Cold Caps Users Past and Present, to Save Hair
Comments
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Ang7- Congratulations on your last herceptin!!! My last one was Monday. Its great to be finished but a little scary too!!!! Enjoy!!!0
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Thanks so much for being there through all this you all...
MaryEllen~
Congrats on your last Herceptin also. I feel like you and I have had a similar path in the last year. I spoke to my onc. about fear of recurrence. She said "Breathe and take each day as it comes..."
I cannot wait to get my port out.
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Hi motherofpatient, I sent you email including my method for the caps. I used 100# of dry ice per treatment but it might depend on the number of caps and coolers you are using. (I have below-shoulder-length hair and used 14 caps at -32C.) Please don't hesitate to contact me if you need support or assistance! There is a special place in heaven or Nirvana for the PCC helpers.
Btw, my re-growing hair is coming in super-curly. I have kinky curlies at the nape of my neck and around my ears. They're cute!
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I know I am over anxious about this - wish I were able to take my daughter's place. Still burst into tears at any moment. What brand of coolers do you ladies recommend? I looked at Coleman Extreme 6 and Yetti - so much hype it's hard to get real facts. Did anyone use battery operated heat socks or those heated jackets the sporting goods stores have? Did everyone use dry ice? How big are the individual boxes for each cap?
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motherofpatient:
I bought 2 new coolers and they both are really good at keeping the cold in.
Coleman Wheeled Xtreme 5, 50 quart bought at Walmart
Igloo Maxcold Island Breeze Roller 50 Quart bought at Target
They hold 5 caps each with dry ice. I buy 45 - 60 pounds and spread between 3 coolers. My other cooler fits the extra 4 and it's an old cooler 36 quart, so once a cap comes out of the good ones, we switch unused into the good coolers. Last 2 rounds I actually made it work with 10 caps. So, next time I'm not even bringing the 3rd cooler or caps. I'm planning to use 50 pounds of dry ice between the 2 coolers to make sure I have enough for the used caps to get cold again. Your first time I'd go higher with the dry ice to be safe and then you can decide how much you think you need next time. So, go with at least 60.
If you can find a place that sells pellets, they are fantastic. No need to break up the slabs with a hammer. If not, I have done the breaking up of slabs for a friend and it still works well, just more work and make sure you get it broken up fairly small so you can put ice on bottom, top and in between the caps. The plastic bins are approx 9 x 4 x 7 inches. Very key to get coverage all around the caps. We found last week when helping a friend that the sides of the caps were not cold enough while the middle was, we made sure to bury the caps better making sure ice was all around each bin.
I have experience on both sides of the caps now. I'm still doing them, 4 rounds done, 2 more to go and my hair is still here. I'm helping a friend who just finished #2 last week and she's doing well so far too.
As for staying warm, I just wear a zip up sweatshirt and then have a blanket that I put on about half way through as it gets colder over time. Some women have been very cold and use an electric blanket. You get the shivers, but for me it wasn't so much being cold just shivering.
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Motherofpatient: Depending on your daughter's chemo (I was on TC), it might be recommended to also ice the toes and fingernails to prevent the chemo from damaging the nails and also to prevent neuropathy. So I did not use heated socks; instead I was putting ice packs in my socks near my toes. And also in my mittens (actually, I used orphan socks instead of my real mittens). Heated blankets can be great. I dressed in layers because I was going through chemo spring and summer. I too had the shivers as each cap went on ( and it built up through each session so that at the end I had the biggest shivers of all), but the activity was a fantastic distraction -- not just my own activity of swapping the caps, but all of the lookie-loos (patients and nurses) who stopped by to see what the heck I was up to. I made many friends, it's like having a whole team cheering for you.
My warmth came from layers of clothes (a camisol, my favorite corduroy shirt, my favorite fleece jacket), and my favorite good luck shawl from the person who taught me to meditate years ago.
