Cold Caps Users Past and Present, to Save Hair
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I tried to use Paxman coldcaps for my first infusion but was told I couldn’t by my chemo center due to Covid 19. They are a provider of that particular brand of coldcaps. My question is , has anyone used coldcaps after their first infusion? I spoke to my local oncologist and he said it needed to be done prior to my first session. I was hoping I could order the Penguin cold caps and use those from here on out. Any suggestions?
Claud
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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.
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bazcla, what chemo are you getting? If it’s weekly taxol, I’d say go for it with Penguin cold caps. Anything else—I’m afraid it’s too late to save your hair as the damage was done with the first infusion.
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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.
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PatinMN
I’m on AC every two weeks. Spoke to a sales rep today and she too said I would probably lose my hair but if I used caps it would grow faster. Unfortunately because of the Covid situation, no one can go in with me and assist with the changing of the caps. Thanks for responding
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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.
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I just want it put it out there that Penguin Cold Caps is not a company to use. I used cold capping until Dec 2019. We emailed them that I had completed chemotherapy and requested info on how to return the equipment. Despite multiple attempts to get them to stop the company continued to charge my credit card until April 2020 when I lodged a complaint with my credit card. As of this date I still have not received all my money back. Each attempt is met with misinformation and more dodging. I wish I would have checked reviews before. This is a pattern with this company. All this and I lost most of my hair anyway (AC-T chemo). I'm putting it out there because I don't want anyone going through something as horrible as this disease to have to deal with deal with this. It's been a horrible experience.
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Dear SurvivorTM,
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The Mods
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survivortm- that sounds awful!
I used Penguin and had no trouble returning the stuff and they stopped billing right away. This was Oct 2019.
I also kept most of my hair, although I cut it short and had it thinned during chemo to try to get the best results and avoid any permanent baldness.
Since I lost so little hair I didn't expect Chemo curls, but I got them! I haven't had a hair cut in months and I look like little Orphan Annie!
A friend of mine is doing her cold caps solo right now! And she goes weekly! That girl is amazing! I don't know if I'd have the gumption for that discomfort weekly and to do it herself! It is possible!
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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!!!
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On Target-I also kept most my hair and also got chemo curl!!! I hope they last, as I’ve made peace with them. Kind of like back in the day when I got perms!
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"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
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Morrigan-shedding was light, but steady...felt like it would never end! But it did. Aged me with all the needless worry, but hard to stay calm while you’re in it😝.I used penguin.
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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
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Glad to know some had good experiences with them. I went to their fb page and found others who were having the exact issue I had so I felt I had to say something. I also had great issues with the regional rep. who made the problem so much worse - not returning emails - saying I would receive the money in 10-14 days and then nothing etc. I finished my chemo in Dec and still have not gotten my money back. It may depend on where you live and who your regional rep is. For me this has been a nightmare and I really wish I'd never used them. I wish someone would have warned me.
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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.
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Dear 2020cancer-covid,
Welcome to the BCO community. We are sorry that your cancer and treatment brought you here and glad that you reached out for support and information. Please let us know more about yourself and your story. If you have completed your profile and make the information public it will show up in your signature line. We are here to help in any way we can. We hope you will stay active and find what you need to help yourself along this path.
The Mods
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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.
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officially 21 days from final Chemo treatment. Up until this week hair was shedding at the same rate for 5 and 6. Starting yesterday I noticed that the shedding was a bit less. We'll see if this holds or was a fluke.
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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!
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i think I had my first major shedding start around day 15 or 16 of um first cycle of TCHP.
I'm not say 26 after final Chemo treatment, I'm still shedding at pretty much the same rate as I did throughout Chemo. Hopefully it will ease up in the next few weeks 🤞🏻 I just started Biotin today, let's see if that helps
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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.
Warmly,
The Mods
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I started shedding 14 days after thefirst dose of TC. I used Dignicap. The shedding was non stop for 4 months after final chemo.
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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?
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This was me, the morning of my last treatment. There's a line of missing hair down my part and right in front (crown?).
Other than that my hair went from very thick to thin. Although I don't think it's very noticeable to others.
Same day, at the treatment center
For comparison. This is a few years old but, my hair cut and length didn't change much.
I cut it to the shoulder before Chemo on the recommendation of the Nurse/Dignicap Master at my center.
I started losing my hair 2 weeks after first Chemo treatment (day 15-16).
I plan on taking pictures every 4 weeks to track loss/growth post Chemo. This Wednesday will be the 1 month mark, still losing at the same rate but, still have most of may hair.
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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.
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Hey makingway! I just wanted to say hello. I'm not active on the boards at all any more, but I still get notifications of these posts. It got my attention when I saw your name. You were such a help to so many people - can't believe it's been so long ago.
I'm so sorry to hear you have had a recurrence. Wishing you all the best and sending you love and strength!!! I hope you can find someone to share the cost of the caps with you! For anyone who is reading - you would be so lucky to have makingway help you. She's an expert cold capper!
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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!
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i have UHC too but, I haven't even attempted to get reimbursed. I paid $1800 for the 6 TCHP cycles. When I spoke to the nurse manager assigned to my case she mentioned that it might be covered it would depend on my companies plan. She said to submit a claim and, to get the code from my center. I actually forgot to ask about it until you posted. I'll try to bring the paper work on my next session and see what happens.
Makingway - Sorry you're going through this again. Best of luck with finding a cold capping partner. Be sure to ask your place if they're allowing companions (unless you could manage to sync your treatments). Most places have aren't allowing companions due to COVID.
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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! LOLMorrigon 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. 0
