Cold Caps Users Past and Present, to Save Hair
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So when do I decide the dignicap isn’t doing much? Shedding isn’t the word- there are my hairs everywhere and when I see them I get nauseous.
I understand that i need to treat my head kindly and not brush much but what is there might only being hanging on for dear life until a comb or sweater pills it out.
Luckily the loss is still imperceptible - my massive amount of hair to me looks thinner but I doubt anyone else would notice at this point.
I’d love to put it up just to keep it from hanging like a mop but realize ponytail are not recommended.
I literally have not gone out of the house since last Monday’s no. 2. Have been feeling too spacey.
Weird thing is that my nails are growing like weeds (as they tend to usually do). My clinic has a special spa for mani / pedis but I don’t want to leave the house.
Why are my nails growing? Isn’t chemo supposed kill those cells?
Jut a ramble and rant. First EC was awful for its own reasons but second SEs are lingering.
Does anyone do infrared saunas
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Congrats Shlomit on completing round 1!! First step towards the finish line! I believe in fitness as a healthy partner to treatments....though there are ebbs and flows during my post chemo recovery periods that cause me great fatigue and I give myself grace to rest. After my first treatment in the fall I visited the gym a couple of times and remember driving with my head as close up to the AC vent in my car to try and cool my head down. After that, my Heavy workout gym days were kept for me to my hair washing days because I am a sweat-ER! Then the flu broke out at the gym so I started to avoid it all together and with the cooler temps outside I could get a long and strong walk in followed up by time on my rebounder and some weights with minimal hot head. I'm wondering how I will manage when temps rise again or spring allergies send me back inside. You will figure out what works best for you...and that will probably change several times too!
Amelia-- hang in there-- you are still battling the big shed! It should taper off in the next week. People look at me and say-- wow, you haven't lost any hair! But I know how BIG my hair is and that I have probably lost 1/2 of it at least-- but to others it still looks like a head of hair. Every day I look at what gets combed out and sigh, but I have been so thankful through this process. Don't give up just yet! And my nails are like weeds too! Figuring my dreads cells that are turning over have to go somewhere if not hair. I wasn't expecting it either, and my MO was surprised to see my finger nails so healthy after 5 TC. Also, I have read many capers that wore low ponytails or high sloppy buns. I tend to use French braids as my updo. And lastly, no infrared saunas here. What have you learned to be the benefit from them?
Jo-- you may need to check with the Rapunzel Project to see what the options might be re limited post infusion capping time. Each cap is different, and each case is different (thicker hair keeps on longer). It is my understanding that Some in hospital systems like a Dignicap has very little post chemo wear time. Def check with RapProj for more clarification. Good luck!
Counting down to final chemo on Tuesday!! #6 here I come!! 😃🙏🏻🦋💪🏼
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MamaFelice, thanks for the pearls of wisdom. After a sleep-deprived night (dinner started late, meaning my dexamethasone was late), I spent a bit of time on Amazon and found something (Amazon ASIN: B072M9FTFB) for which my fabulous Arctic Cold Cap orientation nurse gave her blessing. Didn't hurt that I had Amazon credits to pay for it in full, so I splurged for the extra $3.99 1-day delivery. Of course, having been awake about 4 hours during the night, and the Neulasta infusion scheduled for late this afternoon, I took the gym off the table for today; I think my trainer would have encouraged me to make the same decision. Right now, I'm hoping that by Tuesday evening (day 4 post chemo) I'll be able to keep my trainer appointment; he's just looking for me to maintain things the next few months and minimize muscle loss. It'll be lighter weight and more reps, not the single rep 115# bench press he had me doing about 2 weeks ago. Temps are supposed to reach 60 today before diving again during the week, so I'm hoping that maybe I'll just do a short walk about my community.
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Hi Ladies! Hope everyone is enjoying the weekend and staying strong. I am starting chemo (AC+T) on Feb 9th 2018. My infusion center in NYC does not have machine systems so I will need a manual cap. Can anyone advise on a good manual cold cap to order? Is the Penguin Cold Cup good & do the cups come with dry ice? And should I still order a wig? I feel totally clueless right now. I have very long brown wavy hair and hoping to save as much of it as possible
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When I was told I had to do chemo, losing my hair was my worst fear. I am 43 with two young children. I didn't want to frighten them by looking sick and I wanted to maintain working to some extent. I am happy to say that I was the first successful patient using cold caps at my hospital. The nurses and the breast center were so excited. I am on a mission to help others use the cold caps. Ideally the machine would be the best option because it is a big undertaking to use the manual ice caps. The machines need to be installed in more hospitals and covered by insurance!
