Cold caps

[Mmnyc]

Well I started my first chemo session a couple weeks ago. I’m also trying the cold cap to see if I can preserve some of my hair. Well yesterday I started to notice so much of my hair just shed. I feel like it’s everywhere! At this rate I wonder if my poor hair will survive 4 rounds of chemo😢 Also my poor scalp is so dry and flaky and I can’t use the selsum blue shampoo because according to cold cap rules I have to use ‘natural’ shampoos😩 feeling so down about this. Good thing is I have a wig on stand by, was hoping not to use it but it looks like I will🤷🏻‍♀️

Anyone else have experience with cold caps? Did it work for you?

[Holly64]

Hi

I had 6 rounds of chemo 2 years ago & also used the cold cap each time. My hair is short & it did go very thin & wispy so I had it cut shorter then started to wear my lovely wig. Everyone said it was lovely & I began to feel it was better than my own hair!!!! I even got admired in shops & toilets about where did I get my hair cut! I just smiled and said it was a wig & guess what, they couldn't believe it. Just go with the flow, all that really matters is that you get the best treatment and make a good recovery. Keep smiling xx

[anrean]

I did not use the cold cap, but a friend did and unfortunately it did not work. For me, a wig was the perfect solution. Like Holly 64, I got some great comments on the wig, The one thing I found with a wig is that it can be irritating to bare skin, so I used a scalp cap - had to search high and low to find one, and finally did at one wig shop. The scalp cap also helped in the cold weather when wind would blow through the wig and make me cold. I purchased a few other accessories like just a set of bangs for when I wanted to wear a hat or scarf - again, no one knew it wasn't my own hair. Wigs can be very expensive, and I chose to use the internet to find less expensive ones and they were just as good as the expensive ones in shops! My oncologist had a few brochures to help me decide which sites to use. If you can access Paula's Wigs, they are very inexpensive and great looking! The American Cancer Society provided a free wig and so did the Breast Resource Center at my hospital. Hope you have something like this available to you.

[sharon1014]

Oh no!!! I used cold caps in November 2017! It worked for me. Please stick with it! My hair thinned out and got shorter but it worked. You will feel so much better about yourself having the hair. Please reach out if you have more questions.

[Mmnyc in reply to sharon1014]

Hi Sharon,

I do have a bunch of questions, hopefully I’ll remember all of them.

First: what shampoo did you use?

Did you wear hats on the weekends? I know it’s not allowed but at this point I have to hide bold spots. 🤷🏻‍♀️

Did you wear a wig? I’ve read on other uk blogs of women saying their hair thinned out and so they had to wear wigs to go out into the world and then after the chemo sessions were over and new hair started growing in they ditched the wigs. That’s my plan. Since at this rate I’m losing a lot of hair, let’s say that I’m able to preserve 30-40% of my hair I fell like that’s a good start in comparison with 0%.

Did you try and get reimbursed from your insurance? I’ve been reading on the redpunzel website of some women getting some money back from their insurance companies but it’s such a new thing that I don’t know if they will reimburse. I will try because what’s the worst they can say?

Also, which cold caps did you use? The one where it’s controlled by the machine or the one where someone is changing your ice every 25 minutes?

I have 2 more rounds of chemo and keeping my fingers crossed I’ll get to keep some of my hair with the cold caps.

Thanks for your help and encouragement 😘I really appreciate it 👍🏼

[sharon1014 in reply to Mmnyc]

Mmnyc

Sorry for the delay in getting back to you. The shampoo I used was DermOrganic Argon Oil. I got two big bottles on amazon, shampoo and conditioner. I washed my hair in the sink with cold water every 2-3 days. Cold water is better. I never wore a wig. I lost hair but didn’t have bald spots. My hair is thick so it just thinned out. At the time my cancer center did not have the machine do I used the penguin cold caps. We had to pack them in dry ice in a cooler then switch them every 25 minutes. I had 6 Rounds of chemo. I did not submit to insurance but still have paperwork and can still try and submit. I never wore a scarf or wig.

[VicReg Partner]

Cold caps are helpful, however with certain chemos such as adriamycin, they don't always work. I had considered it until my oncologist told my this information. Plus insurance didn't cover it, so it wasn't worth the out of pocket costs for me. I tried my wigs too, but was not comfortable with them so I embraced my bald head and wore scarves to keep it protected from the sun. We all need to do what is best for us.

[earth-angel1]

I had fun with hats and scarves...cute earrings... Hats kept the wigs on better. I have hair now and still wear baseball caps and winter knits. So easy to put on and look nice.

So easy to wash your head and not waste time drying and styling.

Ultra short is in. GOOGLE super short haircuts.😉

[PJBinMI]

When I was first diagnosed, at stage IV, one of the first things I did was go to a wig shop and order a wig! I found out that I have a big head and needed a size large, and boy did my husband and brother have a good time with that! I found out quickly how helpful humor is in dealing with this cancer! Anyway, I had a highly E + cancer, have done well on hormonal therapy and have not needed a wig. One thing I've noticed in the last couple of years is that I see alot more women out in public with nothing on their bald heads than I did 15 years ago when I was first diagnosed. I think the good makeup and great earrings would be the direction I'd go most of the time if I do ever lose my hair, but thinking that now and what I would actually do may be totally different! Having cancer sure teach us what is important in our lives!

[sharon1014]

Any more feedback on this ?

[DianaTrapani]

I decided to embrace the bald! Unless it was cold, I didn’t wear anything. Cold days I wore a cotton, seamless buff. It was long and could double or triple over for extra warmth. I found knitted hats, although lovely, to be itchy.

I had 16 chemo treatments, mastectomy and radiation. In remission 1year and doing well. Blessings to you.

[DianaTrapani]

There are also cold gloves and booties that may help stay off chemo nails and peripheral neuropathy. I didn’t know about them and still have pn, mostly in feet. It is slowly subsiding and Hopefully will go away over time. Finger nails are almost normal, just two thumbnails still regrowing but paintable which covers the area not quite normal yet. Toenails are very slowly growing back, but they always take longer to regrow. Good luck 🍀