Cold cap advice

Hi Mumof2, I finished my chemo on the 1st of October . I used the cold cap all through my six treatments. It does make your treatment longer but once you have had it on for the first 15 mins or so you get used to it. I had long hair when I started , I didn’t have any bald patches but my hair thinned quite a lot I lost about 2/3 rds of my pony tail by the end of treatment . I had to get my hair cut short in December as it was so thin and wispy. It has started growing now and I don’t have any thin patches anymore. I used simple shampoo and conditioner and only washed my hair once a week. I used dry shampoo as well . I also dried my hair very slowly and on a cool setting . I didn’t tie my hair up as it puts too much tension on the roots. I ordered two cotton sleep hats and wore them in my bed . Take a small blanket with you when you go for treatment for round your shoulders as you do get cold while the cap is on . Also take conditioner with you and a small towel as your hair will be wet when the cap comes off and you will need to dry it. I always took a hat with me as I had a 3 hour journey to get home after my treatment and my head was cold. I did have a wig which I got made and I used it a few times but mainly wore a baseball cap or a beanie hat. Good luck with your treatment and using the cold cap JGxx

Hi,

I've been using cold caps for nearly 2 years and have kept my hair. My first time at chemotherapy in 2012 I lost all my hair. When I went back into active treatment, I decided I would do what I could to keep it. As people have said, it doesn't work for everyone. It depends on the drugs used, how correctly you position the caps and how thick your hair is. I have a heating blanket and drink hot tea. It's cold, but tolerable. Most of all, it's worked. I use the Penguin Cold Caps that you keep cold with dry ice. My husband, son and a dear friend have helped me. It's a lot of work for your helper, but they can get into a routine and that makes it easier. I only wash my hair a couple of times a week -- using dry shampoo in between. I use tepid water and try not to pull or tug at it too much. I have fairly thin hair, so my scalp gets pretty cold. If you have very thick hair, your scalp may not get as cold, which is required to slow bloodflow to the scalp. Best of luck to you! 

I just read your last question -- I use a gentle conditioning shampoo and conditioner for dry, stressed hair. I try to leave it on for several minutes as well. 

Hi again Kelstar9

I have read on the chemo thread about your awful experience with your latest treatment. Hope you have got something sorted and continue without worries of something similar happening. Fingers crossed for you. I start on 2-weekly Paclitaxel after my final EC and I normally have quite low blood pressure, so I am concerned about the scenario of the possible drop in BP. I have my regular chat with my oncologist tomorrow, so am going to raise this. 
Re the Intralace, that was lucky to find someone local & looking for models! Hope it all works out.  The place I am going is allowed to open during lockdown as an essential service. They can do the procedure whilst chemo is ongoing and cold capping can continue. It may need a bit of extra maintenance during chemo due to further hair loss but I decided that wax worth it. When it is done I will still have 3 cycles left but only 5 weeks to the final one. Am just hoping the investment is worth it & allows me to carry on as normal once this is all over x 

Hi PastyP2

That is great news about your intralace place being an essential service, and let me know how it goes. Even though I am going to do this myself after my chemo, I’ve not spoken to anyone who has done it and very interested in finding out what you think and any care tips. Take Care xxx

Hi Kelstar9

Yes I will let you know how the procedure goes. My appointment is 2 weeks tomorrow. I have my 3rd EC tomorrow & didn’t want the appointment until when I know I should be feeling ok. It will be a very long day with 6-8 hours for the procedure and up to 2 hours each way travelling! 
I hadn’t heard of anyone else who had done this. I asked my oncology nurse today if they have had any patients who have had Intralace. She remembered two ladies and said that the results were excellent. So that was good news. 
Hsve you heard any more about your next treatment following your awful experience last week? x

Hi Mumof2,

I am so sorry you are having to go through this. I was diagnosed in August with Ductal, Estrogen receptor positive, HER negative, grade 3 breast cancer. I have undergone three rounds of EC chemo and one of three Docetaxel. I was the same as you, with a much cherished and beloved three year old son, I too wanted to try and “look like me”. I accept that if my hair falls out that is fine as they still see you as mummy don’t they?

I opted to try and cold cap and it has worked for me so far. I know it is a personal thing and I know another mum who I met having her chemo at the same time as me who wished to embrace her baldness and her kids have got used to this now. I know it’s not for everyone and so I would probably give it a go and see what you think? I have thought about a few tips that have helped me and so I hope they are of some use to you?!

I use Simple shampoo and conditioner but I am sure that any gentle brand would do. I take the conditioner with me to chemo sessions and the nurses kindly apply it for me (difficult to do when have cannula in!) to help stop the cap from sticking. It has works every time and makes its removal quick and comfortable. 
I take a wide tooth comb too to help them comb my hair when applying the cap and also use this instead of my usual hair brush as kinder and less breakage. 
A cheap Alice band also saves your forehead from getting burnt! I got this the first time which was a it uncomfortable so saves your forehead!

take a warm fleece blanket and accept warm packs from the nurses and get cosy as the cap van make you shivery! Also a warm pack on the back of the arm where the cannula is located helps the drugs to push through when you get cold. 

After a chemo session, I don’t wash my hair for a few days (which is hard when full of conditioner) but I have found this to work. I wash it in the bath rather than the shower and then use a wide tooth comb rather than a brush and let it dry naturally. It is a faff on but I am getting used to not being able to just jump in the shower!

Large clumps have still come out with me so please don’t be alarmed. I was very upset the first few times but then quickly got used to this. I have two wigs that I bought prior to treatment and have not, so far, had to get them out the box. My hair is fine and there was a lot of it and it has certainly thinned but my family have said that I don’t look that different on the outside. You still feel rubbing on the inside!!

I hope this helps you in some way?!

I wish you and your family the best of luck in these awful times.

Big hugs,

Bekky

xxx

Hi PastyP2

Due to the price, I think a lot of ladies stick to wigs and braving being bald. The ladies who go bald, I have the most respect for, they are amazing and brave. But if you can cold cap and do something like intralace, then go for it!

I not heard of it on here, but seen a lot of Facebook photos of places that do the intralace, and it does look amazing. Fingers crossed, it won’t be long before I can get mine done.

I am glad you are settling into a routine with EC, and you have worked out your good days. Unfortunately I am still waiting to hear what’s next for me. But I not finding out until Monday! I had to wait nearly 1.5weeks by then. As you can imagine I am climbing the walls! It’s nearly as bad as waiting for your chemo plan, but at least I am in a better place and know what to expect, just dreading him saying he’s going to change my schedule as I due to finish chemo 10th Feb, but if he changes it, it may extend. And I not seen anyone who had a reaction like mine.

Anyway, take care and keep me updated with your interlace xxx