cold cap journey

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Hi,

Sorry, long post, but please bear with me:heart:

 

I know there are already a few threads on the cold cap, but they all seem to be focused on the end results, and what I need to hear, is how it went during treatment. I am cold capping, am now on week 2 after FEC 2. First cycle was a breeze hair wise, I hardly lost any, and I was feeling quietly smug. Then cycle 2 and all hell broke loose.

I’ve been losing my hair like mad. Not just a few strands, but handful of it, I am constantly covered in hair, the top and side of my scalp are already obviously showing. Objectively, I still have most of my hair (I cover the thin spots with caboki, so I’d say I lost about 30%), but I am freaking out that it’s only FEC 2, and there are 4 more (1 FEC, 3 Tax) to go. The way it’s going, I am going to lose everything.

 

Washing hair day is traumatic, and I always cry when I do. My scalp is also sore, I can see crusty bits, I think I got frost bite on my last cycle. Chemo hasn’t been easy so far (think any side effect, I’ve had it), and I don’t want to give up on the cold cap, and can handle the suffering if it keeps my hair, but will it???

 

I just need to hear from other ladies who went through the cold cap : do you also lose so much hair every day, even if you’re not touching it? How do you wash your hair, as I find it hard to get my hair clean when I just pat the shampoo in? Do you do 1 or 2 shampoo when you wash (in 1 go I mean)? Did you have a worst cycle where you lost more hair, or was it pretty much the same throughout? And how did you deal with stress, as I am 100% sure it doesn’t help with the hair loss, as I always lost more hair when I was stressed before.

Any advice, experience, or a truthful “well, it means you will need a wig at some point” welcome. I wish I could stay indoors, sleep, and not see anybody until the end of treatment…

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Hi

 

I had to reply to you as I have just been through the same process… mine just wouldnt stop falling and I developed a bald patch on the top. My family eventually all advised me to shave it off, this for me was unthinkable.  I have always had lovely long thick hair and took great pride in it. My mum took me to one side and said louise that hair isn’t you, its clumped together and it looks so unkept and sore…my scalp was really sore. When she had gone I looked in the mirror crying but decided it had to go, I shaved it myself whilst my husband had the kids at footie.  I then put my gorgeous wig on, it really is lovely and waited for them to come in. There response was it looks like you again, its even nicer than your own hair. Its took some getting use too but I am so pleased I did it. I dont want that old hair, I want new, I want to see what appears back. I respect people who can go out and not give two hoots but thats not me I will stick with my wig until my hair is a length I feel comfortable with. Im sorry I couldn’t give you more positive news but I am being totally honest. I hope you make a decision soon, cos the upset horrendous.  

 

Take care and let me know how you get on.

 

Ps im on second chemo day 2 xx

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Hi there,
I had to reply because exactly what you’re experiencing I went through. I lost almost nothing during FEC 1 and just before the second session it started to come out. Showers were awful, I was really low. The good news is that this lasted until a week or two after FEC 2 and then it has slowed down again. I still lose hair, but the shower isn’t blocked when I shower. My hair was naturally fine before this and I have thinned out. I have a gap along my parting and on the crown of my head, but generally I can get away with it. For me it smabout being as normal as possible. My plan is to get it cut into a little pixie number once the chemo is over to disguise the new stuff coming through, but until then I want to hold onto it. I am quite tall and that means I can probably pull it off and I try to take it one week at a time rather than looking towards the end of the six chemos and that helps too. It should stop being so heavy, but I suppose it whether you can put up with the shedding even if it’s at a slower pace as some women hate it. I can’t say I don’t find it hard, but it the price I try to pay to keep as much as me as I can -'that’s MY personal choice. Mi suppose I’m just stubborn!
My NHS area won’t let me have a prescription for a wig whilst I’m using the cold cap mad although I’ve bought scarves and a hat I haven’t worn them yet (except for the one day of sun we’ve had!!) and I think that we have enough to put up with. I have tried to “warn” people Bout my bald spot before I see them and am quite blasė with my jokes about it, just to get it out there. Other than my hair not being its normal self ( I used to style it and wash it every day) I look and feel fine.
I do hate having to wash it every three/ four days as it goes very greasy on day three and don’t like to go out on those days, but I suppose you have to make a decision about if it’s a price you’re willing to pay to try and keep it. My friend used the cc and kept about 60% of her hair and this was considered to be a success. You could tell it was thin but not that she had cancer and this is what I want.
I occasionally also allow my fringe to blow in a low setting, cold stream on the hair dryer for special occasions to give my fringe a bit of fluffiness and this hasn’t done any harm. I’m not talking about styling it, but putting it on and from a distance allowing it to waft through the front of my hair (not touching it) on a COLD setting and it works for me.
I don’t know if I’ll keep my hair ultimately but half way through and about to start tax on Friday I still have hair and am happy to go out without anything on. If you can put up with the situation now, I’d try and stick it out for a little bit longer. Look at trying to get to next Friday mad assess it then - if you get there - yay!!! Then try another week!!
Sorry for the essay, but I your message really hit home with me! Let me know how you get on and if you want to PM me, go for it! Xx

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Hello,
I totally understand how you are feeling. I too felt pretty smug after Fec 1, my hair didnt actually start falling out until about day 18, but then of course Fec 2 began and so did the major shedding. So far I lost most hair between sessions 2&3. I have a bald patch on the left side of my head and a very very wide parting on top which is now creeping down the back of my head. I do have a wig which I wear out sometimes but mainly wear a baseball cap if sunny or hat if cold and raining. For me the most important thing is my 3 year old hasnt noticed and I can get away with it in the house.
When I started Tax, I think the Nurse was trying to persuade me to give up, but I though if I give up now, What a waste of time and I will never know if I would have succeeded or not so I perservered. I did not shed much after the first Tax. Today with Session 5 looming on Thursday I have definately not lost as much hair as I have on previous Chemos- no smugness now though just a quiet hopefulness. I spray my hair with a hydrating conditioner when I get up, then use a wide tooth comb . I only wash my hair once weekly but as I am using the Paxman cooling cap, I also use their cleanser and conditioner but do give my hair a good but gentle massage. I blow dry very gently but dont use any other products.
Good luck
Xxxx

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How are you doing today Secretxxangel?