Cold Caps Users Past and Present, to Save Hair
Comments
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hapb- I used penguin cold caps because they had the best reviews for my type of chemo ACT. There are cheaper brands that seem to work great for people they are working on FDA approval.
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mquara - Thanks for your response. I have been gathering more information about eyelashes/eyebrows since after my post. I guess everyone is different. I have read that some people lose them 4, 6, or even 8 weeks PFC. Some people grow them back and then lose them again, not only once, but several times. I have been using castor oil for my eyelashes, which I had been using even before I was diagnosed, and it's very effective. My eyelashes got fuller and thinned after first chemo. My MO gave me a prescription for Latisse, which I am planning to start using next week. I read that Latisse may darken your eyes, but most likely this happens when the solution gets in your eyes and not when you are careful and put it on your eyelids only. My eyes are light brown/green and I am hoping they don't get darker. My eye color has more chances to darken compared to blue and green. I have also read "somewhere" that EES (Essential Eyebrow Solution/it's expensive) is good to keep eyebrows, so I have been using it twice a day almost since I started chemo. My eyelashes and eyebrows have thinned, but I still have them. I hope your dandruff issue is better. Let me know what works for you. I purchased a 100% Pure shampoo that is supposed to help with dandruff, itchy scalp and hair growt (everything I need.). It's the best one I have used so far. I purchased it a Topanga Westfield in California, but they also sell it online.
I am done with chemo. My MO said it was OK for me to have only 3 TC treatments. This is my second time with ER/PR+ cancer. It's a very slow growth type. I found it myself under my clavicle bone after I injured a muscle while at the gym. He said I will get real benefits with estrogen blockers and radiation. So, Mquara, we finished on the same day!!! Let's keep in touch.
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Hi ladies, after gearing up for chemotherapy and cold capping my Oncotype came back at 17 which is considered a low risk for recurrance. I consulted with two Oncologists and they both said that chemotherapy would only increase my risk of survival by 2% and that Hormone treatment would be my best bet. Yay! I've already sold my Elastogel cold caps, but still have four pairs of the Elastogel Hypothermia slippers listed on Ebay in case anyone is interested. Best of luck to you all!
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GoKale--I do get it! As someone on this forum said, I've never worked so hard and spent so much time on my hair for it to look so bad!! I may work up the nerve and apply a temporary color at the next hair wash. Good luck with the cornstarch problem--hopefully it will clear up soon!
Congrats IrishLuck--so glad to hear that you won't have to go through any of this.
Mquara--I was on taxol only with herceptin every three weeks and my eyelashes were pretty much gone between the 3rd and 4th week PFC--the good news is that they are growing back pretty quickly and looks like they will be thick. I have been using Latisse for 2 or 3 weeks now. Eyebrows were not great to begin with, and I lost some during chemo, but they seem to be growing thicker now (I use EES once a day at bedtime). It is another disappointment with all of this, but as many others said, the good news is they do grow back almost immediately.A little eyeliner on upper and lower lids gives some definition and will help you through this
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Regarding eyelashes and eyebrows: I lost nearly all of my eyelashes through the course of chemo and PFC (Cali58 - the loss mainly occurred PFC, but at 7.5 weeks, I think my eyebrows are rebounding and my eyelids are still bald), and my eyebrows thinned a great deal. I have been using castor oil every night on my eyebrows for over a month with great results. For my eyelashes, I have not put anything on the lids. My eyelashes have not started to regrow, but I hope they will without having to use anything - I'm just leery of putting anything runny that close to my eyes (the first time I used the castor oil on my brows, I used too much and it irritated my eyes). I am 7.5 weeks PFC and I still use eyebrow makeup on my eyebrows though I can almost get by without.
So did anyone not use an eyelash serum and still regrow their lashes?
Pamela - I will continue to wear the compression sleeve and glove throughout radiation. I have only had 2 radiations so it is too soon to say what effect it will have on my arm, but my PT says that radiation does make it worse. I wear them full time except during exercise and sleeping.
Irish Luck - fantastic news!!! Best wishes to you! And dang, I should have checked eBay for cold caps. It never crossed my mind.
HapB- good luck with the decision. It's great that you are gathering so much data. I wish I had found this site before I made the decision. It all just happened so fast.
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Sorry to hear about your eyebrows and eyelashes, GoKale. After 7.5 weeks PFC you would think that what you have left is safe. I hope they grow back soon. I use Palma Christy organic Castor Oil from Amazon. It doesn't irritate my eyes. I have read that castor oil helps people that have dry eyes as well as cataracts (I have both). I wake up with red eyes when I don't use castor oil at night. It really helps not only my eyelashes, but my eyes too. I always took pride on my long hair and eyelashes. I got compliments daily from friends and strangers. I feel like the ugly duckling PFC with almost no hair. I hope radiation doesn't affect your lymphedema, GoKale.
HapB - good luck with your hair. I hope cold caps work for you.
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Silly question: do you just massage the castor oil onto brows and lashes?
