Cold Caps Users Past and Present, to Save Hair
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Hi red332-
She is her2+ er pr neg
I believe she will do herceptim taxotere, carboplatin. Prejeta?
Not sure what order
Which caps should we recommend?
I should change my screen name since I'm not selling elastogels
Anyhow much appreciated!
Hugs e
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Travel girl - thanks! Mamafelice looks awesome👍Great success! Thanks for photo mamma felice!
I'm asking questions about saving my friends hair based on her specific chemo protocol. She will be doing a different chemo. I posted her chemo protocol above.
Herceptin-carboplatin-taxotere-prejeta
Sorry about my spelling.
Thanks all
Still trying to figure out the best caps to recommend.
Keep in mind the stats below are mine, not my friends...
I did AC T and lost almost 80% of my hair. Mostly over all thinning with a few bald areas. It recovered very fat
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there are others on this forum who know more, but I think their concern may be about the Perjeta, which I believe is taken over a longer period of time?
I used the dignicap system which is supplied by the infusion center (you wear one cap during the entire process and near freezing water is circulated through it via a big machine). most women capping now seem to be using penguin but there are others (arctic cold caps, chemo cold caps). I think it would make sense for her to make calls to the various companies and ask them about her specific chemo regimen. Her tumor characteristics are not a determinant, but the exact chemo protocol is.
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Also ask the Repunzel project - they keep stats on the success rate by the protocol - I sent them an email when I was considering my options -- very helpful.
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Hi, I did Taxol Carboplatin Herceptin and Perjeta, 6 rounds every three weeks with Herceptin for a year. I am triple positive. I used Elastogel Caps they were lent to me by my infusion center. I lost about 50 percent of my hair no bald spots. I didn’t lose any hair first three rounds most of my shedding occurred cycle 5 and 6. I am 5 weeks out from Cycle 6 and shedding is slowing down and I have some new growth. If your friend goes with Elastogel make sure she uses something like ace bandages to keep the cap tight fitting. I am very pleased with the outcome, if you didn’t know me you wouldn’t know I was going through chemo. I plan on waiting til May to color and cut. I hope this helps, good luck to your friend. I followed your posts when I was looking into capping and found them helpful I’m so happy for you. You hair looks wonderful!
Also like the above poster I went with pellets and 30 pounds not 80 lol
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Elastogelgirl - I am using Arctic Cold Caps for my TCHP. I liked the fact that their "kit" provides everything needed except the dry ice, that their monthly cost was a bit lower than most (they also did not charge me for pre-chemo shipping/practice time), and to me their elastogel caps with the 3 velcro straps to fit them looked simpler to use than the "origami" style caps that Penguin uses. For what it's worth, the PA at my oncologist's office, who has seen more patients using Penguin, agreed with me, and thought my caps looked nice and snug.
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Elastogelgirl - I was very pleased with Penguin Cold Caps. Maybe your friend could negotiate with them to get the price down. I did not do that but if she gets another quote from someone else, she could see if they would match or reduce their price. There are several options available now and more competition out there. Do you know the number of treatments she will have? Weekly or how often?
I'm officially 5.5 months PFC and the shedding has tapered off now. I've colored my roots twice now with Madison Reed Radiancepermanent color kit. I've finally went on my first trip this year with my family. We had a great time and here is a pic of my hair today. It is a lot thinner but I still have hair!
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MamaFelice, Elastogelgirl & PamBC - you guys look gorgeous! No one would suspect you ladies had chemo!
Elastogel - Penguin does rent "used caps" at $300 per month rather than their "straight from the factory, brand new ones" at $495 per month. They don't say it anywhere on the website (and I didn't know about it in time to ask for it) but several ladies on this thread have asked for and received the discount, including in the past couple months.
The caps are easily cleaned between users, and I would have absolutely no qualms about renting used. knowing the way my caps looked when returned, I think it means there may be some permanent marker that transferred from the storage bags to the caps (we had some partial letters and numbers transfer when we set the caps white side down on the outside of the plastic bag when drying them off and checking the temp).
