Cold Caps Users Past and Present, to Save Hair
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MichCali--Many on this site use Latisse to help with eyelash regrowth. A few pages back Luvmyys posted a beautiful photo of her eyelashes after using Latisse. After seeing her photo, I asked my MO for a prescription. Her nurse told me not to expect it to be covered, but my insurance did cover it, so I only paid a $15 copay for a six week supply. Otherwise I think it is $100-!50. I can already detect re-growth, after almost all gone two weeks ago
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Vivianlu8--My hair is naturally curly/frizzy which I always tamed with hot blow dry and flat iron. So now that I am sporting a "natural" look, I use a dilution of Aveda Smooth infusion nourishing style Creme. It calms the frizzes for me. I have shoulder length hair.It would be against Penguin protocol to use any hair product, but I started using this about halfway through my 12 weekly taxol, noting no difference in shedding. Hope this helps
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Fastgirl, I'm the same as you. I have curly frizzy hair but have always blow dried and straightened. i was about to get a keriten treatment just before I was diagnosed. Glad I didn't have it. I'm getting frustrated with all the shedding (2nd treatment of TC tomorrow) and the frizziness. I've been using the HONEST products and think I need to experiment a little more with how much conditioner I am using. Since I'm not washing so often it's hard to figure out what the right "recipe" is.
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ykh - I ice for 15 minutes before the chemo goes in then during and 15 after that's the info I kinda gathered from the taxol board!
I bought the gloves off Amazon 2 pairs so I can switch them and I bought these socks that had gel packs in them so far so good! No neuropathy so far and my nails have not turned black I also went to the salon and did the nail polishes that go under the heat lamps someone said that's helps to protect
I see some people just held their hands in ice or held frozen peas or just wrapped their feet in frozen peas
I just put the mitts in with the dry ice the socks were not as good as the gloves at holding cold but they seem to have worked so fa
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thank you PatinMN! Really appreciate your reply
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Does anyone use a satin sleep cap ? Is it allowed instead of the satin pillow case?
Other question the latisse is when you finish the treatment ? The castor oil is for the same reason for the regrow of the eyelashes?
Where did you get the deodorant without aluminum?
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VivianLu8: I'm not sure about the sleep cap. But, I found the satin pillowcase made me hot. I purchased a silk pillowcase and I love it. Latisse has some side effects (one of which it could possibly change your eye color-I have blue eyes and don't want to take that risk so I won't be using it). There are a bunch of deodorants without aluminum: Trader Joe's, Tom's, Native, Crystal Essense. Don't purchase antiperspirant. Many can be purchased at Whole Foods or on Amazon.
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MJPow - how often do you need to change the mittens and socks? I am not sure if I should spend another $100-150 on these, or just use ice or frozen peas...
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hi all,
I did ACT with Dose dense taxol every two weeks. Taxol x 4
About icing of hands and feet. I hand the elastogel mitts for both. It was excruciating to endure the hands and feet, much harder than the head.
I kept kicking the feet mitts off and my helpers were reluctant to force them on me. I constantly dipped my fingers in and out of the cold mitts. We measured my fingertips and toes at around 57f-66f so pretty cold.
My thumbs and toes did not get as much icing as my fingers....as a result my toes burn and hurt, a lot. my last chemo was march 23. My thumb nails are half dislodged and discoloured. My finger nails, which I kept the coldest, are not so discoulored nor do they hurt or tingle like my feet. I am a bit more clumsy dropping things with my fingers.
So my advice to all here is ICE ice ice the fingers toes and thumbs! It is something you have control over. I wish I had iced more and longer.
Praying for my feet to stop burning at some point.
One more note. I used coband around my finger tips to keep the blood out. I used compression socks on the feet. Not sure but I think it helped.
Good luck everyone! Hugs, you got this!
E
Ps
My hair, ACT, was not a complete success super scraggly thin. I balded on top but I used toppik and never wore a wig. Not wearing a wig is a good thing because of the hot flashes! A wig would have made me crazy! I broke a lot of the rules by wearing hats scarves and helmets. I also did Dr Longo's starvation before chemo diet which my have been hard in the hair.
