Cold Caps Users Past and Present, to Save Hair
Comments
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Alibeths, I'm curious why you keep recommending arctic cold caps. Did you use them or do you have some connection to the company? They are based out of Philadelphia, and you are in Florida.
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MadisonMom, they are different caps. Chemo Cold Caps uses ElastoGels. Search this thread for posts by makingway. She hasn't been here in a while but has helped women with both brands and has a link to her website with a good comparison of Penguin Cold Caps and ElastoGels.
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MadisonMom-There are some differences in the Elastogel caps and the Penguin caps i.e., shape, temperature use, and cost.
The shape of the Elastogel is like a bowl. Because of this difference I find that the best way to ensure that the inside of the caps get cold enough is to fill small plastic zip bags with dry ice and place inside each cap-this is in addition to the regular packing of the caps in the coolers. It takes a bit more time but the savings in cost is worth it when compared to using Penguin caps. The penguins can be layed flat and folded to fit in their boxes. The Elastogel caps provide a better fit but don't come with elastic straps, so you'd have to purchase them separately elsewhere. The Penguin caps don't fit well around the temple areas and nape of neck so many lose hair in those areas. If choosing Penguin caps be sure to also order the gel bands and use to cover that area.
The temperature of the Elastogel increases faster than that of the Penguin caps. Therefore, if using the Elastogel caps use them when they just become malleable-but not frozen hard as a rock. Also change them a bit sooner than every 30 minutes to try and keep the scalp cold. Penguin caps can hold the cold temperature longer but also because of this can cause problems when placed on the head when too cold.
The cost of a set of 8(recommended) Elastogel caps is @ $720.00, and you OWN them to do with what you want when your done with chemo. To rent Penguin caps(and gel bands) for 3 months would cost $1,899.00 plus a $500.00 deposit. The Penguin company requires that you to set up a FedEx or UPS shipping account, fill out forms which asks personal medical information and has no bearing on the use of the caps. The cost of rental starts the day the caps are shipped and returned to the depot.
Chemo Cold Caps use only 6 Elastogel caps and provide you with a cooler-NOT DRY ICE @ $1,830.00 for 4 treatments. I'm not sure if they require a deposit.
None of the above provide help with cap changes on chemo days.
I hope that info helps!
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they are family.
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I used Penguin and they worked for me. Not sure about Chemo Caps.
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they also provide nurses to come and help if you would like. 💜 mention me, I'm sure you will get a discount.
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I used Penguin caps, but I did find the ordering process a little daunting, i.e., having to set up a fedex account, etc. However, Geri the rep was very helpful and made sure I did everything right so I received the caps in time for my first chemo session. I had very little time to make a decision and pull everything together and she definitely came through for me. They were also quick to refund my deposit once I returned the caps.
That being said, I think it's great that more options are becoming available from different companies, especially if they can simplify the process and their services and prices are comparable.
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You guys are fantastic. Thanks for being so quick to respond to MadisonMom. I only had experience with PCC, so I also sent her Makingway's way.
Another thing of note: PCC offers "seconds," which are cold caps that might have a pen mark or a slight crack at the seam or something for a discounted price of $300/month and also a discounted deposit. I went that route and it was significantly less expensive. It was around $1,200 once my deposit was returned. Not sure if Geralyn's still offering seconds, but it's worth asking. I had great results with these caps, though the nape of the neck/sideburn/temple hair loss was seemingly unavoidable with this style of cap (PCC instead of CCC).
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Hi all, am starting my 1st Chemo on 15th Sept. After finding my lump on 14th June. My dose will be 3 cycles of FEC-D over 9 weeks then another 3 cycles of (?not sure?) over following 9 weeks. Booked for 33 sessions of radiation to follow 4 weeks after Chemo finishes. I Live in Tasmania, Australia & the Cold Caps have only been in this state for 5 months. So far, I've been told I will need to have it on for 40 minutes before Chemo & again 40 minutes after. Just means I'll be at hospital for roughly 3+ hours instead of 2. They have warned me that it is quite painful but if you can get through the first 15minutes, it should be ok - that's my plan anyway!
