Cold cap users….

Hello. Thanks all for sharing your experiences. I have just done my second EC treatment (27th Dec), 3 weekly, and used the cold cap both times. I had no shedding at all after the first treatment, and found the first treatment day and cap much more bearable than I thought.

However shedding has started quite heavily from Christmas day which has been upsetting. I think I have been able to act a little in denial without seeing the visual sides of cancer so much. My second go on the cold cap on Wednesday also felt harder (not sure why, maybe it was adrenaline getting me through it better the first time?) but I have found the last few days hard. The shedding is coming thick and fast and I think it's the not knowing if I'm in the 50% lucky ones or not which is making me feel a bit down.

I have primary age children and their biggest concern over my diagnosis is not wanting me to look different. I don't want to look different either. I know it's vain, but I enjoyed the first 3 weeks of denial! I now need to do a bit more work on my mindset. I've booked on to some "feel good look better" workshops, including the hair loss one, as is heard these are good. Has anyone else had experience with these?

After my 3rd EC I move onto 4 x Docetaxel. I've just read that there is a risk of permanent hair loss with Docetaxel. But better chances when using the cold cap, even if you have already lost your hair. 

Thank you all so much for for sharing. I'm finding the hair loss pretty the hardest to be honest. It's the visual reminder of the scariness of this illness. 

Great tips on the leave in conditioner though, I will be stealing this from my children!!! I have used the Philip Kingsley gentle shampoo and conditioner and found it good. 

Wishing you all lots of love and luck in your own journeys. I've really appreciated hearing your experiences xx

Good morning.

My goodness I can relate to so much of what you are saying and feeling.

My daughter was just finishing primary school this summer when I was diagnosed and started secondary in September. Like your children, one of her concerns has been my appearance. I have tried to make light of the whole thing with her - taking pictures of myself in the cold cap pulling amusing faces and sending them to her taking the micky out of myself etc but she doesn’t like the fact that other children will talk and ask too many questions. It’s a tough one. But I also tell her that losing my hair for a little while is a small price to pay really for what i hopefully get in return. And it will grow back. I made her a promise that if I lost my hair - I’m normally fairly grey at the roots now so I’m imagining that if my hair goes completely my hair will come back fairly grey/white - I foolishly promised her when there was enough regrowth she could dye it a funky colour. She’s actually quite looking forward to this idea should it come about!

I also completely understand the denial faze, I thought I was doing fine - and then on Friday, I had my second round of EC, my chemo nurse started gluing my hair down with conditioner on my ‘patches’  - that came as a bit of a shock! I was also told not to wash or brush my hair for 2 days after the cap so I’m waiting till tomorrow. I know what I’m going to be faced with so… I’m building myself up to a new year hair style…  

A little Ray of hope for us though…. I was speaking with a lady yesterday on here who was 43/44 when she was going through her treatment (she finished in March this year)  she had a similar experience - she said by her 4th treatment she’d lost approximately 70% of her hair but was persuaded to continue with the cap (with a surgical cap to protect her head from frost bite) by her 6th round her hair was growing back! As I say she finished treatment in March and said by the April she had approximately 1 inch of regrowth already.

I think that with this journey up to this point I’ve not looked really any different and I’m now facing the fact that this is about to change. We’re lucky it’s winter though so big bobble hats/hoods/scarves won’t stand out.

One day at a time, breathe, we’ve got this xxx

Morning. 

Absolutely. I know this is so so much bigger than the hair, and the fight against cancer is the biggest priority. And I should see that the loss of the hair also represents the reduction off the cancer. And I am grateful for this.

My children were 9 and 6 years old. My 9 year old is more understandable about it all. I'm also taking the pictures etc to show them and explain the process. My eldest actually made me a Lego figure to take with me to my treatments. She called it "chemo girl". It's sitting in her chemo chair, with a cape on because she says " you are a hero, but right now you need to wear the cape as a blanket". She also said it was handy that the Lego figures hair is detachable! So I'm using that a bit too take pictures in the chemo suite as well and hello document the process. But she's worried about standing out with her friends etc.