At 10 weeks PFC out I've got almost an inch of fuzzy salt and pepper hair coming in under my blond all over. beginning of a super mullet! My eyebrows and lashes are back full force only lost them once and it was all lost PFC. I'm a viviscal believer! I buy it at CVS since Amazon has some counterfieter reviews....
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New pics - 6+ weeks PFC, just washed, no Toppik on.
Mirror image of the back. Might be hard to see, but the back is so scraggly and uneven. Lovely bald spots on the top and back. Alarming, yet Toppik will help me ride this out. My eyebrows - not sure if they are coming or going, but here they are without makeup on them. Elf makes eyebrow coloring that is super cheap $3 and extremely effective.
Horrible flakes of caked on corn starch - my biggest mistake. Not even sure if powder would have worked better. I am slowly working on removing it by applying castor oil on it and weekly washes. It will take some time.
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yhk- I'd just use the frozen peas. I read people put them inside gloves or wrapped ace bandages around their feet. I change the gloves when they start to dethaw which seems about 20-25 min. I wish I had one more pair of each might bring some peas too next time!!
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goKale - thank you for posting your pictures. It's always helpful to know what to expect. Sorry to hear about the cornstarch. I purchased a "100% Pure" burdock and neem healthy scalp shampoo. My scalp feels cleaner and doesn't itch since I used it last Friday. I hope your hair grows back soon and very full.
Yhk - I put somewhat thin socks on hands and feet and held small bottles of frozen water, withmy hands, during infusion. For my feet I used a small bottle and a medium bottle of frozen water inside a lunch bag, then put my feet inside to keep them cold.
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vivianlu8 - I use a silk pillowcase and works out great. I purchased a silk cap and use it under my plastic cap when I am taking a shower. It might not be a good idea to wear a silk cap at night, as it might keep your scalp warm, just like a silk scarf would. Penguin caps does not recommend using scarfs
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I am almost ready to return my Penguin Cold Caps. I am in California and they are going to Michigan. It's 14 caps plus 8 gel bands. Pretty heavy. Does anyone have suggestions on which carrier is more reasonable? It's a big box. Thanks
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Cali58--We shipped my Penguin caps in the cooler they sent to us via UPS. I only had 4 caps and 4 headbands. Anyway, ground from Atlanta to Michigan was a two day delivery and with insurance, cost approximately $70 at the UPS Store. So it was bulky, but not nearly as heavy as yours. In any event, much cheaper than the $230 they charged to sent them to me.
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GoKale--thanks for posting your photos! My apologies I can't remember your chemo regimen, but I do recall it was much harsher than mine. And, yay, you still have lots of hair!!!! The Toppix is awesome. We are at the same point PFC. I am still shedding at the same rate I was during chemo; I think you said yours had stopped, so I'm sure the next step will be new growth!
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Fastgirl- thanks for the latisse suggestion. I also have tried the Aveda smooth creme and found it helpful to calm my frizzy thin hair.
Vivianlu8--- I found Real Purity --- aluminum free deodorant at Whole Foods. Also on Amazon.
Best to everyone!!
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thanks for responding, fastgirl. It's weird that they sent you only 4 caps and I got 14. They didn't send me a cooler. They charged me about the same $230) for shipping
Ontario, CA.0 -
Cali--I can't believe they sent you 14 caps!! Did your instructions show 14? Mine showed how to stack and rotate the 4 they sent plus the cooler was included. I agree with fastgirl--mine cost way more to ship here than back. Weird. I received 4 caps and 4 gel bands.
GoKale--I see you have the compression sleeve, how's the lymphedema going? Mine is 90% gone but with this warmer weather, it's gets worse by evening. I'm still doing lymph drainage massage every night and only wear my sleeve to exercise.
Vivian--Latisse is for afterwards. I used it all during chemo and still lost all my lashes. I out Castor Oil on brows/lashes until the lashes got filled in for a few weeks then switched to latisse.
I use Tom's deodorant and am not thrilled. Can we not use an antiperspirant? Toms keeps me from smelling but not sweating. Who likes theirs?
