Cold Caps Users Past and Present, to Save Hair
Comments
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Thanks for replying to my post about whether I should discuss my cap experience at a cancer recovery retreat. I know there is a lot of misinformation out there on the caps ie they don't work, toomuch pain etc etc. My main goal is to provide information to people who may want to know about this option You are right, some are just not interested but others have told me that if they knew about them, they would have done it. Maybe I will simply tell people I saved my hair during chemo and those that are interested will ask how I did it.
. that way people who are interested will ask and others who are not will not. What do you think ?
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I think that's a great plan, serenity. I hope you enjoy the retreat!
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I checked into the cold caps when I found out I was going to have chemo. I was told that a lot of oncologist's discourage use due to the fact that when worn, the chemo won't reach the scalp? Don't know if this is true but I read it in a couple of places. That was enough for me to decide against them, just in case. I didn't want to do anything to keep the chemo from doing what it was supposed to and have regrets later.
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I think women are not hearing about cold caps unless by sheer chance. Medical professionals in general are not mentioning them and there is little about them in the media. I stumbled across one line about them when I was reading through a chemotherapy thread last year about a week before I was scheduled to start chemo. I was so surprised by what I read - it might be posible to save my hair? - that I started searching this website for more info and then went out on the net to other sites for everything I could find out about them. I finally decided to take a leap of faith and give them a try. It was an excellent decision.
jarris77- I looked into scalp mets and from everything I have read or been told, they happen so rarely they are not of concern, way less than 1%. Breast cancer mets are well known to appear in certain predictible places, and the scalp is not one of them. My doctor, the medical director of a major breast center, was not worried.
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I went to a Look Good Feel Better class when I was about half way through chemo. There were five of us in the class and I was the only one with hair. When asked, I explained that I was using cold caps. None of the other women had heard of them. I think it's important that women are aware of the option to use the caps. Some women may not feel strongly enough about keeping their hair and others may find the caps too expensive, but I think it's sad when women find out about them when it's too late to make an informed decision. That's why I will do my best to keep spreading the word.
Serenity, I like your plan and would like to know more about the retreat. Please come back afterwards and let us know how it was.0 -
Hortense, it was sheer chance that I found out about cold caps. I was looking on the internet for any information I could find about chemotherapy when I stumbled upon Maria's blog. She so generously shares not only her journey through breast cancer in her blog but also her experience using cold caps- complete with pictures. I cannot even explain the feeling of hope I had that night- maybe chemo wouldn't be so bad if I could keep my hair. I feel lucky that I found the information and decided to take a chance on cold caps.
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I have ordered the cold caps and am starting chemo on Thursday. I've read so much about them and am just praying they are worth the money and the effort. I will be happy to share my experience as a first time user if that helps.
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Mfm48, all of us here are ready and willing to offer suggestions and encouragement. Best of luck to you as you start treatment and cold caps. Before I started chemo, I started reading this discussion board from beginning to end...it took me about three weeks, and it's a lot longer now. I kept looking for someone who had my chemo regimen (12 weekly taxol) and didn't find anyone. But it was very helpful for me when the cold cap users put their chemo regimen into their signature block here (or whatever it's called). That way when you read about their success or lack thereof, you know what they're getting. Another very helpful thing to me was reading mdg's blog. She posts here sometimes and her blog address is in her signature block. (I haven't figured out how to copy and paste on my iPad...).
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I get frustrated that
A. Women don't know or are not told caps are an option
B. That doctors "forbid" or scare patients from using them with misinformation
C. That the medical community thinks losing hair is no big deal and that looking like a cancer poster child is no big deal
D. That medical insurance would allow up to $500 for a wig but would allow me to apply the $500 towards caps. Why does it matter????
I initially wrote my blog annonomously and my only purpose was to say things I couldn't say to my friends and family. I just needed to get the crazy thoughts out of my head. The only reason I eventually "came out" and shared pictures was because of my frustration with the lack of information on cold caps. I did this to help other women and let them see the caps work. Knowing that women have benefited from my blog makes me feel good. I hope one day people in the medical community will realize that how you feel in your head is just as important to how you feel physically. I think they should treat the whole person. I know looking more normal through chemo allowed me to feel better and continue living my life as normal as possible. I know I would not have continued to workout at the gym everyday with a wig or cap on. I know I got through all of this easier because of the caps. I will also continue to spread the word. I do believe it is a personal choice about using the caps but I really think women should be given the choice.
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I have been using the Penguin cold caps since June 17 when I began AC. I started experiencing hair loss day 23 and I shed 1/3-1/2 my hair over the next 3-4 weeks. Shedding has slowed significantly now that I'm on Taxol. However, my hair seems so damaged that I fear I may have to cut most of it off. I have only been washing my hair once a week and it feels like straw when I wash it. Has anyone else had significant hair damage? I don't know if I should cut my hair now to where it seems like it's more healthy (perhaps about half my current length) or wait until after the end of Taxol. I fear that when eventually I go to redye my hair, it will all just fall out due to such severe damage. Any advice?
