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Cold Caps Users Past and Present, to Save Hair

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Comments

  • Rogue1127
    Rogue1127 Member Posts: 6
    edited April 2016

    Greetings to all the cold cappers--I finished chemo about 18 months ago and used elastogel caps throughout. I did wet my hair (which is thick) and kept about 70% of my hair. I also used semi permanent hair color without a problem. I'm just so glad that I did the cold caps.

    If there are ladies reading this topic in the Denver area who are considering cold caps (or know someone who is) -- I have six elastogel caps that I will happily give to anyone who is wanting to cold cap during chemo. Just message me and we can figure out the rest! Cold capping does work but takes a solid commitment to get through. Totally, totally worth it to wake up in the morning and be greeted by bed head :) even though you're in the midst of chemo!

  • jc254
    jc254 Member Posts: 332
    edited April 2016

    Sarah, I second everything Wildflower said so well.

    I had 4 rounds of TC and kept my hair with cold caps. In fact, the TC regimen has one of the highest success rates with cold caps. There have been very few women on this board who weren't successful with TC and Penguin cold caps. If you follow the hair care protocol, keep the caps cold enough and make sure the caps fit snugly to your head your chance of success is probably 90% or higher. Please don't let your doctor discourage you. We have no idea what kind of caps that other woman used or if she adhered to the instructions. Funny thing- there was a woman who posted on another thread a while back that cold caps didn't work for her. Then she added- "maybe it was because I used regular ice instead of dry ice". Maybe??

    I also didn't have a PICC line or a port. My oncologist suggested we first try without one although she kept open the option of using a port for subsequent infusions if they experienced problems with my veins. I didn't have any problems.

  • sarahrae
    sarahrae Member Posts: 52
    edited April 2016

    Wildflower & jc254 & Sheri CT~ I can't tell you how much i appreciate your words! i feel loads better after reading your posts.<3<3<3

    thanks so much for your inspiration ans strength!!

    sending blessings

  • phaila
    phaila Member Posts: 177
    edited April 2016

    Thanks patinmn! I got some hair stuff today. Cross Fingers it helps:)

    Rouge1127, did you use semi perm color WHILE cold capping? I'm so tempted!

    Jc254 that is so funny about the ice instead of the dry ice. Poor poor woman

  • SharonL-MI
    SharonL-MI Member Posts: 2
    edited April 2016

    Hey everyone! I'm heading in for round 3 tomorrow and reading posts I'm getting nervous about success as the capping goes on. Maybe I'm missing something, but I have not seemed to lose hair...in fact, I think about how much hair I'd lose before all of this in the shower on a daily basis and now in my bi-weekly washings I barely lose anything. Is this a fluke and will it all come tumbling down in the second half of my treatments? Or is it maybe because I have the freezers provided by the Rapunzel project at the hospital and those work better?

    Has there been discussion about the difference in success between people that have to use dry ice and coolers vs people that are fortunate enough to have the freezers/caps at the hospital? When this crap is over I'd really like to be an advocate to help more facilities get freezers so I'm wondering if they improve success?

    Anyway, just sitting here obsessing about all of this before treatment tomorrow. Dreading the cold (I'm such a baby - I cry during the first cap) but hoping that my luck continues through the rest of the treatments and that my hair continues to stay put!

  • Trixie16
    Trixie16 Member Posts: 20
    edited April 2016

    Thought I would pen a few comments as its smack dab in the middle of the night and I have steroid induced insomnia...ugh. Today I finished 8/16 rounds so I'm officially half way done. Hopefully smooth downhill chemo sailing from here...and less shedding, ha!!!

    Phaila- so sorry to hear about your tree incident..ouch!!

    Spwins- my chemo would not have gone this smoothly if not for my cappers. I have a group of best girlfriends and two come every infusion to cap. They make sure I have healthy snacks, lunch and drink 8oz of water every 30 minutes. They keep me company and keep my spirits up with good humor and fun stories. Sidenote...Several years ago my friends and i walked in the breast cancer 3day walking 60 miles to support breast cancer research. At that time none of us really even had any personal experience, we just felt an overpowering call to do it. We've spent time now reminiscing about that and appreciating the experience even more today. It's so crazy how life spins on a dime or comes full circle. Wishing you and your friend a successful capping experience.


  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited April 2016

    Sarahrae, I had a PICC line years ago, not for chemo but for IV antibiotics. It was a pain, I had to flush it every day myself and sometimes it would clog up and I had to go to my doctor's to have it unclogged. I wasn't allowed to get it wet, so every day I had to tape it up to waterproof it before I took a shower.