Stay positive! Crying is a good release, let those tears flow! There's no such thing as overanxious in this case, but don't keep it inside!! When the tears stop, take a very deep breath and please realize how fortunate you and your daughter are to have found out about Penguin Cold Caps, not to mention all the advances we are benefitting from compared to breast cancer patients 10 or even 5 years ago. I was thinking about this because Thanksgiving is coming up, and this week was the 1-year anniversary of the event that led to me finding my lump. It seems every step of my journey, from the Oncotype test, the Vitamin D test, the surgery type, the type of chemo, the type of radiation -- all are relatively new standards of care for my diagnosis. I am thankful for the women who participated in the studies and trials to make these things happen, and I'm glad to be part of this group of pioneering women making the Penguin Cold Caps available so that women including your daughter will not have to lose their hair as a side effect of chemo.
You and your daughter are tackling her diagnosis head-on and doing everything possible, together. You are managing this treatment, it will not manage you. That is key!
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Hi everyone, I need some supportive words and encouragement :-) I am 11 days post my first TC treatment and seem to have high anxiety around" will they or wont they work." In my heart, I know that I have done everything in my power and that it will be a success, that you all are the PROOF IN THE PUDDING but it can't stop the fear for some reason.
My scalp itches ( I do think I "ice burned" it) and tingles every so often... I'm wearing a cap out of the freezer once a day too. So this concerns me.
Haven't heard from zlota and bernbird and wondering how their journey is going. You all are about two weeks ahead of me in your treatment.
Help?? me get off the ledge...:)
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Hi everyone! Sorry I haven't been on here in a while.
I did want to say a belated congratulations to Cheyenna for being all done with chemo and Congratulations to Ang and Shadowfor being done with herceptin. I wonder what that will feel like. I'm about half way through.
I also wanted to talk Lmflynnoff the ledge. I very much remember being exactly where you are. I called my mom every other day (she was one of my helpers) and questioned her incessantly on whether or not she thought we did a good enough job on the caps. I was so nervous I could hardly function wondering what was going to happen. I don't think the scalp tingling is any indication that hair is about to fall out. It is most likely due to scalp dryness from the ice and the no conditioning/limited shampooing and the fact that chemo is just drying in general. I'm wondering if perhaps you should give your scalp a little rest from wearing the cap every day out of the freezer. Not sure. I didn't wear it out of the freezer very much at all as this gave me more of a headache than wearing them during treatment - strange I know.
Colleen - how are you doing?
motherofpatient - how great of you to be on here and proactive on behalf of your daughter. My mother was one of my helpers and she did great. I figured no one cares about me more than my mother so she will do the best job. I'm so thankful she is young enough to handle all of this (she is 67).
Good luck to everyone just starting out on their journey.
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hi ti all
lmflynn- 20 days post my first treatment, getting round #2 tomorrow-ugh- and still have all of my hair, some shedding but very little, if i pull around hairline they are weak and i end up with 5 or 10 in my fingers but no clumps and even when i use a comb there is nothing thats coming out-yey- hope i won't loose it, hope we all won't. i got some iching and tinglling on my scalp also but i think its more due to us being very aware of the whole scalp , hair etc... than hair actually falling out, i should be loosing by now and i'm not. just this morning i spoke with a secretary at my kids school that was diagnosed 2 years ago and ahe said she didn't have most of her hair by her 2nd treatment. i know you are nervous im too, im scared whats going to happen next week post my sencond round, all these ifs and but's but im hopefull....
also, i didn't know we should wear the caps each day for little bit i'm not doing it, should i?
thank you ladies
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lmflynn: Have faith and keep up the good work. I live in fear of it falling out as well, but I'm at 4 out of 6 treatments done and my hair is still here. Just lots of shedding, but nothing noticeable gone from my head.
I haven't heard of wearing the caps out of the freezer in between treatments? Did Frank tell you to do that?
Gearing up for #5 tomorrow. Can't believe I'm still achey and tired! Plus, I have neuropathy setting in. Can't hold a pill in my hand very well and my left small toes are numb. Isn't Chemo wonderful?
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michcon- getting my # 2 tomorrow and i also didn't know about wearing caps in between...
Do you ladies wear them in between treatments? Frank never mentioned anything about that.
if you do how often and for how long?
thanks
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Thank you all so much!!! I really needed to hear from you. Frank did send me my schedule with recommendation to wear caps out of regular freezer to stimulate scalp. When I get home I'll get it and send to everyone.
You all are the best!0 -
Hi Ladies~
I heard from someone who is using the Penguin Cold Caps now that Frank said it is a new suggestion to wear them out of the freezer on some days. I never had that so it must be new information. My friend is wearing them every other day for about an hour. I do not know if this is based on her hair type etc.
