Cold Caps Users Past and Present, to Save Hair
Comments
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A quick question--reading through some of the old threads------do we use the caps 2 hours post chemo or 4 hours post chemo--I have been doing 4-----???
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I've been doing 4 hours post chemo -- wow 2 would be nice!
) but I THINK it's 4.0 -
About post-chemo timing:
Yes, the correct time is 4 hours. But here's something that might be encouraging to some. I've been helping someone with the caps whose doing TCH. She's got it timed so that Herceptin is last to be infused. Since Herceptin is not considered chemo (and does not cause hair loss), that last hour of Herceptin counts as post-chemo time, so she only does 3 hours of caps at home.
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Yes the correct amount is 4 hours post chemo
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Thanks everyone--my herceptin is always last--and the car ride is an hour home--so not too much to do once we are home---just thought I would check!!
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Thanks for the updates from past users!!! Wonderful information. Hadn't heard about not trimming hair until shedding stops... really really want to color my hair but will wait at least 2 months to do this.
Still shedding... 18 days PFC .... (Day 81
) I have caught a cold or the flu so missed my hairwash day... think it needed a rest anyway... 0 -
Hi all,
I am helping a lady who is going through cancer, but not BC. She is using the Penguin Cold Caps and was very upset today because the day of her chemo the power went out and during her chemo her caps were all different temps. She is ready to give up but I told her that just because the first one did not work out perfectly, does not mean she will lose her hair.
Am I right?
She did wear caps the whole time and I told her that is better than nothing.
I am trying to keep her positive. ( Though you all know I was not very positive when I was going through it.)
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Ang7~ How good of you to help someone else! I don't know the answer for you... it may depend on type of chemo and also what the temps were. The Dignicaps only go to -5 -- but your hair is wet -- so I'm assuming that there is some variance that would let the caps work at a few lower temps...
I will say in a way -- after reading somme of the "horror" stories of power going out, freezers broken, caps too warm in freezers -- that I am happy i had to buy the dry ice and temps were more in my control... you don't use the caps lightly and it is a big decision -- and then to have these things happen would be disheartening to say the least.
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Dear all,
As a researcher, former cancer patient, and a participant at the coldcaps discussion board, I have become interested in learning more about patients' reactions to the information they receive as they are diagnosed and presented with treatment plans that involve chemotherapy.
This interest has led to the development of a survey that asks about experiences with patient education materials provided at oncology centers across the nation. This is a formal study, and the research protocol has been approved by the Institutional Review Board at Brown University, where I am on the faculty of the Division of Biology and Medicine.
The survey is anonymous and brief. It will take you about 15 minutes to complete the survey.
To participate in this research, here is the link:
http://www.surveymonkey.com/s/PatientEducationMaterial
Your participation will add to the body of information on this topic and is intended to contribute valuable data regarding patient education materials for oncology patients.
Above all, I hope you are well.
Warmest regards,Marjorie
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Hey Marjorie~
Hope the survey will help further the Penguin Cold Cap for all ladies...
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Ang,
The survey's scope goes well beyond cold caps, but in that "hair loss" is a side effect of chemo , and scalp cooling is a remedy, it is certainly one of items that could be addressed in patient education materials.
I hope that participants on this Discussion board (since its inception in June 2009!) will do the survey; should any be aware of others to whom the link could be extended, that is also fine.
All will be PM'd about this too..ah, for the full inbox!
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I found the survey to be a very thoughtful one...
Thanks Marjorie!
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Hi - just did my second round of TCH today. All went well. I still have hair! we did decide to do one of the eyebrow strips under the nape of my neck, due to my melon-head and the fact that the caps are too small for me! This is where ALL my shedding has occurred. I am excited to see if it works.
So, question for those with freezers. We are fortunate (THANK YOU RAPUNZEL PROJECT) to have a freezer at our oncology clinic. Today we came in the temp was -34 when we entered the room. After about five hours into it we noticed that the air temp in the freezer went to -28%. My husband called the service number. They told him that the freezer goes into a defrost mode every six hours. They did not say how long it would last or how to address. He simply said this is what it does. My husabnd ended up trying to override this and putting on the fan. Not sure what occured in the process of hitting all the buttons. The freezer temp did go back down to -31.
