Cold Cap Experience

@afraser @sister Thank you for your kind words. I'm afraid to say there is even more woe as 10 months before my sister died, my sister-in-law died from a brain tumour. My children saw her every week of their lives, and so lost two aunts in a year. Six weeks later my father-in-law moved in with us. He's now 85 and I'm supposed to be looking after him! It's been five years of hell and I have no reserves left. To be honest, despite my good prognosis, I am struggling.

@kmakm I agree with @afraser - you are one extraordinary woman.  But I know, you do what you have to, don't you?  It's more about the kids for me, too.  They've lost an auntie to breast cancer and we're living mine every day so I'd rather the evidence isn't in their faces when we're not thinking about it.  So far, I haven't noticed any difference with thinning but I'm only up to Day 10 after the first treatment.  The nurse at the chemo centre told me it's all about how much contact there is and how long before and after the infusion that it's on for - apparently for doxyrubicin she likes to leave it on for 90 mins after.  We'll see how it goes.  I won't persevere if it looks like a losing battle.  

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.

TC chemo. I'm raising my deceased (from breast cancer) sister's two kids (currently 9 & 12) (as well as my own two). She died 18 months ago and didn't do the cold cap. I really wanted to reduce the visual impact on them. I was told by several doctors and nurses that I'd get a good result. I had thick hair so the expected thinning wouldn't be too noticeable.

I was given paracetemol and Ativan to help cope with the cold. The first 12 minutes were VERY uncomfortable to painful. Then it lessened a tiny bit but suddenly at the half hour mark, it became entirely bearable.

Chemo 1, Day 14, my hair started falling out. From almost every part of my head. It gathered pace with every passing day. My scalp was SO irritated, itchy, tender, painful and prickly. And the condition of my remaining hair was revolting. Limp, manky, totally lifeless. I started to have a complete absence of hair on the top of my head. It was like the parting of the Red Sea...

Chemo 2. In the discussion about the hair, the nurse administering the cold cap and drugs, said yeah, people on this chemo regime don't get good results from the cold cap. She was the first person who had said this to me. In a later discussion with the NUM, who's kept a close watch and note of cold cap results, said she was surprised at that. So, contradiction is still rife in this area.

Chemo 2, Day 5 (two weeks ago). Enormous landing strip on top of my head, hair all over the house, huge handfuls coming away, bare patches appearing all over the head. Pulled the trigger, went to the local hipster barber and had it buzzed off. Felt and looked MUCH better. They made me a huge Four Pillars gin and tonic (my first drink since Christmas Day) and comped me the whole thing. The kindness of strangers.

Turns out I have a good shaped head and think I might try and rock a Sinead O'Connor once it starts to grow back. Also working on a head tattoo...

It sucks big time, and I'm not enjoying watching my eyelashes and eyebrows slowly thin, but I haven't shed a tear over my hair (PLENTY about everything else). I whack on small hat/cap from the local cancer head wear shop and get on my way. I don't enjoy the stares and looks as strangers clock your suffering, but what to do? I have to go to the supermarket...

I'm glad I tried the cold cap. I had to give it a go, but it did not work for me.
 

Sure.  The Mater private hospital at Springfield Qld.  They will accept public patients at the moment for chemo and radiation.

Hi @kezmusc please can I ask where you had your treatment? 

Thanks @Mollygirl - it sounds like it's not as easy as just waiting for it to grow back if you don't use them.

@Sister I declined the cold cap and I very much regret not giving it a go. Having no hair was easy. Wearing hats or scarves or bandanas was easy. Looking at my hair now it not bloody easy. It's about 2-3 cm and going curly looks disgusting and I feel horrible looking at my head in the mirror. I absolutely hate it!!!!! Each to their own I know but it's my big regret xx

Hey @Sister.

Yes it will thin.  It keeps its normal shedding routine plus  more, and of course, for the moment it isn't growing back.  As mine thinned evenly all over, I was the only one who could spot the difference.   I didn't really follow the rules and washed my hair quickly from mid length (can't fall out from the middle right?) down every day because it was about 35 degrees most of last summer and the thought of only washing it once a week didn't impress me at all.. 

I found the cold was not really a problem after the first time as you know what to expect.  
The nurses can time the premeds with the pre cooling as you wait time there anyway. And the after cooling can start as soon as the actual chemo infusion is complete.  So once the last bag of fluids ran through I was only there for an extra hour with the AC and 45 mins for the taxol.  

 Check on the cap every so often through treatment and make sure it is still snug on your scalp.  I used to push mine down a bit about every 15 mins (yes, I was slightly paranoid). It's all in the fit and rechecking throughout the treatment.  I have been in close contact with the nurses at my cancer care centre and they are having excellent results now they are pros at using them.  Around 75-80% success rate.  

You can push your hair back away from your face.  As long as your hair line is covered with the cap and it fits well on your scalp..  I put a hair band around mine so it sat just under the front of the cap, stops freezing your forehead off and controls your hair.

 Halfway through Paclitaxel my hair started to grow again.  So it is now 8 months since I finished chemo, the bits that shed out are about 7 inches long and have come back with a curl on the end so it's a bit interesting taming it down some days. Kind on look a bit like a Chinese chicken when I get up  It's thick and healthy and the same as it always was.  

I'd be happy to send you some before, during and after photos if you would like.  Just send me a pm if you want any more info. 

Thanks @JoeyLiz