My scalp tingled a couple days after every chemo. I am the one who woke up each day and looked at her pillow first thing all during chemo. Drove my hubby crazy!
I was told if you still have your hair after 21 days than the Caps are working for you...
Good thoughts going out to all of you.
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Zlota~ Thanks for updating -- so good to hear things are going well (re: your hair!) Good luck at treatment#2. Mine is 12/2. Just starting to feel "normal" again from #1. Glad I will feel OK for Thanksgiving. #3 is 12/23 so I've already figured X-mas is going to be "not normal"
Michon~ Good luck at #5. In a way you might feel relief after as you will have only 1 left! Not sure how you feel about it, but I know I'm thinking after my next one I'm 50% done, etc.. maybe I'm a math nut -- but it helps me. Also, are you doing anything specific for the neuropathy? I have it very slight now, and think it is cumulative? I have read about taking acetyl l-carnitine for it?
All - Re: wearing the caps between treatments. Do think this may be something new Frank's recommending. He says to wear them straight out of the home freezer for 30-60minutes a day. If you want to go for 60 minutes -- change at 30 minutes. It wasn't a MUST DO by any means, but a you might want to try... as it stumulates the follicle?? Let's hope it doesn't do damage as obviously works without doing this.... :-)
I have taken one step back from the ledge THANKS all! Still counting down to 21 days..... I have 9 left.....
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Hi to all. Just a quick update. My last infusion of TC was on Jun. 3. My hair and I are pretty much back to normal now. It's interesting to note how much shedding did occur. It seems to me now, looking back, that the shedding was noticeable on my comb but not on my head. As the new hair grows in and gets longer I find myself looking in the mirror and realizing "Oh wow, I have a widow's peak again." I did'nt really notice when it went away. Likewise sideburns and nape of the neck areas. The shedding really was quite subtle. I think now that if I hadn't seen the hair on my comb I would be just like everyone around me and would not have been able to notice any difference in the appearance of my hair.
Lmflynn, Just a few more days and then you'll really be able to relax. I know what you mean about the scalp tingling. It's pretty distressing. I actually experienced a crawling sensation (really creepy) that I was just sure was the harbinger of imminent baldness but the PCCs did their job and I kept a full head of thick, wavy, nearly waist length blond hair. Yes, shedding happens but only you and your comb will know the difference.
michon, For neuropathy I took Vitamin B6. It was a 100mg tablet that I took daily in addition to multivitamins and other supplements that my onc allowed. It really made a difference for me. The only neurological SEs I had to deal with were twitchy eyelids and weird sore feet that felt as if I had been standing on concrete all day. Those resolved quickly as soon as chemo was over. Anyway, B6 is worth a try. It's cheap, easy to get, it can't hurt you and it may solve your neuropathy. I found out about it on the Taxotere/Cytoxan thread here at bc.org. I checked it out with my onc and he said "Yes, B6 can help."
Does anyone have details on the UCSF study? I'm curious as to how that is progressing and what methods they are using that might be incorporated by PCC users at large.
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Drim- I'm finished rad #23 of 25 (regulars) and then I have 8 "boosts." My big issue is waiting for my onc appointment tomorrow (Tuesday) where I find out if I will do more chemo. At my appt last month the onc commented that once radiation was done we should consider doing 4 rounds of Doxil (1 treatment per month). This wasn't a well developed conversation and I am inferring that this is a precautionary use of chemo since I am triple negative.
FYI--in the small world arena. A woman who lives 1 street over from me saw the GMA story. The following week my local paper ran a story of my use of cold caps. She tracked me down and we talked about the process. She had already contacted Frank and did the questionnaire. She had a double mx last month and will start chemo in Dec. She knows of this site. Another person to join our penguin flock!
Finally, needed to get my hair cut for the second time since doing chemo (July - Sept). The ends were really ratty. And my regrowth where my hair thinned is causing styling challenges -- but hey I still have a full head of hair that reaches my collar. And some colleagues have "politely" suggested is a better length for a woman my age!
Colleen
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Newbride: Glad to hear you are getting back to "normal". That's what we all hope for, or at least what can be normal now. Thanks for the tip on B6, just went and got some.
