Cold Caps Users Past and Present, to Save Hair
Comments
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Thanks Annie. I do remember now you mentioning those. I think I'll order the Harmonic shampoo and conditioner. I use Aveda normally anyhow.
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Wow Maria. Awesome....I can't even tell the difference. You look wonderful and appears you didn't lose your brows or lashes.
Thanks so much for sharing!
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Maria...seriously you cannot tell any true difference...you are a most one too! Awesome!!!
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Wow Maria- you look amazing & gorgeous! There is no difference at all! Thank you for sharing and giving hope as I am going towards TX # 3 in 2 weeks. Arlene, the shedding subsides, I am at about 60% less than it was for the few days where I was losing 200+ a day. Now it's back to just strands.
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Thanks so much Annie- I have so little hair now that it isn't that hard to comb through and I now do it in the shower with the little bit of conditioner, then I comb through once a day with the large toothed comb and that is it. I keep thinking, "Well, it's hard to tangle three hairs! " Just kidding- I have more than that.
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Arlene: brows have gotten a little thin in a few spots but good make up helps. My husband has not even noticed the brows. I will be hopefully trying to actually "style" my hair this weekend for Easter so I will try to take a photo where I have actually done something to my hair other than just wash it and let it frizz.....
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Maria: I just read your blog and OMG, I'm going through my pantry like a crazy woman. Darn soy is in so much stuff. Checking all my vitamins too. My wheat crackers are good though. Boy do I have a job ahead of me. I knew about the crazy oils to avoid and they are in a lot of items too. Love peanut butter now so will have to get the all natural PB.
NMoss: Thanks for that note....mine seemed to have slowed down a tad bit today but still a pretty good handful came out this morning. Tomorrow, I have to wash it. I just can't believe I haven't lost any on the top on sides. #2 is Thursday so we'll see what happens after that!
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Arlene: Did you read the book Anti Cancer?....I got rid of SO MUCH food. When family and friends came over I was pawning off the food on them if they wanted it. I have switched to almond butter (I too LOVE PB!!) but read it's not the best for you either.....there is nothing good to eat anymore! No wonder why it's easy to maintain my weight now! I have a very empty pantry now which is probably a good thing....the junk is all gone! My shed did not start until the day of my second treatment...I hope you don't shed much when it starts.....have faith!
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mdg: First, your pictures are fantastic!!!
It's great that you are dedicating your time to supporting other women going through this. The integrative medicine approach is perfect; my cancer center also has a strong program and the more open, accepting attitude made it easier for me to break through the barrier. Do you have a family resource center or patient information center at your hospital? That can also be a great resource.
I've also been an advocate, through PCCs but also at the hospital where I work. Since I was diagnosed a year ago, ten of my friends have also been diagnosed. The vast majority of employees at the hospital are women, and given the very high percentage of BC diagnoses in the Bay Area, the number is actually in keeping with the general trend in the area. Still.....
Sporty13: welcome! I don't know which cap you are using; if you are using PCCs I strongly advise against doing anything to chemically treat your hair at this point, as it might weaken it. For me, the caps were a little of a "brain freeze" kind of like drinking a slurpee too fast, for the first five minutes. After that, the nerves are frozen and I didn't feel anything, just had a general sensation of overall cold (which one would have just by getting an infusion), and usually by the end of the session I had a bit of the shivers, but I had a nice warm shawl, warm clothes, an electric blanket can be a great idea too. I had benadryl as a premed, but did not take any other pain relievers. (I also did not get steroids the night before, I think I'm glad!) There was no pain at all. Instead of moleskin, I used a pantiliner and trimmed it to the shape of my hairline. Super-cheap because I already had them in the house. My hair is long and thick, and I had it hanging down during the PCC treatment, and it was plenty warm enough to cover my ears without anything else. If you PM me your email address, I'll send you my writeup on the caps and coping with treatment, etc.
Susan
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Maria: I have the book and am a bit slow reading it. I'll get through it yet though.
Today should have been my second treatment but it was rescheduled for Thursday but if I do my biggest shedding on TX#2 then I'll definitely be wearing a wig because I have lost so much already. I know the EG's aren't as good as the PCCs and should have gone with PCCs but didn't and just need to make the most of it and hope I retain enough hair to not need a wig.
