Cold Caps Users Past and Present, to Save Hair
Comments
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Hi everyone,
I'm new to the site, so please forgive me if I do anything incorrectly
My mom was recently diagnosed with breast cancer (Stage 1, Grade 3 IDC, ER+/PR+, HER2+). She will be beginning chemotherapy (Taxotere, Carboplatin, Herceptin, 6 treatments, 21 day cycles) and we will be using cold caps, gloves and mittens.
I went with the Elasto-Gel caps as it was much cheaper than renting through Polar Cold Caps for 5 months. I have purchased 8 caps and 8 pairs of gloves/mittens. We will be using dry ice to cool them as there is not a freezer available at the facility.
I have a lot of questions and am looking for any guidance that you all are willing to provide.
- Has anyone used cold caps with TCH? If so, how long did you wear the caps after the infusion had finished?
- Did you cool the caps in your home freezer or on dry ice prior to treatment?
- How much dry ice did you need for each treatment? What type did you use?
- How did you store the caps with the dry ice in the cooler?
- Do you need to replace the dry ice at any point before during or after treatment?
- How big of a cooler did you need?
- Has anyone used the Elasto-Gel brand caps? What was your experience? Did you add additional straps to help keep the caps snug? What did you use?
- How cold do the caps need to get?
- What do you recommend to cover ears? I have read moleskin is ideal for the forehead area.
Thanks so much in advance for any information. I greatly appreciate it!Susan0 -
Hakunamatatas, if you will look back on page 570 of this thread, you will see a post by BBwithBC which has links to two other related cold cap threads. One has a whole lot of great information for newbies which I think will answer most of your questions. I can't help too much because I used Penguin caps, and I had a medical freezer at my facility so I didn't have to mess with coolers and dry ice. Lots of folks here used cold caps with the TCH regimen. Best of luck to you and your mom
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Hi, update on the F....pink ribbon,,CK CANCER shirt that my 13 year old wore to school on Thursday he did not get in trouble LOL.
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Finished 4 rounds of TC chemo 16 days ago and used Chemo Cold Caps with really great results. I have probably shed 15% and am still actively shedding. I am SO SO tired of my troll hair and want to start blow drying/styling my hair. When can I start doing this? What does Penguin recommend? I am a Texas blonde and need my hair to look good! Please help a sister out!
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Thanks everyone! I threw my last cold cap, moleskin and ear covers across the room when I was done! Done!!! Yay!!! Shipped them back to where they came from today! I'm still buzzing from steroids, but know I've got another rough week ahead. But then, each day I get feeling better will no longer be a day also towards feeling worse.
Tune girl, so happy for you too!
Willa, I've probably lost about 20% of my hair. Looks horrible today since I've not washed for 4 days but here's a couple pictures. My grays are really showing on top.
I was extra careful to change my part with each cap change and never used my natural part.
Hope you all have a great weekend!
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Your hair looks amazing! I dream about my last infusion, 10/9 and mailing back those caps and tossing everything else. I told my husband today to have the box ready! Even the coolers...gone! I lost more hair than you did as I was on adriamycin, but still happy I did it. But happier it's over! Congratulations
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you ladies rock!!
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Congrats to kechla and tunegrrl on being done with cold capping!! I know that milestone feels good.
Also, glad to hear jstan that your son was able to wear the shirt with no problems.
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Thanks for all the congrats!
Feeling pretty good for two days post final chemo.
Grateful the Paxman scalp-cooling machine, Toppik hair powder, clinique eyebrow colouring wax and free bonus creme lipstick make me feel about the same as before all this hell started.
Now all i want is for my MRI next week to show my tumour has responded well to chemo.
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Kechla - You look so good! I hear you on the four day hair, oh my. But your's doesn't look like mine! My husband was watching the movie The Revenant recently and said my hair was running a close second to Leo DiCaprio's. No bathing, oily, stringy wavy disaster. Haha. Ugh. Anyway, congratulations again! I hope you manage okay next week with SEs - good thoughts your way. I am right behind you, finishing next Friday.
Grateful - Congrats on being done as well! Just 15% hair loss is wonderful! I think Penguin says to wait three months before doing normal washing, styling, coloring, etc. I think with color at three months it needs to be natural color with no ammonia or peroxide and then at 6 months you can do what you wish. But I'm not positive - so maybe best to contact your Penguin rep so you are sure to maintain your good results.
Jstan - good to hear nobody's in trouble due to your f cancer shirt! As it should be.
Hope everyone is having a good weekend.
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Tunegrrl - you look stunningly beautiful! Good wishes for the next week.
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tune girl, you look amazing!
Willa, day 5... I think I have also crossed over into revenent territory. Lol
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good evening ladies,
Please help!!! I started my chemo on the 20th will have my second infusion on Thursday. Doing the ACC.
Anyone have curly hair? I have really curly hair and it's extremely hard not to add any products to hair ton control looking like a bad version of Diana Ross. I have been applying oil but only on the hair nothing on the scalp. Any suggestions?
