Cold Caps Users Past and Present, to Save Hair
Comments
-
I love my color person, but my color just hasn't been right since I started coloring again in late January. It doesn't help that the color product she had used for years is no longer being made. For my last color before chemo she used an organic color product and I liked the way it looked - I think I'll ask her to get that for me again. The salon doesn't stock it and I'm not sure how it works - does she have to pay for it herself? I'll have to ask.
0 -
Good luck PatinMN - I'm not sure if you were asking me about my stylist paying for the color product she used although I don't know the answer either way. All I know is this older stylist heard my plight and suggested using this tube of color, actually two tubes. I see her again next week so will ask what it was she used.
0 -
AmyQ - so happy for you!!!!!!!
0 -
Good for you, AmyQ. Time to get back into the swing of things. Another cold caps success story!
0 -
Thanks for your replies...that's very kind of you
0 -
Way to go AmyQ!
0 -
Hey there curly! My hair is still super thin - and I've got some daily light shedding going on... but no bald spots except for around the hairline so I'm happy about that. I'm itching to color too. I'm trying to wait as long as possible PFC... but I'm thinking one day I may not be able to stand it anymore and I may pull an AmyQ and just go for it. I've already been looking at an all-organic salon that's gotten pretty good reveiws online.
Contined luck with the rads. Wishing you and everyone in that phase now smooth sailing all the way through. I start them in a couple of weeks and am a little apprehensive. Before surgery I had researched everything and felt ready. Before chemo I had researched everything and felt ready. Now, before rads, I find myself too tired to really dig in and get prepared. Hoping I get a spurt of energy before I start.
0 -
Hi Kay- I made it through rads ok, no need to do a ton of research (I did that- started a post, "did anyone make it through rads with their skin okay" because all I was seeing was those who were having problems.)
After evaluating all the stories from those who had success, I settled on using miaderm by day and emu oil at night, after rads. worked like a charm. Both available on Amzon.com. We all hide this from our ROs as they dont want us to use anything. But as long as the oil is showered off prior to the appointment, all is well.
Aside from that, you just show up each day and do it.
It does make you tired, I am almost a month out and skin is FINE but still tired. Getting better each day.
And my hair is nice and full now. what was lost has filled in, about an inch and a half long in six months. Feeling more and more like myself each day. Regular washign and brushing without a second thought now.
Good luck with rads!!!!0 -
sciencegal - as always thank you thank you thank you! i had heard about the emu oil. but i didn't know about miaderm - i'm on it! ordering today.
0 -
amyQ - awesome! So happy to hear your story. What a treat to feel your normal self. That is great news. How brave of you!
Thanks Kaydee. Nice to hear from you. And yes, i don't think there is too much to worry about with rads. You just go in and do it everyday. Certainly what you have been through so far is much worse than what is to come. Good luck! And let me know when you bite the bullet re hair colour! I may do the same!
shipsgirl - sorry to hear about the sight. What happened? Big change?
curly0 -
lighthouse - just in case you missed makingway's answer to your question, wait three days after chemo to shampoo - using cold to cool water. I know it's gross to go six days without shampooing, but we have all been through it. The protocol is time tested and should be abided by. I ignored part of it - I colored my roots six days before chemo - and paid the price in damaged hair when the chemo hit my newly lightened roots instread of healthy natural roots. I learned the hard way that there are good reasons for why we are supposed to do as we are told.
Makingway also suggested not blowing dry even on cool, and I agree. If you can avoid stressing your hair right now, it's best to do so. Later on, maybe around your fourth treatment you might try, but until you are certain you are keeping your hair, don't do anything to possibly cause any loss.
Also, be sure to always starting combing from the bottom to keep from catching on snarls and pulling on your roots. Your hair will be at its most delicate just after chemo. Treat it super gingerly.
0 -
Hortense - thanks for the info! I thought it was three days after, but wanted to make sure. Luckily (or unluckily?) I have very curly hair, so not washing/styling it doesn't really make much difference except to me. LOL I have been wetting it with cool water after my shower, just to get rid of the "bed head" look, but aside from some spray leave-in conditioner, I haven't done much of anything to it all week. Since I had chemo on Thursday, does that mean I can wash it tomorrow (Sunday)? Hope so!
