Cold Caps Users Past and Present, to Save Hair
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has anyone gotten a hair topper for coverage? I never got a wig and was thinking instead to get a topper made when I want a little more of a put together look.
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Wowzas!! What exciting posts....and all the pictures! Fantastic!
First must Congratulate Magari on FINAL CHEMO!!!! 🔔 We are ringing lots of bells for you! 🔔 What a great feeling to be done and to mail your caps back! Rest up and get ready to recover and rebuild! So 😃 for you!
Travel Girl-- my dear capping friend-- you have done an amazing job assisting all of us with your tips and techniques! I truly cannot get over how gifted you have become at presenting your hair style, and of course your positive spirit with regards to it all! Thank you! 😘
Lizabeth-- soooo great to hear from you and congrats on finishing rads!! Wow-- can it really be 8 weeks PFC already! I just crossed 6 weeks and can't believe it myself....of course I still haven't started rads yet-- and you are finished! Your docs are on the ball-- That's fantastic! Will you be celebrating now that you are all through? Your thin spot looks terrific-- amazing what the fullness of your hair coming in does. I'm still waiting patiently for mine to start filling in underneath. You give me hope that the next 2 weeks will be game changers!
JLove and Pbello I think you both are doing an amazing job using your hair and products to manage thinning spots. I can't tell a thing on your "after" photos. Looks great! Pbello-- hope you are recovering well from treatment #3!
Rockcity-- it is a great feeling when someone acknowledges that you should be completely without hair from chemo and yet you are beating those odds with capping! I too have made it an important part of this journey to educate people about capping. I'm not much of a Facebook poster, but put several pics of me in a big blue ice cap over my 4 months, and I've helped several friends of friends find their way to caps. I just hope as it catches on it will become covered by insurance or at least a more affordable option. My family gifted the process to me and I am so thankful! Keep on rockin it!
Toughcookie101-- we'll all be thinking of you and rooting for you come 3/22! Def take advantage of any and all training the paxman staff offer you. And be sure to research reviews from other users before you meet so you can ask specific questions based on their experiences....and then address these thoughts with the staff. It's all an amazing process that really makes chemo more tolerable-- and with 4 rounds you should have great success! Keep asking questions to this group that is ready to help! 👍🏼😍
I'm all clear from my oopherectomy post op and just waiting now to see if my insurance will authorize my receiving proton radiation therapy at MDA. I'm not very good at waiting blindly, but I've certainly gotten much better at it over this past year! I also started my endocrine therapy last night! Popped my first Arimidex pill-- next weapon in my cancer arsenal. This body won't have a trace of estrogen left when I'm through with it! Boy oh boy! As for hair, it some home keeps falling out every day. I feel like I barely have any left and yet I can still manage ways to make it look "normal" to the public eye. Just waiting for the new growth to start coming in underneath-- I'll keep you all posted Boy this post got long quick! Looking forward to sharing more-- Sending capping love to all❤️!!
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MamaFelice - Thanks for the good wishes, and glad to hear that you are doing well post oopherectomy. Agree with you that we have some talented ladies in this group working the Toppikk/root spray/etc.
I also am shedding lightly on a daily basis, but not seeing any further noticeable thinning. Hoping for some regrowth soon to fill in my thin spot like Lizbeth!
Jlove - My understanding is that toppers are not recommended until quite a while PFC because the clips that attach them pull on what remaining hair you have. If you have thinning on the sides rather than the top, there are "halo" toppers that use a wire rather than clips and Pamela23 posted about hers. Not certain, but possibly this brand https://www.hiddencrownhair.com/halo-styles/ She went to a salon to try in person, if I recall.
Because my remaining hair is wavy, has gray in it and currently can't be styled, I can't envision finding a topper that would blend and look natural regardless. The good ones also cost more than a decent synthetic wig, so I opted for the latter and it actually looks better than my real hair - like I've had a salon blowout.
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I just took off my last cold cap! Such a great feeling!! I’ve kept most of my hair, but I do have a bald spot above my ear, which is covered by my hair and my glasses. Hopefully there won’t be another big shed, although I find stray hairs everywhere in my house! Glad to be finally PFC!!
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Erob321!!! Your post just put a smile on my face! I am 33 and begin TC (however Cyclophosphamide not Carboplatin) chemo next week, on the 22nd. I am glad you have had great success to date! I find stray houses all over myself on a good day. I am using the Paxman system.
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Erob321 -- congrats! Such a fantastic feeling. Ring the bell.
