Cold Caps Users Past and Present, to Save Hair
Comments
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Jalsgal, make sure to take some type of pain reliever before you begin. That first cap will be really cold but it will get better in about 10 minutes as your scalp freezes. Also, sometimes the caps aren't cold enough- that's why you check the temperature 10 minutes before each cap change. If not cold enough, take the cap out of its plastic box and place it directly on the dry ice for a few minutes. It will get colder very quickly. Only do this if your dry ice blocks are wrapped in bags- if not, you might damage the caps. Good luck!
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Jalsgal,
You will do ok. Watch out for your hair getting caught in the velcro. It helped me to fold the back velcro caps up a little bit and hold my hair back as my friend put it on. Also, sometimes the gel is too hard and lumpy to get good contact with your head, but you can smooth it out on your head as it gets less cold. Don't worry if everything is not exactly precise the first time. I messed things up a few times and still have most of my hair and I'll be done with chemo this week.
Good luck!
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Jalsgal, you've got this! Today means you are one day closer to having this all behind you. Keep changing your part as you swap caps, and drink LOTS of water…I did a 16 oz bottle each hour during and then lots afterward, even getting up a couple of times during the night to pee and drink more water. the drugs do their damage immediately and so flushing them out of your system will really help…tomorrow morning, do some light exercise to keep things moving. Sending you all positive vibes today!
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I am new to this site and forum, and I thank all who have shared their experiences. It's uplifting to hear of successes and to know that I don't walk this journey alone.
I have a question about the Penguin cold caps. I am soon to start 4 cycles of TCH for HER-2 positive recurrent cancer. Nodes were negative, thank God. Reading about the side effects is helpful in terms of preparation. I would prefer to try to keep my hair so I don't look so sickly to my kids & grandson, and these caps sound like a promising development.
Has anyone had experience with obtaining reimbursement through insurance for the cost of the rental? I have Medicare and Tricare insurance. Also, what is the usual time period between ordering and shipment?
Is it possible for one to apply the caps oneself? or is it necessary to have a second pair of hands?
Many thanks for any advice!
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Hi SueNavyBlue,
Everyone here is very helpful.
I have not tried submitting to my insurance yet so I can't speak to that, but I can say it's possible to do the caps oneself. My best friend used to do mine but started a new job and my husband is too rough so now I do it myself. He still takes the caps off the dry ice and kneads out the hard lumps but I put it on my head.
I also had the caps shipped second-day since I procrastinated. I think the cost was 130 from UPS for me.
Wish you an easy time of it!
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Welcome SueNavyBlue, you are definitely not alone. There are a whole lot of caring, smart and funny women on this board who are determined to keep their hair. We can help.
A few women have posted about their success getting insurance reimbursement but it's not common. PCC can ship the caps very quickly (overnight if necessary) but it will cost you. The earlier you order the cheaper the shipping cost. You want to have them a few days early anyway so you can practice. It's certainly easier to have a helper (or two). I don't know if I would have been able to do it myself- especially with an IV in my arm. Wow Harrysmom- don't know how you do it!
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Has anyone been able to save their eyebrows?
Also, I was hoping to trim my hair before chemo starts but Frank from PCC told me not to. It's just very long and the ends need trimming. I'm afraid it's going to be very hard to "gently" comb.
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You can trim but only up to an inch is what I was told. My hair is almost to my waist so gentle combing is very tedious. The wet brush, heavy conditioner on the ends, the tangle teezer brush or the cricket wide tooth combs work well if you go super slow, starting from the bottom and working up. I think it was Hortense that said to imagine yourself a Disney princess brushing your hair section by section. I usually keep a low ponytail, braid, bun, very very loose to keep it from getting tangled after I brush it out. I'm also a stay at home mother right now so I don't have lots of places to be that require more formal hairdressing.