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Gildedcage - My MO sounds like yours. When I first brought up the caps, he was going on & on about how it was "outdated" and "they never worked", blah blah blah. Needless to say, he's never had a patient actually try them. I'm the first, and I feel like a celebrity when I go in to his office. Everyone asked me how my first treatment was (and not all of them hoping for a positive response...grrrr). Honestly the caps kept us so busy that the time went fast! And it helped that I live five minutes from there, so we actually used the caps longer at home than at chemo. It's too soon to know if they will work for me (only 11 days post 1st tx) but I'm hopeful! I don't think my MO is really on top of things like this, though, because he told me it's way too soon to know if they work, and that most people don't start losing their hair until three weeks or so. Ummmm..... more like 14 days. A lot of the women on the August chemo group started losing clumps around day 12, and I know my sister-in-law shaved her head 2 weeks after her first treatment.
I do have to say, though, since I have chemo Thurs, today is my hair washing day and I love that feeling!! LOL I'm trying to be very careful & not "do" anything to my hair after my morning routine, but I have such thick, curly hair that "bed head" is awful and I can't NOT do something to it. I end up wetting it down every day (cold water of course) and putting a spray-in conditioner on it to help the frizz. I've only washed it in the sink, though, and haven't used heat to dry, and am sleeping on a satin pillowcase. Hopefully it's enough!
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Hello all. I am new to the forums, diagnosed back in July with breast cancer. I will (hopefully) find out soon when my chemo starts (they want me to do chemo before surgery to try and shrink it). I am looking into the cold caps and am wondering if anyone has used anything other than the Penquin cold caps. I saw a hypothermia therapy cap by Rehabmart and am considering looking into it. They are considerable less expensive than Penquin's caps. If I am reading correctly, you get 6 caps for less than $700 (you still need the dry ice and etc.). They don't look like they fit as well as Penguin's so I am not expecting the same results but, it is in my budget. Any thoughts?
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There are some gals here that tried the other caps and only a few had success. I am not saying you would not have success with them,but most women here have used Penguin Cold Caps. I know they are more expensive, but you only have one shot at saving your hair. I kind of felt like you get what you pay for so I did Penguin. Can anyone remember which girls used Elastogels? I can't remember the screen names of gals that used them. Regardless of which caps you use, come back and post questions here. We are happy to support you! Good luck!
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One of the reasons Penguin caps fit so well is there are elastic straps that you wrap around your head on top of the caps. They're wide elastic with velcro on the end. If you choose to try another brand, and if they don't come with outer straps, I woud suggest you make some. That way you'd be able to snug the cap around the contours of your head.
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boleo, by the time I finished my 4 taxotere/cytoxan treatments my hair was very dry and frizzy. I lost probably 1/3 but kept it all on top and had like a cape draping over the spots where I lost the hair. It is gradually growing back in and I have growths of 2-5 inches all over my head depending on when it fell out. I am 8 months PFC. It gradually is getting less frizzy and crazy and starting to fill in. I was tempted to cut it in August and ended up trimming about 2-3 inches which at least got rid of the thin straggly part. I was hoping to be further along by now but it is what it is. I have definitely thicker hair in the back of my head, temples and nape but nothing like it was pre chemo. I fear that the arimidex may also be contributing to the slow growth.
I take biotin capsules daily as well as silica to help so I just wait for maybe 6 months from now to be happier with what I kept. my avatar was taken this past weekend so this is pretty much what it looks like now.
Hang in there.
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When I started looking into the caps I read through this entire thread from start to finish (took quite some time) and there were a few people who tried other brands of caps. If I remember correctly, one did not have good success and was quite upset about it. A few others had better success. Having read all these posts I didn't walk away with the impression that trying out other brands of caps was the best decision for me to make. Many people are vary wary about using caps from brands other than an Penguin. I understand that the cost of the Penguin caps is significant but it would be a shame to put in several hundred dollars of money (not to mention the cost of dry ice, which can run up to $100 per treatment) and then have it not work. The caps may cost twice as much as alternative brands but the success rate seems to be higher. I think of it along the same lines as getting a tattoo or plastic surgery - would you go to the top professional and pay more to have it done right or would you want to take a chance on perhaps getting less stellar results? I just think of that Spanish proverb: The cheap comes out expensive. A few folks have actually held fundraisers to help finance using the caps. Just something to consider when making a decision regarding the use of the caps.
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I would be afraid to try anything other than Penguin. I helped a lady who used Elastogels, and she was very disappointed with her results, she lost quite a lot of hair. As mdg wrote, you only have one shot at saving your hair.
jc254, I also remember that incredible feeling of hope when I just happened to find out about cold caps about a week before I was due to start chemo.
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I just wanted to thank whoever suggested using Deodomom natural deordorant. Was it you Marsha?