On the Root Magic Touch Up -- I do a little spray, then a little powder and then a little spray...until I like the look. Be adventurous and keep trying different things.
The key with the spray is to make sure you do it lightly and a bit away (too close doesn't look as good) -- think of light layers -- works like a charm. You can utube others that use spray -- lots of tips - like holding a kleenex on our face at hairline, to absorb overspray. I have tried about 15 different sprays - i liked the loreal one the best for the colors, price and coverage. I will state the blondes don't work that well -- light brown much better and darker.
Jlove, there are soooo many types of toppers, you just have to be careful on how heavy they are and how they attach. If you don't have hair loss on top, the ones with the string (like the link above) are the best. They don't pull on your hair and don't clip
I had a bald spot on top, so they wouldn't work -- I found the best toppers with the lightest weight and non-harsh clips are made by Follea. https://www.follea.com/chic-topette If you have a place that sells them -- you want the try the toppette with the really light lace (they have a couple of styles of toppettes, one is heavier than the other) - weighs nothing - go and try one on. They had come out with a new cap and discontinued the really light one and they had to bring it back by customer demand. I will warn you -- it is pricey. I have fine hair on a good day, with cold capping, it is that much thinner - these are really good for fine haired ladies, if your hair on a good day is not fine -- I would try the toppers below - they are more cost effective and beautiful ... (the hair is just a bit thicker)
The second best alternative to follea that I have found is https://www.toppersbysharon.com/shop -- she ships to your house with a great return policy. The only issue for me is that her stock pieces are too heavy (custom order takes awhile) -- you need her to create a lighter one, cause you don't want the piece to be heavy and pull. Also, order it with a comb in front and then I would order the follea clips - they are the best in the industry - silicon covered to make them really light on your hair. If you really want to see some of her beautiful options, go to her instagram page. Oh the beautiful blondes she creates ..:) I am dreaming of summer.
My first topper that I bought was below-- no clip hair toppers, great idea, bad product for me. Too much hair at the front -- and too heavy for me. I have it in a drawer, at some point I am going to donate it. The women's utube channel that did the video below has other great videos on how she uses powders and sprays. I used a lot of her tips.
Thats my post on toppers people - I hope it helps you. When I found my follea topper, I was so happy, I finally felt sexy again. I hope you find your sexy ladies - whatever that means for you. Don't stop trying, where there is a will there is a way... my hair keeps changing -- I just have to keep finding ways to make it look good through the evolution. When my hair looks good, I am confident.
If anyone has any specific questions, just private message me - happy to share my wisdom. I did wayyyyy to much research on the topic.
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Oh and for those asking about volume, the best thing I found that works is dry shampoo. You can use colored like Bumble and Bumble or just clear -- it absorbs the greasys and also helps with volume. As I stated above, I have fine hair on a good day, and I always used dry shampoo even on wash days to help with volume.
Although the best way I found to create volume is creative bobby pinning -- twists, slight puffs, etc. Bobby pins are good cause they don't pull or take out your hair like hair bands do.
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Hello All-
2+ weeks PFC and I am feeling a bit better every passing day. I am a bit surprised at the amount of fatigue & muscle ache I feel-especially at the end of each day-shuffling around like an old man is so not attractive!
That being said -on the hair front, I am still shedding a minimal amount each day but hope it is slowing. I got a human hair topper that I am wearing to work (part time) and people, most who never knew about my diagnosis, are saying how great I look and did I just get my hair done! I have done a lot of research and am going to take the chance on a no shampoo, dry trim to take off a couple inches of my shoulder blade length hair. The bottom inches are frayed and sad. I have not read about anyone having more sheddingafter a during, or shortly post, cold capping cut. I'll keep you posted.
My bmx with direct implant is 4/11. Have been advised to take a nurse led mastectomy class, however it is not calendar nor location convenient to me. Had anyone else taken one? How much info was valuable? Anything online that is comparable? Any advice would be appreciated.
Have a great St Paddy's weekend.
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Sherry, how often did you wash your hair? I'm doing 16 rounds. Only have 2 behind me and the shedding has started. I'm a bit freaked out and dreading the heat of the FL summer. I'm afraid it will accelerate my hair loss.
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Sherry, how often did you wash your hair? I'm doing 16 rounds. Only have 2 behind me and the shedding has started. I'm a bit freaked out and dreading the heat of the FL summer. I'm afraid it will accelerate my hair loss.
