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Cold Caps Users Past and Present, to Save Hair

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Comments

  • moderators
    moderators Posts: 8,740
    edited October 2015

    Dear Community Members,

    We wanted to let you know about a new product that supports people recovering from excessive hair loss caused by chemotherapy and helps them to regrow their hair. It is called Theradome LH80 Pro, and it is the first FDA-cleared laser hair restoration for use at home. The helmet is safe and easy to use— you only need to wear the helmet twice a week, 20 minutes per session. Check out before and after photos and learn more at www.theradome.com. Results from their clinical studies showed that all participants benefited from using the Theradome™ and experienced one or more of the following: A minimization and slowing down of hair loss; A doubling of hair follicle size for existing hair; New growth of healthy hair. It is costly ($895.00), but could be shared, or donated further to others.

    We had a taker already for our Theradome helmet We'll keep the names of the others who expressed interest to continue passing along!

    Take a look and let us, or the company, know what you think,

    Thanks,

    The BCO Team

  • aj93
    aj93 Member Posts: 37
    edited October 2015

    tshire, congratulations on your first treatment. One down! I had my second infusion today. I specifically asked they run in Taxotere slow and also for the 3rd. I don't want to take any risks of complications. Maybe overkill.

    We did the same as Wildflower. I ended up using 6 caps in 2 gallon hefty zip locks, one cooler, 80 lbs if dry ice. We made sure none of the dry ice directly touched the baggies to avoid damage. We did this by separating the bags with the ice with kitchen hand towels. When we took the first bag out it was -44F. So we knew to get one out 10-15 min ahead of time and started using the rolling pin. We also grab a second cap and let it thaw on its own. Kept checking the temp and throwing it back in to the cooler if needed. The Temps were mostly evenly distributed (sooo much better than the last time) . Also, 6 caps worked well for us. Each cap we pulled was cold and close to being ready to use. (I know this is not recommended by PCC but tested it out the night before to see if it would work). I also have the gel bands and velcro straps. This time we made use of all the straps making sure they were tight in all areas of concern. I feel confident that we did as best we could this time. Much improvement in our process between tx 1 and tx 2. Treatment 1 gave use so many variable temps. I had some terrible days of shedding between days 17 to thru 21. Time will tell how this will go. Small piece of advice. Stay hydrated. Drink lots of water to flush oUT the toxins from your 1st treatment. I think it helped a bit with the minimal side effects except those caused by Neulasta. Take care.


  • sebm9
    sebm9 Member Posts: 488
    edited October 2015
    Moderators, Thank you, this is fantastic! Thank you for making a sample available to women here.

    Susan
  • Aussie-girl75
    Aussie-girl75 Member Posts: 95
    edited October 2015

    Hey ladies just wondering if anyone used treatments in their hair at only 9 weeks PFC? My blonde foiled hair has gotten so dry it must be from the chemo because my 3-4 inch dark roots are fine.

    Moderators the new product sounds interesting but given that I'm in Australia it'll prob be another 5-10 years before we hear about it😥 

    Hope all the ladies going through chemo now are getting by ok.

  • Jbandkb1
    Jbandkb1 Member Posts: 55
    edited October 2015

    Have my 2nd round of 4 of taxol on Tuesday. I have been shedding so much more since my last AC. The top of my head is thinning so much more too. I really hope I have enough hair to make it through 3 more rounds of taxol. Ug

  • Angiel
    Angiel Member Posts: 175
    edited October 2015

    Jbandkb.....I remember thinking the same thing....you will get there! Even changing your part slightly will help with the look on the top of your head. And then you can always try Toppik which works great for filling in areas of thinness. Stay the course, you are getting close!

  • SFMama
    SFMama Member Posts: 7
    edited October 2015

    Hello, this is my first post! I had a mastectomy with reconstruction to address what we thought was DCIS but they ended up finding Stage IIA, 1.5cm tumor with one lymph node affected.

    I will be starting TCH chemo in two weeks and I plan on using cold caps. There are so many great tips on here but I am having a hard time navigating the boards. Has anyone summarized the top tips for Cold Cap use?

