Topic: Cold Cap Users Past and Present, to Save Hair

Dec 14, 2017 06:51AM - edited Dec 14, 2017 06:53AM by Elastogelgirl

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

Dec 14, 2017 07:54AM Travel_Girl wrote:

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.

Dec 14, 2017 10:20AM - edited Dec 14, 2017 10:45AM by Magari

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.

Dec 14, 2017 01:09PM Willow22 wrote:

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

Dec 15, 2017 01:36AM Elastogelgirl wrote:

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!

Dec 15, 2017 02:23AM Magari wrote:

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.

Dec 16, 2017 01:33AM - edited Dec 16, 2017 01:34AM by tigger73

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!

Dec 16, 2017 08:13AM Elastogelgirl wrote:

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

Dec 16, 2017 09:02AM Willow22 wrote:

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

Dec 16, 2017 11:25AM - edited Dec 16, 2017 11:32AM by Magari

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/

Dec 16, 2017 07:32PM - edited Dec 16, 2017 07:40PM by Amelia01

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

Dec 18, 2017 04:29AM Travel_Girl wrote:

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 :).

Dec 18, 2017 06:15AM Willow22 wrote:

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

Dec 21, 2017 02:08AM Magari wrote:

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!

Dec 22, 2017 01:05PM Elastogelgirl wrote:

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