Cheyenna, Ang and Shadow: Congrats!
This site has been so helpful to me. Thank you all for keeping me going and for keeping my sanity.
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Hi lymflynn, I too had that anxiety...in fact, it remained throughout chemo and even beyond my final chemo! despite the fact that I had a full head of hair throughout. Like NewBride, I also have my widow's peak back (I missed it!) and lots of little curlyques all over my head where hair is regrowing. I had tingling and itching the first few weeks, in retrospect due to the drying effect on my scalp (lots of flakiness the 2nd/3rd weeks but it stopped) and because I was only washing once/week. My hair got used to the less frequent washings. As of last week I am back to warm showers and daily washes -- what a luxury.
Between infusions, I didn't wear the cap out of the freezer -- didn't hear about that until I was nearing the end of chemo I think -- but Frank is constantly making new improvements in the protocol. My daily swim was a good one-hour immersed in cold water every day, and any cold will stimulate hair growth (chemo or not). I'd say it's a matter of personal comfort. It turns out my hair was re-growing during chemo even without wearing the cap between infusions. Don't know if it was due to the swimming or would have happened anyway.
michcon: I iced my fingers and toes, used acupuncture, and took L-glutamine to prevent neuropathy. My nurses encouraged me to use acupuncture and L-glutamine even before chemo started, to get ahead of its effects. I LOVE acupuncture and continue to use it (and I just discovered that my health insurance covers it, so I'm going to try to claim a refund from them....oh boy, wish me luck...) It's a great feeling to know you've only got one more to go! Congratulations!
Drim: nice to see you online! PM me and let me know how your current treatment is going.
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Hi,
Just got back from the oncologist and he is NOT recommending any more chemo. I'm monitored every 3 months and if something develops then we'll treat it but there isn't any percentage in doing more chemo when there is no definite evidence that there is cancer.What great news before Thanksgiving
Colleen
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Hi All,
My last chemo (of 6) was yesterday and I have a full head of hair, thanks to the Penguin Cold Caps. I live in Washington, DC and the Washington Post (a reporter and photographer/videographer) came to my last treatment. A story will appear in the Post in December, we think. I hope Frank can handle more business!
My question is how to treat my hair over the next several months. The PCC website offers some tips, but it would be helpful to know how many weeks or months to wait before washing my hair more frequently, using warmer water, blow drying my hair, getting my hair cut, and dying my hair again. I'd love to know your experiences and suggestions.
Thanks!
Katherine
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Hi Katherine,Congratulations on completing treatment! My last chemo was June 21, and I continued to use cold water and once-twice weekly hairwash until a few weeks ago (about 4-5 months post chemo). I shed well beyond the three-week mark after final chemo so continued pampering it in terms of hairwashes and cold. (That final chemo knocked out much of my eyebrows, briefly.) I am now doing a daily warm-water regular shampoo and it feels like luxury after so many months of cold water!Thanks for letting the WP reporter follow you; I am excited to see word getting out in a bigger way. I have been very busy since the Good Morning America story, and am glad for it!Susan0
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Thanks to all of you who responded. My daughter had to stay overnight, one positive node and half of the fat pad removed. She has some questions about the cold caps. I understood that washing her hair is limited to a few days before chemo and a few days after. Pulling with a comb can cause hair loss, so her question is how do you style your hair? Hers is shoulder length and she is usually washes it several times a week so she is concerned about how to keep it looking nice when she goes to work. Also, I was told she should use Pure shampoo. Any advice?
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Motherofpatient - I also had shoulder length hair and I just pulled it back into a ponytail. I was out on disability so I really wasn't concerned with my appearance. Besides the Pure Shampoo I have a couple of conditioning products. These products were recommended either from the Penguin website or Rapunzel Project. Kendra Lightweight Leave-In Conditioner and Kendra Botantical Detangler were the first ones I used. Both make it easy to get a comb (wide tooth) through the hair. Both product readily available at my local beauty supply shops. Then about 6 weeks after my last chemo I noticed another recommended product "Sea-Chi Leave On Moisturing Treatment and Hair Growth Forumula." I was skeptical of the hair growth claim and the product is expensive, but I was anxious to have my thinning/bald spot fill in (FYI--the bald spot was still covered over by hair, I just knew that the area had thinned excessively and the scalp showed if my hair was combed the wrong way).
