Cold Caps Users Past and Present, to Save Hair
Comments
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Dancetrancer, i colored my hair semi permanent 3 weeks after chemo, and i highlighted 6 weeks after chemo, it was fine on me. I also blowed dried and used a straightener, durning chemo, i could not stand it . I was carful not to pull from the roots. Im NOT saying to do this, but to be honest, i had no problem, a friend did the same and had no problem as well.
Chey
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Wow cheyanna - you highlighted 6 weeks PFC with no issues? Awesome. Yep, at 4 months PFC I couldn't take not using a blowdryer anymore so started using it on the low warm setting. And just recently started using the styling brush when blowdrying. So far, so good, and my hair looks so much better when styled!!!
I got scared when I did some googling and read about some women's hair turning orange when they highlighted too soon after chemo. I may have them do a test strand the week before, just to be extra cautious. I'm going to a highschool reunion and certainly can't go with orange hair! Eeeks!
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I just ordered my dry ice! They had pellets and blocks so I got two 40 pound boxes of pellets.....is that what you guys who used pellets did?
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OK everyone....Pellets or ice blocks??????? I think I can switch but right now I have 80 # pellets ordered for 8 caps. Geralyn from PCC said blocks are better. I thought the pellets were easier to work with. Dont want to mess this up.....HELP!
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I wish I could help....I used a freezer. Anyone have advice on dry ice?????????????
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We used pellets - put them in 32 heavy zip lock bags (that we left open) in 2 igloo coolers. We used 72 lbs of dry ice for 8 caps. My supplier lets me return the unused dry ice - which was 30# the next day. Make sure you have your infrared thermometer.
Good luck!
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schoolmom-the blocks last longer because there is less surface area(something I remember from chemistry class
) If you are using the coolers I recommened(60 quart Igloo Ice Cube) you can fit 1 1/2 blocks in the bottom of each cooler. The rest can be either pellets or chunks you have made from crushing up block ice to 1/2 inch to 1 inch chunks. The crushed chunk ice works better when trying to fit it in the cooler. When only blocks are used sometimes they are so thick that the lids of coolers don't shut properly. I would also advise 100 lbs.- especially for your first chemo. Better to have a bit more than not enough in this situation. I put the ice, wheter crushed or solid block into 2 1/2 gallon Hefty zip bags. I close the zip halfway. Then put it into another zip bag with the zip in the opposite direction and close that one halfway. This ensures that the ice is contained and doesn't fall out into the cooler. It also much easier to handle.0 -
great idea about double bagging. thanks makingway. I was thinking 60 pounds of solid and 40 pounds of pellets for packing in cracks. going to talk to geralyn in a bit and confirm.
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Got the caps in yesterday - chemo starts tomorrow...practicing this evening.... the temp in my home freezer puts the caps at -11 Celcius and we are picking up the dry ice this afternoon - it should last yes????? Good luck School Marm
Diagnosed : 8/31/2012
Stage 1b, no node involvement, grade 3, estrogen positive, progesterone negatice HER +1
Lumpectomy 11/14/2012
Oncotype DX - 31
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Good luck dalestc and school mom. Right now I am finishing up my 7th of 12 treatments, got two more hours of caps to go. My helpers are experts now - it becomes old hat quickly. Everything is going great for me - 41 days in and no hair loss at all!
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schoolmom-Geralyn doesn't change caps. She ships and receives caps for the Penguin Co. The information she provides to Penguin cold cap users was provided by myself to Frank Fronda-inventor of the caps. I have revised the instructions to make the process as simple as possible. Unfortunately this information has not been updated within the Penguin Co. I will post it on my website later http://www.penguincoldcap.net/
dalestc-The ice should last if you keep it packed as tight as possible overnight. Don't allow any air space i.e, use towels to fill empty air space in coolers. Keep it in a cool dark place such as the garage.
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Wow - using Penguin Caps sounds like a logistical nightmare! I think I will be using the Paxman Cooling system and hope it's not as complicated!
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makingway.....Geralyn was a (successful) cold cap user...before many of us joined this site...she has personal and useful info to share as you do. She was wonderful to me and helped me through the whole process...
