected opportunity to enjoy the day. I realise this will probably change in the coming days, but small positives make me feel happy. I wore a cool cap for the infusion which took my time in hospital from 2 hours to 4 1/2 hours. The first 2 minutes was a little intense but after that it was fine. I hope to retain my hair but again am prepared to lose it as well. If you’ve had my combo of chemo, what were your best and worst days?
Mater Springfield. 80% success rate now with cold caps!!! And the boys are using it too!
HI everyone, i went for my 3 monthly oncology check up yesterday. As I was one of the first few people to use their new paxman scalp cooler I was keen to see how it was going for them. I had a chat to the nursing manager who was saying that they are having about an 80-85% success rate with it now. The nursing team are now pros at fitting the caps and checking the positioning throughout treatment to get the best results. They are stoked they can offer the service and have a number of men using it as well. I can't speak highly enough of this team of nurses. Their dedication and compassion for their patients is second to none. Everybody there from the doctors, nursing team through to the receptionists are always so welcoming anc caring. Have a great day everybody. XOXOXo
Cold Caps
I started my 1st AC treatment on the 5th Jan and was pretty much told by my oncologist to use the cold caps. She stated that they didn't work for everyone 50/50 but they were worth a try. I found the cold cap not to be an issue and warm blankets definitely helped. I have been only washing my hair every 4 days in tepid/coolish water since and using a very gentle organic shampoo and conditioner. If I do any styling at all it's on a cool shot with my hairdryer and very quickly. On Friday, day 16 and for the last couple of days I have noticed that my hair is thinning a little when I brush it ( something I do as little as possible ) but is doing so evenly at the moment. I am doing the cold caps not for a vanity thing but probably more so for a recovery stand point, I was told that your hair grows back more quickly once Chemo is finished. I did have a teary day yesterday as it is confronting thinking that your hair may be gone in the morning, but I guess a lot of you have faced that day and moved on as will I. If I do lose my hair, do any of you have any advice as to weather or not to continue with the cold caps, I do know that Dak2 ( di ) mentioned that her hair initially thinned at the top and sticking with the cold caps helped with regrowth in that spot. I am posting this as I have found that there isn't a lot of 'girly' advice out there regarding the use of cold caps. I guess not everyone has the opportunity to have them offered so I am lucky in that regard. My Chemo regime is AC x 4 over 12 weeks then Taxol and Herceptin weekly x 12 weeks so I guess my hair or whatever remains will definitely test the cold caps.
Cooling Cap update
So, for those of you who have been following my saga/experiment with the cooling caps or for anyone who is interested in maybe giving them a go, I thought I'd post an update with some photos. The first photo was taken just before chemo started to give you an idea of what I started with: And this is what I have now after three rounds of FEC. I am still losing a lot of hair everyday as my drain pipes will attest to, and there is a growing bald spot on top of my head. But I can still cover it with hair bands and hats at this stage so I guess I'll continue, as horrible as the cooling caps are. Eyelashes and eyebrows are thinning though. x-SA reflective moment
Having a reflective moment as my daughter naps... So, today as I attempted to wash my hair and again watched in dismay as huge, huge clumps fell out and accumulated around the drain, I was feeling a little down. The itchiness around my eyebrows is suggesting that my eyebrows are about to follow suit. The cold cap is working, yes. After two rounds of FEC I should have no hair by now but I think I have lost around 50%. And I am so tired. So very tired. I needed something to remind me why I was doing this. After my surgery but before chemo started I had some family photos taken. I was looking through them today to remind me that this, THIS is why I am doing all of this. My family. My two beautiful girls. I couldn't help but notice the dark circles and tiredness of my eyes and of my husband's. And this was before chemo had even started. It takes its toll. I might Photoshop them out later. lol And my hair. I had so much hair! I guess that's why if a stranger saw me now they wouldn't know any different but it has thinned considerably. 1 small bald spot appearing. If it gets any bigger, it's time to shave. I hate that cold cap so much. I have such a huge skull (a family thing, my poor mum who gave birth to four of us in the days before drugs!) it doesn't really fit me properly and hurts. I have been researching my family history for the genetics test coming up. It has been so revealing. Much more breast cancer in my family than I ever knew about. Well, I'll be the first in my family to have the genetics test done. We'll soon find out if our family carries the gene. Family. I love them so much. I wish I had more energy for my girls right now.
