The good, the bad and the ugly of my cold cap journey

YiyaYiya Member Posts: 17
edited April 15 in Newly diagnosed

Dear everyone,

I am two and a half months past my last cycle of chemotherapy so I though I will share my experience with the cold calp.

I had 4 cycles of TC (20/11/18 to 23/01/19). I chose to do a neoadjuvant treatment and start with chemotherapy to allow genetic testing to happen and give me some time to think about the best surgical approach.

I used the Paxman cold calp. The extra small cap was too tight, so I wore inner small which moved a bit and outer small to try to keep it in place. I have lost about 50% of my hair (and I have heaps to start with) mostly in my crown, probably because the cap was a bit big for me. All the usual instructions to preserve hair were followed - washes once a week with coldish water and mild shampoo provided by my hospital (Sukin), no hairdryer, gentle brushing, silk pillowcase...

They tell you that you are going to lose hair, but I don't think that I was mentally prepared to deal with all the shedding and the clamps of hair in the brush. At face value the treatment has been successful, I only had to wear head scarfs for a couple of months and by now not too many people will tell that I have lost hair.

Was it an uncomfortable experience?, Yes, especially the first 20m. I learnt after the first cycle to take the Lorazepam that the hospital provided me to relax a bit earlier in the day at home (about an hour before treatment started) so by the time I got to hospital was almost out and barely felt a thing.

Was it worthy?, Absolutely, as you can see in the photos I still have a decent amount of hair

Would I do it again?, No, I wouldn't, especially if I required a longer chemo treatment. Chemotherapy and all the decisions that you need to take when fighting cancer is a stressful enough experience. Worrying on whether the caps are working and constantly cleaning up hairs adds another layer of stress that in hindsight I didn't need. Half way through the treatment I had a big bold spot at the top so I started wearing head scarfs and I grew to love them. 

Below is a photo collage of my journey, I hope that it is useful ladies!


Comments

  • ZoffielZoffiel Regional VictoriaMember Posts: 2,807
    Thanks @Yiya. Cold caps weren't an option for me-- they didn't exist when I first had chemo and the local hospital doesn't have them now anyway. I could have gone to Melbourne to access them but, like many others, being bald was less challenging than travelling.
    It's interesting that you wouldn't do it again and I think that is really helpful feedback for those who are struggling with the decision.
    I can only imagine how the oncology staff would have viewed another couple of hours of my discontented company every chemo cycle. I suspect they might have quietly disabled the machines or surupticiously fed me tranquilizers and stuck my hair to my head while I was out of it. Anything to get me home as soon as possible.
    It's really important to take your own personality into account in many aspects of treatment, particularly when it comes to cosmetic endeavours. Yep, the caps can work a treat and some people have had fantastic results. Most reports seem to mirror yours; sort of OK but not quite what you had hoped for. We've also seen some bitter disapointments. I, personally, could not have handled another disappointment and have huge respect for those willing to take the chance. Mxx
  • CassW88CassW88 Member Posts: 4
    Thank you @Yiya for sharing your journey. I am due to start my chemo journey and have been thinking whether or not to go the cold cap option. I had chosen not to due to that fact that I cant stand the cold :smiley: I also dont know how i would go with not being able to wash my hair every couple of days. 
  • YiyaYiya Member Posts: 17
    Hi @CassW88, in the photo you can see me with the wig I wore sometimes when the bold patches were too evident. I kept telling my husband that if I would have known the stress that seeing my hair slowly coming off was going to generate I would have shaved my hair from the very beginning. He always responded that nothing stopped me to do it at anytime, but you have already gone through the discomfort of a couple of sessions and feel silly to give up when you are half there... I am glad to see that you are at peace with your decision. Shout out if you need any support during chemo, hopefully it goes similar to mine and side effects are manageable!
  • SisterSister Adelaide Hills, SAMember Posts: 4,236
    I think they are great when they work well.  They didn't work well enough for me (I got the bald strip across my head from ear to ear) to continue and, in the end, it was as much for the kids as it was for me - when they said they didn't care, I stopped.  If someone is keen to try, I'd say go ahead but stop if it doesn't work or it gets too much.
  • poodlejulespoodlejules Member Posts: 285
    That's a great compilation @Yiya. I'm sure it will help others decide whether they will go down the cold cap path or not. Thanks for sharing! Just an after thought, maybe pop it in the hair loss category too?

  • Kiwi AngelKiwi Angel Sydney, NSWMember Posts: 1,913
    @Yiya that’s similar to my experience but it grew back incredibly fast after chemo and thicker than it was before. 
  • Belgrave14Belgrave14 Member Posts: 28
    Thanks for sharing. Mine came out in handfuls half way between my 2nd and 3rd treatment leaving me very thin on top but obviously still having hair. I decided to give it one last go, the session yesterday was horrible, mainly I think because I am now so thin on top that the cap was on my bare scalp. I nearly ditched it half way through. If I shed any more I will just shave, I bought some pretty scarves at the weekend just in case. I know it is “just” five more sessions but it would be lovely not to have to factor in the extra two hours each time. 
  • Lizzie75Lizzie75 MelbourneMember Posts: 13
    Thank you so much for sharing your story @Yiya as I am about to embark on my own chemo journey and have been considering using the cold caps but didn't know much about them from someone's personal point of view. I especially appreciate your candid photos of your hair during your chemo treatment as well to give me some idea of what might happen to my hair although I understand the outcome isn't the same for everyone. 