I had a combo of Taxol/Carboplatin/Herceptin for 6 treatments every three weeks. My hair looked completely normal until the last round when I lost about 25percent of my hair thickness. But I have long blond hair so it still looks really good and much better than being bald. I recommend it for anyone that does not want to go bald and can commit the time, money and energy to the cold caps. I hope to see the day that no cancer patients have to lose their hair and have the cold cap option. It helped me feel not as sick when I was at the the darkest points during chemo
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Ewdubs, thank you for the encouraging post! I too have long, wavy hair and would hate to lose it mostly because it would make me feel more sick
I'm considering the Arctic cold cap since the center I'm going to does not have the machines. I start chemo Feb 9th. Is the brain freeze they talk about really bad??0 -
I used penguin cold caps and was very successful. Follow their instructions to the letter and watch you tube some videos on how to put the caps on. It is a bit confusing the first time so you need a committed partner to put on the caps for you. The timing before and after chemo infusion is important too and getting it on tight. I also only washed my hair for every 2 days. We called penguin a few times to clarify our timing and they were very helpful. Don’t buy a wig, think positive!
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Butterfly, yesterday was my first chemo treatment day, and I'm using the Arctic cold caps. To answer your question, well, yes, the first few minutes of each capping is cold. There's really no getting around it. For me, after about 5 minutes, it numbs up; when the next cap goes on in about 20 minutes, it's like: lather, rinse, repeat, so to speak. This, too, shall pass. Keeping as much of my hair as possible is more important than the short-term cold.
If the "T" in your treatment is taxotere (or whatever name it goes by), you'll also want to consider icing your fingernails and toenails; for me, it was 1 hour of the "T" and at the suggestion of the infusion nurses, I held on for an additional 15 minutes.
My infusion center doesn't have the machines; my MO indicated they're on a waiting list and it's not a short list, either. Although the web site for Arctic indicates they have nurses in the Philly area to assist w/1st day orientation, if you call and chat with them, I believe they also have nurses available (it's extra $) to work with you and your capping buddy in the NYC area. I'm in the Washington, DC area, and they have a nurse based in the Baltimore area who met us at the infusion center yesterday, and worked with us until we left to go back to my home to finish the capping (which continues for 4 hours after the infusion finishes). Nurse Kelly was a real gem, and really got me off to a great start.0 -
How expensive were the hospitals cold cap system? My hospital has the dignicap system. I would like a general idea of the cost prior to contacting them. My BMX and SNB is scheduled for Monday the 29th I believe my chemo will start February 8th. Taxol 1x wk for 12 wks and herceptin every 3 weeks. This could change based on path report post-op
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Ewdubs - i like your positive attidude! No buying wigs for me if I'm getting the cold caps!
Shlomit - the T in my regimen is Taxol. I was told by my MO it is easier on the nails but I should expect to see some neuropathy. Yuk.
I actually spoke with both Penguin and Arctic yesterday. Both seemed very cordial and professional. I did see a site though that suggests that cold caps may interfere with the effectiveness of the chemo drug in that area. Anyone heard of that?
Also, are/were you ladies able to continue working during chemo? I have a desk job 20 min commute from my house and am truly hoping I can manage to keep work schedule during treatment.
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Butterfly, medically, I'm certainly not qualified to comment on the impact of cold capping on the effectiveness of chemo. I've seen some articles going back to the early days of cold capping regarding the risk of recurrence of cancer on the scalp vs. elsewhere and the risk to the scalp is supposed to be lower than elsewhere. You should discuss this with your MO, though.
Workwise, I'm only 2 days out from my 1st treatment and word has it that days 3 and 4 could be different. Once the hiccups get fixed with the remote access to my office computer, I have work from home options when needed. My commute is a bit longer than 20 minutes and I don't want to get to the office and find I can't get home. As they say: your mileage may vary.
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Cappers: How advisable is it to sleep (with satin pillow cases, of course) with a light hair net or satin/smooth cap vs. simply head on pillow.
I've got one more day until my first post-chemo wet hair wash, and last washed it 3 days before chemo. Just gave a few light sprays with Bumble and Bumble to tide me over (first post-chemo dry shampoo). Had a few hairs in the wide tooth comb, but considering how little I've done to the hair, I'm figuring this is just normal stuff.
