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!
I am Famous...well kind of. Officially a Paxman Pioneer for scalp cooling
A number of months ago I posted a picture on the Paxman facebook page of my hair on the last day of chemo. They contacted me and asked if I would put my story on their story website as one of their "Paxman Pioneers". They give you a list of questions they like answered in there with the aim to raise awareness and stop the negative vibes put out their by some of the medical profession. It's a bit of a monologue (and they left out some punctuation) but if anyone would like to have a look, here is the link. https://paxmanscalpcooling.com/experiences/testimonials/kerry-muscat I'll be signing autographs later hahahhaha.
Anyone tried Cold Therapy to prevent neuropathy in Taxol Chemo
Hi everyone, I was diagnosed with Her2 positive BC in April. I have been having AC dose dense chemo for the past six weeks (3 x 2 weeks) and have my last one on Thursday. I've tolerated it well which I credit partly to walking every day, between 30-40km a week. I start Paclitaxel chemo 12 x weekly two weeks later and I have been reading about Taxol based chemos being very likely to cause neuropathy. I'm keen to do as much as I can to avoid this. Online there are some new studies showing cold gloves and booties reduce these effects. I can see that it is commonly discussed on the UK forums. Has anyone used cold therapy while having chemo? I know that there is much discussion and use of cold capping but I can't see anything on the forums about using it to prevent neuropathy. (I considered cold capping but was told by my oncologist it didn't work well with AC.) The gloves and ice packs that are recommended (Elastogel, Chillpain) all seem to be made and sold in the US and not here, and they cost so much after the exchange rate, taxes and postage. I was wondering if there were any local alternatives people knew about, or if they had made their own alternatives, frozen peas, ice trays or ice packs? Thanks
Ice Caps to prevent hair loss
Are you worried about losing your hair during chemo treatments? For me keeping my hair was very important. I am a private person and the thought of people seeing me hairless felt very intimidating and public. I wanted to choose who I would like to tell I had breast cancer and not just be on display everywhere I went for everyone and anyone to diagnose. I decided to give ice caps a try and it was absolutely successful. Keeping my hair gave me a sense of control over the chemotherapy and its nasty side effects. For me it became an uplifting and very positive experience, giving me something satisfying to focus on, instead of on the cancer.
Cold Cap Experience
You can see I'm back with a vengeance... I was offered cold caps at the same place I would be having the chemo, at no extra cost or runaround so I decided to give it a go if I could tolerate it. I'm not hung up on losing my hair but know that it would make everything a little bit gentler for the kids (and partner) and if I could manage it and the extra time it takes, no problems. The day of the disastrous non-chemo, about the only thing that wasn't a problem was the cold cap - whether it wasn't on really firmly or I was just so traumatised from the preceding 6 hours, who knows... Jump 3 days to second try at chemo and I found the cap only just bearable. I've still got a couple of weeks to see if it has had the desired effect but I really hate having the greasy feeling of the conditioner-washed hair hanging around my face and I look like one of the lesser-groomed side characters on Midsomer Murders. So, I'm starting to assemble fors and againsts. I know from reading everyone's posts that when their hair falls out and grows back, the texture, colour and spread can be quite different from how it was before. I'm sure that even with cold caps (and I know even if successful there's likely to be thinning) there will be changes to the hair. Of those of you who have used them, how would you compare your hair to before, immediately after chemo course, and further down the track?
Cooling cap
Hello beautifuls, So I’m tossing up between pre shave and trying the cooling cap. Has anyone has success with the cooling cap ?? I’ve had a conversation with my 15 year old son and he wants me to shave as he doesn’t want to watch it fall out. I think he was very brave for telling me this. I’m just wondering if anyone has had success with the cooling cap as I was going to try it ??