    I do have a question for you around your chemo if you don't mind me asking, you said the first 20m were the worst and why was that? I am feeling quite apprehensive about chemo as it is the fear of the unknown (how my body will react) and any bits of advice you can give me would be fantastic (apologies if this isn't the right thread for this question).

    To give some background to where I am at, I am 4 weeks post mastectomy of the left breast with a tissue expander done at the same time. It has taken me this long to start to feel ok again although the tissue expander still feels very weird (so rock hard!) but at least the pain has subsided considerably  :) 
  • kmakmkmakm MelbourneMember Posts: 7,429
    For what it's worth @Lizzie75, I had TC chemotherapy (four infusions) and tried the cold cap. I abandoned it after two cycles as it wasn't working well enough for me to persist. I believe it just didn't fit on my scalp well enough. Round the edges and at the back, where it was tight, I retained some hair, but the rest wasn't good. This is what it looked like the day before I had it shaved off:



    There were other bald patches round the sides. The thing is, if you try it, make sure it's squashed down really well on your head and with all over contact with your scalp.

    For me the first 12 minutes was especially intense. The temperature is well below 0° and it is very uncomfortable. But after 12 minutes it eased off a bit and round the half hour mark it's just numb and you're OK for the rest of the time. They give you lots of drugs to help. If they offer drugs, take them! The NUM who was administering my first infusion said that in the five years she'd been doing cold caps she'd only had one woman who asked for it to be removed in the first half hour.

    The first chemo cycle is often the worst for the exact reason you said, the fear of the unknown. After that, for most people, it's grotty but doable. For some lucky ones, it's relatively easy and they manage to work through it. One of the things  about BC treatment is that we all react differently so try not to anticipate trouble that may never happen. Easy to say but harder to do I know!

    Check out the Look Good Feel Better workshops while you're having chemo. They can really brighten a yucky time.

    https://lgfb.org.au/programs/

    And welcome to the forum! Hang in there and check back in here as often as you need to. I hope you find it as warm and supportive as I have. Big hug, K xox


  • YiyaYiya Member Posts: 17
    Hi @Lizzie75, as @kmakm has explained the start of the session while your head gets numb from the freezing cold cap and the sedative that the hospital provide kicks in could be very tough. For me it was the first 15 to 20 minutes that I had to fight through the cold and then I was pretty much asleep for the remaining 4 hours. What really helped me was to take a portable electric blanket with me as in general I get cold very easily, and sip on warm tea until I went to sleep and then when if I woke up through out the session. I was lucky enough to have my mum sitting with me in all the sessions and she helped me to keep warm with drinks and hot soup. That said, the lady cold-capping in the chair next to me wore sleeveless tops in all her sessions and spent her treatment reading a book and not bothering at all about the cold, so it is much more bearable for some people. Let us know how you go and if you need any additional tips
  • kmakmkmakm MelbourneMember Posts: 7,429
    I was given a heated blanket called a bear hugger. I liked it set at 38°. That kept me pretty comfortable. I needed a beanie for a few hours afterwards until I warmed up again.
  • Lizzie75Lizzie75 MelbourneMember Posts: 13
    Thanks heaps everyone for the tips regarding the cold caps as I think I'll definitely give one a go if I can.

    I think I just want to be prepared as I felt after my mastectomy and tissue expander surgery, it was so much worse than I expected (and feared) and I was in a state of shock for a while afterwards. Being informed helps a lot and I've also read up on some of the chemotherapy threads which have been great but scary af at the same time!

    I'll let you know how I go  :) 
  • kezmusckezmusc Member Posts: 1,181
    @Lizzie75.

    I had a fantastic run with the cold cap.  The discomfort for me only lasted a couple of minutes and I never took any sedatives. The first time is the worst as the cold comes on very fast and gives you a bit of a shock.  The next time you know what to expect so it's not as bad.
     It's another one of the things along the way that everyone responds to differently.  The fit is super important and I think it's best to be really well educated on it yourself before you start.  Some nurses are really good with it, others not so much.  If you want any tips just send me a p,m..

    This photo is heading to my last day of chemo.


  • Lizzie75Lizzie75 MelbourneMember Posts: 13
    Thanks @kezmusc for your photo and advice as well re the cold caps and I understand that making sure they fit correctly is the key to start with but if I have any more questions I will p.m you. I am meeting with my oncologist on Monday and will find out then when I begin as well as what type of chemo I'll be having but I do feel a bit better now, armed with more info and and idea of what is to come. My breast surgeon did tell me that it will be chemo once every three weeks for three months so 4 cycles I assume.

    I am not an overly vain person but of course I'd rather keep my hair than lose it mainly for my daughters who are only 6 and 8 and don't really understand what their mummy is going through but if I do end up losing my hair, I'll just get some pretty and funky beanies to wear!

    I know having chemo will be hard but I also know that I will get through it one day at a time. So thank you to all who have answered my questions and provided your experiences to show there is light at the end of all of this, I greatly appreciate it x


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