Secondly when I did my first cold capping my head felt cold but not frozen is that normal?
Before chemo I had very dry scalp and still do.. how do you stop from scratching?
Many more questions but don't want to bore you.
Thanks Dee
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Hi Y'all - happy almost Halloween. Mmmm candy. Feeling a little guilty that it is no way healthy for my body, but it sure tastes good;)
Runner, I have a couple of friends with metastatic disease who are doing well and fighting hard while living well. They sure do give you perspective. And fear.
A very close friend of mine said something early in my treatment course that made a big difference to me. I called her after I found out my lymph nodes were positive. It was one of the few times I cried during this whole thing, and because we are so close, I could really let go with her. After I had had my little sob, she said, " I don't want to sound harsh or mean or anything, but lets be clear, you are not dying." And she was so right. And so I have been able to go through this without getting too mired in the what-if's. I will not worry about dying until I need to worry about dying. Until then, I am living.
I leave you all with this - Halloween Candy and Wine Pairings
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deemendoza-
Sorry about your Diana Ross hair. I have semi-wavy fluffbomb hair and I've been forced to embrace it. At least it's my hair! I found that using Moroccan oil actually made it worse. It turned it into dredlocks that were really difficult To comb out. Ive been using a drop of leave in conditioner at my weekly washing and that's it. Not sure how long your hair is but i generally keep mine in a very loose low pony.
I was also concerned after my first two rounds that the caps weren't uncomfortably cold enough. But I'm 5/8 rounds in and it's definitely working. Although I lost prob 40-50% of my hair which sounds like a lot, I was told id have 0 if the caps weren't working. I still have plenty of coverage and just use a little Toppik powder on my part. (The fluffiness actually works to my advantage in masking the thinning at my part!
Scratch very gently!
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Oh the scratching! I only felt that intense itchiness in the first round, before the "big shed" (started day 15, peaked day 19, tapered off). Steady, even shedding after that, without that burned, itchy feeling. I hope it turns out to be the same for you, Deemendoza.
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Hi Dee! I too have curly hair and have also struggled with the advice to not put anything on my hair for capping sessions. I've had 2 cap sessions thus far, and on the second one I compromised and put my regular products on the ends of my hair, that wouldn't be touching the actual cap. Also, your scalp goes numb after awhile from the cold, so I doubt it would actually feel frozen (no matter how cold it got). In fact, when they took off the cap after my second treatment, the nurse told me I had a bunch of ice crystals in my hair. I couldn't feel that at all and my scalp didn't feel any colder than it had during the first treatment where I had no ice in my hair.
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Hi ladies hope everyone's weekend was good!
Aimless you were right the pain is barely starting to fade. Just couldn't believe how painful my muscles became even my arms and neck it's the main reason i couldn't do more treatmeants. Stanford did say stop in my case if I had feet and hand problems nerve damage so that's what I had in my muscles. Hope it doesn't leave anything long term. ( my mom has pain in both hands) I knw it's serious what we have and treatments are to help us but geez. I've read other ladies got muscle relaxers or something from their MO. He'd hear me out give me explaination but that's it.
Willa, thank you thoughts too! I read your post about telling the people around us that we doing ok. Becuz not too many people know how to handle the cancer topic. It was easy for me to be there for my mom and other family members but it became hard for me to open that to others. Maybe it was the burden of it or that I didn't hve to full picture. The unknown. Then some who had it in the past kinda shyed away bc it's too close to home bringing back the painful memories which I get. But I might get a therapist too. I do hve one good friend who's like a mother to me but her health needs to be looked after too. I hate putting more on her plate. Glad we have all you ladies here. Its a sisterhood
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Thanks ladies,
I will hold on to hope... I bought a wide tooth pick to gently scratch when need me. I figured this might be gentler than me wanting to dig my nails in my scalp and scratch away.
FightingTheFight, My fiancé is my capper and he did mentioned my hair was frosty like but of course I didn't feel any of it. What products are you using for washing/conditioning or other products in general? how often are you washing? do you run you head through water in between washes? my hair is about a little under the shoulder when wet and when fully dry it curls up all the way to the neck.
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Zinny - You're always such a breath of sweet calm. Thank you. But wow on the wine pairings. Haha. Lights out.
Meow - I'm glad your pain is starting to get a bit better day by day. Sorry it is such a struggle.. XO
Hang in there cappers. Fluffy, shedding, curling, frostbitten.. it is still hair.
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What does the tingling feeling mean? I'm 13 days 1st infusion.