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Hi 2catsintheyard, I had a unilateral mastectomy with expander Feb 1st. I live in Canada, and I went to the pre-op nursing led session. They gave me a booklet pre-op, and I found the session went over the booklet for the most part. It reiterated the post-op exercises (which I forgot and followed in the book anyhow), mentioned drain care (also in the book I got), and talks about hematoma, seroma and infection signs. In my case, most were in the book. It was a great place however to ask questions if you have any, but I’m sure you could get those answered either way. In my experience, I don’t think attending would be critical. I would however ensure you can at least get a copy of the booklet. I got one at the nursing session, one at my pre-op appointment. They were both similar.
On another note, I start TC chemo next week, four rounds. I am using the Paxman scalp cooling system. What chemo regimen did you have?
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2cats - Congrats on being PFC!
I had a nipple-sparing BMX with direct to implant reconstruction, and no preliminary class was offered. My oncoplastic surgeon (who did both surgeries) provided me with a link to some information from the American Society of Plastic Surgeons regarding breast reconstruction. There's not a lot of info specifically about one-stage implant reconstruction, but it does have a lot of information on what to expect following surgery. http://www.breastreconusa.org/education/breast-reconstruction-quick-facts/
She also gave me a scholarly article on what the reconstruction surgery involves and some before/after photos. I found this info sufficient, but probably would have made the effort to attend a class if such a thing was available.
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Tough Cookie,
I’m in Canada too...Toronto. Would you mind saying where you’re getting treatment? I wasn’t given any information for any portion of treatment except for a pre chemo class...all I really got afterwards was a wave goodbye, a good luck and “return for checkups”. No info at all on post op resources nor tips. I found out the hard way that it was up to me to do the research. Thank goodness for this community...it’s given me so much help
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Hi Egads, I'm getting treated in Ottawa, we're not all that far away! I was given info as to what to expect post-op, but not for chemo. I have learned a lot from this site too.
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lipstick- I’m not sherry, but will tell you a couple things about washing: 1. I have (had) really oily, daily to maybe every other day, washed hair and can totally tell you it is gospel truth that you will be able to wash every 3-6 days toward the middle to end of chemo. That’s how dry it gets. 2. Hair washing days are the worst and lowest part of your week during chemo due to them being the highest shed days, so it’s best to push it as you can & plan your shampoos according to when you want to look your best.
Cookie- I had 6 rounds TCHP from November-February, & would change my bio but can’t seem to edit the treatment section.I used elastogel caps from Warrior Caps out of TX & would most highly recommend them. Paxman is only available through Mayo Clinic here in Phoenix & they are not my facility. Virginia Piper Center is & they hope to provide it within the year.
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Thanks for all your input on classes, I kind of feel like I have a lot of info already and have such a busy few weeks before surgery just can’t really fit a 4 hour chunk of time including travel to attend. Have a pre-op w/ plastic surgeon Monday & will ask what else I need to know.
Another question I’d like to ask everyone-PS is offering Botox shots for post op numbing & Id in healing, but they are terribly expensive & not covered by insurance. Has anyone else had this? What did you think?
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Interesting re the offer of post-surgical Botox shots! My surgeon is pretty cutting edge and there was no mention of them for me.
I received a nerve block pre-surgery and generous amounts of Norco for afterwards. I found the initial recovery fairly easy. There was significant sensitivity and discomfort on my upper chest and nipple area from healing nerves a couple of weeks later, which felt much like a bad sunburn. On the plus side, I have full sensation post-surgery, which is not the case for all.
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travel girl- I'll try bobby pins.. I have this short piece inn the back of my head I had to cut( bc of knots😣during my shed) so I'll have try.. I get nervous with any clips or anything.
2cats- how does ur hair fair the topper? I'm nervous about leaving the clips in .
And I didn't get a class for my bmx, just met with plastic surgeon, and read alot online. Preop nurse also went over a few things Then got postop instructions from nurses so depending on what type of person you are..i think you could skip it.
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I’m thankful every day for this thread. Of the half dozen or so on this site I had read on or followed, this one has the most sense of community, information exchange & encouragement. Thanks all for your participation.
Jlove-the topper is working spectacularly so far. Mine is very thin hair wise, so not a lot of weight and the base (or yarmulke as I think of it 😸) is about 1.5” wide by 4” long) so between these two things the 4 clips, one on each side don’t tug at the hair. I have noticed no increase in shedding so figure all systems are go. Even if it did increase shedding a bit I’d probably still wear it because I look So much more like “me”. All this being said, I only wear it a max of 6 hours (part time work days, & have worn it out to dinner a couple of times. I always put it on last & literally most times take it off in the car to limit wearing time as much as possible. At home I’m a step sister still, but it’s nice to be Cinderella at the ball
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Pbello,
What size Maxi Pads did you bring with you? I asked my nurse about it last time, and she said that is not needed with the new Digni caps. I didn't feel it was as cold up there, and I'm not that far out after to my first session to know what the shed will be like. I'm going to bring some Maxi Pads with me next time.