Maybe it is just happenstance that after using Sea-CHi for a week I notice color on my scalp in my one bald spot and that the hair would have come back in anyway, but I am willing to give some credence to the hair growth claim. Google Sea-Chi for the website. I bought it online.
BTW--although you cannot shampoo your hair right after chemo, I did use cold water and wet my hair down. This cools the scalp without putting any chemicals on the scalp.
Colleen
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Hi everyone -- thanks again for all the encourgement. I'm at day 13 and still anxious but trying to stay off the ledge! I am getting the flakiness (pretty bad) maybe that's what caused all the itching. Love hearing so many people are done with treatment and had such a success! Hope the Washington Post writes a great story!
For motherofpatient ~ want to say-- what a blessing for your daughter to have you - to help with all the questions and have the support. Since going through it now thought I'd share my experience - I'm washing my hair minimally -- can't wait for tomorrow as I'm waiting for Thanksgiving dinner so I can have a "good" hair day. My hair is shoulder length and naturally pretty oily so its been a little of a challenge -- one that I am completely thankful to have to deal with mind you -- but I will wear thick head bands (that are loose not tight on the head,) and went and bought those clips that bend to snap in place and pull my bangs to the side and let the rest hang down. It's not going to look great on certain days but will be presentable. When talking with others -- some wash their hair 2x / week -- althought Frank recommmends once -- your daughter could time it so that most of the week her hair would look nicer for work. Plus I think Susan mentioned -- your hair gets used to not being washed so much and adjusts and the chemo dries it out as well.
Good Luck and I keep telling myself the short-term nuianances are worth the end result.
I have been taking showers regularly and when I first get in rinse my hair in cold water so that my head is cool but I can take a warm shower without worrying about my head getting too warm. Then rinse again in cold water. Just let my hair air dry.
Hope it helps .. sure others will respond as well.
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Hey cmksocal~
I have been using the Sea-Chi products since being done with my chemo and I think I can tell a difference in the growth of the hair by my ears. It actually seems to be growing faster than the rest of my hair!
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Ang7 - which Sea-Chi products are you using? I have a coupon to use.
Colleen
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I just purchased the Sea-Chi - Leave in conditioner on line. I'm assuming I can't use it until after my treatmeents. Anyone use it during?
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Motherofpatient-
I was very concerned about this too...how my hair would look since i to work everyday...minus infusion day. anyway, i have shoulder length hair and have always straigntend my hair with a straightening iron. i have naturally wavy/curly hair which i prefer straight....i have mangaged this very well and my hair has really adapted. i wash once a week since i ahve weekly chemo. i have chemo on wednesdays and i wash every saturday. i use pure shampoo and let it air dry....i then use the same barrett clips someone else suggested and got them at walgreens they hold my whole ponytail without a problem and i have normal to thick hair. the first few weeks i had lots of problems iwth dry scalp and looked flaky on top of my head so i had a friend make a few cloth hair headbands that i tie around my head and a bow underneith and then still do the pony tail. it works out very well...now my hair must be used to this treatment im 6 weeks done with weekly taxol out of 12 weeks....have had NO HAIR LOSS!! yay! and my hair looks healthy and not flaky anymore! come back with any questions we are here to help!!
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I use the Sea-Chi Leave on treatment & hair growth formula and also the Peppermint Shampoo (I like how it smells.)
On a side note, I also really like the Calendula Creme Facial Cleanser.
Costs alot but seems to be working. I only started using this after chemo. I used the Regis stuff during chemo.
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Hi lmflynn,
That's the same method I used for my shower: turn it on cold, get my head soaked to get my hair wet, then use warm water on the rest of my body. Then I'd have a last quick, cold rinse again.
Motherofpatient: I have below-shoulder (layered) hair and wear it down, occasionally in a clip or ponytail depending on my activities. Into the second chemo, my hair seemed to adjust to the once/week washing. The flaking also ended then (and never came back), so days 5/6 between washings I'd wear my hair up if it bothered me. I planned my most social activities for the couple of days after I'd washed my hair if I could. It's only for a short time, and worth it.
Susan
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