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?

Hi lovely ladies, Months down the track of chemo & radio. Lung cancer primary - tick. HER2 POS breast cancer - a work in progress. Grrrrr. I just wanted to share my experience with cold cap. 1st time was horrific. So painful, tears (not like me) & fear. I learnt by trial and error that taking a couple of panadol beforehand helped heaps & as the brochure says "place an extra goop of sukin conditioner on crown of head and smear a little way down." This helped to lessen the pain during endless hours and especially helped at removal time with the freezer feel/look. 3rd treatment & I could barely feel the cold cap. PS this was winter in Hobart! I had longish, straight quite thick blonde COLOURED hair & I chose not to cut it as I wanted to see what happened & I've never had short hair. Tried to stay as "normal as pos".End result, hair thinned quite a lot after extreme chemo/treatment had finished & have receding temples so have changed part to cover. Slowly returning now. I used an afro comb if anyone can remember those & combed my hair in the backyard. My hairdresser had products that did not contain any nasties so was able to continue colouring. I see a huge difference in loss of thickness but no one else seems to notice and I actually get compliments on my hair. If they only knew. I feel it was worth the initial pain,effort & many extra hours it added to my treatment. I am grateful my hospital at least had cold caps as an option. Best wishes & hugs. Maggie.

I am 15 days after my first dose and I am shedding hair abit more and the hair in my nether regions is dropping out at a great rate but my head hair is hanging in there - fingers crossed.

The new hat I may be rocking - it says it all though - gratitude - to be alive!! There is a little sparseness on top now.

Well, that sort of puts a different perspective on it. You are going through all this and lost your sister 18 months ago - and you want to spare your sister's children the pain of seeing the visual effects again. You are one extraordinary woman! I can't even start to imagine those circumstances but a complementary buzz cut is the very least you deserve. I'd have done the Sinead O'Connor thing if my head wasn't the wrong shape, with a pre cancer bald patch, a few scars and a mole to boot!! But go for it - given what you have been through, a few stares and thin eyebrows are hardly in the race. I hope this is the worst part, that you triumph over this and that there are no more tears. Best, best wishes and all power to you.

@kmakm Sometimes the heavens open up and just rain a shitstorm, don't they? I'm sure you're on top of it, but just in case you're not (and I know you've got so much energy to sort everything out), have you looked into what care your father-in-law might be entitled to (I also don't know how active he is)? My in-laws are entitled to quite a bit under different schemes and, although your situation is different, I would assume that you could make a claim as being an invalid carer (not that I know an awful lot about this stuff but might be worth trying to find out). This may mean that you can get services to help out. It might not be much but, hell..I'd give over the cooking and cleaning to someone else any day of the week!

Cold Cap Experience | BCNA Online Network

181 Replies

Anonymous
Not applicable
8 years ago
The user and all related content has been deleted.
kmakm
Member
8 years ago
@"Lisa Janelle" Oh good grief! That is woeful...
Lisa_Janelle
Member
8 years ago
I had a call from breast screen today to ask how I was. I said I am doing chemo using the cold cap. The nurse said she hadn’t heard of that medication. Wow no wonder you feel so alone. I didn’t even respond with an answer.. let her think cold cap is a medication.
kmakm
Member
8 years ago
@"Kiwi Angel" No hospital here on TC, not for febrile neutropenia anyway. My oncologist told me one in four have that problem. TC does give you bone ache a few days after you have it. Mine lasted about 48 hours.
kezmusc
Member
8 years ago
Good stuff. Hopefully it wont give you any grief.
Kiwi_Angel
Member
8 years ago
Hey @kezmusc did give it a bit of a shove every now and then cause hard to know how tight it is when your head goes numb. Just combed when dry when I got home and Will not wet or wash for as long as I can handle it and will just use bobby pins not hair ties. Decided to get the injection as the nurse said most people of my regime in their experience end up in hospital. I was worried about bone aches as I already have arthritis but she said most people in that situation do t notice a major difference. Might reevaluate if I have major side effects.
kezmusc
Member
8 years ago
Hey @"Kiwi Angel"
Give that cap a bit of a shove down in the middle of your scalp every so often. When you get home wash off the conditioner with cold water as it keeps the hair follicles shut for a bit longer. Same again the next day if you rinse it. Use cold water. After that it won't matter so much. If you want any other tips give me a message.

Regarding that stinky neulasta injection, just tell them you want to see how you go. I skipped the first one as there was a different doctor on and he wasn't so hell bent on giving it to everyone.. They made me take it the second time even though my WCC had recovered well and truly. That landed me in ED with my WCC through the roof at 130.

I said no way to the rest of them. Just had to have a weekly blood test before the next round of chemo. Had no issues, never got sick. The choice is yours don't forget.
All the best.
xoxox
kmakm
Member
8 years ago
Good to hear @"Kiwi Angel". It's a long day with the cold cap. Hope you get a better sleep tonight.
Kiwi_Angel
Member
8 years ago
@kmakm - one down 3 to go. Just a little light headed ness with the docetaxel so they gave me som hydrocortisone and then held off for 1/2 hour and was fine after that. Just hanging out with my cap on now.
kmakm
Member
8 years ago
@"Kiwi Angel" I want to give a thumbs up emoji but an "excellent" will have to do :)

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Cold Cap Experience

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