I am happy to have done the "origami" style cold cap rather than the helmet style caps... I have a small head (easily youth size) and was very worried about a helmet style cap fitting me properly. With Penguin, it is shaped to my head with each application, and I think it can accomodate a variety of sizes more easily .
Willow
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Good morning ladies and thank you for your kind words re my pic! I did surprise my doc, and he was thrilled to see my capping success and overall chemo success. I feel like TC #3 took quite a toll on me, while he thought I kicked #3's a--! Glad to have him on my team! Of course, I washed my hair night before my appointment and my hair was clean, soft and bouncy 😉...rather than dirty, greasy and nappy after 6 days without washing. My head/scalp even starts to hurt at dirty day 5 , and it feels like my hair is begging me to wash it-- that happen to anyone else?
Elastogirl-- my friend just finished 6 rounds of TCHP for ER/PR- HER2+ tumor. She used Artic Cold Caps and was very pleased with her results throughout treatments. In the end, after 3 months PFC shedding, she has lost close to 75% of her hair, but new growth is coming in thick and healthy. 6 treatments is tough. Even though after 3 TC treatments my hair is hanging strong, I still have 3 to go plus PFC shedding... so I figure I will be similar to my friend, but I'm happy with that. You are a poster child for results with ACT!! You look fantastic, and I bet your hair is getting stronger and thicker every day!
Always beautiful Pam! And congrats on 5.5 months PFC! Can't wait to be there too! Thanks for always sharing! 👍🏼
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hi all,
Thank you guys very much for all the advice for my her2 positive friend on her cold cap decisions. She is reading all your posts.
She is worried about the hair fight. She doesn't like the idea of bad hair days for 6-8 months. She is working and a mom. She seems okay about the wig thing. She may still do it.
I told her if she was not 'all in' no matter what the outcome that it might be easier to let it go?
Anyone think that is good or bad advice?
I know I was 'all in' ready to fight! even if it did not work...I wanted to protect my hair follicles. I knew a wig would not work for me. Mine wasn't a true success but I never wore a wig
Hugs to you all!
You got this. This will go by faster than you think. Good hair days are coming I promise!
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I know this sounds silly but to me a bad hair day is better than a no hair day. I also feel I’ll get a head start on growing etc. it was important to me because my younger son who is 11 was very upset that I would have no hair. That was my deal breaker to go ahead and try - I was lucky too I didn’t have to pay for the caps and the dry ice company gave 3 out of the 6 dry ice pellets for free. If your friend decides to go ahead make sure she also asks for a discount at the dry ice company - mine have some for free. I also brought donuts for them one time, a box of Cofee another. The owner told me he currently had 8 women who were capping at the same time as me. Good luck ro your friend on whatever she decides
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I'd agree that you need to be seriously committed to cold capping in order to deal with it, and realistic about the potential outcome.
One factor for me was the small but real possibility of permanent hair loss from Taxotere. I didn't want to be a statistic if there was any chance of avoiding it. And yes, a bad hair day is better than a no hair day. Which is something I remind myself of almost every time I look in the mirror....
Pam - You look fantastic; thanks so much for the encouragement!
MamaFelice - Thanks also for sharing your friend's TCHP results. I'm hoping for 50% thinning rather than 75%, but it's good to be prepared.
My scalp was very itchy yesterday and today (Day 17) was my biggest shed yet - by far. I also seem to have a bit of dandruff, which has never been an issue for me before. Will try Nizoral shampoo to get some control over that.
Having a couple of girlfriends who'll be helping me cap at upcoming chemo sessions over for a "team training" lunch tomorrow. (My husband, who did the first one with me, said, "they better do it right!") Good motivation to finish decorating my tree and do some house cleaning today.