Has anyone experienced this? Any recommendations?I wonder if I will have hair loss due to this...can not imagine that the actual boxed cold caps would lose their temp that quickly. We will see!
Still happy I am doing this! People think I look so "healthy"!!!
Sweet dreams tonight!
Annie
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Hi all,
finished 2nd round ot TCH today and all went well. only problem was Decadron kept me up all night before chemo and did not sleep for even 5 minutes. Had to get up at 6Am anyway to be there by 8:30. My Dr. said to drop the night time pill on day after chemo and only take morning pills so I can sleep.
Frank said freezer goes into defrost mode every 12 hours and not every 6 hours. If it is doing it every 6 hrs, it needs to be corrected. Call Frank and let him know. Also do not put used caps back in freezer until you are done, the warmed caps (after use they get warmer) raise the temp in the freezer. Only put a cap back if you need to reuse it that day.
I had that problem the 1st day and it worked fine for me. Haven't lost my hair. I also took 4 caps home and used them for 2 hours,changing every 30 min. for 5 days after chemo and at least 3x a week after that, but mostly every other day until I had to return the caps to hospital freezer a few days before 2nd treatment to get them to -32 celcius. Home freezer only got them to -10 or -11 celcius.
Keep positive!!
Nancy
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Nancy, does your chemo center charge extra for using the caps? I am concerned that it is so expensive to rent them and then buy the ice each time that many people can't afford to use them.
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Hi all,
I'm a week post my 5th TCH and still have my hair. Shedding is minimal and lost around my ears but thats it, 1 more chemo to go and I'm done, can't wait.
Ladies you will keep your hair, I did, I know I still have one more but if I still have hair post 5th tratment 1 more isn't going to make them fall out.
Other side effects from chemo awful, nails hurt and I'm super tired but hey my hair is still there, make this process so much easier.
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Hi everyone~
zlota -- good to hear from you...so glad things are going well ... only one more -- GOOD FOR YOU!
Tomorrow is 3 weeks PFC for me .. my hair continues to shed..although it still looks OK. I get these feelings on my head that feel like the follicle is letting the hair go... I know is that crazy? I caught the flu and had a fever for two days -- and I also think that high temp was bad for my hair... no I'm not obsessed or anything
Wanted to let everyone know also that I have had so many people ask about what I did for my hair, friends of friends, etc. I keep thinking about that shampoo commercial from the late 70's -- you tell two friends, they tell two friends ... and before you know it tons of people know about it. I feel like we are spreading the work about scalp cooling.. it should be a choice.. I did have one person say she just couldn't deal with the hassle and easier to lose her hair ... totally support and respect her decision ... just LOVE the fact she had the choice.
Can't wait to hit my 100 days (my mental goal of getting through chemo) ... Day 83.
So glad everyone seems to be doing so well on the PCCs!!
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I had one of those uncomfortable hours sitting in the chemo room and another woman asked me why I still had my hair...I told her, she made a face of surprise, realizing the cap room is just 30 feet away. I felt badly...oh, I wish more people knew. That fragile time of discovering you have BC, then getting the plan from the oncologist, getting the education of chemo, followed by the too quick "oh, and we have these cold caps..."
Background on my cold cap education: I am not sure about the rest of you, at our chemo education there were five beautiful 40ish year olds that ALL balked at the quick cold cap description and the notion of FIVE EXTRA HOURS. They actually laughed and said out loud "who would ever do this?" I raised my hand. It was awkward. But, truthfully, it was even more awkward on Monday when i was wrapped in my cold cap making my way to the bathroom and I saw one of the same woman with a wig. At chemo class, she had an absolutely crazy head of beautiful red curls that cascading down her back. I had hair envy then. I wish the info had been presented in a more positive upbeat way...I think this woman would have had a different outcome. Maybe maybe not. We all make decisions based on our own beliefs/values/etc.
Love to all you brave penguinistas! I am so thankful you all are in my life. I wish I could meet you in person some day...