The 6 year old is a little harder to help understand properly. She just doesn't want me to change. I'm not sure I'm brave enough to suggest a funky hairstyle at the end(!) but I did buy her some hair chalk and braiding kit for Christmas so maybe when it all grows back again we can use that together! Great idea.

It's great to hear about the lady whose hair started to grow back mid treatment. I'll definitely take comfort in that. 

Have you come across the 'cancer hair care' sorry charity? They have links on there to a 'child cap club' you tube videos. They were saying it used to be the case they advised washing hair 2 days after, but now recommend as soon as possible if you can. Anyway, I found the videos helpful (interviews and advice) so night be with a look? 

It would be good to stay in touch. Our journeys sounds similar, especially with children a similar age and concerns. 

We're definitely going to have ups and downs along the way. I think I've been pretty positive, but just in the last couple I've had some 'down days' for the first time really which is a shock. So it's great to hear others experiences xxx

Hello HopeFightHeal , There is something about the 3 week timeline that makes the shedding start at that point .It's really horrible though to find it coming away so much .I had 3 weeks after first EC with no hair coming away ,and then it started at day 21 . I was just distraught ,nothing prepares you for seeing your hair come away , even if you think you are prepared for it .I was convinced cold cap wasn't working ,but stuck with it and after 4 EC's ,I still have probably 30% hair . It's really thin and I wouldn't go out without it covered, but can get away at home with just my scrappy hair on show .If visitors come. I put on a light beanie or one of the light turbans I got from amazon .Still odd hairs come away each day but I just scoop  them up and bung them down the loo .I start Docetaxel Thursday and am hoping I may be one of the lucky ones that notices some regrowth while on it -fingers crossed. 

I must say that reading you and JelloH's stories and seeing that you both have young children ,my heart goes out to you having to deal with all this while having to maintain a normal life (as far as possible) for the little ones .

Here's hoping 2024 will be better for all of us xx 

I bit the bullet today and washed my hair. I was so careful with it and it stayed put, but I literally smoothed the shampoo on and rinsed off. I haven’t been brave enough to brush it as I know it’s going to all come out… I think with different ideas and suggestions it varies from nurse to nurse depending on their age and experience. When I had my first round I was given an ice pop at one stage to suck to save my taste buds a little. When I had my second round with a different nurse she was horrified by the idea! And they work in the same team!

I love that your daughter made you a Lego figure! So cute, they do such precious things. My daughter got me a little knitted heart to keep in my pocket when I was going for scans and biopsies etc. it stays in my hospital bag and comes with me all the time.

I have signed up for the look good feel better course but the earliest I could get where I am is the 6th February. So by then I’ll be in the thick of it and will know how much hair I have or don’t! I’ve also been really worried about my eye brows - I have such big naturally dark brows if they go I know I’ll look ‘I’ll’ My make up skills are zero so drawing them on is a daunting challenge! 

It would be great to stay in touch, as you say we seem to have a similar pathway and with our girls I’m sure we’ll figure out little tricks along the way we can share to try and make it a little easier for them. My daughter is currently enjoying losing herself in baking - she made a lemon drizzle cake yesterday and is currently making a chocolate celebration cake. I’m fortunate that I haven’t yet lost my appetite or taste!

Ups and downs are definitely on our horizon, and like you I’m trying to stay as positive as possible. I know the journey will get tougher before it gets better, but one step at a time.

Whatever you maybe doing this evening, I hope you have a nice time. I’m currently under my heated blanket with one of the cats and the dog - I don’t think I’ll be moving very far! I had a horrible steroid insomnia night last night so I’m not full of Tom much New Year’s Eve spirit. But I put my sparkly shoes on to show willing - poking out of the blanket!

Take care xxx

Hi Jane2511,

I also have endometrial cancer and just started using the cold cap. I was encouraged to see it worked for you. I don’t know many people with our diagnosis that used it. May I ask if you did the 1X every 3 weeks carbo/taxol dose? I’m doing that regimen plus Keytruda and wondering if I have a chance to same some hair. 
Thanks!

Catorama