Cold Caps Users Past and Present, to Save Hair
Comments
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Thank you all for your kindness during my melodramatic meltdown. I think waiting for all the chemo plan and what to come is terrible. Like maybe once I sit down in my chemo chair with the damn cap strapped down I will start to feel a little calmer because things will be going forward (until the first shed, of course).
You all said it exactly right. Thank you so much. Yes barremom - we will do this!
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Hi Ladies,
I wish I had better news, but my shedding has really ramped up and hairs are coming out by the hundreds. I washed my hair last night, which always guarantees a huge shed, but it won't let up at all, I've been bagging hair all morning. For every hanging hair I grab, at least 10 come out with it. Still, there are no bald spots, seems to be shedding evenly. The very back of the part of my hair looks very wide, but it may just be like a cowlick. I'm hanging in there though, just trying to have faith that the heavy shedding will stop, especially since there's nothing I can do about it. My hair is very fine so that's not helping my psyche either, it will look very thin, very fast. *sigh*
I'm attaching a pic of the last six days for everyone's reference...I hope this works (first time trying to add a pic). These are full size sandwich bags.
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KPM I had this much shedding too during the period you are in- peak shed time- and kept enough of my hair that I never needed a head cover, just used toppik fibers to cover the wider part. The avatar pic was taken on day 53, I didnt lose much more after that.
I was sure the caps weren't going to work but they did. No one knew what I was going through- which was my goal. and now those hairs that were lost to the baggies have grown in wavy and thick- I think the caps helped with the rapid regrowth too. It used to be pretty thin, straight and limp.
Hang in there! It is so stressful right now, but I am hoping for the best for you. Thanks for showing everyone on here what happens. very graphic.
Deeeeeeep breaths.
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Thanks for the words of wisdom Sciencegal. This is soooo hard mentally.
Two more questions for the veterans:
1) I've noticed that none of my hairs that have shed have a little white bulb at the end (is that the follicle?) like a hair that I might have pulled out purposely in the past would have had. Does that mean anything? Are these old, dead hairs?
2) How do you go out in public with the heavy shedding? I feel like Pigpen from Peanuts, just with a cloud of hair behind me instead of dust. I've been putting my hair in a very loose ponytail to try to contain the falling hairs, but I hate to even do that because I'm afraid even more will come out with the scrunchie.
Thanks!!
Kelly
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I pulled mine into a ponytail with a very lightweight claw clip, it just opened and closed gently around the hair and held it back. I also sometimes used a silky scarf rolled up into a headband and tied under the hair, kept it off the face on the"unwashed" days.
Neither of those things seemed to pull out any more hairs. I was always worried about clips and scrunchies and ponytail holders.
The white bulb that comes out is just keratin and oil and stuff, it isnt like a flower bulb. the hair follicle and bulge region from which a new hair will sprout stays behind.
With the penguin caps I had little fuzzy hairs growing back in during chemo. That was reassuring that the hair follicles hadnt really been damaged too badly.
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Hi kp,
My shedding was also similar to what you're seeing. My hair is fine, too, but it all worked out and no one knew I was going through chemo. i did have a sad looking ombre style for some months, but I mostly wore it back in a nice low barrette after treatment. During, I used tiny claw clips to gently pull back the sides - one so I would stop pulling at the loose hairs and two to make it look a bit more presentable when I went out. It's funny because i became a bit obsessed looking at every woman's hair and there were actually a lot that were much thinner then mine, and they weren't in chemo (or maybe they were
) I think you'll do well, keep the faith! This is my 2 week pfc picture, so thin to me, but you'd not be able to tell.
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Great picture Hope!!
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NJ cappers - where did you get dry ice? I'm in monmouth county and I just got a quote from a place - $5 a pound!!! I told him what it was for and that was his best price. I'll be paying as much for the dry ice as the caps at that point!! Any advice is helpful. Thanks!
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Hi Daniella- I just spoke with PCC regarding my treatment and asked about the dry ice for you. They said it should run under $1.00 per pound. They've never heard of a charge as high as your quote. They said to Look for a distributor not a retailer perhaps that will make a difference? Let me know us know how you make out
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daniella,
This is a dry ice distributor that has locations around the country - try this search page to see if there is one near you. You should not have to pay that much. That's a rip off! It's usually $1/# or less if you buy larger amounts...and several have received it free when sharing the purpose.
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Thanks Barremom for looking out! I felt like I was being price gauged by the damn distributor - like the way people selling generators took advantage during Sandy! When do you start treatment? I'm still in "waiting to meet MO and get plan" hell.