Arlene
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ArleneA: Hang in there! You have great spirit. One of the other big benefits of scalp cooling is that you are protecting the hair follicle for future regrowth, as well as stimulating new hair growth. Even though you are shedding, by continuing to cool the scalp, you will be stimulating new hair to grow faster.
Susan
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Thank you Susan. I'm giving it the old college try and oddly enough, I think I have new hair coming in...when I lean back and my head hits the couch, etc., I feel little stubbies - guess it could be my imagination.
Day #22 and can't wait any longer to wash so we'll see how the washing goes. (Day 8 since I last washed).
I'll keep cooling as long as there is hair there cool. Would seem silly to cool the scalp if all the hair falls out, I think!
Arlene
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I'll bet that is new hair already growing in! Congratulations!! Last summer when I met Frank Fronda (PCC inventor) while he was visiting the Bay Area, he told about a woman who found out about PCCs after she'd begun treatment and lost her hair. She used them anyway, and her hair grew in while she was going through chemo. Though she started using PCCs after she was already bald, she finished her chemo treatments with a full head of hair because the cold stimulated the growth and it regrew, despite the constant onslaught of chemo drugs. I think that's around the time he began advising women to wear the caps between treatments.
I don't recall the chemo protocol you are on, but there is a small percentage of people who have permanent hair loss from the taxanes. Obviously, the pharmaceutical company does a great job of hiding this, but it's another important reason to pamper your follicles with scalp cooling. Remember, this is not just about cosmetics! Alopecia is one of the most dramatic and long-term SEs of chemo and can be permanent for some. Even though you aren't getting the results you hoped for, you are still doing something important by protecting your follicles. Susan
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Susan: I'm on TCHx6 (12 Herceptin) which is the same as quite a few here. The new hair sounds pretty positive. Still not losing any on the top and sides and plenty left on the back just not what I am used to, so I'm still thinking positive thoughts.
Good to hear Frank's thoughts too.
Arlene
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Arlene - I just want to tell you (probably repeating...blaming it on chemo brain!) that I am on TCH with herceptin for one year. I have not lost on the tops and sides, however the back, at the nape - about 5 inches by 2 inches is gone! No one can tell but me and the hundreds of people that I have shown! I say that because, this is where the cap did not cover and people always ask if it is working and the nape of the neck is my proof - you can see a line where the caps stopped and started! I have to say it is kind of cool!
The shed was alarming. But living without that hair is easy. Really, not a big deal. Once I determined that the top and sides were not going anywhere, I felt much more at ease.
You are going to make it through with hair!
LOVE the story about the woman who started PCC AFTER chemo number one! That is such a great testament to the caps!!!!
Annie
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Oh, Annie, thank you so much for the positive thoughts. My hubby just gently looked through the back of my hair and says, yes, it is thinner but says there is still a lot of hair there. But I guess from what Susan said, if I lose it, I'll continue with the caps to keep the new little hairs growing. That is so awesome about the lady who started after losing her hair.
I chuckled at your comment about the fact that your spot on the back is kind of cool.
Well, the weather is gorgeous here today so I'm heading out for a speedwalk and then the dreaded hair washing. Take advantage of the feeling good days which, fortunately, are more than the feel bad days.
Arlene
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I had the reverse hair loss pattern. The way the PCC fit my head, the nape area was tightly covered (thanks in part to how tight my DH pulled the velcro). However the upper back of my head (think where men tend to go bald) is rather flat and the caps didn't fit as tight. The flat, upper back is where my hair thinned the most.
Colleen
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Well, the dreaded shampooing was horrible. I had major tangles from my hair being in a scrunchy for a few days so needless to say, LOTS and LOTS of hair loss. Hubby says I still have a lot of hair but he doesn't see what I see. Doubt I'll make it and will probably go wig hunting tomorrow. I gave it my best!
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Arlene,
Remember when your hair is up in a scrunchy it isn't shredding. I had the same experience. It seemed as if I was losing LOTS of hair, but I had to remind myself that it was the equivalent of several days worth.
Colleen
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Arlene: I am sorry....I hope things settle down a little on the shedding. Keep us posted....hugs!
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Hang in there Arlene. I am hoping the shedding slows down...and you get a bit of rest from the hair worry!
