Cold Caps Users Past and Present, to Save Hair
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Juneaubugg--I used the cold cap in New Jersey. I finished chemo on Feb 23, 2012. I have a full head of hair. Private Message me if you would like to talk. I live one town over from Morristown Memorial.
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For better or for worse I just started a new thread in the chemo therapy forum titled, "You can keep Your Hair!" I am hoping women who have not started chemo yet will spot it and look into cold caps. I would have loved to have found it whan I first visited this website. I hope I don't get flamed for putting it up. I still have chemo brain so it may not be written well, but it will get the idea across that there is an alternative to going bald.
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Hey Hortense~
I wanted to add my thoughts to your new thread...hope that is ok.
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Susan, Ang7, Geewhiz, Laura5, Luckynjmom, The Ladygrey, (and to anyone else I may have forgotten but not intended to):
I am not sure that you ladies will remember me, as I have not posted on this board in months. I wanted to thank you all for your support, time, and the knowlege you gave me when I began the cold cap process. I am so happy I found this thread and all of you when I did. I still remember the day I called and left a message for my MO to tell her I wanted to use the caps. She did not call me back, and someone else returned my call and said you can use them, but they don't work. Annoyed, nervous, and excited, I contacted Gerilyn to get things going. Annoyed because I never doubted that they worked after hearing your personal stories, I just wasn't sure to what extent they would work.
Throughout the course of my treatments, my MO never brought up the caps, nor did she ever acknowlege my hair! I was taken to a different area of the hospital for my infusions... "so that I would be more comfortable during my treatments" (um right) and I had to fight to get Herceptin last which I did get in time for second treatment. That may jog some memories. Well I went to each treatment and we did our thing and up until the very last treatment, not one of the nurses acknowledged that I kept my hair.
I am now 3 weeks PFC and have hair 4 to 4 1/2 inches below my shoulders. I am not shedding. The only time I really shed was after the second treatment. I did lose some hair over my ears and at hairline but it is growing in quickly and has been growing for some time. I long to use a a hair straightner. These curls and waves get tangled and knotted too easily. I have to say the curls I sometimes do not mind.
Thank you all again and again!
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Good to hear from you brax! The part you wrote about having to fight to get Herceptin last did jog my memory. I'm glad you were persistent. Congrats on your good results with the caps, and I'm glad you are finished with chemo, YAY!!! Your MO needs to work on her bedside manner, or maybe she just didn't like the fact that you proved her wrong
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Hortense, What a great idea!0
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Ang7 - Thank you for adding a comment! I hope others who used cold caps will also, so that it will not drop down the list and out of sight.
Brax - Congratulations on keeping your hair, and for having the courage of your convictions. Maybe your doctor and nurses will learn from you after seeing for themselves that you were able to keep your hair. It's a pity they weren't big enough to talk to you about it when they saw you were successful.
Would you consider posting your story on "You Can Keep Your Hair!" ? I am hoping women will spot it and learn about cold caps before they start chemo.
Even copying and pasting it pretty much as is would be great as you explain so much about what you had to do to be able to use cold caps. I had to switch oncologists and hospitals to be able to use them, so I understand a bit of what you had to go through. My first oncologist didn't believe the caps would work and told me the hospital, Memorial Sloan Kettering in NYC, absolutely would not allow them.
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Brax~
I do remember you...
I am so glad you were able to use them and keep so much of your hair.
This is a great group of ladies. The best on BCO as far as I am concerned.
Ang7
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Brax: I absolutely remember you, especially how your nurses took you to a different area for your infusions, and how you had to fight for Herceptin last. Your courage and strength in the midst of all this, is a testament to the power of always being one's own best advocate -- in health care and in everything. And you have had fantastic results! I'm so glad for all your success!! Congrats.
Susan
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Brax, so psyched for you! Way to fight through and advocate for yourself!!!
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My scalp got itchy but I kept my hair. Sometimes my scalp kind of hurt too....it felt like I was wearing a ponytail too tight or something....but I still kept my hair. Hang in there!!!
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My scalp fely itchy too at times. I didn't dare rub or scratch it and, like you, I wondered if the sensation meant I would lose my hair after all, but I didn't.
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Soltantio, ditto on the scalp itch for me, and the too tight ponytail feeling as well.
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My friend tried using a cold cap; she started losing hair after her first round and, by her second, it was all gone. I never tried one - didn`t know about them - and I, finally, shaved off all my hair after my third round because my scalp was so sore. Up until that point, I hadn`t lost much. Shaving it off was such a relief!!
It`s now 10 months since I started chemotherapy, and it`s all back and then some. My hairdresser says that it`s much thicker than before and - joyful! - it`s in beautiful condition `cause all the damaged hair was shaved off. This stuff is VIRGIN hair: healthy, strong, no frizzies, no split ends, no breakage, no damage. Cha-ching!
I`ve come to the conclusion - for me - that losing my hair was the easy part. It was everything else that was hard!0 -
Selena: I'm happy to hear that you were pleased with your choice. It's like you rebooted your hair. :^)
I used the cold cap machine, kept about 50% of my hair (lost more than I expected) but I do not regret using them one bit.
Cold caps may not be for everybody but it's great to have the choice.0 -
I felt like `GI Jane`. It was kinda cool.
I don`t know much about cold caps. They don`t seem to be used widely in Canada. Do they, also, help keep your scalp from getting so sore as well as reduce hair loss...0 -
I've read where others complained of itchiness with cold caps and maybe some soreness from the extreme cold.