    Also, I agree with everything Wildflower said about making decision to cap or not to cap. For encouragement I invite you to check out the other cappers' success stories, if you haven't done so yet:

    https://community.breastcancer.org/forum/6/topics/835766?page=2#idx_58



  • Sheri-CT
    Sheri-CT Member Posts: 40
    edited April 2016

    sarahrae- I completely agree with LC254. We do not know what caps she used and if she followed the directions. My clinic told me they had a lady that capped without success, but they said her caps were different and she used their REGULAR freezer. You and I have the same diagnosis and treatment, and we were even diagnosed in the same month.

    Question- I had chemo on Monday. Is that day 2 or 3? Can I wash it tomorrow? Honestly, it looks okay considering I haven't washed it since Friday.

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited April 2016

    I've never had a PICC line, but I have heard what others are saying. Harder to care for, possibly higher risk of getting infected? Not sure.

    I've seen many women on here who only need 4 infusions do it without a port, esp if TC. AC I think is way too hard on the veins to risk it without a port, plus they usually have way more than 4 infusions, especially if followed by 12 taxols.

    There is indeed a risk of blowing our your veins without a port. Chemo drugs are tough stuff. Since most of us only have one good arm to work with (due to nodes removed in the bad side), you have to weigh the risk of trying the infusion without a port or PICC line. Tough call! Both the ports and PICC lines have their risks as well. Good luck with your decision!

  • phaila
    phaila Member Posts: 177
    edited April 2016

    LONG HAIR STICKS IN VELCRO

    For all you COLD CAP starters here is a tip: buy a really big pair of pantyhose. Put them on your head and cut off where the legs start. If you have long hair, and are cold capping, it gets stuck in the Velcro and not only is it annoying it is also very distressing. I lost lots of precious hair my first cold cap from it getting stick plus it takes up Time trying to remove the hair. The past those keep it from getting caught. Also the band helps to protect your forehead from frost bite:)

    Don't forget to Vaseline the top of your foreheadmoleskin, or leave the paper on near the hairlines. I lost tons of precious hair there too my first Time:(

  • Aussie-girl75
    Aussie-girl75 Member Posts: 95
    edited April 2016

    Sarah I had same regimen as you and only 4 rounds to but did not need a port or picc but my last chemo they did have trouble finding a vein but got it in the end. I did have success with the caps I never needed a wig but it did thin out a lot was I 100% happy with my hair? No, prob 50% happy but I was 100% happy with the fact I didn't go bald or need a wig and now just over 9 mths PFC it's looking pretty good. I have a friend who is 14 mths PFC but she did not use the caps and our hair is the same now. Good luck with whatever you choose to do. X

  • phaila
    phaila Member Posts: 177
    edited April 2016

    Off to sleep

    Chemo AND capping tomorrow

    Woohoo

  • heidi16
    heidi16 Member Posts: 44
    edited April 2016

    I had my first TCH treatment today with cold capping. It was almost 3 hours ago the last cold cap was removed and a part of my front scalp (right above hairline) still feels numb. Have any of you experienced that?

  • Wildflower2015
    Wildflower2015 Member Posts: 223
    edited April 2016

    Heidi,

    That's pretty common to have some lingering numbness from the extremely cold capping temperatures. Your forehead should feel back to normal by tomorrow. Congratulations on finishing your first treatment!

  • Runner70
    Runner70 Member Posts: 177
    edited April 2016

    I have my 3rd chemo tomorrow and I'm dreading it so much I don't want to go to bed. My day starts really early, too. The cold capping makes it such a long day. So far I have a lot of hair but the bald spot on the back of my head is getting more difficult to hide with hair. I'm not sure why that area is losing way more hair. But I'm happy I still have hair to complain about! Even if it does look messy all the time!

    Is anyone else miserable with bone/muscle pain? The first chemo it was severe but went away after 5 days. The 2nd one it never really went away. I've been taking Claritin before neulasta and everything. Taking Aleve is a joke. I went through so much Percocet this past month it scares me. I'm afraid to ask for more but the muscle pain is ridiculous. I got some decadron to take today and for a few days after chemo. I really hope it works. My blood count really dropped this last treatment too. I wasn't expecting it to drop so much. If it drops much more ill need a transfusion. I'm not thrilled about that but I'm still trying to work and my job is pretty demanding. I almost fainted at work today.

    I can't figure it out. I finally got my life and career where I want it and BAM! Well hello there, cancer.