Annie
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Annie~
At one of my Herceptin only times after chemo they put me in a room with 2 other ladies who were wearing wigs. We started talking and I felt uncomfortable also. My chemo class did not mention Cold Caps and I actually found out about them on BC.org. Both ladies seemed miffed that they had never heard about them...
I also really value the support from you ladies on this site...
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Friends:
Jus a note about post chemo-completion hair situation, my two cents.
My hair continued thinning for about 2.5 months after the last tx (6 cycles taxotere/carbo in 3 week intervals).
Frankly, it was demoralizing even though yes, the cold caps had worked.
After sheddin stopped it still took months for the hair to really thicken up. Once it did (months later!) it is thicker than it was to begin with! Hallelujah.
i know in your heart of hearts you know this, but it is tough while it is still going on.
--
Aside from above... hope those of you who have not yet done so will fill out that Patient Education Survey (letter posted at this board on Monday Jan. 31):
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My hair continued shedding for quite a while PFC; I finished chemo on June 21, but didn't feel it stopped totally until October. I didn't resume warm-water hairwashing until that time. The shedding DOES stop, but is individual for everyone, so it's important to pay attention to your own rate rather than try to adapt standard post hair-care timing.
Fwiw, I have always been a heavy shedder. My current shedding rate is practically non-existent, which is nice!
My hair began regrowing even during chemo, and once the shedding stopped it came roaring back (still is!). It is thicker than ever. It's starting to regain it's original shape, and I know that in another couple of months it'll look even better.
Btw, today is the anniversary of receiving my diagnosis. What a year! I'm going to take some time this weekend to reflect on the journey I've traveled. I'm so glad to have discovered PCCs, but am especially grateful that this forum was/is available to me.
Best,
Susan
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Hi,
I was just diagnosed a few weeks ago but did not know if there was lymph node involvement til yesterday when I received my pathology report back from my lumpectomy from the breast surgeon. Unfortuanetly, there were two nodes involved and margins were not clear. I see the oncologist tomorrow for the actual treatment plan but the surgeon told me I will defintely be receiving chemo which she thinks would be best to start in a week so no more time passes without treatment then follow with the mastectomy.
Since the moment I discovered the lump I knew the one thing that was gonna be the hardest for me was to lose my hair. Then I came across the cold caps and am very interested.
I was wondering if anyone has ever used them that was treated at the MD Anderson Cancer Center in Orlando, Florida so i know if they are receptive to the idea and have a freezer . Also, I read alot of great things about the penguin cold caps but i wanted to hear opinions about the elasto gel cap because they do seem to maybe be a little less expensive depending on how long my treatment will be. I know my family is ok with the cost they want me to do anything that is gonna help me but I'm a little concerned cause I plan to also see an MD/Naturalpath who my oncologist knows and will work with him in conjunction with traditional treatments. However, this probably will not be covered by my insurance so I could have alot going out of pocket. Any info provided is so much appreciated. Thank you
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Hi all,
To counteract the nail problems, try putting ice pacs or frozen gel pacs on toe and fingernails during chemo. Kmart sell a pack of sheets in the camping dept. that have little squares and you can cut them up anyway you want. They are used in kids lunch boxes to wrap around food to keep it cold. I cut 3 boxes across for each hand and foot and put them inside socks and mittens for the chemo time. It worked. For fatigue walk/walk/walk!!!--My oncologist told me to do it and it works. I feel energized after walknig and don't get so weak and fatigued. Yesterday and today I couldn't take a walk because we had a bad ice storm and it was too slippery. I am very tired and fatigued today. I will walk up and down steps a few times and see if it helps.
Washed my hair today and gently used a round styling brush and hair dryer on cold setting with Alterna Organic Hemp leave-in conditioner. Just put brush under ends to puff up a little. No great style, but not just flat on my head. My hair is short and not thick so it helped a little. Doesn't look great, not even good, but it's mine!!!
My husband had an interesting thought the other day.--He said, "Why do you think people put their fur coats in COLD STORAGE?-- To keep the fur from falling out!! That has been around for years and years!! Interesting obsevation-Huh?