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Pamela23 - I can't believe everyone gets 4 caps and I got 14!!! No wonder why my rep told me to put them in my freezer. There is no way I can fit 14 caps and 8 bands in my freezer. I had to purchase a freezer for caps only. Also, i didn't get a cooler like you did. They arrived in plastic boxes packed In a large cardboard box. They came from Ontario, ca and I live in California too. My penguin assistant hasn't mentioned that I got too many. There is another lady at my treatment facility and she also has 4.
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hi i received 4 caps and 4 gelbands as well last friday. I start tomorrow my schedule is going to be like 8 hours, alot of work for my dear husband. I hope it is worth it. Pamela coyld i use a net in my hair under the cap ? I have long hair and it is very difficult to fix the caps with the hair? I am not sure where to put the gelbands, did you use it?
Thanks for the tip
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You need 14 caps if you have a medical freezer because they can't be reused on the day. Penguin must have been confused, Cali.
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hi i received 4 caps and 4 gelbands as well last friday. I start tomorrow my schedule is going to be like 8 hours, alot of work for my dear husband. I hope it is worth it. Pamela coyld i use a net in my hair under the cap ? I have long hair and it is very difficult to fix the caps with the hair? I am not sure where to put the gelbands, did you use it?
Thanks for the tip
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Another question did you take the silica that the penguin said you have to.? Does your Oncologist said it's ok. Mine haven't heard about that. !
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Vivian- I put the gel bands on the back of the cap by my hairline and wrapped it by the hairline on my ears sometimes the cap does not pull down to your hairline. The straps were never as cold but I believe they help.
I used a hair net on my hair to prevent it from getting pulled out works great
I never used the silica my oncologist said no
Pamela- I agree with the toms!! I can't stand the smell either I think I associate it with chemo! Even my shampoo and conditioner I am going to throw in the burn pile when I'm done with this lol
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PatinMN- my facility has a medical freezer. That explains why I got 14.
Vivianlu8 - my PCC assistant uses a hair net. He uses pantyliners on my forehead and ears to cover all parts of the skin that has contact with the cap gel. A neck pillow would be very useful. Dress warm. I Take my Ugg boots to keep my feet warm. Take an electric blanket if you have one. The chin strap gets pretty tight and hurts. You may want to use a small towel to put it between the strap and your chin/neck. I have been taking silica. I have read that you shouldn't take antioxidants while on chemo, but silica isn't
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Vivian--I didn't use a hair net. My theory has been to keep the hair down because the less thickness, the more the cold gets to the actual follicles. Some women said they combed theres back. I kept a middle part and was just careful taking them off in between changes so it wouldn't stick. I kinda peeled them off instead of pulling them straight up. I never got a bald spot on top of my head. The gels go around your hair line, which mine still disappeared. Good tip on using an old rag between your chin & the strap. I also opened my mouth when my husband put them on so it wasn't so tight to I'd start getting a headache. Plus I wanted to be able to drink my bottle of water every 1/2 hour. Hydrate!!
Cali has some good points with the neck pillow and electric blanket.
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I wanted to give you ladies an update! I'm on round 13 of taxol/carboplatin. I feel like I've lost about 10% of my hair. I can definitely tell and the shedding is alarming at times, but my hair still feels really thick. No one can tell at all. Most of my shedding seems to be at the very front of my hairline. My part has widened slightly. Here was a picture from this weekend.
I have been happy so far with the results. I have 6 more rounds so I'm going to try to be super vigilant. I would confirm that weekly taxol garners the best results with the cold cap
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You look amazing sherry!!
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HapB, if you can possibly postpone your chemo until you get your caps, you should do so. I know others who decided to use cold caps at the last minute did postpone their first chemo by a few days or a week until their caps arrived, and it was not a big deal. I believe you will be getting weekly taxol and herceptin, right? It's impossible to know for sure what would happen if you have one treatment without using cold caps, but at best I would think you would lose a lot more hair than you would otherwise. One treatment of taxotere or adriamycin causes people who don't cold cap to lose all their hair. One weekly taxol treatment is less "harsh" than taxotere and adriamycin, but I wouldn't take the chance if I wanted to save my hair.
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