I had the hurting/tingling top of my head for two weeks and now it has stopped and all is well. Yet the worries continue...this is not easy...but a nice diversion from the real worries!
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Thanks ladies. Yes, so true Annie, we get so caught up in the hair that we forget about the real worries. Right now I have these heart palpitations to worry about and am having the Holter Monitor put on today for 24 hours and starting the 3-day steroids won't help that much either.
I lost more this morning (again not on the top) but expected that since I didn't get all the knots out. Maybe now it will settle down but tomorrow is Chemo #3. I have my hubbies pirate scarf that I can wear if I need to. Right now with the hair pulled back, it looks fine.
Thanks again, Arlene
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My oncologists office at a major university just called and asked if I would be willing to write of my experience with the penguin cold caps for their website. I get calls from patients they refer to me all the time, another today! The elastogels do not really work as well at all she said.... see it again and again, sadly. They want the right information getting out there. I feel like a billboard for penguin...sheesh!!! But, what a difference they made for me, so I am happy to pay it forward.
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Hi Arlene Don't get discouraged! I washed and the tangles took out major hair. Also I woke up yesterday morning and saw bald spots on the side. I am thinking the bald spots are from the arms on my glasses. I accidently wore them with the caps and now I am missing hair there. I am still shedding but it is more on right side of my head and less on the left. I have lost probably 1/4 of my hair in 1 week. Luckily for me I have allot of it so it does not show unless I point it out. When I was losing 30-40 hairs at a time, someone on these boards reminded me we are not supposed to have any hair at this point so something is working. Even if I save 10 strands by the time this is over, it is 10 strands cancer did not take from me. I know its hard, I spent the last 10 days crying over the mounds of hair I lost. Just hang in there! Here are the latest pics of Day 30 days post TX 1 and 11 days post TX 2. (I do not know how to include them in the body of the post.) Also, my hair looks fuller because I cant blow dry it and it's naturally curly.
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Beautiful pictures Nicole. That is so funny about the spot where your glasses fit. You look wonderful. I think mine is a bit thinner than yours but I too have very curly, kinky actually if I don't straighten it but now it seems to be going straight after it fully drys. I've ordered the shampoo and conditioner that Annie recommended in hopes that it will get rid of the tangles....that was so traumatic last night but when I saw all those mats from speed walking yesterday and where my hair got all sweaty, guess I knew what I was in for. So now, it is just pulled back in a scrunchy. I'll be really diligent about getting the caps tight tomorrow too!
My chemo schedule has been changed and now I have to wait until next Thursday to shampoo...
Thanks for another peptalk.
Arlene
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Nicole: You look beautiful! OK - you have more hair after losing some than I had before I started chemo! No one would know! Another thing...I just treated myself to some human hair extensions to thicken it up a bit (since my hair was way thinner than yours to begin with). I can't wait to try them this weekend. You cold always put a few in if needed. You look great girl!!!! It will be OK...look at how thin my hair compared to yours......
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Maria: Where do you get the extensions?
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Nicole - now I have hair envy! You look awesome. Just realized I used the word "awesome" cuz ity is blaring from Disney TV!!!! But you do, really! YOU LOOK AWESOME!
Ok, it is funny that you showed the sides. Just two days ago I startled myself when I looked at my sides above the ears and it looked exactly like yours. I never noticed the thinning there...and no one else noticed either. That is what is so funny about this process, no one notices these small details about hair. So many people have their own hair issues that no one notices, unless you tell them.
Oh, the other thing that struck me as soon as I saw your picture was how young, healthy and vibrant you look. You are going to do great with all this....then it will be a distant memory....
Annie
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Hi,
Tomorrow is my big day--last TCH-Hooray!!
Nikki, I couldn't open your pictures.
Maria, Your hair looks great!!
Everyone--keep positive It will work, don't worry, you will have hair! I have almost all of mine, actually maybe more, because it has been growing and is much longer than when I started with very short hair.
Best to you all!!! Soon you will all be where I am, about to look back on chemo!!
Nancy
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Nancy: CONGRATULATIONS!!! You've done it!! I remember when you first signed on, seems ages ago. Before you know it, you'll be where I am: a year from chemo!
Susan
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