It is amazing! It works incredibly well. I gave it a trial by fire the first day I used it. I was moving into a house along with the help five moving men, two handymen and two ladies to help unpack. I worked ridiculously hard from 8 am to 9 pm with nary a sniff of odor and believe me, I sweated. It's good stuff!
I got it on Amazon for $10 including shipping, although I think the person who suggested it mentioned another source. It comes in small jar and is a light creme. I highly recommend trying it. I'd been told by my doctor not to use anything with aluminum in it and this does not have any.
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This is my first ever post. >I have been lurking here for a while now and will write more later. I did TC x 4 and am now 4 weeks PFC! I used Elastogel caps mainly because of budget. My hair has held on well. I do have shedding, sometimes heavy. I estimate I have lost around 20% mainly above ears and over where a headband would go. The bangs are good and the back is still pretty thick. Very little shedding in back. Just FYI for those wondering about different brands. They do come in different sizes and small is really small. I have seen them at amazon for $85 each. We rotated out 6 caps We also had a specially outfitted cooler to manage the dry ice. I would be happy to share details if anyone wants them! I have lots of pics I will try to figure out how to post! I even have video showing how easy and quick cap changes went :0)
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4sewwhat,
could you post the video showing how to use the Elastogel caps? I plan to use these so any info would be helpful.
Thanks,
Murphy0 -
4sewwhat - How nice of you to post your experience with Elastogel caps. There is so little information on here about them, and what there was was not encouraging when I was trying to decide what to do. I am very glad that they worked well for you. Congratulations!
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It's nice to hear from others that have used Elastogels. THanks for posting! Most of us have used PCC's so we can't share details of Elastogels.
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I THINK ArleneA used Elastogels successfully, too - but I could be wrong.
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Hi Murphy!
I will definitely get you pics and video as soon as I figure out how. I need to consult with tech support husband or teenage sons!! Do you have a start date yet or know which regimen you are doing? I am working on getting all my notes pulled together to get them out of my notebook and especiallymy head and have them posted some where. Hopefully they can be helpful for others like all the wonderful ladies here were helpful to me. I would also be very happy to email or talk with you in person! My email is 4sewwhat@bellsouth.net
Hortense!
Thank you for the message :0) I have gained so much help and inspiration from your posts here. You are terrific about cheering everybody on and offering so much information!
Maria!
Thank you also for your message :0) and also for your blog. When I first got on this roller coaster ride my head was spinning so fast. My game plan changed several times but after they found 22 nodes in surgery chemo was a go and I was terrified. Then I found your blog! Even disregarding the capping and hair factor, your blog was very uplifting. I was determined to kick Chemo in the a$$ before it kicked me in mine and seeing that you posted that you felt pretty good throughout and kept going let me know that I could do the same. Thank you for that! I was not sick once and did not spend a single day in bed. I hope I can get half as organized as you and document my journey to share with others.
Have to run. Dr's appt of course!
Lynne0 -
Good luck, new cappers!
I am so greatful every day that I found out about cold caps in time. SO greatful. I wish everyone could know that they at least have options. I too try to spread the word. But it is a fine line between informing and being perceived as "bragging".
Lighthouselady, how is your capping going??
Hugs to all0 -
WHAT IS A COLD CAP? IAM STARTING TREATMENT 9-17-2013 TCH 6 ROUNDS FOLLOW 1 YEAR HERCEPTIN
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Cold caps are frozen caps you wear during chemo that allow you to keep your hair. It freezes the hair follicles so the chemo does not get to the follicles. You can look at my blog (link below) and I have info on there and links to the Penguin Cold Cap website.
Lynn - so glad it was helpful. The only reason I finally started posting pictures and such is because I wanted other women to know about cold caps and see for themself that they do really work. I just got so frustrated at the lack of information available that I went public.
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4sewwhat-I have a website with information and instructions to help those using cold caps. I would be happy to post your photo's to the site if you email them to me.
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Makingway,
I have been to your website for information and that would be great if you put the pics up! I don't even put pics on FaceBook so While I am not looking forward to my Internet photo debut, this cause is SO worth it I am willing to go there!! Thank you so much for offering! I will get them to you ASAP.
Lynne0 -
Sciencegal - So far so good! I have my 2nd AC tomorrow. No hair loss at all yet (knock on wood). I know the real shedding doesn't start for another week or so, but my sis-in-law was shaving her head on day 14 (which is today for me).
Lynne - I'm so glad you had good results with the other caps! Honestly, I am happy to hear about ANYONE who uses ANY caps to save their hair! It's awesome!
Maria - I read your blog before I started, too, and it was so helpful.
One question - did anyone have bad headaches during chemo? I have had one almost every day, and even went to the ER for a migraine that pain meds wouldn't touch. I'm assuming it's from the chemo (and all the nausea meds... and the steroids...etc), but of course the first thing my MO's office says is, "Oh, I hope it's not from the cold caps thing" Ugh.
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