On a side note... I had a frank conversation with my kids about my hair. They know I'm using cold caps to try to save my hair, but I made it known that it might not work (especially with AC/T). I asked them if they'd rather me wear a wig or scarves/hats. My daughter (she's 7) immediately said "Wig" and my son (11) said hats. He said if I wear a wig, I'd be lying about having hair when I don't. LOL Just a little interesting insight into the opinions of different ages/genders of kids.
0 -
Lighthouse - your kids sound cute. I believe it's best to speak as frankly as possible to kids about major health issues, rather than hide them. My husband collapsed in front of our's some years ago and I instantly decided that they needed to be kept in the loop. I found they were understanding as well as caring and compassionate. They were a huge help as we nursed Dad back to health. My youngest was 10 at that time.
0 -
AmyQ, you're a brave woman. So glad your salon visit went well and your hair must look great because you sound so happy in your post. I've been checking out some organic salons in my area. I plan to make an appointment for a cut and color at the end of September to coincide with my final radiation treatment. I'll be three months PFC by then. I'm still shedding daily but hoping it will stop in the next three weeks. Even if it doesn't, it's time to get rid of the grey, frizzy mess that my hair has become.
I've finished my first week of radiation and it's not bad. I had a nine week break between chemo and rads and like Kaydee, I hadn't given much thought to radiation until the weekend before I was to start. It's a little intimidating to be in the treatment room with that big machine while everyone else leaves. The whole time during treatment I keep thinking- do I really need this? Of course I'll never know for sure. I'm also using Miaderm a few times a day and so far no problems.
Hope our new cappers are feeling ok this weekend.
0 -
Calendula cream or gel also has some research behind it for reducing radiation side effects. The gel feels especially cooling on your skin. I am also a big fan of emu oil.
0 -
Here's an interesting observation with no explaination...well maybe just a coincidence but I showered and shampooed today...no more shedding! It was amazing. I was able to blow dry and style on cool but did not have scads of hair loss like I had been experiencing before my salon appointment last week. So happy! On another note, I have had to start wearing fake eyelashes as almost all of them have dropped off and this didn't start until about 2 weeks ago. Did I hear Femara may be the reason?
0 -
AmyQ - I lost my brows and lashes about 4 weeks pfc and I'm not on anything right now. I hope it doesn't take long for them to grow back in!!
0 -
Just wondering how many people posting (or watching) this thread are actively using caps? I know gildedcage is with me... anyone else? I learned so much reading through all of these posts, and now I kind of feel like I'm going through withdrawal now that I'm actually USING the caps, since nobody's really posting about them. Ha!!! I'm so happy for all of you who have made it through (and with HAIR!). But I'm kinda feeling in the minority, just starting out!
0 -
Lighthouse, I'm halfway through my TCH treatment and using the caps, and they are working for me so far.
My hair had been colored red for 25 years, but 4 weeks before chemo I colored my hair brown (no peroxide) which is my natural hair color. My roots are 1.5 inches long and there's a little gray, but if I part it differently its not too bad and I touch it up with colormark. My bangs are down to the middle of my nose so I clip it back with bobby pins and tiny claw clips. I know I took a risk with coloring, but if I had 1.5 inch dark roots with red hair now I think it would look pretty bad. I might decide to stay with this color.
I'm using DermOrganics shampoo and conditioner, and sometimes I use argan oil. My hair is naturally curly (my photo shows my last blow out before chemo). It looks ok after drying naturally, and I use a water spritzer to smooth down my hair in the morning and pin down any cow licks to dry in the position I want.
I loose hair every time I shampoo or comb my hair, but its only a little more than was coming out before chemo and my hair still looks full. I am constantly finding hair on my bathroom floor, clothes, in my food. But it's not coming out in clumps and there are no bald spots or noticeable thin areas.
