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Yiya's avatar
Yiya
Member
6 years ago

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

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!


cold-cap
hair-loss
  • Sister's avatar
    Sister
    Member
    6 years ago
    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.
  • Yiya's avatar
    Yiya
    Member
    6 years ago
    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!
  • CassW88's avatar
    CassW88
    Member
    6 years ago
    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. 
  • Zoffiel's avatar
    Zoffiel
    Member
    6 years ago
    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