Dancetrancer - I'll check out the link. Can you imagine?! $5 a lb! And I explained why I need the ice and still he hits me with $5 lb. Ugh...as my Russian friend would say, "let him be healthy"
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Daniella- What a coincidence... I'm still in "waiting to meet MO and get plan" hell also! Meeting this Thursday and hoping to move forward with 1st round by the end of month! Would like to be done and feel good for Xmas right??
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Here in Manhattan...one seller was charging $2/lb but that was with delivery. I'm paying $1/lb,
Check your local supermarket....they might sell it. Also look up restuarant suppliers....restaurants buy dry ice. Maybe one of your local restaurants can order it for you....to get their price.
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hi everyone! I just finished my last chemo today and after 4 AC and 4 taxotere/carboplatin I still have all my hair! Cold caps really do work!! I will post a picture this weekend after I shower! Anyone that has any questions please contact me! I would love to help!
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Diove - Did you lose hair? How much after all 8 treatment? I'm 6 days past my 2nd treatment of Taxotere/Carbo and I feel like I've lost quite a bit already. Today was my worst day...prob 300-400 hairs. I was losing 80-150. Wondering what shampoo/conditioner you used? Or if you iced more not just on chemo days.
Any advice would be appreciated!!!
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Dlove your hair looks amazing! I have similar hair and am concerned with de tangling. How did you wear your hair during the day? Night? How did you shampoo? I think you must have an amazing technique down (and some damn strong hair!) congratulations!! Pass on your tips when you have a chance! So happy for you!
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YAY, Dlove, you are DONE!!!! So happy for you - you are now officially 'pfc', welcome to the other side! And you had the harsher treatment, too. It's been great lately to see so many cappers doing AC/T and making it through with their hair. Very encouraging for the newbies. Can't wait to see the pictures. your avatar looks wonderful.
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Hey I haven't been here for a while, just went through a few pages, to Dlove and others who finished, big congratulations!!
Mdg, I really like your post, you said it well. For me a lot of it is about privacy and dignity, and also trying to reduce how much treatment controls my life. And maybe there's a component of vanity to that, but I think that's reasonable. I find it curious how some people understand that right away and others just don't. I still remember one person saying "but there are some nice things you can do with scarves." And with due respect to our sisters who didn't do cold caps, I have seen some scarves worn very gracefully. But it's not for me. Maybe I'm not strong enough for the world to know my diagnosis. So be it.
But on a different note just had to share a big milestone I had Friday because I'm feeling so much better for it - I got my first post-chemo haircut! And it looks nice!! I'm ~10 weeks PFC. So during chemo I had a Lot of shedding, and my hair was visibly much thinner. I honestly wouldn't have been a good poster child for the caps. I used to have my hair down to just below my shoulders, but there was only a small amount left at that length. Now after hacking off about 5-6 inches it's just above my shoulders. It's much fuller and looks more "normal." And with all that life is starting to feel more normal too (in spite of a couple lingering SE's). There's progress. So I want to pass that on especially to those of you going through treatment. I found treatment pretty hard, but with time I believe it does get better.
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Have any of you thought or actually used apple cider vinegar to rinse your hair? It is a natural conditioner and doesn't clog the follicle. I am going to do some research and see if its an alternative to going with dry hair.
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Hi ladies,
I worry that this is already posted, but does anyone have a shopping list of what you need for the cold caps? I was going to have a mx Monday with chemo weeks later but all was changed this week due to mets and I'm starting chemo on Friday so I'm rushing to get everything in place. The caps are on their way and I've ordered the dry ice. Any suggestions on size of coolers, thermometers, etc?
Thanks all!
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harrysmom - I'm just preparing myself even though I'm a few weeks away (or more). Here's my list for that day:
Moleskin for the forehead
Panty liners for the ears
Frozen peas to use during taxotare (if that's what you're having)
Electric blanket
Extra Velcro wraps just in case
Thermometer - go on amazon bafx infrared
Nail hardener
Hairnets
Pick or comb to keep moving with each cap change
60 quart ice cooler
Dry ice
* Line in between ice blocks with newspaper
Some kind of gloves - gardener or leather to manipulate ice
Biotene or baking soda/salt water to rinse mouth during
Ativan, pain meds, Tylenol whatever to get you through it
Big bag to carry all this stuff
Strong will and support of everyone here (no bag necessary)
Practice practice practice (not sure which video to watch that is the best. The pcc one is long!)
Experienced cappers please chime in and add what I am missing! Good luck! Rooting for you!