My diagnosis is Invasive Ductal Carcenoma Grade 3 - had lumpectomy & 2 lymph nodes removed. Pathology showed pre cancer cells in the margins so had another op to remove these 2 weeks later. Been given the all clear now & feeling good except for Axillary Web Syndrome (cording) & some nerve problems as a result of operation. Now require 2 x Physio sessions per week to fix pain & arm movement restrictions. Had no idea that this even existed & it takes its toll but still have a way to go. It is what it is so....bring it on :-) Cheers & thank you for the opportunity to vent.
CindyKage0 -
Makingway, pch, Wildflower2, Alibeths, jc254, and mdg, you are godsends! I have learned so much from you! Right now I am leaning toward ChemoColdCaps or just buying the caps myself. I have a large head (7 1/4 hat size, or 22 1/4 " around measured across middle of forehead where a hat would sit) but fine straight hair so am concerned about whether the CCC or Elastogel caps will fit properly. I talked to Bill from CCC and he says he has placed them on large heads but comments that they are stiff when frozen. I can buy elastic straps or use ace bandages to tighten them down but am wondering if anyone has had trouble getting them on large heads?
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Dear CindyKage8, Welcome to the community. We are sorry that you are dealing with all of this but glad that you connected here. Please keep posting and let us know how things continue for you. The Mods
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MadisonMom I use CCC and have someone come to all my treatments. I doing AC right now. My last AC will be Tuesday. I have thick hair and I guess average size head. I have shed a lot but no bald spots. So far it's working for me and hopefully continues throughout my last AC and 4 taxols.
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I am cold capping for my 4 rounds of TC. My MO keep saying most people don't have success with them and keeps saying "when you lose your hair..." (not even IF I lose my hair???) But so many women on here have had success. I have relatively thick hair. Why does she keep saying this?? I desperately want to keep my hair for my wedding in March
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tshire, I had an infusion nurse tell me during the sixth hour of capping for my first infusion that she knew it gave me hope but I'd be bald by my second treatment. Go to life after cold caps. Look at my graduation picture. You will be fine. Just forge ahead.
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Tshire,
Who knows? Maybe she doesn't want to set you up for disappointment, so she may think focusing on the worst case scenario will get you more prepared. I had four rounds of TC like you're scheduled to get, and kept most of my hair. Yeah, it thinned some, but no bald spots and the hair that didn't shed even kept growing during chemo!
If your facility will let you cold cap, I would just stop arguing with her and do my own thing. If the facility won't let you cold cap, think about going somewhere else if it's important enough to you.
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Thanks Wildflower! They will let me, just no freezer and no support
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tshire,
I cold capped it worked great...I couldn't color my hair during capping but my docs at UCSF encourage cold capping and told me how well it worked here I am just 2 mos past final chemo. I know lots of people through these
Boards and in person through UCSF who did great! Gatomal who's around here somewhere ( I know her from UCSF) looks super and I think she did the same chemo as you . Your MO is unfortunately acting like a dick.
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Very nice picture, Suladog! Love your hair color!
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You tell it, Sula. Tshire, believe us. Not your dicky MO.
pch0 -
wild,
Thanks... That's just the temp color I've been using since finishing chemo... Next week I'm back to the full on highlights.. Permanent color!!! If my doctors at UCSF had not pushed cold capping and insisted that they had seen it work so well I'd never have done it! My Dr is Laura Esserman who runs the breast cancer unit there and is co director of the entire comprehensive cancer center so I figured she should know... Even though at the time I told her she was full of shut it wouldn't work. She bet me it would.. I have to admit I was so glad to lose that bet!!!
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tshire, most of us cold capped without freezers or support from our doctors and did just fine. Come here for support, we're rooting for you! Cold caps work great with TC and I'm expecting to see some beautiful wedding pictures posted here next March.
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Tshire, I am so upset by your MO telling you that about your hair. Mine actually told me - it's even in his notes he sent home with me - at my first appointment that I would NOT lose my hair if I capped. Just follow the instructions and you will be good for your wedding! I capped for 15 infusions - 4 AC and 11 Taxol. I thinned but only those close to me would ever notice. Below is a picture of me taken this week - 10 weeks after my last chemo. Nobody would even know I spent most of 2015 getting chemo.
Welcome CindyKage! Yes, you do need to cap prior, during and after your infusions. PCC recommends 50 minutes prior (changing the cap at 25 minutes) and then continue using the caps, changing every 30 minutes , for 4 hours after your chemo infusion ends. This is the protocol I followed and it worked for me. Yes, it is a long day but is so worth it in the end.