I personally did not feel either of those things but I don't know if that was due to the caps.0 -
Can anyone tell my how you have worn your hair back right after Chemo was over. My hair has gotten pretty thin after 6 treatments.
Thank you!!
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I lightly twist mine together in the back, then make a turn with it (like a bun), but just once around - then let the ends stick up over the crown of my head a bit. I pin it with a gentle clip. This is similar to the kind of clip I use:
http://www.walgreens.com/store/c/conair-sophisticates-salon-hair-clips/ID=prod6022196-product
My hair is so hard to style without using a blowdryer. Can you say lifeless? Well, at least I have hair!
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I can't see the link. Can you describe it?
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Sorry about that...screwed the link up somehow...let me try again:
I tested it...appears to work. The clip is hard to describe verbally!
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Thank you! I tried a small gripper clip and it pulled too much. Do you know how long we need to wait to use a blowdryer again?
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I have started to use a blow dryer on cool. I set mine on warm, then push in the cool button which drops the temperature to cool. I have to keep holding it down to keep it on cool. I have much more volume using the dryer which is nice as I have lost a about 30% or so from shedding.
Today I used warm air on the longer parts, away from my scalp, which helped to dry it faster. I glanced at my reflection in shop windows as I walked past and I look normal. No one would know that I have lost any hair except for me.
I'm almost 3 weeks past my last chemo.
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I think it's 6 months before you are supposed to do anything like heat/hot blowdrying, washing more than every 3 days, or coloring. Lots of people bend those rules. I'm still shedding a fair amount at almost 7 weeks PFC, so I'm still being pretty strict in following the guidelines. I keep telling myself that I didn't come this far to screw it up. Hopefully. LOL Once I stop shedding I suspect I'll be bending the rules a bit to get my hair to look half decent for a change.
I, too, have used the blowdryer on the cool setting, but my finger gets tired holding that button, LOL! The other thing is I used to always use a styling brush to hold the roots up and to curl them - so that's out.
I tried using old fashioned sponge curlers in my hair and letting them air dry the other day. That gave me some wave, but it was unpredictable. I tried my velcro rollers prior to that and the hair caught on them as I tried to pull them out...freaked me out. Won't be trying that again!
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I also used a blow dryer with a cool button. I got tired of holding the button so I found one with a cool setting. It is a Conair 1875, it was inexpensive and I love it.
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Laura - thanks so much for the blow dryer tip!
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Well, ladies, tomorrow is the big day -- I am over 6 months PFC (by 11 days) and I'm going to get my hair cut and colored with my daughter.
I'm scared to death. I'm still shedding (not as heavily, but still.....) and I have lost maybe a third of my hair (ALL post chemo -- lost virtually none during chemo).
I have tried to wash my hair in warm water but can't make myself do it!
I had terrible dreams after my last Herceptin where the chemo nurses decided I hadn't had enough taxotere and slipped some into my Herceptin.
I had been toying with idea of just letting my hair grow out, and I would have had it been more grey (I LOVE grey hair on women -- so distinguished), but it actually doesn't look very good and my husband has, in a very circumspect way, made it clear that he prefers me blond.
Y'all keep your fingers crossed for me tomorrow.....
If you are on the fence, USE THE CAPS -- yea, I shed, but no one would ever suspect I had been through chemo in a million years. If your regimen includes taxotere, do your research on PERMANENT balding -- somewhere between 3 and 6% depending on who you are talking to.
I have not yet seen anyone whose oncologists advised that she might be permanently bald. Mine didn't.
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Funny reading the posts....I finished chemo June 2011 and still have trouble washing in warm water. Of course, I do it but I rinse in cold water. I still don't use the blow dryer except on my bangs which I did all through treatment. We all have to figure out what works for us individually. I did chop my hair off short end of October 2011 (it was a bit scraggly) and hubby loves it shorter so will probably keep it that way. For the new girls, I used the EGs.
Dance: I too tried the sponge rollers which I purchased before I starte chemo...they left my hair weird.
LadyGrey: You should be just fine!!! Congratulations.
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Laura5 - Thank you for the name of your hair dryer. I am going to look for one. My finger also gets very tired trying to hold down the cool button on mine. It would be nice to have a dryer with a proper cool setting. I am being very careful to only use cool near my scalp, but as my hair is fairly long, I started to try using warm on the longer ends and it dries it so much more quickly.
We had to go somewhere tonight and it felt so nice to have my hair somewhat blown dry. I didn't use a styling brush to turn the ends, but I have learned to use a boar's hair bristle brush to gently glide over and through my hair by sections to help it to dry straight rather than wavy. It also helps to add a shine to it.
Thegreylady - Congrats on getting to the point that you can cut and color your hair!
Would you consider posting something about your experience with cold caps on a Chemotherapy thread I started a few days ago called "You Can Keep Your Hair!" ? I am hoping women who haven't yet started chemo will spot the thread and find out that they do not have to automatically lose their hair, that they actually do have a choice.
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soltantio: I said it privately but I'll repeat it here: SWIM! The exercise is ***far*** more beneficial than any negative SEs of the pool water, mega-loads more beneficial. Wetting your hair at home is fine; it won't dry by the time you get to the pool. Totally great to use conditioner under the cap also-- wet hair and conditioner forms a barrier to the pool water, which isn't as damaging as you imagine. Keeping it as tangle-free as possible is the biggest challenge, because pulling while combing will bring out more of the weaker hairs. You're right, you're having few SEs because of your exercise regime -- keep it up! Detoxing by exercise is one of the best things you can do for your liver, and it's one of the best tools you have in keeping your hair and fighting other SEs of chemo. And in fighting cancer!!! Most important of all.
Susan
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