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Cali58- Thanks! This is great information. I will have to try my castor oil on my eye lids tonight. Or maybe put it on when I get home so I will know if it bothers me. It really worked for my brows and I am eager to try most anything to move things along. I will be googling witch doctors pretty soon.
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Rdsm - apply the castor oil to the base of your lashes. Massage lashes and brows with the oil. For the dry eye and cataract benefits, I make sure some of the oil goes in my eye when applying to lower lashes.
GoKale - if it irritates your eyes, you may not be using the right kind of castor oil or you may be allergic to it. Organic Palma christy works great for me, as I tested it prior to my diagnosis and it made my lashes fuller.
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Ok, ladies. I need your help. You are the only ones who really "get" what I'm feeling. I have cold capped for 2 out of 4 of my TC treatments. Yay, I'm half way done. My hair is shedding so much and I believe I have lost over 50% at this point. I plan to continue to cold cap for the rest of my treatments as I know it will protect some hair follicles and be easier to grow it once treatments are done. I had chemo in 1999 and lost all my hair. It took FOREVER to grow it back. I feel very uncomfortable with the thin hair, scalp showing through look. I've been using Toppik and that def helps. I've never spent so much time and energy on hair to have it look so bad, every single day. I feel like people are looking at me and know something is wrong. Last time I wore a wig, but it was in the fall/winter/spring. I just can't see doing that for the summer. It's too hot!! My question is, do I risk loosing more hair and start wearing a scarf. Rock the scarf and accept the new look? I am so torn as to what to do. Friends only want to say nice things to make me feel good and my husband just wants to see a smile on my face. Any advice, comments or suggestions to help me make a decision on this would be helpful.
Funny thing is........when it came to being diagnosed and making my medical decisions, I had no problem. I went for it all. Had a BMX in April and never gave it a second thought.
Thanks for being on this forum and being so supportive! We are lucky to have each other!
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rdsm- I've worn hats and wigs the whole time, while cold capping. Im not sure how much it effects shedding. Is it because covering the head warms up the scalp, thus promoting faster dividing follicoles? I have no idea. In my opinion, I think that wearing a scarf will make a negligible difference in shedding, but maybe some other ladies will chime in
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rdsm- I know EXACTLY how you feel. It is a tough decision. I have lost 2/3's of my hair, maybe more. I'm 2 weeks PFC/TC. I personally prefer to keep as much hair as I possibly can. I don't go out much and I don't use Toppik or scarves. When I go out, on occasion, I wear a "32 degrees cool sports cap" or a thin and cool straw hat (I take them off when I am in the car). Penguin cold caps recommends not to wear scarves or hats. I will continue to do this until my hair stops shedding. I am hoping to keep enough hair and be able to wear a topper instead of a wig. I am too vain and prefer that people don't see me. Before chemo, my hair was ALWAYS perfectly styled. Determine your priorities to make the best deci
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What dose of biotin is everybody taking? I am taking 10,000mcg once a day. Is that enough or should I/can I take more?
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I use hats when I go out sometimes as my hair has thinned and have some very thin spots I know penguin recommended against it but I use very loose baseball caps. I have not noticed additional shedding from the caps. I have had 4 AC's and 5 taxols. 7 more!!
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Thanks for the recommendations. i think some hat shopping is on my agenda this week..........
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Hello i am confused the oil castor did you use it during the chemo or after ? Also the biotin ? I had my first chemo, 5 more. I understood that better wait after done with the chemos for regrowth. Anyway we are going to loose them.? What do you think.?
I bought in walmart shampoo and conditioner palmers sans paraphens and sulphates with oil, and coconut. Now is ok. I will tell you how it goes. I guess the shedding starts in the 2 chemo.
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Regarding going out in public...it's difficult to go to work everyday and run errands looking the way I do. (I only told my direct supervisor and her boss so I can only imagine what other people in the office are saying). But I try to carry on as if I'm normal and just hope that over the next 6 months my hair will improve. Since I have been done with chemo for 7.5 weeks, I can say that I look healthier in my face so that helps me. I just don't want to jeopardize my hair by doing something just to please the public. That said, I have worn hats when it is so sunny that I feared a burn or if it is very windy. I put Toppik on my head which helps a great deal.
Vivianlu8- I waited until chemo was done before I started castor oil and hair vitamins.
Mquara - I am not sure about the different strengths of Biotin. I have sensitive skin so I decided not to try Biotin. I will start Evening Primrose Oil vitamins as soon as they arrive in the mail. That's supposed to help balance hormones and promote hair growth.
I tried the castor oil on my eyelids yesterday with no problems. I used a Q-tip to apply it my lids, but I did not get too close to the lashes. I will do this again tonight and try to get closer to the lashes.
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I used castor oil the entire time I was on chemo for my eyelashes. For brows EES.