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wow you ladies look amazing! Thanks for the inspiration!!
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Angiel - your hair is gorgeous!
My hair is still continuing to shed pretty severely. I'd guess I've lost about 2/3 of it at this point, but I had really thick hair and by some miracle it still hangs well enough off my head to hide the bad areas. I'm going to give the caps one more try through my second infusion but I have bald spots/severe thinning up top. Did anyone cap with with a bald spot or really bad thinning? I'm worried that the caps will give the exposed skin frostbite. If I try to change my hair part, it exposes more thinned areas.
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Jbandkb1 could I ask you to measure your head? It's a weird request but we do what we have to do. Just measure mid -forehead where a hat, like a fedora, would sit. If it's close to the size of mine I think CCC would work for me. I am leaning toward buying the caps myself to cut costs. Afterward I could donate them to my cancer center. Also what temperature did they tell you the caps should be, and did they tell you to wet your hair every 2 - 3 cap changes? Do the caps come with a shower cap-type liner like I've seen in videos? If I know the right temp, how to pack the ice, how to wet my hair, etc then I can do it with caps I buy myself. Thanks for any help you can give me!
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SoCalGrl,
Cut a strip of gauze roughly the size of your thin spot and lay it on top of the thin spot before putting the cold cap on. It will help protect your scalp from frostbite. This way, you can also move your part around, as long as you cover the newly exposed thin area.
You still look like you have a lot of hair, if that's 1/3 of what you had before, wow, you really have some thick hair and enough to work with as far as capping. Some of the girls on here have used a product called Toppix to temporarily disguise the thin spots until the new hair starts growing in. You can search "Toppix" in this thread for more information.
Good luck - hang in there!
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SoCalGirl, I totally second what Wildflower said....use gauze to protect your scalp in those areas. Also, along with part changes during capping , you can bring some hair from the back part of your head forward or even hair from a very deep side part and lay that overhead. I think you have a great amount of hair left! You must have had lots to begin with! I used the Toppix a few times when my part became thin. It's a little bottle of hair-like fibers that you can sprinkle on and blend it with your fingers. It really helps!
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SoCal, I third that emotion. Hang in. You have a lot of hair left. I can't imagine how thick it must have been. The Toppik (not Toppix) will fill that right in. I had a couple of crazy thin spots at the crown and a widening part and with a few sprinkles nobody knew. That hair will grow back in after your chemo ends and sort of blend in with the rest of your hair. Definitely give the Toppik a whirl before you throw in the towel. (People shed at different rates: some slow and steady, some all at once and then slow down, some afterward. That part is unpredictable.) We're here to talk you off the shedding ledge. (And use the gauze. That will protect your scalp.)
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Jbandkb1, and anyone else who has used CCC, can you do me a favor? Measure your head around the mid height of your forehead, about where a fedora might sit. I am trying to determine if ElastoGel caps will fit my head. (Most women's hats are too small for me.) Did you have any trouble with the ElastoGel caps being large enough? I am leaning toward buying the caps myself, as Makingway suggested, to save on expenses. After I am finished I could donate them to my local treatment center. To do that I need to know exact temp that is recommended, etc. If anyone who has used CCC could send more specific info I'd be grateful. I do know this: caps should be on dry ice for 3 hours prior to infusion, be at -20' C, be changed every 25 minutes, be worn for 50 minutes prior, all during, and 3 hours post infusion, that I need 45 pounds of dry ice for 6 caps (should I buy 8?). I'm unsure about wetting the hair and also if there is a thin shower cap-like liner to wear over wet hair. Any instructions would be greatly appreciated. My doctor is not knowledgeable about this and my treatment center does not offer it.
Also, those of you who have posted your beautiful photos online are an inspiration! Thank you for sharing!
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For Tshire and any others whose doctors are telling them that cold capping doesn't work. Here are some photos of my hair 2 weeks post final chemo after using the Penguin cold caps. It has always been rather fine and thin, so that should give you some idea of how well they work even with fine/thin hair, which I would guess is more fragile than other hair types. I am 80 days out from my first T/C infusion, 2 weeks PFC, and this is what my hair looks like today. It thinned, but what stuck around grew about 1.5 inches during chemo. I am getting a trim next week to get rid of the dead ends :-) yay.
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