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Thank you everyone for the kind comments! I am so excited that my shedding has really tapered off 5 months PFC. I have to remember i did not shed at all during my 12 weeks of chemo, only after chemo. I’m not finding hair on the floor, rugs, washer and dryer, and on clothes. I was almost afraid to prepare food because I thought other people would find my hair in their food! And my hair is long when it falls out!
Elastogelgirl - it’s very tough guiding others in this decision. I have talked with several people about capping and I don’t want to push them at all. It must be their decision. All you can do is give her the facts, cost, procedure of using caps and the decision is hers to make.
I cheated on showers - I always put my hair in a shower cap dry and took a hot shower to wash my skin, then I would wash my hair with tepid water, not freezing cold water. I also washed my hair twice a week and I never felt it was real dirty.
Good luck with you friend and I wish everyone the best on this site! Saving our hair is a true blessing
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Elastogelgirl- I am HER2 positive and hormone negative. I had 6 rounds of Taxotere, Carboplatin, Herceptin and Perjeta and had excellent success with cold capping. I lost almost no hair during chemo and just began to shed after chemo was over and I was just on the targeted therapy drugs. I have found that the shedding is slowing now and I still have at least 70 - 80 percent of my hair. My hair is very fine. I rented Polar Cold Caps from Florida and they shipped me just about everything I needed. They were easy to strap on tightly and came with 3 extra elastic tightening straps to use to tighten the cap up against your scalp. I have no bald spots anywhere. Tell you friend that if she is diligent at following the rules for cold capping that she will most likely have excellent success on her chemo regimen. My oncologist was very negative about the caps too. He kept telling me that "You will lose most of your hair!" But then I was accepting his apologies around the 4th chemo round when he saw how much hair I had left. It was awesome!
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Pam, you look amazing!!!
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tiger63-
Thank you! Sounds encouraging to say the least!
I'm forwarding your response to my friend.
I'll let you all know what she decides and why.
Hugs all
E
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Tiger73
Do you recommend polar caps? Did you use all six caps? How much dry ice was that? I only used three of my four elastogels but I'm not a raging success either.
Thanks for input. My friend is coming back on board and we are trying to pick the very best caps.
She has very thick dark long hair. Think hair maybe more loss or warm insulated areas?
I was instructed to wet my hair, extr not fun. Again I lost 80 percent.
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Elastogel girl, I would have your friend look into penguin cold caps. They have a patented gel in their caps which chills to a colder temp than the elastogel caps, which means you do not need to wet your hair to get to the correct temp. With thick hair, I think this is especially important, since the hair serves as insulation for the scalp & hair follicles. I have fine hair that had thinned a bit due to menopausal changes, and only needed to get the caps to minus 26-28' C, but those with a lot of thick hair have mentioned goal temps of minus 36' C or so for their caps. Curious what the goal temp is for arctic caps for someone with a lot of thick hair. To my thinking, the colder the caps can get, the better chances of success (plus it'd be nice not to have to deal with wetting the hair and wearing a shower cap, etc).
With their "used cap" rental discount, I believe they are the same price as the elastogel cap rentals from arctic, etc. The caps are a little more work to velcro around the head, but it becomes very routine after a few practices. You may need to use 1 or 2 of the provided velcro straps to tighten the cap firmly to all surfaces of the head (I needed one to keep it firmly against the back of my head near the bottom), but in my opinion, this is much easier to put on/adjust properly and remove than the ace wraps which a lot of folks say they need with the elastogel type caps.
Willow
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hellow willow22
Great advice I passed it along.
My dog says wigs are okay too
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Arctic Cold Caps provides 8 caps in their kit, and recommends 50 lbs of dry ice. The capping process is done with dry hair.
Since there are so many caps, the caps that have been used have plenty of time to get truly cold before they need to be used a second time. We found that the ones pulled out of the cooler were always well below the -25 to -30 degrees F that was the target temperature, so we had to allow 2-3 minutes and do some "molding" to warm them up slightly.