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Hello Laides, it's been about 10 weeks since I last posted, my last chemo did me in emotionally so I had to stay away. As of yesterday I am 10 weeks post-chemo and also done with radiation! I have herceptin until May, but I am done with the hardest part of the treatment. Other than gaining about 20 pounds during and after chemo, and burning my tit to a crisp with the rads, I feel pretty good. I now have a full head of crazy hair coming in at the speed of light in all shapes and colours..... and most of my eyebrows back. I had done laser hair removal on my legs, bikini and underarms and unfortunately a lot of that hair is back too... For those of you freaking out about shedding I lost 80% of my hair, most of it during chemo, and shedded heavily for 6 weeks after, and less and less as time went by. 2 weeks ago I said f- it, had a haircut and started washing my hair every day, still shampooing every third day but rinsing it in the shower at full blast daily, within a week of not giving a s-t about it I stopped shedding completely, and today was my first day using the hairdryer (which I never did before this adventure started )... so please hang in there because it is worth it.
As so many of us here, I also wonder about the future. I don't really get sad, I get angry... I have a hard time reconciling my old life with the new normal; I used to be fit, now I am fat for NO reason because I am a very disciplined eater. I was on my way to becoming a yoga teacher and now I can't touch my toes, I also have absolutely no sex drive... yes, it sucks but like everything else the past 8 months, all of this will get better too, I have no doubt. So hang in there ladies, you are not alone and this is a great place to hang out when one starts to panic; this board got me through 15 weeks of chemo, thanks to many of the women here I knew exactly what to expect and do at all times and I am very grateful for the laughs and tears.
I did Dignicap at a time when not a lot of people where doing it, so if you need information please send me a private message and I'll be happy to tell you everything about my experience, which included getting 50% of my treatment subsidised by a wonderful non-profit. Finally I want to share a video of myself this past friday, on my last day of radiation and exactly 9 weeks and 3 days post-chemo, enjoying the warm Miami breeze.
Love and good vibes to everyone here and beyond, with a special shout-out to all the wonderful husbands and boyfriends who help us manage. Remember to be kind to yourself. xo. Edu.
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Thanks, Edu! It is great to see your success
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Tunegrrl, you did awesome! wow! congrats!!!!!!
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Dee - I go as long as I can (as long as my scalp will allow) without washing. And I don't rinse between washes. Only because I feel my hair is at its weakest and most prone to shedding when wet. Also, I use a lot of Shea Moisture products (Jaimaincan black castor oil line) and the team tree tingle conditioner from Trader Joe's.
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Edu - Thank you for taking the time to share your story, your thoughtful words of encouragement and your perspective.
You look lovely and peaceful in your video. I hope you're feeling that way too. My heart always feels a little lighter when I read stories like yours. Tomorrow is my last chemo - #12 (if my counts are acceptable). I'm so tired and truthfully just a train wreck. I don't recognize myself anymore either physically or mentally. I hope I can come back to center. You give me hope.
Do you mind if I ask what chemo protocol you had?
Love and light to you.
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Hey there Willa, congrats on your final chemo, yay! I hope they don't postpone
I promise you will start feeling like your self within the first month. The day I started radiation they took a picture of me at the hospital, I saw it yesterday and I was a completely different person, completely swollen, no eyebrows, sad, tired eyes... Today is a different story, I'm not 100% back because I'm not wonder woman, I did pretty good throughout but I'm still dealing with the aftermath of such an aggressive treatment. But like I said before, it gets better week by week so we have to be patient. I had TCH x 6 rounds, taking Herceptin for a year, 34 rounds of radiation, Lupron for 2 years, Anastrasole for 2 years, and then something else for who knows how long. I don't care, you do what you have to. Good luck with your last chemo!!!! xoxo. 0 -
CONGRATS Kechla and Tunegrll on being done! Amazing results!! So happy for you both! Willa are you done too?! If so a big congrats too:)!!!!!!! Tunegrrl how many infusions did you get ? I have a 7 year old son too but I wasn't as lucky as you w the hair.
EDU you look great !!!!! And thank you dearly for your post I'm on the same road. I had a very difficult ending emotionally with a panic attack MO said it was the shutting down of ovaries. Hormonal drop. I'm not so much sad but angry and trying to accept it. I hope it will get better the more I'm able to get back to a routine I feel like I don't knw what to do with myself I'm lost and resentful. I'm trying to forgive this great trespass in my life but feel pressure to do more things "right "if that makes sense. My 3 kids are a good distraction since I don't work but was planning to go back to school bf all this but still have 2 more surgeries to go and can't plan the future yet. I lost most of my hair during chemo If I had the guts I wanted to shave it all. But wanted to prevent permanent hair loss too.
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Finally finished my chemo and a week and a day pfc. Hair is shedding but it is itching badly. Anyone else have this issue? If so what helped this? Thanks
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Willa216 & Cr77, congrats on finishing up chemo! That's an awesome milestone.
Meow0369 - I'm really sorry to hear that things are so rough for you emotionally right now. I think you have a right to your emotions and should be gentle with yourself on doing things "right." Imagine saying to someone else the thoughts you tell yourself. You would have compassion and wouldn't say to just suck it up, or tell them they're not doing things well enough. You'd be kind and empathetic. So try to be as gentle with your own self talk. I'll be praying for you also. Getting through this process is not easy and you are a strong person for facing it.
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