I miss my hair dryer. I miss not being able to spontaneously clean up and style my hair and plan when I'm going to wash it. I miss being able to lay down in a tub filled with hot water. But having lost my hair once before to chemo I love not having to go through that again. Being single and in my 40s is hard enough. It's hard for me to feel pretty and confident without my hair, and I feel like this will help me move on quicker.0 -
Just wanted to give an update. Have gone back to the shower and my old shampoo/conditioner combo.
Today I used medium heat on my blow dryer after washing today and everything seems OK. I used to get the worst of the moisture out and stopped before it was completely dry, but I combed after and nothing really came out.
Will try the flat iron in the next few weeks.
I have decided to relax it the Friday that I finish radiation- a little treat for myself! Already made the appointment.
0 -
I'm 6 weeks pfc. In some ways, it all just seems like a bad dream. lol Amazing how quickly time passes. For those who are currently capping, I know it might seem like it will never end, but it will. You'll get through this and be stronger for it.
My hair is still crazy curly, but the new growth appears to be straight - so far. It's about an inch long already. I've been taking the liquid silica that Sciencegal recommended and b12. I don't know if they are helping, because my hair always did grow quickly, but I'll do anything to help it along.
I bought Herbetint (or whatever it's called) that I've read so many of you write about here. I haven't tried it yet; just found it in the organic aisle at my supermarket (for fellow Canadians, it was at Superstore and I think it's cheaper than at Whole Foods). I'm a Marriage Commissioner and have a wedding to do on Saturday. I wanted to look a little more put together. I also made a black birdcage to wear to distract the attention from my hair. It worked well a couple of weeks ago for my parents' 40th anniversary.
0 -
shipsgirl, I am also in Vancouver. Where did you purchase your cold cap? I'm sorry I haven't read all the forum threads and you may have already posted this info but any info is appreciated.
0 -
Lighthouse, there doesn't seem to be many posting on this forum who are using the caps right now, but please don't let that stop you from posting your experiences and asking questions. I hope it's going well for you so far. There are quite a few of us who just finished recently and we're glad to cheer you on and help in any way we can. The tips, advice and encouragement I got here helped me get through it (with hair!).
I find myself constantly educating people about cold caps when they learn I went through chemo. Most recently, it's been my radiation nurses who are amazed at the results. It's kind of hard to believe that I am the first person they've seen who used the caps especially since I am being treated at a large well regarded NCI designated teaching hospital. The lack of awareness is frustrating.
Lovely, you rent the caps on a monthly basis. Visit the website www.penguincoldcaps.com. The company is in the UK but there are distributors in the US who will ship you the caps and you ship them back when you're finished.
0 -
2lovelyBs - as jc said, I rented them from penguin cold caps. I have an infrared thermometer I'll gladly give you. I will also tell you where to get your dry ice if you haven't found it already. They were great and gave it to me at cost.
0 -
2lovelyBs - As mentioned above, most of us have rented caps from: www.penguincoldcaps.com
Penguin Cold Caps are not sold and can only be rented. They cost about $500 a month plus shipping. My cap rental ran about $1500. They must be used exactly according to the protocol that comes with them and they are very cold indeed, as they have to be to chill down your scalp enough to keep the chemo from hitting your hair follicles. For more information about how cold caps can save hair go to:
www.rapunzelproject.org
Also go to the archives at "The Doctors" tv show website and look up May 2, 2013 to watch the program it aired that day about cold caps.
The caps are more consistently successful with Taxotere/Cytoxan chemo than with the harsher ACT chemotherapy regimen. About 50 women have used cold caps at my hospital. Some doctors and medical staff don't know about cold caps, or think they don't work based on ones from many years ago, but Penguin caps do work.
I used them last summer and kept my hair. I am very grateful that I was able to do so, as keeping my hair and looking like myself made undergoing chemotherapy treatment and radiation afterwards much easier. I believe not being forced to go bald enabled me to maintain a positive attitude which is always a good thing. I never had to look like the poster child for cancer, and for me, that was powerful medicine.