On another note, I have had two caps bust on me. The first one was replaced promptly in time for my chemo. I didn't notice the second one was oozing gel until a Sunday night when I was cleaning them. Since I have chemo every Wednesday and didn't want to pay for one cap to be overnighted, I sucked it up and did it with 7 caps. I just got off with Geralyn at pCC because I never received my second replacement cap from last week. Something happened that she didn't put the correct postage on the package. Anyway, I asked her about the discounted caps. My caps barely velcro , I've had two bust with a third that is ready to bust, plus I am stuck doing two sessions with only 7 caps. Shouldn't I be afforded some discount? She said the discounted caps were stained or tearing and not always available.
I think it's lovely that people can get the discounted caps. It makes capping accessible to more women. With that said, has anyone else had caps that were less than good and received some sort of discount or reimbursement from PCC? It's a lot of money plus I have the additional cost of $125 a week for dry ice. I don't mind paying but now I am annoyed because my caps aren't the best quality yet I'm paying top dollar. Sorry for the long winded rant. Dreading #9 tomorrow.
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My first treatment went pretty well today with the cold caps. The only issue was that even though the caps got to the correct temp, the headbands only ever got to -28 degrees which makes me nervous that I'll lose my hair around the nap;( Any others have this issue? I also think I got a small burn right above my bangs.....worried that I might lose that area also. Does anyone know what to do for a burn that might help? On a positive note, the caps are totally doable...the pain from the cooldness for me only lasted 5 minutes. I took Ibuprofen 1/2 hour before I started treatment.
If anyone has any comments I'd love to hear them! Thank you so much;)
Mariann
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Hi Jalsgal. I just joined the bc website and so happy to find this forum board .... I have my first TC chemo tomorrow morning .... and giving the PCC a try, as well. Good to hear the cold wasn't unbearable but sorry to hear about the areas you're concerned about. I will let you know if I experience those as well. The timing you outlined is also my understanding, although PCC said 4 hrs after treatment ends is OK. I will try the ibuprofen beforehand (another tip given to me was 1/2 an Atavan under my tongue 15 min before first cold cap. Under the tongue works more quickly than swallowing the pill:)). When is your second chemo?
Also an important thanks to everyone on this board for posting ... your experiences are not only helpful for great tips but for letting us newbies feel like you are there to help with concerns, questions and general pre-chemo panic. And we're here to support each other! I'm reading through so many of the older posts and feel less panicked about beginning chemo and maybe more determined to just get through it on a day to day basis. For anyone remotely a control freak, this is so full of unknowns that we just have to keep our eyes on the goal. I wish strength and positive thoughts to you all.
Jane
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Good luck Jillmare! I'm a control freak like you... I read through every single post from beginning to end and back again. I think you have to pick up all the nuisances and tips of living the cold cap life!
As you are just starting your journey, I am having my final treatment of T/C tomorrow.
Passing the torch now... Good luck to all
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what a lovely synchronicity, you will be my inspiration tomorrow! Good luck ..... and please continue to post:)
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Dear jalsgal,
With regard to the neck bands, my capper husband puts them in zip lock freezer bags and keeps them in between blocks of dry ice. Then he quickly rolls them with a rolling pin to make them malleable and ready to wrap. So far my nape and the area above my ears has hair. Just finished my 4th treatment of 6. Best wishes as you cap and work through chemo!
Jeni
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did anyone use latisse for their eyelashes/brows and if so, did you wait until they started thinning or start right away? I have 3ml which is a 2 month supply, doing a 3 month regimen. I haven't lost any hair there yet and had my 2/4 infusion last week. Also when to start the Nioxin? After treatment? Biosil after treatment? Sorry with all of the questions
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daniella- my caps were crappy and I didn't receive any discounts on mine. Plus, I returned mine in August and had to contact them to get my deposit back this week, 2 months after they got them back. Kind of upsetting, but whatever. If nothing else, cancer has taught me that little things are just that, little. I just don't have time in my life to be pissed off about things like that
Holly, I'd wait on latisse until after treatment. Eyebrow and eyelash loss seems to be very different than other hair loss. I didn't lose mine, they thinned, but not enough to notice by anyone other than me. My dr told me Latisse doesn't grow lashes, it thickens them. I don't know how true that is, but since latisse doesn't stop your lashes from falling out, it may just waste a spendy product. Better to save it until after chemo and use it then.