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Hi Harrysmom- I am also preparing for cold caps (within the next two weeks MO appt tomorrow). When I called Penguin they recommended Igloo 60 quart with wheels and handles. They said it runs about $20.00 and can be found at Walgreens and other large retailers. Perhaps some veterans can offer other options and also some ways to best pack chest.
Best of luck to you
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Daniella- You are SO organized! Thanks so much-I will be adding to my bag because of your list..
Questions: 1.) This is the first I heard of hairnets, whats that for?
2.) pick to keep hair moving? I didn't know that was part of process...I am behind
3.) Whats the biotene or baking soda rinse for ?
Did you find your dry ice for a better price??
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I haven't purchased everything yet. I've been diligently trying to reread the entire thread to get prepared -materially and mentally. JennLiza mentioned hairnets to keep hair out of Velcro straps.
Yes, you have to keep changing your part to avoid frostbite. Wipe out the condensation before putting on, too.
The biotene and/or baking soda/salt water rinse is to ward off mouth sores. I read one woman that made a bunch of little Dixie cups with the mixture, then just added water when she went for chemo. Another thing I read was a benedryl liquid maalox mix to ward off sores but I forget where I read that one.
Drink 4 oz every 15 mins someone said but I think I would need the nurse to give me a catheter because I would be in the bathroom the entire time.
I know I'm missing stuff. How about the shampoo? I started dermorganic shampoo and conditioner but the shampoo is conditioning type (creamy not clear). Is that a no-no? I like the apple cider vinegar rinse and would love to hear comments on it.
What are we missing?
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Hi ladies, that is a great list and the only thing I could add would be some type of inexpensive kitchen timer to keep track of when to change caps. Good luck!
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I drank a LOT of water and by the 2nd hour or so of treatment day i was going to the bathroom after every cap change! I also always had to have a potty stop on the way home. I really think all the water added to my cap success.
At the suggestion of my Penguin rep I brought a neck pillow to each session, and it really helped with comfort in the chair. The caps aren't really heavy, but do add strain on your neck, and the neck pillow was great.
I know some people used apple cider vinegar when they started getting large flakes - build-up of some sort - on their scalp. That only happened to me in a very minor way so I didn't try it. But your product containing apple cider vinegar would probably be helpful in preventing the build up of crud. :-)
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Wow! I would not have thought of half of these items. Thanks ladies!!
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I'm not sure if it was clear from some of the previous emails, but you will need 2 60-gallon cooler chests (4 caps fit in each one, along with the dry ice). Penguin recommends the Igloo Ice Cube Roller Coolers, which we found at WalMart.
Also, I wanted to thank the folks on here for warning us all about the big shedding days that are likely to come - mine started yesterday (day 21), and it's good to have reassurance from experienced folks that this is normal and doesn't mean I'm going to lose all my hair!
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Thanks did not know you needed two coolers! question about people icing hands and feet with frozen peas- don't they defrost during the chemo drip? How is that best managed?
TXS
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The Coolers are available on Walmart for $24.44!!!! No need to spend more.... IGLOO 60 QT.
You also need Gallon Ziploc baggies or plastic bags like you get from the grocer to put the ice in.
THe blocks I put in the plastic bags from grocers and tie loosely shut...the CO2 gas needs to escape.
Dry Ice: i get 60 lbs in 10lb blocks and 20 lbs in pellets. The pellets i put in Ziploc and again dont close completely leave 2 inches open.
You should get tea tree oil for your nails while icing. Also not a bad thing rub into your nails during the week.
I also use Dessert Essence Tea Tree Oil Toothpaste.....it is a natural anti-biotic/disinfectant....very good for the gums!
Ive used Beauty without Cruelty Shampoo/Conditioner....but jsut bought DermOrganic....dont know which is better.
I used mini claw clips...and I bought these loose lace headbands and satin scrunchies that dont pull on the hair...for bad hair days.
Satin Pillow cases and/or satin hair cover to sleep in.
Thin hairnets like food preparers use....helps keep your hair in place when taking the cold caps on and off and not get stuck in the velcro.
I bought 16 ounce water bottle (PBA Free)...that I try to drink at least 10 off day off and 5 days after chemo. Then i drop down to 4-6 refills/day
Supplements I take: a good Probiotic, B Complex, L-Glutamine Powder (supposedly help with neuropathy), Vitamin D, Calcium, Biotin and Sicila
I also bought a spray for Dry mouth...that I keep next to my bed (as well as water)....tend to get dry mouth in the middle of the night....can jsut spray and go back to sleep ....instead of getting up and going to to bathroom to rinse.
Hope this helps!!!
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