They also supply 3 elastic/velcro straps and a lycra swim cap to get the caps snugly fitted, as well as gloves for handling the dry ice, an infrared thermometer, kitchen timer, a hairband, moleskin and panty liners for protection, hairnets to help hold varied parts at the time of cap changes, a wide tooth comb, and even a satin pillowcase, all packed into a rolling cooler. I would not have even thought to purchase some of these items and appreciated having it all delivered as part of my package. https://arcticcoldcaps.com/services/
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Elastogelgirl- Yes, I would recommend Polar Cold Caps. They were great and they came with just about everything you need to do your cold capping. They come with six caps and I used all 6 usually twice through for a chemo session. They say that you need to start cold capping an hour before chemo, all during chemo and then 3 hours after. I believe they recommend 80 pounds of dry ice....I always bought a bit more because I had my chemo sessions on Monday mornings, so I would have to buy dry ice the day before. I bought a bit more to make sure I had enough in case I had some evaporation due to buying it the day before. We had no problem getting the caps cold enough. They were often colder than they needed to be and we had to warm them up a bit. They recommend -38 degrees for thick hair. I have fine hair and went with -38 degrees to just be sure. Maybe that is why I lost almost no hair while on chemo. With Polar Cold Caps your hair should be dry not wet. They also come with 3 elastic straps to get the caps super tight. They come with a rolling cooler, laser thermometer, electric blanket, mole skin, etc. They are also very good with customer service. I had one cap spring a leak at my 4th chemo....I just called them up and they FedExed a replacement cap to me at no charge.
Hope this is helpful.
Karen
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I so wish I had choices of which cap to use. We only have the Dignicap available and I feel fortunate to be able to try it -- fingers crossed it will work! I have extremely dense hair, so losing half of it probably wouldn't even be noticed - unless, of course, it were to be a clump in the middle. And couldn't I use a "fell" ( I think that is what they are called?), just a comb with hair cascading out of it?
What does anyone do about eyebrows and lashes? It was suggested to me to have feathery tattoos done on my brow line prior to chemo. Not quite sure I would do it. I'm not a fan of tattoo ink.
I know that castor oil is supposed to stimulate hair growth. Has anyone used it on the brows during tx? How about Latisse or some other lash grower? All is fine if my hair stays put or if I get a great wig (btw, anyone know if they can be colored to really match my real hair?. But missing brows and eyelashes are a dead giveaway. Penciled brows, look like, well, penciled brows. I've already gone out and purchased a pair of eyeglasses (don't even need them to see) with frames that cover my brow line but .... from a side angle or with any facial expression it will be visible.
If anyone can give some help of shampoos or tonics or potions to use on my head during tx I'd be most grateful.
edit: Amazing -- a little search and I found most all my answers -- sorry about that. Maybe anyone wanting to comment on tattoo'd brows --- thanks!
Thanks!
Amelia
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Amelia,
I used Essential Eyebrow Solutions and my brows looked great for 90% of chemo. Near the end they thinned but that was easy to cover up and they grew back fast and thick. Google them for info, they did a clinical trial. Nice company to work with. Like Latisse, it is a bit pricy, but worth it in my eyes. I used Latisse after my lashes fell out, I had no information that showed it would help keep them but I have since seen a few women who did keep them while using that. AC is tough though and I am not sure it would have helped. It certainly helped them grow fast and thick, within weeks they were back. I used some eyeshadow and a liner to hide the lashes lost, most people did not notice. (My friends did, but after I pointed it out to them, so they said!)
Good luck!!
Anne
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I used ESS in my eyebrows as well, everyday morning/night and Grande Lashe on my eyebrows starting the last month of chemo -- i may have missed maybe 1-2 sessions.