Edited for horrific spelling lol!
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wyomama - PCC gave me a discount. I wrote them an email explaining all the problems and that I had to do two treatment with only 7 caps because my replacement never arrived. The fact that I had to have two replacement caps was proof that I have some really worn out caps. So they said they would give me a discount as an act of good faith but by no means were admitting that the caps were defective. Whatever. I'll take it. I have to use them 3 more times and then I'm sending them all back. Cannot wait!
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Have you guys heard of this? My oncologist told me to get it. She said everyone has been saving their lashes and brows by using this. I just ordered it. http://brianjosephs.com/html/lash_brow_conditioning_gel.html0 -
jeniferE....thx for that tip. Hope it's not too late and the hair at the nap doesn't fall out before my next treatment;(
Jillmare....I hope things went well for you today...pls let us know! I am doing chemo every 3 weeks for 4 treatments. How about you?
Another questions for the "pros"....anyone experience a little freeze burn on your scalp and if so what did you treat it with and did you lose your hair at that spot??
Thank you again for any info!
Mariann
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Hi All,
It's been a while since I've been on the boards, but today was my last chemo!!!! After my port infection, my chemo was changed to weekly taxol. So I ended up doing 3 Taxotere/Carbo w/Herceptin and then 6 weekly Taxol w/Herceptin every 3 wks.
Although weekly Taxol is easy on the hair in decided to keep doing the cold caps just on case. Well, I am happy to say I lost probably 10% of my hair. Most of which came from the TCH infusions. The only place it is noticeable if I lift my hair up is above/my left ear. Unfortunately many of my caps are too small or not evenly cut so they don't cover the nape of my neck and above the ears. I used the head bands and I am sure they helped a little but not enough. Otherwise my shedding was evenly distributed. Even though I only did 3 hard on the hair chemo's, I would have been bald if I didnt use the PCC's....so only having a 10% loss was amazing!!!
As for eyelashes and eyebrows...sorry peeps....even if they are staying while you are in treatment...you may still lose them. My eyebrows started thinning a lot around 3 treatments of TC and then into the first few tx of Taxol...then they started growing back!!! Weirdly my eyelashes waited about 6 weeks after my TC treatments to really thin out. I have almost no bottom lashes and and only a handful upper lashes on each eye. I've applied SmartLash or RapidLash (I forget) but not daily... I know they will start growing in as the rest of my hair has started to grow...
Another person on another board said her eyelashes fell out after chemo....so it's not uncommon for them to hold on then fall out.
On another note: anyone in NY Metro area that is starting Cold caps and needs coolers? I have 2 for sale!!!! They worked amazingly well. My caps were always colder than they needed to be...I packed them @3 1/2- 4 hrs before treatment. I also have a thermometer and 2 extra Velcro wraps to sell. All less than you buy in a store/online!
I'm sending back the caps tomorrow...woohoo!!!
Good luck to all that are using the caps!!! Keeping my hair had a major impact on my fight. Keeping my privacy and some sense of normalcy was important for me...I knew no one knew about what was going on in my life unless I told them!!!
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jennjdance,
Thanks for the product recommendation! I was thinking about buying Latisse, but don't want all the chemicals. I've thrown out all my creams and makeup and replaced them organic, natural or at minimum no paraben product.
I'm not going fanatical, but trying to change things that I know are carcinogenic or negatively effect the endocrine system. Unfortunately, the beauty and cosmetic industry are the worst culprits!!! Look most drugstore and even high end cosmetics or creams have Parabens, polyethylene glycol, BHT, PEG's or PPG....the list goes on!!!! All bad for you!
Ok...,I'll end my rant!