    Sorry I'm just venting. It's hard living alone and dealing with this by myself. Some days I don't eat dinner because it requires too much energy. And I hate fast food.

  • zinny
    zinny Member Posts: 169
    edited April 2016

    Runner70, it is good to vent. Sorry you are struggling with pain. The fainting is no good! How is your electrolyte intake? Could be adding to the muscle stuff. I have been getting weird muscle cramps. Threw some nuun tablets into my water and it seemed to get better.

    I think it was my 3rd one that I cried all the way to chemo. Virtual hugs ( lol typed that as jugs at first!! )

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited April 2016

    heidi - watch that area - might have gotten a touch of frostbite. If so, next time you may want to put a small piece of gauze there. Perhaps your hair is very thin at that part of the hairline, and the skin/scalp got too cold.

    runner70 - so sorry! I had a very hard time with chemo, and was fortunate that I could take off work at that time, and am married and hubby took good care of me. It would have been brutal for me to try to work through it. Some don't have issues with it, and fly through chemo with minimal symptoms. But some of us experience low red count (amongst many other symptoms) which can really make you feel ill. You truly can pass out from it - a friend of mine fell out in the grocery store line while on chemo! She ended up getting a transfusion.

    Please be easy on yourself. Allow yourself to take a sick day, for goodness sake. Get yourself a bunch of frozen meals so you can pop something easy in the micro for food. You must take in calories!!!! You need to treat your body as well as you can during this time.

    Do you have any friends/family locally that you can lean on? If so, and they ask to help, ask people to bring you meals. Let people do things for you. It makes them feel better to do something concrete, as they often feel helpless.

  • heidi16
    heidi16 Member Posts: 44
    edited April 2016

    Wildflower and Dancetrancer: Thank you, it feels better today however three fluid filled blisters have formed in the area so definitely a frost bite. Would it be enough to cover these areas? My next chemo will be in 3 weeks...

    Runner70: So sorry to hear, I will have my Neulasta shot today day after first chemo. I hope Decadron will help. It was given to me before and day of chemo. hope it will help! My team said if I don't have time/energy to eat or drink I can come in for iv dehydration that instantly perks up.


  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited April 2016

    heidi - I only had a touch of frostbite (a tiny slip skin on the side of my forehead wasn't covered well enough by the moleskin - it was bright red then turned brown, then it peeled). I was fine for my next tx 3 wks later (can't recall for sure - but I think it probably was brown by then, but hadn't peeled. I was afraid it would leave a scar, but it didn't!). Others on here have had blisters, and I don't recall them not healing in time for their next capping - but it would be best if they would post their experience. Hopefully they are reading the thread right now!

  • sarahrae
    sarahrae Member Posts: 52
    edited April 2016

    Runner70~

    I'm so sorry to hear that the bone/muscle pain in so bad. I have read there are a group of folks that have pretty debilitating pain from Neulasta, many have tried a round of antibiotics instead, have you asked your Doc about it? of course, the trick (always) is staying healthy and keeping counts up which can seem impossible when you are in too much pain to sleep or shop and fix healthy meals. ugh, wish I could come cook/prep for you!! hang in there and please reach out for some help if you can, it really is a gift to both the giver and the receiver. good luck today, I'll be thinking about you!!

    thanks all for the encouragement and experience you shared around my treatment plan and cold capping, it is really helping to boost my resolve and confidence moving forward.

  • Sheri-CT
    Sheri-CT Member Posts: 40
    edited April 2016

    Runner70- I have horrible bone/muscle pain right now. It's unbearable. I am thinking about taking a Percocet, but I am trying to work so that might not be a great idea.....LOL. I will take one tonight. I was up all night in pain.

  • JCS28
    JCS28 Member Posts: 92
    edited April 2016

    EstelaLorca -- We did it!!! I had my final THP with cold capping yesterday! And it was spectacularly successful! I just wanted to give some encouragement to those of you who are still struggling or wondering if it's all worth. It was 100% worth it for me. I would say I have 90% of my hair. Absolutely no one can tell. If I look closely at my hairline there is some missing, but no one knows.

    Here are the reasons I think mine was so successful -- 1) My mom was an AWESOME cold capper. We learned from someone in town about Penguin Cold Caps and everything was great. 2) I did use a freezer at my facility. 3) I was only on Taxotere along with Herceptin and Perjeta. 4) I guess I was lucky.

    Hang in there, ladies! You are all beautiful!

