Cold Caps Users Past and Present, to Save Hair
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Does anyone know of scientific studies about possible negative impacts of using a cold cap during chemo? I would love to keep my mane, but it almost seems too good to be true.
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Just got off the phone with Frank and I placed my order. He did specify to use panty liners for forehead and no moleskin. He also suggested Latisse for preventing eyebrow and eyelash loss. Have others had success with the Latisse?
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1 Tough Cookie - send a PM to 301724, she has all the research information. Many doctors and nurses will say that the cold caps can allow mets to the scalp but the research shows that the risk is not any different than in non cap users, which I think is less than 1%. Lots of their 'knowledge' is based on older versions of cold caps that didn't work very well, but the new ones can be very effective. I'm sure some of the other cappers will weigh in on this as well.
Warrior Woman, so happy to hear you placed the order. I think the moleskin will be better protection, but advise using a trick my PCC rep taught me to avoid the pain of pulling it off. Make a template of your forehead and then cut a moleskin to size. Just trim bak about 1/4" of the backing - enough to keep it stuck on your head but not painful when you have to take it off. You can trim more backing off the next time, so you can reuse the same piece if you want to. My MO advised me to wait on the Latisse until after treatment, so I did. My brows and lashes thinned but never disappeared, and post treatment they came back very quickly. I started the Latisse the day after last chemo but only used it a few weeks because the growth was fast.
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I used Latisse and never lost my lashes. I'd recommend it.
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I wouldn't use the Latisse for a couple of reasons. Taxotere/Taxol can cause eye problems i.e., tearing, blurred vision. You don't want to create additional problems. Latisse works by promoting a particular growth phase of the lashes. I believe it could make the lashes fall out sooner! I had a well known oncologist explain this theory to me and it made perfect sense. Most find that they don't lose their eyelashes or brows until after completing chemo! If you do, they grow back very, very fast, in a matter of 2-3 weeks. You can use eyeliner as a substitue for thin lashes. There are also very good eyebrow templates found at most beauty supply stores.
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My lashes thinned, but I never completely lost them. Lost half my brows about 4 weeks PFC.
I was worried about the potential for eye color change with Latisse so never risked it.
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My lashes have thinned quite a bit over the last week (6 weeks PFC). Same with my brows. I started Latisse last week and I've been using Anastasia brow kit from ULTA which I really like.. My MO advised me not to use Latisse during chemo. I didn't have a lot of excess tearing with the chemo but I did have a very annoying eye twitch that has almost resolved itself.
As for negative effects of the caps, I had researched and heard the same - that there was a small chance of scalp metastases with the caps but no more than those without. I also did not have any evidence of cancer anywhere else in my body after the cancer was removed from the breast. If it had spread to the nodes or somewhere else, I may have done more exhaustive research. I found that the nurses and doctors are still fairly uneducated with the caps - Frank told me 1000 women have used the caps in the US. Compared to the number of women who have BC that is a very small number. I was the first in my infusion center to use the caps and the nurses were very skeptical at first. At my last chemo the nurse who had made the most snarky comments declared that I had made a believer out of her. Mission accomplished.
I am still shedding a bit more than I expected to be at 7 weeks PFC, but I think I need to go back to babying my hair more than I have. The caps have made a huge impact on how I feel during treatment and how others have treated me. It is a personal decision for everyone, of course, but the right one for me.
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Thanks, Hope. Anyone who is interested - PM me with your e-mail address. I'll send the research bibliography I've compiled on the effectiveness and safety of cold caps. Feel free to pass on to providers and institutions.
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Here's a question: What about pulling turtle necks over my head? When I run outside I wear a tight turtle neck and neck warmer that get pulled over my head. Will that place too much pressure on my hair during the chemo process?
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Dancetrance - What is this I am hearing about eye color change with Latisse?
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And another question - I am getting advice about ice to suck on during the infusions and Frank mentioned drinking water heated to 98.6 degrees during the entire cold cap time. Can anyone help with this? I'm confused as to what I should be doing.