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Hi Kilinki,
I'm replying very late. A continent away - Also from South Africa, Strand in Cape Town. My oncology department (Somerset West) also had cold caps - though it wasn't in peak condition (nobody uses it - I would have thought that there would be a waitinglist??) . I was diagnosed in December 2013 and started my treatment 8 chemo sessions (4sessions X Cyclophosphamide/Doxorubicin followed by 4sessions X Docetaxel/Herceptin) in January 2014. Had lumpectomy and I'm currently busy with 25 session of radiation. My hair thinned out a lot but not to extent that I needed a wig. When they say snugfitting --- it means snugfitting;-) Is it possible to get your contact number. I'm trying to get the message regarding cold cap therapy "on the South African street" . It seems that nobody knows of it or the oncologists are reluctant to try something new. Luckily mine was familiar with the treatment. Similar to everybody on the forum - I just wanted to recognize myself in the mirror.
My hair is red - the hair that did fall out came back ... red ..... with a few grey ones;-) I would make the same choice regarding cold caps again. Life is great! We are eating this cancer-ELEPHANT piece by piece.
I BIG THANK YOU to the different forums/women who contribute on Breastcancer.org - you are one my candles in a dark tunnel.
Greetings from a sunny Cape Town.
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Hi,
I'm a continent away - as Kilinki, from South Africa but Cape Town. My oncology department also had cold caps - though it wasn't in peak condition with lack of gel in some patches (nobody uses it - I would have thought that there would be a waitinglist??) . My treatment of 8 chemo sessions (4sessions X Cyclophosphamide/Doxorubicin followed by 4sessions X Docetaxel/Herceptin) started in January 2014. Had lumpectomy and I'm currently busy with 25 sessions of radiation.
My hair thinned out a lot but not to extent that I needed a wig. When they say snugfitting --- it means snugfitting;-) Things I did: * I wet my my hair before placing the cap on * took 2 paracetemols an hour before the first bag starts, it helps with the brainfreeze, * made myself satinpillowcases as the material tugs less on the hair and then * washed my hair with cold water.
Similar to everybody on the forum - I just wanted to recognize myself in the mirror.
People who were enquiering regarding red hair - my hair is red - the hair that did fall out came back ... red ..... with a few grey ones;-) I would make the same choice regarding cold caps again. Life is great! We are eating this cancer-ELEPHANT piece by piece. Lost some eyelashes and brows after the last session of chemo - Now every evening I'm religiously using coconut oil on my lashes and brows. It works.
A BIG THANK YOU to the different forums/women who contribute on Breastcancer.org . I have followed you threads of hope, advice, laughter and at times some tears. Your candlelight of care and hope is far reaching even as far as South Africa!!
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Greetings from a sunny Cape Town.
Anna Maria
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Jennliza, as the first person on this cold cap thread to have weekly taxol + herceptin I searched in vain for information on hair loss with weekly taxol. I kept almost all of my hair with cold caps. Treatment with weekly taxol + herceptin has become much more common now, since excellent trial results with that regimen were released. I've been reading along on a BCO thread for women with that regimen, and all of them report significant hair loss. It doesn't seem to be as sudden or as complete as with ACT or TC, but after 4 or 5 treatments most of them need wigs or other head coverings. I don't believe any of them have gotten through treatment with enough hair to look anything like normal. So...it's a good thing that you kept on using the caps. I do think weekly TH is the easiest treatment to retain hair with cold caps.
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YAY JennLiza!!!!!!!!!!!!!! You are done, so happy for you. One of my best days was packing up those caps and shipping them back. As much as I was grateful for them, I could not get them out of my house fast enough
HollyD, My lashes and brows thinned during chemo but I never lost them and they did fill in pretty quickly. I did use Latisse pfc, but not faithfully and all was fine. You should take the BioSil now during treatment and keep afterward for a few months…it will help your hair grow in faster and stronger.
AnnaMariaV, what a lovely post! Thank you for sharing your story, so happy that you had success and to know that the caps are alive and well in other places in the world.