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Butterfly-- Def discuss capping with your MO. Mine was fine with me using as with moats all of us on this thread. Also, I was able to keep up with more after my first 4 TC treatments, but much more tired after #5 and expecting similarly after #6. So I think you will have to play it by ear and listen to your body when it comes to work. I also opted out of Neulasta shot, giving my body the opportunity to rebound on its own. This probably added to my tiredness. Good luck
Shlomit-- I sleep with a hair net that I purchased on Amazon along with silk pillowcase. Happy to post link to hairnet if you would like. I use them under my PCCs too so hair doesn't get caught in Velcro. Any hairs you are losing now are normal. You will know when it all begins-- somewhere around day 17-22, and then you will have some form of shed from there. I feel like I am covered with hairs daily, yet still hair remains on my head.
Final chemo on Tuesday-- here I come!! Yay!! 🙏🏻😃🦋
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Forgot to add....
jo6359-- I used caps not hospital system, but capping is certainly an extra expense....one that I am blessed my family gifted to me. But with PCC, I used the discount caps and with dry ice, it was about $350/month. So can cost more depending on length of treatment too. Best wishes!!
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Thank you ladies for your feedback! Will def call my MO to ask about the cold caps tomorrow!
Shlomit - good luck with getting your remote access for work set up. Hope everything goes smooth!
MamaFelice - congrats you're almost done with chemo! YOU DID IT!
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MamaFelice, first of all, Mazel Tov (congratulations) on reaching your final chemo!!!
When you have a chance, please share the Amazon link for the net you purchased. I've been really appreciating my Prime membership lately. Arctic sent a bunch of very thin nets to use with their caps, which was fine for that purpose, but sleeping in them really flattens my hair, even on the satin pillow cases (won't use anything else right now; even have an extra one to cover my rolled towel I use at the gym to support my head).0 -
I just found this clinical trial on breastcancertrials.org
Penguin Cold Caps to Prevent Hair Loss in Breast Cancer Patients Receiving Chemotherapy
A Phase 2 Study to Assess the Safety and Efficacy of Scalp Cooling Using PenguinTM Cold Caps for the Prevention or Reduction of Chemotherapy-induced Alopecia in Stage I-III Breast Cancer (NCT03289364)
Summary
To take part in this study, you must have early stage (stage I-III) breast cancer and be receiving chemotherapy before or after surgery. This study is investigating how well Penguin cold caps prevent or reduce hair loss in patients receiving chemotherapy for early-stage breast cancer. Penguin cold caps are portable, gel-filled caps that are cooled on dry ice and exchanged every 30 minutes in order to maintain an optimum cool temperature throughout a chemotherapy infusion. If you take part in this study, you will be enrolled at Providence Portland Medical Center (PPMC) or Providence St. Vincent Medical Center (PSVMC) in Oregon.
Sadly one side in Portland Oregon.
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Thanks for the love ladies!! Can't wait to post all done in a couple of days!
Here is the link to the hair nets I have used.... for under my caps, to sleep in, cook in, and just wear to keep my hair up if feeling hot! 😉
https://www.amazon.com/gp/product/B00O2BSXYS/ref=oh_aui_detailpage_o05_s00?ie=UTF8&psc=1
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Hi everyone! It’s been since July 27 since I finished my ACT regimen. I did 6 weeks of radiation after. I Cold capped 16 times. I really struggled with the cold and side effects from chemo but I would do it again in a heart beat. I lost at least 60% of my hair but kept it from March until mid June. It thinned a lot after that but I used toppix and that helped so much. I used PCC.
I just wanted to check back in and say I have a few inches of growth. I am taking the Costco biotin. I did cut the stringy chemo hair off the bottom and I put in hair extensions after but I was able to do this because I Cold capped. Friends i made through chemo still have very short hair like an inch.
I know I protected my hair follicles and it is growing like crazy. Here is an updated pic. It’s not easy but I feel like myself more every day and the pain from chemo is starting to leave. I do acupuncture 2 times a week and physical therapy once. I used castor oil on my brows during chemo at night and bought latisse for my lashes. Stay strong you got this! 💪🏻
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MJPow - you look so beautiful and I would never guess you had gone through chemo! Thanks for popping in and sharing your capping success and progress PFC.
I'm 4months PFC after 4 sessions of TC and feel like my hair loss is back to normal, pre-chemo levels with gentle washing and warm water. I would love to blow dry/style my hair with low heat and low pressure air flow, plus gentle hand styling... when did you start using a blow dryer or other styling products? This weekend, I emailed penguin to ask, but would love to hear from someone's past experience too!