Usually I wear hats in the winter cold, but I've been wearing earmuffs, whenever possible and letting my head and hair get the cold air. Every little bit helps--I think.
KEEP POSITIVE!!__IT WORKS!!!!
Diagnosis: 9/15/2010, IDC, 1cm, Stage I, Grade 3, 0/6 nodes, ER-/PR-, HER2=0 -
Susan - congratulations and making it a year with such a strong spirit. I passed my one year mark last week. What I mess I was a year ago waiting for MRI results, anticipating surgery, etc. So glad that is behind me. It really is hard to believe it's been a year.
micait02 - welcome to the group. I'm glad you found us. I don't know about MD Anderson so I can't answer your question about that but it does seem the elasto gel caps work too if you follow the penguin cold cap 'rules'. Of course individual results vary based on hair type, type of treatment you are receiving, etc. but it is certainly worth a shot. I'm sure someone will come along to talk about elasto gels.
Nancy - it sounds like you are doing so well. I am thrilled for you!
Regarding people at the chemo place commenting on my hair, it happens almost every time I go there (doing herceptin until May). Someone says - how could you have your hair back already, or why didn't you lose your hair. Now that my place has the freezer, people are starting to get that it's the cold caps but not everyone was told about them. I know they aren't for everyone but everyone should be given the choice.
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Hi Mica - welcome and so sorry you have to join us all. It is a lovely group of women. I am sorry but I do not know much about MD Anderson in Orlando. I am hoping there are ladies out there who do! Also, I am using the Cold Caps from Penguin and do not know about the other option. We actully have a freezer in my onco office and it is set up for the cold caps. I am sure there are others who have insight.
The other option is to use the search button at the top of the screen to find the subject matter, like "orlando" or "elasto gel cap." It is really helpful to find the discussion group and start reading from the beginning!
BEST WISHES!!!
Annie
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Question to all you shedders...but the way, thank you so much for providing us with your entire experiences beyond chemo. It is so great to know what to expect!
So, here is the situation: I have a large head and all my hair shedding seems to be coming from the nape of my neck. We had made a conscious decision to forego the nape for the front of my head. However, when i comb my hair, it comes out. 5-10 at a time at the nape of the neck. I have this fear that I have 5-10 hairs hanging down my back at all times. So, I find myself pulling the ends of my hair, beyond my normal haircut length to get the "stragglers".
So, my question is this, if I can pull the hair out that is in that area (just by combing my or running my hand through) should I? Does the follicle strenth change as you get further from chemo? Or does the weakened follicle release eventually. Or does it get stronger and I should simply NOT TOUCH MY HAIR?
Any insight is greatly welcomed. This is kind of hard...I am on day 23, two TCH are done. Four to go...but I have about 100 days left and at this rate, I will have no hair left. Ughh!
Annie
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Annie - I'm certainly not a hair expert but I would recommend you do not touch your hair or pull it. The hairs are trying to hang on so you need to be as gentle as you can. I know it's hard because you want to 'test' the area and it's natural to touch your hair but just forget about it.It's okay if you have a few shedded hairs on your back.
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Thanks Drim!
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Annie-
My take on it is this... if the hair is going to come out, it is going to come out. The hairs live at different stages of a life cycle and the chemo targets fast growing cells. Period. So whether you pull at the hair, or wait for it to come out on its own, it WILL come out.. unless it is NOT going to, because of being preserved and protected from the effects of the chemo. And, follicles don't strengthen; they are not like tooth sockets with strong ligaments that adhere the tooth in the socket...
I think the care and gentleness is fine.. we want to keep it healthy, and not be harsh with what gets "kept" because of the caps, but the reality is that the shedding is what it is.
As a biologist, this makes sense to me, and i also discussed it with a dermatologist who wholeheartedly agreed.
btw, I used warm water washing throughout chemo.
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Hi Marjorie, that is exactly my sense, as well. Gosh, this shedding is difficult! I am hoping it lessens at some point...thanks for your mane updates, suggestions, etc. I appreciate (as do others, I am sure) that you take the time to do this. Thanks and best wishes!
Annie
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