I used a mixture of slabs and pellets and I liked the pellets better. They were easier and less cumbersome to use. I put slabs on the bottom of the coolers and pellets in ziplocs around the plastic containers. A few times the caps were not cold enough and my helpers would double bag the caps in ziplocs for 5-10 minutes with the white side out on top of the coolers to get them cold enough.
Best to all, lisa0 -
I have to agree.
Geralyn was one of the first ladies to help me with my questions here on BC.org
She had just finished using them when I first started...very helpful.
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Lmflynn, Ang7-I know Geralyn well. She is very helpful! If you go back to the very beginning of this thread you will find Geralyn, myself, and the 1st woman I helped-Newport Lori on it's first pages. Geralyn went on to become the distributor of the Penguin caps. I went in another direction-I helped people change their caps-many of them.
I did this for 2 years as a volunteer to help spread the word of the cold caps. I've shared my experiences and suggestions with both her and Frank. In turn they've shared this information with new Penguin cold cap users.
There are many questions new users have, answers not often easily found. Geralyn is quicker at responding to questions than the administrators of the Penguin cold cap users forum (the link can be found on MSC's website).
I know how hard it is to find answers to the questions people may have. I post here, and respond to private messages as often as I can.
The answers I provide are based on a lot of experience. I know which of the patients I've helped are following the protcol-how often they're washing their hair, with what, if they blow dry their hair, highlight or even cut it. I have helped over 35 women change their caps during their chemo treatments. Multiply that times 4-6 treatments-I have changed @ 1800 caps! One person who has used the cold caps once is not an equal comparison.
BTW Lmflynn-I have also used the cap in a bag method to re-freeze the caps, which the Penguin Co. is adamantly against doing. They are worried that the caps will be damaged. I'm more worried that the woman I'm helping keep her hair... And, I've never damaged a cap doing this.They now instruct all users that caps must be kept in their plastic boxes when on dry ice.0 -
Thank you all for these great posts. I definitely want to try the PCCs but start chemo soon, next week. i filled out the form online with my cradit card info.
Logistically what is the next step to hurry a shipment? i saw some of you refer to Geralyn the distributor, does anyone know her email address or phone number?
It is a scary time and the thought of saving some of my hair is really helping me get through things, so thank you all so much. I am just worried that i found out about the caps too late to get them, this is all new to me!0 -
ScienceGal - here's Geralyn's contact info:
Geralyn M. Pewarchie
Agent for The Penguin Cold Caps
Phone: 810-359-5257
Cell: 810-841-6613
geralyn@talkamerica.net <mailto:geralyn@talkamerica.net>0 -
makingway - you sound like an angel!
What I'm wondering is what is the best way to wash hair to reduce the amount that comes out. Would it be a good idea to wash it in the bath and lie down while swishing my head around in the water, that way I don't have to touch it so much? I'm worried water pressure from a shower head may be too harsh. I can see this whole experience is going to be stressful!0 -
She helped me organize and get caps within a week also. It can be done.Michelej19 - As I understand it, a direct stream of high pressure water on your hair during chemo is not good, so a shower might not be the best thing you could do. I used a hand held bath tub spray on the gentlest possible stream setting and because the water is supposed to be cool I could set the stream fairly low and get a gentle spray. By doing so, I was able to pretty much keep the cool/cold water off the rest of me.I have also used the hand sprayer on the kitchen sink at times, using a small amount of water to help regulate the pressure down to gentle.Lately I have been using the tub spout. I kneel in the tub, or outside of it and lean over, and use my hand to deflect the spout's water onto my head in a gentle flow across my hair, but I am three months post final chemo.0
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I washed my hair bent over the tub. The less I turned the water on, the less pressure there was. I used something similar to this:
http://www.walmart.com/ip/Waxman-7510000B-Spray-Sensations-Bathtub-Spray-Hose/21799285com
I tried to gently comb through hair with a hair pick before I washed it. I washed in cold water. I used Burts Bees Shampoo/conditioner and mid chemo switched to Organix Shampoo and conditioner. When I would wash, I put a little shampoo on my hand and patted it around one area of my head. I repeated in other areas with minimal shampoo. I rinsed with the handheld shower and it made it very easy to get the soap out without a lot of pressure on my hair. I hope that helps. I remember how scared I was when I started chemo - but I kept my hair. Have faith...take a deep breath. It will be ok and we will keep reminding you of that through this whole thing.