I was on TC, 4 cycles ...I did not loose my brows or lashes during chemo ... @ 7 weeks PFC my lower lashes fell off -- my uppers are thinning and I suspect I will loose them too ....fingers and toes crossed they hold on
Starting at 6+ weeks PFC my eyebrows thinned lots and keep getting smaller (shorter I guess 'tail's pretty much gone) -- I still have some hairs, however, looks like they are getting thinner and thinner everyday. I had thick eyebrows to start with - -think a young Julia Roberts type.
I ** think ** not sure that my eyebrows may be even be starting to grow back (like the first layer that I lost first, just hard to tell really -- i have a tiny bit of stubble i can see in my 20X magnifier mirror so we will see)
...I am considering microblading to fill in as they grow back -- researching it now. Cause I am going back to work in January and just want to 'healthy' as possible. As for eyelashes - I have some stick on just never used them before so this will be interesting
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Hi, Amelia. I've read several posts here in which women say that they shed brows and/or lashes post chemo and so recommend waiting to use expensive treatments like Latisse until after you've completed your infusions. I am using castor oil during chemo because it's inexpensive and can't hurt.
Went to a Pink Martini concert last night with a friend who will be helping me cold cap at a future session. It was a fun show and I enjoyed getting out to do something celebratory with her, but I was tired by the time I got home.
Had my first Big Shed (BS) when I shampooed yesterday - Day 19 following initial TCHP. It's continuing today but at a slower rate. The hair seems to be coming out from all over and there's no visible difference so far, so that's some comfort. I've just been taking deep breaths and reminding myself that if I hadn't cold capped I would most likely be needing to shave my head by now.
Karen - I plan to cap at colder temps tomorrow (thanks for that tip!) and hope to keep future shedding at lower levels. Your success on the same regimen is super encouraging, so thanks for that too.
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elastogel girl - love your poochie pic - she's rocking that look! What a sweet, patient dog to model wig and shades for you!
travel girl - I have the same eye lash and brow shed pattern as you... I also had 4 rounds of TC, and didn't really notice eye lash or brow loss till about 4 weeks PFC. I'm almost 3 months PFC now, and have some eyebrow hairs beginning to grow back. my brows thinned very evenly, so I used a brow pencil to fill in the skimpy areas and blended with the brush end well. I have bangs, so that helps distract. Nearly all my lower lashes are gone, and my uppers are so sparse and oddly placed, that mascara would make it look worse. I developed an allergy to steri-strips and cloth tape after my margin revision, so I'm assuming false eye lash adhesives would be a problem for me too.
Willow
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hello all. I've been lurking around here since starting chemo (weekly taxol Herceptin perjeta and then bi weekly AC). Yesterday was my taxol #7. Using arctic cold caps. I have not lost much hair as of now.
I need some advise - I am going to a black tie wedding on Saturday and need to do something with this long frizzy mess. I would like to keep it down. Not fan of up do's and it may be to heavy. Hair is THICK with some wave to it. What stying products are safe? Wrapping my hair? Can I use a straightener on the ends safely?? Rollers?
Please Help me feel normal and enjoy myself. I am only 33 and have an 11 month and 4 year old at home and a long journey ahead. I would like one night to feel pretty.
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Hi, Alletan - Congrats on successfully saving your hair! My stylist suggested aloe vera gel as a safe, natural, water soluable way to tame the frizzies. Just apply after washing, comb through and scrunch. I've tried it and it works fairly well.
Have read that others have gently used a flatiron on their ends. You would obviously want to limit pulling as much as possible.
I'm sure others will chime in with further suggestions. Have a wonderful time at the wedding; what fun to go to a formal event around the holidays!
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Hi all,
So my friend got polar caps. She is having trouble with the Velcro getting stuck in her hair.
And The chin strap hurts.
Comments?
She starts tomorrow.
Thanks e
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tiger 63- did you wait to cap while you were reciveing herceptin and prejeta? Then start capping and hour before taxotere and carplatin?
I forget which caps you used..
My friend starts tomorrow. Polar caps. Velcro problem
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