Thanks!
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To All, but especially Mama loves - it's not maxi pads, but panti liners if you are speaking of covering your ears. If it is ears you want to cover, I found a great solution at Walgreens. I bought a blue neoprene sleep mask and cut it at the bridge of the nose. Then I had a shoe repair punch two holes in the eye covers and used them to cover my ears with the elastic strap velcroed together running at the base of my hairline around my neck. They did need to be repositioned with each cap change but worked perfectly to keep ears from frostbite and being able to hear a bit.
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Hi Everyone !
I haven't been on here for a good 4 weeks or so !
Update : Mumma finished her 3rd and final round of EC ! yay for her, she starts 12 weeks of weekly taxol this friday ! On her last EC infusion the nurse refused, didn't let her continue with cold capping which was such a downer as her onco was happy for her to continue so long as they covered any balding patches with gauze to protect her scalp. It was 3 hour issue which i felt was so mean of the nurse to take away from mum as she's managed to save a good amount of hair so far. Its very thin but smart enough to slick back into a little bun without looking like she's going through treatment. Everyone at the hospital seems to have their own opinion on cold capping and this particular nurse was just the biggest negative nancy and didn't believe it worked and kept on telling my mum its not going to work you are going to lose you hair this is a waste of time etc... AWFUL i was fuming because it was clearly working, and her onco was happy with it too, to our luck her onco was away and we were stuck with this nurse and another junior onco who was terribly awkward and was like il leave it up to your nurse to decide... just thinking about this situation and that day and how sad they made my mum feel makes me so angry. Its just unacceptable.
Anyway..Now that she starts taxol - do you think her not doing the cold cap during the last EC infusion will make her shed more, she hasn't shed in over 6 weeks, she wants to continue cold capping with taxol hoping to save what she's already managed to save ! I feel this is all about staying positive and no-one should be able to take that hope away from her esp if there are results !
thoughts anyone ?!
Xxx
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Mama and 2cats - My mum used a fleece head band from the GAP plus wrapped her ear with flat cotton pads, we layered about 3 or 4 per ear under head band and she was good to go. She has super sensitive ears and she said it didn't bother her at all !
Hope this helps
xx
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Love-I am beyond slayed and drop jawed at the idea that ANYONE could tell your MOM she could NOT continue capping. Was there some legitimate medical reason, threat to her health, or legal liability to the clinic? Because if not that is the biggest load of horseshit I have heard in a long time. If I were in your shoes and any additional hair falls out, and I would think it will sadly, I would consider going after the clinic to reimburse you for all previous cold cap expenses due to that nurse’s horrible dictate
I am so sad and mad on your mom’s behalf. Please keep us posted.
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Good Morning,
Figured I would just check in. I had my fourth treatment(finished second cycle) of Halaven yesterday and still capping. Feeling pretty defeated though as the shed started after last weeks infusion, and has remained heavy since. I don't think it will end until it's all gone. This sucks.
My husband has been great and the kids too (who I normally hide everything from... they had to be in the loop for this but just know I am getting medicine that is bad for my hair.. they done know specifics and I am not ready to bestow that worry on them) they all keep telling me it's not that bad. Really?! I look in the mirror and get teary. It's bad.
I guess I will continue on trying to salvage but need to have a back up plan. I am in New York, about an hour oustside of the city...and help or recommendations for hair toppers or wigs? Not a fan, but may not have a choice.
Cancer SUCKS.
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Loveandlight - I would put a call into your mothers onc and explain the situation and seek the onc’s help in straightening out nurse ratchet’s attitude problem. Your mother deserves to do whatever she (legally) wants right now! If the onc is supportive then it would seem to me that it’s simply a matter of a control freak that needs put straight. Damn reading what you wrote made me furious, 2cats is right this is total horseshit! If you’re able to (I understand the stress you’re under), don’t let this drop! Give your mum a big hug for me...and tell her there are a bus load of women here that thinks she’s beautiful with hair, little hair or no hair at all! Hugs to you too
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Teachermom - amen, it sucks...sucks large!! I’m sorry you’re not getting the results from the cap you had hoped for. I didn’t have the option when I did chemo. I tried wigs and hated them...I looked horrible in them and hated the accompanying sweat they caused. What I ended up doing was using a fishnet like head stocking and attaching a bangs only piece...topped it off with a hat...it was a godsend...much more natural looking...to the point of people didn’t stare at my head anymore. Not that I care...let em’ stare, their problem.