    Also, I have long blond hair that I usually highlight every 8 weeks. I am overdue for a highlight right now. I have enough time - should I get it colored now? Cut? I'm not sure what will help me look better during 4 month period when I'm on chemo and then period afterward where I can't do much with my hair.


  • Aussie-girl75
    Aussie-girl75 Member Posts: 95
    edited October 2015

    Hey SFmama they say not to cut your hair close to the start of chemo because it could weaken the hair follicle I wouldn't bleach my hair either because the chemo will dry your hair out and that could cause breakage of your hair. Also if you PM sebm9 she can send you a email of her tips for cold capping she has been on this thread for a few years now and I know she would be happy to help you. Hope all goes well with your treatment and if you have any questions along the way we all would be happy to answer. Remember to just take each day at a time and before you know it you will be done. I'm 9 weeks PFC(post final chemo) and I must admit the time has gone by very fast.

    Well as its already Saturday morning here in Australia I'm off to get ready for our AFL football Grand Final having friends around to watch the game (which I prob wouldn't have done this year if I didn't have my hair as I'd been too self conscious) hoping you all have a great weekend to!!😊

  • sebm9
    sebm9 Member Posts: 488
    edited October 2015

    SFMama, please message me your email and I'll send you my writeup.

    Susan

  • Wildflower2015
    Wildflower2015 Member Posts: 223
    edited October 2015

    SFMama,

    I agree with AussieGrl that you should not highlight your hair now because it's too soon to starting chemo and you could have a lot of breakage as a result. I think Penguin likes for you to have at least an inch of new, untreated growth at the roots in order to have maximum root health and strength. I remember reading about one member on the cold capping thread - I think it was Hortense, but don't have time to check right now - anyway, this person, like you, had long blonde hair that she regularly colored/highlighted. I remember her saying that against advice, she went ahead and highlighted her hair just a few days before chemo, and later on during capping and afterward, had lots of breakage right at the point where the highlighted hair met the new growth. Something about some kind of tiny bump forming in the hair shaft right at the meeting point between highlighted & new growth, that then broke off right at the bump. You can search and find the details. Anyway, it was enough to scare me off from doing it. I hear ya about the dark roots, though. I'm 6 weeks post chemo and can't wait to get some highlights done in December!

  • SFMama
    SFMama Member Posts: 7
    edited October 2015

    Thank you everyone! I am also interested in "things to know before you chemo" as I have two more weeks to keep getting prepared.



  • HopefulandScared
    HopefulandScared Member Posts: 3
    edited October 2015

    aj93-

    I started TC the same day, 9/10, and had shedding from the sides of my head the same time, day 19. A lot. I also had skin peeling from the top of my head. Where I had peeling, I had no hair loss.

    Day 22, Oct 1, I had my second infusion and cap use. The shedding has stopped. Now, where the skin peeled, my scalp is tender and has a scab. But, no hair loss.

  • ABCDebi
    ABCDebi Member Posts: 5
    edited October 2015

    Hi Ladies,

    I had my first two treatments the same days as you--9/10 and 10/1. Started with super-thick hair and have had massive shedding every day since day 14. I am now getting bald spots in the back and am not sure that I will have enough hair left in a few days to make it worthwhile. Wondering if the cold caps are just slowing down my inevitable march to baldness. I am wondering if anyone has this experience and had the shedding stop after this point (day 24 from first treatment)?

  • jc254
    jc254 Member Posts: 332
    edited October 2015

    ABC, what kind of caps are you using and what kind of chemo are you receiving? We may be able to help you better with more info

    Hopeful, sounds like you have frostbite on the top of your head. It didn't happen to me but it seems to be more common near the forehead than the top of your head. Hopefully someone else will chime in with the cure. Is it possible that the shedding from the sides of your head came from around your ears? If so, this is a pretty typical area to lose hair as it's hard to get a good tight fit with the caps. A lot of us had bald spots behind our ears, thankfully it's easy to cover up with your remaining hair. That's the one area where I think bald spots are normal. Otherwise, shedding should be an all over thinning, not noticeable in one particular area.