  • heidi16
    heidi16 Member Posts: 44
    edited April 2016

    Dancetrancer: Thank you, my husband had a look at and he said that he noticed that the areas were red at time of capping now it looks more like scabs than blisters. I could not really see because its on top of my skull. I hope they will heal before next treatment! Thanks again :) xx

  • estelalorca
    estelalorca Member Posts: 26
    edited April 2016

    JCS28 - We certainly did!!! Looking forward to a regular showering/hair washing schedule (which I'm not quite sure yet when that will happen, thoughts?) It was definitely hard, and there were moments when I wanted to just give up. But I believe it'll all be worth it in the end. Now I just gotta get over these awful S.E.

    Runner70 - I hope you feel better soon. I know these SE are just awful, I had a good cry this morning - vent away, it's good for you. Drink lots of fluids - (virtual hug xoxo)


  • 7of9
    7of9 Member Posts: 474
    edited April 2016

    Wish we did the cold capping drill today at my first session...might have more hair to try to save. Plenty of dry ice, added a 4th elastagel cap, they were all coming / rotating out of the cooler at minus 1 - minus 4. Ear bands I used to wear in winter make great wraps to keep down tight on seams on top plus they insulated and kept frost under them until time for the next change. I think we shorted ourselves on a cap and dry ice the first time and I'm paying for it. Oh well I am 50 % done so two more anyhow and I'm doing them to see if I can coax regrowth sooner (heck with taxotere just want to make sure it comes back at all). I also got more pain pills this time around to deal with the body bone aches from neulasta and chemo as I can't take ibuprofrin, messes with my colitis. Now if I can avoid a cold I plan on sailing onto round 3 in 3 weeks then its a perfectly time much needed vacation before the finale the first week of June. Whoot!!!!

  • SusanBP
    SusanBP Member Posts: 73
    edited April 2016

    I have a question about scalp temperature. Is it ok to keep exercising while using the caps? We do a lot of hiking, and I work out daily. I don't want to give this up but have seen some threads about not letting your scalp get warm. Does anyone have any experience or thoughts?

    Thank you,

    Susan

  • phaila
    phaila Member Posts: 177
    edited April 2016

    7of9 so did you go through your first shed? How was it? Hope not as terrifying as mine! So what chemo are you on? I'm on TC every 21 days. What temp do your caps have to be? Penguin caps have to be -34. Those ear things are a good idea. Like headphone speaker covers right? I'm gonna look for a pair!

    Good luck in your next one! I just did number three and of course it never felt cold enough and I kept forgetting to ice my hands and feet the whole time so I hope that doesn't f me up this round😬


    Vicki

  • Nolagirl1126
    Nolagirl1126 Member Posts: 178
    edited April 2016

    Estalorca and JCS28- CONGRATULATIONS!🎉🎈. It must be a great feeling of accomplishment! So glad cold capping was a success for you.💕

    Runner- I agree with above comment about an IV of fluids...that may perk you up. Also, when I don't have energy at night to eat, I grab a banana and a cup of tea...easy on tummy and some much needed calories. Hang in there! Do you have 4 or 6 treatments

  • Runner70
    Runner70 Member Posts: 177
    edited April 2016

    thanks everyone! Part of my fainting/hydration issues is I ran a half marathon Sunday so it made me extra tired and dehydrated this week. I take tons of vitamins and electrolytes. My red cell count will come up some albeit briefly because my labs today show a high percentage of brand new baby red cells so I was relieved about that! And I'm so lucky I have a dr that is generous with pain meds for pain. She said younger people have more bone pain from Neulasta because they still have most of their active marrow still working so there's more marrow swelling. Makes sense. I'm 45.

    Cold capping went well today. Seemed more cold and it was hard to keep my growingbald spot in the back covered with hair.

    Here's a pic so far. The top is March 10th my day before 1st chemo. The one on the bottom is today before treatment 3. Other than my hair being shaggy and unkempt you really can't see any loss, although I can tell. Does anyone do 6 tx of TC? I'm thinking about it. The study comparing 4 vrs 6 TC won't be completed for awhile and I feel like I need to give this my best shot, even though the idea of 6 makes me cringe. I'm really pale normally but I took decadron yesterday and today so it made me turn very red and hyper! And I may lose all my hair with TC. But if it saves me from a recurrence it's worth the risk.

    Hope everyone is doing well. Thanks for the support!

    image



    image

  • Nolagirl1126
    Nolagirl1126 Member Posts: 178
    edited April 2016

    Runner- you look great! I think if we can "hide" the thinning hair, bald spots, itchy flakes, etc...these caps will be a win! Take care of yourself. Have some soup or snacky protein food for dinner. Your red blood cells will thank you!

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