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Teachermom - Sorry to hear you're worried about unsuccessful cold capping results. Don't give up yet! But realize that we each have different amounts of shedding, at different stages, and end up with differing end results. Reading through this *entire* thread, and Googling elsewhere, my take is that the vast majority of cold cappers are "successful" if they manage to hold on to roughly 50% of their hair. Many lose even more than that. We must constantly remind ourselves that "a bad hair day is better than a no hair day." And that starting with a few wisps is better than starting from bald.
I am 2 weeks PFC and although I have about half of my hair left, it is frizzy and graying and thin on top. I got a wig for when I want to look a little more pulled together. My own attitude is that this is a temporary, relatively short-term situation and I wanted something simple and fairly inexpensive that I could just put on and go. I chose a synthetic wig with a monofilament top and no permatease (can be parted anywhere and is not poufy) that fits my tiny head - Tatum by Amore. I had my stylist trim it slightly. It actually looks better than my prechemo hair on its best day - as if I've just had a salon color & blowout.
Since you are in the NY area, you probably have access to wig salons where you can try on in person to get a sense of fit and styling. Online pricing is usually much cheaper once you have a sense of what you might want. https://cysterwigs.com/ is a great information resource as well as a wonderful place to shop. YouTube has thousands more reviews once you hone in on a particular brand/style you're considering. I've been really encouraged by women dealing with alopecia who post at both. A lot of them seem to be able to actually have fun with wigs, using them as a fashion accessory that makes it easy to change up their style and color. I'm trying to get to a similar take!
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love and light, I am so angry at that nurse and sad for your mom and you! How dare she make a choice like that based on her own beliefs when it is your mom's body, and only her beliefs and decisions that matter! I haven't worked since my youngest was born 23 years ago, but was an RN.... that kind of behavior was completely unacceptable back then and is even more so now. I know this is a difficult time for both of you to find the energy to deal with one more issue, but I am hoping you are able to meet with the nurse manager for the infusion center or the nursing supervisor for the hospital to discuss the incident, as well as talk with your oncologist. Both need a reminder about patient bill of rights and the importance of respecting patients choices. there also needs to be some consequence for the nurse so that she learns from this and doesn't do it again (doesn't need to be vindictive, but taking this to her supervisor ensures that she will get the message) . I also agree that you should try to get the clinic to pay costs of capping if her actions screwed it all up.... they may not pay out, but again, they will get the message that the nurse's actions have consequences. All this won't change what happened, but i think it would help your mom &you feel back in control over the situation and hopefully prevent this from happening to cold capping sisters in the future!
Prayers that there's no increased shedding, and hugs to you both!
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Twocats, Egads, Willow -
Its just downright wrong, the emotional turmoil of just going through treatment alone is so mentally difficult, on top of that hair loss for any woman really chips away at ones self esteem. Cold capping gave my mother a sense of comfort, for that to be taken away from her that day really broke my heart.
I got in touch with my mums Onco who is the senior onco at the hospital and she sort of responded quite vaguely to the situation, of course she apologised and acknowledged it shouldn't have happened and that mum had the right to continue, but then she semi justified the nurses decision, as she was a senior nurse ( apparently "they know better" when it came to cold capping as they deal with it rather than the doctors) So we basically got a half assed apology and a lets discuss it when your next in for the check up.
The nurse justified her actions saying my mum had lost 70 percent of her hair, and that the cold cap won't work if there are balding spots ( fine which we agreed with ) i said lets put some gauze to protect the patchy area ( another nurse - who was so sweet and compassionate, said thats perfectly fine ) but this awful one just out right felt there was not enough hair to protect, and that is will burn her and its basically gonna waste time for no reason when she can go home and rest. URGH i don't think i can bare to look at her if i see this nurse friday. i don't know how i kept my composure that day
All in all its been 3 weeks + since her last and final EC infusion and she hasn't shed. She hasn't shed since her 1st infusion where she lost quite a lot but still has hair she can tie into a bun and look fine ! My question is, as EC is very strong do you think her last infusion will have an effect on her remaining hair now? Is there any point to continue with cold capping as she starts Taxol this friday for 12 weeks. ( i made sure we had our original nurse -who is a gem- for the coming sessions )
As for reimbursement, we are quite lucky that our health insurance covers cold capping costs, i can't help but think that this nurse took something away from my mother that you can really give back.
xx
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