Regarding supplements, I saw my doctor 10 days PFC and he told me that I could start taking Viviscal immediately. I didn't take it during chemo. I have an appointment to see dermatologist Carolyn Goh at UCLA. I watched a very long video she posted online regarding hair loss. She recommends #1 Viviscal and #2 biotin for supplements. She also talks about Hairmax laser brush being effective. I'm buying one. Bed bath and beyond and Nordstrom sell it for $495. BBB has 20% off coupons, but Nordstrom has better return policy ??? Don't know where to get it.
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Cali58 - Thanks for posting about Hairmax - looks amazing, and I had never heard of it. Let us know how it works for you. I guess with the shorter treatment times the advantage is that you can treat your whole head faster?
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Whew. I thought I was the only one still losing eyelashes and eyebrows 4+ weeks PFC!
For me, it seemed that my eyebrows grew thinner and thinner throughout chemo because they stopped growing, and then, about 4 weeks PFC, they all finally fell out. It's probably because those were "legacy" brows that grew before chemo. Now my face really looks funny with the bald brows, but I've been using a brow stencil and powder like this one with great results: https://www.amazon.com/Envy-Kiss-Beautiful-Brow-Ki...
The eyelashes are still missing 5 weeks PFC, but I see lots of tiny "sprouts." My ophthalmologist gave me Latisse, so I'm interested to see if the new growth comes in thicker or darker than they were before.
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I also thought I was the only one losing eyelashes and eyebrows. I'm 11 weeks PFC and I'm starting to see some growth in my eyebrows but not lashes yet. I'm going to try the castor oil that has been mentioned. Thanks everyone.
Also, I wore a baseball style hat that I got at Kohls, by Nike, it has some venting on the sides so air could get in. I don't think it made the shedding any worse.
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Hello Ladies, just wanted to give an update. I'll be 6 months PFC on the 22nd and all of the bald spots i got while cold capping are filling in nicely. However the hair color on the new hair versus the hair I saved while cold capping aren't matching up. Therefore if I'm going some where important I still wear my wig topper, but if not I just let the yellow hair hang out. The first is my hair after my last treatment on 12/22 and the second was taken this morning. The 3rd is with my topper on. I have at least 2 inches of new growth and have been taking Viviscal since the beginning of April. Cold capping may not be perfect but I'm still glad I did it.
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kshorten: you look awesome. I'm not having the best results either. I can't go out in public without a head covering (scarf or hat). When did you begin to wear the "topper". I think I will end up having to go that route as well.
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Kshorton. You look amazing. I don't think you need the wig topper. I think your hair looks fantastic. You've given me encouragement. My bald spot is bigger than yours, it goes from ear to ear right over the top of my head. I have just enough hair in front that I can pull my hair back into a ponytail/bun and fill with toppik but I am still shedding. I've been thinking it could,be years before my hair looked good again and your pictures show me that it could just be a few months.
Again...you look amazing!
Here's my bald spot just from the top, it goes all the way down to each ear It just doesn't look like it. You can also see my dry, flaky, angry scalp
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Thank you Mquara, I'm wearing the topper less and less and if I could get the color straightened out I probably would stop wearing it all together. It looks like your hair remained much thicker then mine and I'm glad you can pull it up and hide your bald spot, there was no way to hide mine. Hang in there and it will start coming back quickly!
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Kshorton - I had VERY thick hair to begin with. I am at at least 70% loss right now. It looks like there's more in the front than there is. Plus that was last week. I stink at taking pictures of my head. I don't know how you all are so good at it. I'll try new ones tomorrow, right now my hair is "done" for the day lol.
I can't wait to get past the shedding part and get to the growing part. When did that happen for you? I am only just now 2 weeks PFC so I know I have some time yet before I see growth but I am anxious like we all are lol.
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mquara, that is a really strange pattern of baldness! Especially since it looks like the rest of your hair is in great shape. What cold caps did you use? They must not have come into good contact with your scalp in the area that is bald, at least for one treatment. For those just starting out - contact is key! My Penguin rep encouraged me to push down on the top/crown frequently, to make sure there was good contact there.
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Just like PatinMN, I would press down on my PCC every 5-10 minutes while on my head, to make sure that the contact was perfect. I already had good contact thanks to elastic bands pressing down, but I was still pressing down on the caps.
I had great results, no bald spots, but also the "easier" chemo - Taxol.
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PatinMN I did the Dignicap. The medium cap was the best fit, it felt snug over the top but it did not completely cover my hairline. I would have had a receding hairline all around so the large is what they went with and as you can see that wasn't a good fit either as it was too big. They put washcloths over the top of my head on top of the actual cold cap then put the snug neoprene cap over that with the straps but that didn't work. I really needed something in between the two.
I contacted Dignicap about it and they had suggested to use an ace wrap over the top of my head for the last treatment but I didn't do that because I was already bald and scared it would make contact there at the expense of another area
I'm just glad I have the hair in the front still. I do have smaller bald patches in the back towards the top but that all is hidden when I put my hair up. I use a loose scrunchy to hold my hair up. It's not the neatest looking hairdo because I don't make it tight and use no hair spray for the strays but it's better than no hair so I'll deal..0
