Topic: Cold Caps Users Past and Present, to Save Hair

May 24, 2020 01:56PM morrigan_2575 wrote:

thanks seawell. Yes, it does feel great to be over the cap.

I never use hair dryers or curling irons anyway so its more about washing my hair (once per week as normal) for the next 3-4 months. I'm counting down now until I can get rid of these grays 🤣

I'll ask my MO about Botin. I saw a YouTube video from a holitistic plastic surgeon who talked about thinning hair. He recommend Topical Rosemary Oil, Low Light Laser caps/combs and Biotin.

I figured I'd ask my MO about them in a month or so.

May 25, 2020 02:47PM MNSusan wrote:

morrigan, I’ve taken Biotin for years and have continued taking it during chemo, with my onc’s blessing. I wonder if it’s part of the reason I haven’t lost that much hair.

May 26, 2020 07:03PM - edited May 27, 2020 07:53AM by MNSusan

Well the joke's on me. I asked DH how much hair he thinks I've lost - 10%, right? He says it's closer to 30%. Funny how that works.

Jun 2, 2020 01:22PM - edited Jun 2, 2020 09:23PM by Moderators

Dear SurvivorTM,

Welcome to you and thanks for sharing your story. Sorry for the experience that you had. We hope that you might stay active here and find others to connect with around this story and other breast cancer issues and concerns. Let us know if we can be of help.

The Mods

Jun 4, 2020 04:02PM Rwns wrote:

I had shedding for 8 months after. But, at the same time thehair I lost after 1st treatment was coming in. So, it wasn’t noticeable to others. Really bothered me though. I used a bit of colored powder on widening areas on my part. 2 years out, and back to normal...even on Arimidex. Good luck to you!!!

Jun 4, 2020 05:07PM morrigan_2575 wrote:

"I had shedding for 8 months after"

How bad was the shedding? Dignicap says 1-3 months of shedding that gradually returns to your "normal" pre-chemo shedding levels.

It's funny, before Chemo I used to complain about how much I shed. Now that I've gone through Chemo/capping I look back and laugh at what I used to complain about

Jun 5, 2020 03:31AM kaylie57410 wrote:

Morning- I also used Penguin-kept 80 percent of my hair thru 4 rounds of TC and lost another 5 percent thru 5 months post capping shedding so all in all ended up with 75 percent of my hair- made all the difference for me emotionally=am 2.5 years out and my almost grown out hair looks like long layering so is all good---was so worth it for me to go thru the hard exhausting work of cold capping---C

Jun 6, 2020 05:45PM 2020cancer-covid wrote:

Has anyone used Arctic cold caps with TC4? I chose them bc of their simple design and wasn't sure they would allow me to bring a helper with me...was going to go with Penguin but the caps seemed too involved for me to do on my own. I started my treatment June 2...and I'm just waiting for hair to fall out and be let down once again in this journey I'm on.

Jun 7, 2020 12:24PM Cali58 wrote:

Survivortm - I would not recommend Penguin cold caps to anyone. I had a pretty bad experience with them. Their caps didn’t work for me, even though I paid $125 to one of their experts “every time” I had chemo. They claimed he was very experienced. I trusted him 100% and lost most of my hair. Later, read on this site about the importance to keep good contact with the scalp. Well, he did the opposite. He did not use the strap around the chin and I lost most of my hair, especially on top of my head, where I barely kept any hair.

Jun 14, 2020 11:52AM startingchemo wrote:

Hi ladies! I'm new to this site. I started chemo on June 1 and am using Dignicap. I'm wondering when you started noticing the hairless. It's day 14 for me. Thank you!

Jun 14, 2020 02:58PM Moderators wrote:

startingchemo, we wanted to welcome you to Breastcancer.org. We are sorry you have to be here, but glad you found our community. We hope you find the support and advice you need here. If you have any questions for us at any time, feel free to get in contact with us, we're always here.

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Jun 15, 2020 05:42AM 2020cancer-covid wrote:

I am using Arctic Cold Caps as well...I had my first TC of 4 on June 2, next one in a week...I see a lot of people who used Penguin...am curious if there was anything special you did to keep your hair with Arctic, I went with them bc of their simpler design and bc if covid was afraid I'd have to do it alone, but they have allowed me to bring a helper....I'm so afraid of the first major shed, it coming out in clumps...I have a lot of dark hair and have always shed...but every time I see it now it scares the hell out of me...how much hair did you loose if any, and when did you first see it or know it was working?

Jun 15, 2020 05:19PM makingway wrote:

Hi all! I haven't visited here in a long time. I've developed a recurrence and am having to undergo chemo. If you've read my bio you'll see I was originally diagnosed in 2009. At that time I was considering chemo but hadn't yet decided. But, I knew that if I was going to do chemo I would definitely want to use the cold caps.

I met a woman on this discussion board who lived locally and also wanted to use the caps. We arranged to help each other with changing each others caps, and split the costs to save some money. I decided not to do chemo but still helped my friend with her cap changes.

Fast forward eleven years... I have started chemo and have a set of caps. It's getting very costly for me and I am trying to figure out a way that I can continue with the caps. I thought this scenario might benefit myself and another who wants to use the caps but doesn't have the resources to do so i.e., no cap change helper or enough money for a deposit and first month's charge. I would be willing to share my caps under certain conditions. If you're interested and live in the Orange County, Los Angeles or San Diego area feel free to send me a private message.

Jun 16, 2020 05:58AM dono7392 wrote:

I finished 5 months of cold capping rental for a total of $1,600. My doctor placed an order for it but my insurer United Healthcare denied my claim—even though they would have covered wig costs if I lost my hair.Has anyone had any luck getting cold capping equipment rental covered by their insurer? Any info might help with my appeal. Many thanks!

Jun 16, 2020 01:00PM makingway wrote:

Dancetrancer, I remember you!!! It's great hearing from you again! Thanks so much for the kudos! How have you been? Well I hope :). I found myself getting more and more involved with other things and frequented the message board less and less. I'm hoping that finding another to share the caps with will be the solution to my worry. This is costing me a small fortune! LOL

Morrigon 25 - A cap helper is allowed at my clinic, although they screen them by checking their temperature and ask questions related to covid. A funny story - my helper had just guzzled a hot coffee before we arrived at the clinic. She's also on meds for her lupus that can affect her temperature. They wouldn't let her in the clinic until her temperature went down, so I waited, got eveything ready and then the nurse came over to tell me they were ready to start the chemo. I told them I'm not doing the chemo until my helper is here to help me with the cold caps. The nurse said, "But the medication has been ordered and is ready to go." I reiterated, I'm not doing the chemo without the caps. My helper soon arrived :) Staff doesn't care one way or another about a patient going bald. I do. I know some are okay with it but that's not me. We all are our greatest advocate.