  • LRFTexan
    LRFTexan Member Posts: 57
    edited October 2015

    I am on the AC + T regime and had my first AC infusion Thursday. I am using chemo colds caps out of Dallas and am praying I have good results. I am also using Latisse on my eyebrows and eyelashes. I have had zero side effects from the chemo so I already feel pretty lucky.

  • moderators
    moderators Posts: 8,740
    edited October 2015

    ABCDebi, welcome!

    Sorry that you have to be here, bu we're glad you've found this safe place where you can feel free to ask questions and share your concerns, and hear and learn from other members who have undergone similar experiences. Please let us know if can be of any assistance,

    The Mods

  • ABCDebi
    ABCDebi Member Posts: 5
    edited October 2015

    Hi JC,

    Thank you for the response. I am using penguin cold caps and am on TC, receiving a total of four treatments separated by 3 weeks each. We are also using the additional cold bands that go around the hair line as well as the straps that keep the caps on tight across the top. The thinning is all over but especially around the hair line, at my part, and most problematically, at the top back of my head. Really, I have probably 15% of my hair left at this point over my whole head. I think that I could disguise the balding spots with Toppik but not sure what tomorrow will bring. Any thoughts are appreciated though!

  • aj93
    aj93 Member Posts: 37
    edited October 2015

    Hi Hopeful,

    I am glad to hear you stopped shedding. I can't say the same for myself. Day 26 and I had a massive shed today. I read shedding can go until Day 30 so I remain hopeful. No frostbite as far as i can tell but my scalp is a tad tender. I also thinned out quite a bit, but no bald spots that I can see as of yet. Trying not to focus on the amount that is coming out but the amount I still have; however, if this keeps up, I may not have enough to consider saving for TC3. I have short hair to begin with so while it may be against protocol I may wear a very loose scarf around my head so I'm not covered in my own hair all the time And lessens the temptation to touch it.

    I tested out Toppik and it seems to work well for me.

  • pch
    pch Member Posts: 185
    edited October 2015


    Sebm9, hello! I just PM'd you for your checklist. Would love to take a look.

    Thanks so much,

    Paula

  • pch
    pch Member Posts: 185
    edited October 2015

    Ladies,

    I'm working with my local cancer center on a capping fact-finding panel to get some support for women here in Madison (after facing so much skepticism as their first capper). I just messaged Sebm9 for her checklist. If anyone has one of her own she'd like to share, that would be terrific. I'm also looking for your top shampoo/conditioner picks that follow PCC protocol. I feel we've all spent a ridiculous amount of time trying to find products that make the hair we're keeping look decent. Please PM me with your favorites. (But please don't include anything that's off the reservation re: PCC requirements. ) :)

    Thanks so much!

    pch

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited October 2015

    Pch, here are my tips:


    1) order the caps ASAP so you aren't stressing about them arriving on time!

    2) look for a distributor of dry ice in your area - they are cheaper. Try https://www.continentalcarbonic.com/ and search for a distributor near you. If you are going to be wearing the caps for a long time due to your regimen or having a slow chemo nurse (I wore mine about 8 hours each time), you may want to get 100# of dry ice instead of 80#.

    3) use 2 "igloo" cube-type coolers on wheels - look early - I almost couldn't find them - had to search various Walmarts

    4) I found my infrared thermometer at Sears

    5) To help you keep track of what # cap you are on (so you can re-freeze them in the proper order), put numbers inside each plastic box. My husband cut out 8 square pieces of cardboard and used that to mark the boxes. I guess you could just as easily put tape with a number on it on each box.

    6) Get an electric blanket and use it - heaven.

    7) Use a handkerchief or some type of soft cloth under your chin so the strap of the cap doesn't make you so cold and doesn't cut in under your chin

    8) When putting moleskin on, don't get into the hairline. OMG, OUCH. Who wants to pull off hair after working so hard to save it? But don't go too far away...I got a spot of frostbite along the hairline when I overcompensated. Leave part of the moleskin adhesive on the moleskin near the hairline. It doesn't have to stick down there - just needs to cover your skin.