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Hi ladies, I am going for my last treatment of CT and my last cold cap process. My hair is still there with coverage, except above my ears. I was scared at first but now have come to accept the bald spots. My hair is shedding everyday but not like the big shed of days 20-22. I will keep you posted. Can't wait to send the caps back and have freezer space again. To all the newbies the first treatment is the worst in terms of anxiety. Be strong, your nurses will help you through it and then you will know what to expect for the future treatments. Kudos to my DH, who did all of this without help. Anyone in SF Bay area that needs advice or would like to have a cooler and infrared thermometer message me.
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Wyomama - your hair is regrowing even though you can't see it yet. I kept looking for regrowth and had almost given up when I finally noticed some 1/2" long, very fine, almost transparent hairs. Once I spotted them I saw that there were zillions of them coming in all over my head. After that first half inch, the hairs became thicker and had color to them. Pretty soon my cold cap saved hair looked as if it had extra volume and I was having trouble plastering down a cowlick on the top of my head. It eventually grew long enough that it fell over and blended it, but for a while it was funny looking. I had several waves of chemo induced soft loose curls followed by my usual straight hair. The waves have grown down to my shoulders and are gradually being trimmed away leaving me with straight hair.
AnnaMariesV - Congratulations on your success in keeping your hair! It's wonderful to hear that women in South Africa are also able to keep their's through Chemo. How great that your facility had the caps for you. Thank you for posting about it. One day, I hope, more facilities around the world will be as advanced as your's is now. So many of us have had to fight to be able to use them. I had to switch doctors and hospitals to do it, but I am glad I did.
Re: Insurance - I tried to claim the cost of my cold cap rental, but was turned down. So annoying.
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Wyomama - I hear you. And Hortense thanks for the answer above :-)
I am 5wks PFC now, and honestly have lost more hair since finishing than before..it's not a problem per se (still have full coverage, no one knows I've been in chemo who I don't want to know, and when I look in the mirror I see me not cancer...so grateful for these caps!), but I am getting frustrated with it...especially not knowing when it will end!! Makes it feel like somehow it may...not.
Eyebrows fell out and grew back since finishing chemo :-) eyelashes, not so much. I am starting to wonder if they may not come back. Am using latisse. Maybe I am just impatient...
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Raindew - I shed for 4 months PFC. I know how tough it is - but it will stop! Eventually!
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Hello, sisters (all female?) in BC: I was diagnosed with HER2 in February, endured chemo side effects with the support of cold caps, and finished radiation treatment two weeks ago. I kept most of my hair but have shed more in the last two months (chemo ended over three months ago). I now have some bald spots, although new hair is growing. I've followed all the suggestions from PCC but would like to hear from more women who have completed treatment. Did you lose hair after treatment, like this? How long did it last? It seems that when you think you can move on, there's something else....
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Wandering - many of us continued to shed afterwards, although not everybody does. I shed for 16 weeks after chemo ended as did dance trance as you can see from her post above your's.
Just when I thought it would never end, it stopped overnight and I didn't lose another hair for months. The follicle of each hair you lose goes through a resting cycle before starting to regrow a new hair. Those hairs that you shed more heavily around your second chemo treatment have probably regrown about half an inch long now, their follicles having rested their normal period. As for bald spots, you may not have had enough coverage above your ears or at the nape of your neck. Quite a few ladies lost hair in those spots. I lost hair in two spots in areas where I had experienced frostbite, but they came back fairly quickly.
I found that using Nioxin shampoo #4 for chemical treated naturally thinning hair made a big difference in how my hair looked as it removed a lot of build up left over from when I was not able to properly shampoo my hair during chemo. It might be helpful for you also. Having my hair professionally trimmed made a huge difference too. I had lightened my hair for years and had long dark roots after chemo and radiation ended. My hairdresser started out gently covering my roots by using a glaze the first time, then moving to gentle lightening the next month. I made sure cool water only was used to wash and rinse my hair while there.
I started taking Biotin and BioSil for my hair and now, a year and half later my hair looks fabulous, better than it has in years. Both take a long time to have an effect since hair takes a long time to grow, but are well worth the effort.
I hope you are doing well and wish you the best going forward.
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