Willow
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willow- thank u so much. I have been blow drying for a few months. I have Been blow drying my hair since about a month after finishing chemo. I also brushed it and use hair products and never have any hair come out on my hairbrush.
The only problem that I have is that my hair is so curly and my extensions our straight so it looks very funny because I have curls that jet out everywhere around my extensions so I have to use a straightener LOL.
I know penguin recommends not doing anything for months after but I have been doing it and I have had no issues.
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Thank you @Willow22, @Ewdubs and @Vivianlu for your advice.
Congrats @MJPow you're so beautiful. Good job!
My experience from my first chemo in 2014: I washed my hair only once a week with a special hair shampoo during my 12 weekly Taxol. My do was like a mess the first two weeks but after that it was almost ok. I didn't use a silk pillow but each morning I did only 3 knocks of combs on my bobbed hairstyle (yes, ladies, you read well!). The caps I used were offered by the hospital and not as good quality as Penguin (didn't fit well the scalp). At the end, I think I had 80% of my hear on my scalp. But the shedding post chemo was scary (began 3 weeks after). At the worst, I only had 60-65% of my hair. Then, after 3 months, the shed stopped.
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MamaFelice - thinking of you at your LAST chemo today! You've got this
MJPow - thanks for sharing about blow drying and styling! hearing your success gives me the confidence to try it myself .
I heard back from Geralyn at Penguin about styling, saying the same thing.... "You should be able to blow dry your hair and change shampoo etc by now if the condition of your hair has improved and shedding from chemo has stopped. Just take baby steps when trying new things . the important thing to remember is no chemicals for 6 months after chemo."
I am going to color 2 weeks early (gentle Paul Mitchell semi-permanent color recommended by my stylist) because I really want the grey gone before our March trip.... 2 weeks out of 6 months doesn't seem like it would make a difference, but I feel a bit nervous after everything we've done to protect my hair!
Hugs,
Willow
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It’s been a while since I’ve posted. I have completed 5 of 6 TC and SE have been getting more difficult but I’m so excited to be having my last chemo on Feb 6! I’m capping with PCC and I haven't lost any patches of hair, just a tremendous amount of shedding. I have thin hair to begin with and I'm concerned that anymore shedding won't leave me with much. I have already lost about 50% of my hair. I shed every 21 days or so after chemo. I‘ve read there is continued shedding even months after chemo. I keep trying to remind myself that I would be bald right now if not for the caps.
MamaFelice- I responded to your pm. How are you doing my 6 TC sister? I am so excited for you that you are done tomorrow! You are always so positive but sometimes you just have to cry. Ring that bell tomorrow
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Wired from the pre-chemo steroids!
So glad to hear from you Willow! And thank you for your kind wishes with #6!! Also appreciate you reaching out to PCC with our follow up questions. Guess that seems fair to take baby steps as shedding tapers off. I'm certainly looking forward to that warmer water! I think adding color 2 weeks early is not going to make a difference. Please post pics after you do. I know you will feel much better having that done. I'm lucky to not have much gray yet...thank you Dad's genes who graded at 60... but cool thing is that you can see your growth since chemo started. That's pretty cool! Def take a before pic for your records. I'm looking forward to ringing that bell tomorrow and mailing back these caps the next day! ☺️
Bett--ItsStillMe--I just sent you a PM-- thank you for touching base with all of us! I'm so glad we are both coming down the homestretch together! The extra 2 TC treatments have been a unwelcome addition, but we made it! Fingers crossed our hair keeps hangin in there with PFC shedding. I'm like you where I seem to shed a good deal at day 21 after each treatment. I'll have lighter days and heavier days. Curious to see how things will continue after the next month. My friends all want to take me to get sushi dinner (I have sooo missed my sushi) next week and I have to remind them that even though the treatment is over, I still have 3 weeks of SEs to get through and make sure my WBC is back up before celebrating with raw sushi.
Well, I'm off to try and get shut eye. Here is a pic I took earlier of top of my head....still going strong!
Love and hugs to you all! 🙏🏻💪🏼☺️🦋
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willow- I colored my hair 2 months after!! For me it was fine. I’ve colored it a few times!
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My MO whispered of some natural henna colorings that she thinks are fine even during treatment.
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Jumping on to wish MammaFelice all the best on being D O N E with chemo!! RING THAT BELL, GIRL! WHOO HOOOOOO!!!!!!!!
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Way to go MamaFelice!!!!! Whoooo Hooooo bells and whistles and all the joy and blessings to you!!!
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Way to go MamaFelice!!!!! Whoooo Hooooo bells and whistles and all the joy and blessings to you!!!
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