    9) make sure you cover those ears - pantiliners do work well for this, lol

    10) We used an additional strap over the top of the head and under the chin to help keep it tight. We didn't get one from Penguin, just used a velcro strap we had for holding icepacks on knees/shoulders, etc.

    11) When removing the cap, only undo as few straps as possible - remove it like a helmet. This way, fewer hairs get caught in the velcro.

  • Wildflower2015
    Wildflower2015 Member Posts: 223
    edited October 2015

    pch,

    1. My helper used a rolling pin to knead the caps before using them. It worked great to break up the frozen gel and spread it evenly throughout the spaces in the cap.

    2. I took one of those fluffy winter footie socks (like the ones at Walmart, Dollar Store, etc.) and cut the toe out and stuck the chin strap through it for a nice, soft & comfy padding under the chin. It was easy to swap out and didn't fall off or shift around because the strap ran inside the sock and kept it in place.

  • pch
    pch Member Posts: 185
    edited October 2015

    Dancetrancer, great list, thank you!

    Wildflower, genius about the sock. Wish I'd thought of it.

    Keep it coming ladies. And any preferred nice shampoo/conditioner tips would be great too.


  • Wildflower2015
    Wildflower2015 Member Posts: 223
    edited October 2015

    Lol! Panti liners on the ears, socks under the chin, ice packs on the head! We girls really know how to party! Loopy

  • elw67
    elw67 Member Posts: 3
    edited October 2015

    Thank you all for the temporary root color recommendations! I have not tried anything yet. I really started shedding around day 15 post TC treatment #1. I could make a bird's nest out of what I have lost. I notice it most with combing and/or running my fingers through my hair. Today, I noticed a spot on the very top of my head that is pretty bare. I have seen the posts about Toppik and guess I will be heading back to the store. I have #2 on Thursday and hope to see a decrease in the amount of hair I am losing. I really thought I had the caps tight enough and even had a capper since it was the first treatment. I will focus on the top of my head, but I'm getting a little discouraged. I know that chemo will dry the hair. I'm not overly thrilled with the shampoo and conditioner I bought (Pure D'Or). Any recommendations? Thank you all!

  • SFMama
    SFMama Member Posts: 7
    edited October 2015

    I wanted to gather your thoughts on hiring somebody to help you with cold capping. I have lots of friends who want to help me, but they all have jobs or children who need them, so they would have to take a vacation day or pay a babysitter and I just don't want to put anyone out. Also, I need somebody who will really pay attention and do the job right and I don't want to boss around my friends :).

    I will be at UCSF - do any of you know somebody who has experience with cold caps there?

    Thanks!

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited October 2015

    SFMama,

    I believe suladog did cold capping at UCSF. You may want to private message her and see if she knows anyone who you might be able to hire in the area. Here is her profile:


    https://community.breastcancer.org/member/210094/p...



  • pch
    pch Member Posts: 185
    edited October 2015

    SFMama, also contact Makingway here on the thread.She has tips for vetting professional cappers to make sure they have the correct credentials. Good luck!

  • mdg
    mdg Member Posts: 1,468
    edited October 2015

    SFMama - My husband went to every chemo with me and I had a friend join us each time to help. They all took a day off work because they wanted to be there to help me. It was so nice to have good friends and my sister want to help. I actually had more volunteers than I needed as other friends also told me they wanted to help, but I was only having 4 chemos (thank God)...I had 5 or 6 friends want to come and help out!

    If you PM me you email address...I can also send you a video of my husband putting my caps on. I think I have two videos my friend took on my phone. Maybe that will help your cappers.

    As far as those shedding. I had TCx4 and I swore I would have NO hair left by the end and I did. I really struggled emotionally thinking it was not going to work. Have faith.....take it one day at a time. You got this!

  • elw67
    elw67 Member Posts: 3
    edited October 2015

    Thank you mdg!

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