The caps are a commitment. You will need a helper or helpers to put them on you and change them regularly on your chemo days - about every 30 minutes - and you will have to wear them for about seven hours total each treatment day. The helper/s can be anyone who is willing and able to follow the instructions exactly so that the timing is correct and the temperatures of each cap is what it needs to be when it is put on. It is work. Often husbands, grown children or friends do it for cappers. Some of us hire a helper as I did. My husband did not want to be responsible for doing it, although he stayed at my side throughout each session.
Best of luck in your treatment, whether you decide to cap or not.
0 -
shipsgirl - that is a kind offer which I will gladly take you up on. I have sent you a private message with my contact info.
hortense - thank you for the guidance and information on the commitment required.
0 -
Hi everyone,
It has been ages since I posted. For the newcomers I wanted to let you know I used the penguin caps in 2011 with great success. Yes it was cold and I had quite a time arranging my team of helpers but some wonderful people came forard to help change the caps. I had the caps in ice chests and was the first one at my clinic to do it. Sadly, the doctors still continue not to mention the caps as an option. I guess this thing with the FDA not approving it keeps them from promoting it. I kept most of my hair and am very grateful as I lost hair elsewhere and it has grown back very sparcely. I still have to draw in my eyebrows , good news is that I have almost no hair on arms and legs and elsewhere. Bad news is that I still have neuropathy on bottoms of my feet. I keep wondering if I used cold on my feet if this would have prevented this. Not eveyone gets this side effect though.
I am going on a retreat this coming weekend for breast cancer survivors called Casting for Recovery. I find that so few people know about the caps. Do you think it is appropriate to tell people about them in case they need them or others need them?
0 -
Serenity,
It's hard to say whether its ok to talk to people who have been through treatment about the caps. I participate in several active treatment threads and most people there are sharing their experience with hair loss. I talk about my experience from 6 years ago to tell them what to expect, but I don't talk about the caps. For many it's just not an option due to cost, lack of help, doctor support, or risk. I've read on this thread where women got upset when they learned about it after it was too late. On the other hand I've connected with many women on and offline at different stages of treatment. It's through this sharing of experience that I've learned the options available and figured out how to navigate cancer, twice. I learned about this on a breast reconstruction thread when I was whining about impending hair loss. I wasn't seeking the information so didn't find it so the timing was great for me to learn about them.
I think if someone is currently bald I would probably not share my cap experience unless they asked why I have hair. Otherwise I'd try to sense how others might feel about it.
Marsha0 -
Anyone in the Houston area who is planning to use the caps PM me and I will arrange to get you the thermometer. It cost about $80 at sears and hopefully I will never need it again.
0 -
An interesting thing I've noticed is that many women simply aren't interested in using the caps. I've seen it mentioned a few times on threads for women going through the start of chemo and most don't seem to have interest or don't seem to respond to information about the caps. I'm not sure of the reason for this. Maybe it's because it's not FDA approved? Price may be an issue. Maybe some women just aren't that attached to their hair or just so focused on survival that hair seems inconsequential. It's such an individual thing.
I definately think it's important to spread the word when we can without becoming overly forward about it. And I'd like to try to dispel any myths about the caps (that they don't work, that they hurt to much to wear, etc.) with out own personal experience. My own onc told me that she had never seen anyone who had been able to endure the pain of wearing the caps during an infusion and therefore, they were not effective. I just went ahead with my own plans to use them anyway. After my first infusion she asked how I had done with them and I told her that I had experienced only mild, momentary discomfort and never pain. In fact, I wore the caps for two hours past what was required just becuase I was so not bothered by them. And I've worn the caps straight out of the freezer several times since the infusion with zero discomfort. My onc then told me that her last experience with someone who had used caps was over a decade ago - i.e. "old school" caps which are totally different than what is used now. I just don't want people to hear horror stories from doctors who worked with people who wore "ice caps" in the 1980's and not try the caps. There is so much misinformation about the caps out there and I'm hoping that as they become more widely used and accepted, they will be more of an option for people undergoing treatment.
0