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Thanks both for your advice. I'm dreading it! It'll be 6 months+ of 'will it or won't it fall out'?
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Hi Michelle,
I'm in the midst (2/4 treatments done!) and have used the advice of others. I either use a hand held sprayer or turn my shower down to minimal (and cool). I mix the shampoo in my hand and dissolve the bubbles in ~1/2 c. of cool water. I pat the mixture on my wet hair and just let it soak while I shower, then turn the water back to low and cool to rinse.
I still get more shedding than on the days when I don't shampoo but it seems OK. Others have also talked about using cool/cold rinses during the days they don't shampoo. Might be nice to hear from those folks - did you do it every day? a couple of times a week? results?
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301724 - I do rinse my hair in the shower probably every other day, in cool water and low volume. That's technically a no-no according to the PCC rep here - she wanted me just to spritz water on my hair if I wanted to wet it. But I have had essentially no shedding and I'm at day 43 (completed 7 of 12 weekly taxol treatments as of yesterday). Just yesterday and today for the first time I've noticed an occasional hair falling out. So I am bending the rules just a bit. I go to the gym 3 or 4 mornings a week, and feel the need to rinse the hair before going to work since my head sweats a lot.
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Thanks 301724. How about brushing/combing?
How long after finishing treatment is your hair considered 'safe' from the effects? I don't want to get through it all and lose it at the end! Is it a good idea to wear a hat in bed?0 -
michellej19, NO, don't wear a hat in bed, that will heat up your head. Use a silk pillowcase. The scariest part is the beginning. As time goes by, and you still have hair, you will start to feel less and less anxious, thank goodness
Sciencegal, I postponed my chemo for a week. Maybe that is an option for you if you cannot get the caps in time.
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Michelle,
Comb minimally with a wide-tooth comb. If your hair is long and/or if it's tangled at all, hold it gently and don't pull on it. No brushes, I believe. I pretty much comb my hair as little as possible - once in the AM and maybe once more in the evening.
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PatinMN - that's interesting that they told you not to rinse. I believe earlier posters - Susan? Others? - talked about the value of a regular or daily cool rinse. Anyone know for sure?
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301724, I think Susan rinsed because she swam everyday. None of my instructions every mentioned daily rinsing.
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Hi girls, the cold water is good for your hair, i showered,rinsed and or washed my hair everyday,Cold water, you want to be easy on your hair but what your going to shed, you are going to shed no matter what you do! its the old weaker strands that are shedding, remember we normally lose about 150 to 200 strands a day when we are not on chemo! The cold water is just better for your hair as Frank Fronda taught me. I admit i used a lot of warm water on my head while on chemo, i had 16 treatments...A/C x 4 Taxol x 12, i wore a wig a lot,as my work had no idea i was on chemo, and my own hair looked really bad, i had a lot of breakage half way down my long strands of hair do to highlights most every 6 weeks since i was in my early 20's. lol..Ok so, i used all natural shampoo and condition, you don't want any chemicals on your scalp!!!!!! because it can get in the hair follicle and reach the hair bulb, and the hair papillae. If that happens its possible for the chemo to bind to the chemicals that seeped into your hair follicles. The Pcc's and extreme cold keep your hair follicles in somewhat of a sleep so the chemo by passes those important things down in that follicle that give us hair.. Its whats in the hair follicle (thats in your scalp) that is so precious!!! ... Frank Fronda told me, " think of the eskimos in Alaska and how strong and thick their hair is due to extreme cold" heat is not good for your hair!! Take Silica gel caps or liquid drops, specially if your on Taxotere. A/C is the strongest hair killer, but it does not kill the natural silica (mineral that your body produces )that is so important in hair thickness and growth!!! Taxotere kills the natural silica!!!! as we age we produce less and less of the natural mineral silica and (we all have seen older people) our hair will start thinning and fall out. Its important to replace what has been killed by the Taxotere.... i hope this helps a bit. ? Remember, you will save your hair, and you dont have cancer anymore!!!
Chey</p>0 -
I only washed my hair every week. I did not rinse with water in between washes. I only combed through my hair with a pick once a day. I did workout daily and I would sweat but I did not worry much about my look because I did not work during chemo.
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