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WW, you'll make yourself crazy trying to do all these things. Generally, you should drink plenty of liquids during infusions. I vaguely remember Frank advising warm liquids but I did not and don't recall anyone on here doing that either. Water, ginger ale, a slushie, whatever tastes good at the time. Just drink something. You want to flush the drugs out of your system. I didn't take silica or biotin, didn't use Latisse and didn't ice my nails. I bought silica, but never remembered to take it. I didn't have any nail damage and my brow and lashes thinned a lot but I never lost them completely. I'm not implying that these things don't work. I just couldn't imagine putting my nails in ice while dealing with the cold from the caps. If I had lost nails I'm sure I'd be kicking myself for not icing, but most people don't lose their nails so I decided to take my chances. I plannned to use Latisse if and when I lost my brows and lashes but they never fell out completely so I just filled in with a pencil for a while. As for the turtlenecks, if they really pull on your hair, you should probably avoid them.
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Warriorwoman -
1) turtlenecks - I personally wouldn't think it would be an issue IF you are careful putting them on/taking them off. I'd try to pull out on the neck area with my hands while pulling it over my head.
2) eye color change on Latisse - very small risk, but it happens in certain cases.
http://www.nbcnews.com/id/32974056/ns/health-skin_and_beauty/#.UsgDB4uzKpg
According to the FDA, Lumigan, which uses the same formulation as Latisse, “may gradually change eye color, increasing the amount of brown pigment in the iris,” a change that occurs slowly and may not be noticeable “for several months to years.” Doctors, however, say this side effect is associated exclusively with dropping medication directly into the eye as opposed to painting it along the upper lash line. And that it’s extremely rare.
“Based on collective experience, people with crystal clear blue eyes don’t develop the iris pigmentation,” says Dr. Arielle Kauvar, clinical associate professor of dermatology at New York University School of Medicine. “The people who are susceptible to it are individuals with brown eyes or hazel eyes or greenish-blue eyes. But the overall risk is less than 1 percent and that’s with the medication going directly into the eye.”
And directly from Latisse's website FAQ's: http://www.latisse.com/FAQs.aspx#iis_regultory_data
CAN LATISSE® CHANGE MY EYE COLOR?
Dr. Marguerite McDonald, Ophthalmologist: This is one of the most common questions I get asked. LATISSE® use may cause increased brown iris pigmentation of the colored part of the eye which is likely to be permanent. While very infrequent, increased iris pigmentation has occurred when LATISSE® solution was administered. Do not apply LATISSE® in your eye or to the lower lid. Ask your doctor for complete application instructions.
I have blue eyes and just wasn't willing to take the risk, despite the first doc above saying it doesn't happen to "crystal blue eyes". I do have some green in them. Now, if I lost all my eyelashes and they didn't grow back well, I'd consider taking the risk. My lashes did thin and when they grew back I have one area that isn't super thick - but I can mask it with a certain mascara. I lost half my brows 4 weeks post chemo but they grew back in super fast - within a week or so!
3) Drinking warm water the whole time...???? Never heard that one. I definitely would recommend chewing on ice during tax (15 min prior and post, too - so 1.5 hours of ice chips). I didn't do this consistently after my first TCH and developed a few mouth sores...I was more religious about the ice chips my next 3 rounds and had no mouth sores! (Thrush, yes, but that is different from mouth sores.) As for icing nails/toes - I did that, too, and let me tell you, cold caps plus icing mouth and nails SUCKED for that 1.5 hours. It made cold caps alone a BREEZE. Seriously, the cold caps seemed like nothing compared to icing the nails. So you will have to decide for yourself on the icing of the nails/toes. It is pretty brutal, IMO, to do all of that together. I'm still glad I did it, b/c of no nail issues, but as jc254 said, plenty of women don't ice nails and don't have nail issues. It's impossible to predict if that will be an issue for you or not.
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Instead of a turtle neck, can you get those zip up fleeces that have the collar that kind of stands up or use a scarf? Just an idea of the turtle neck is stressing you out!
I started latisse when I started chemo. Once my eyes started watering bad, I stopped it. My lashes started thinning bad after chemo so I started latisse back up again. I did end up losing my lashes about 6 weeks PFC but within two weeks I had lashes again. I just wore my glasses and lots of eyeliner for those two weeks and I don't think anyone really noticed.
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JC - I'm already crazy so it cannot get much worse! LOL I just want to do all I can to help myself through this. BCO has been the best resource of all.
Dancetrance - Thank you for the wealth of information. I have light brown / hazel eyes and prefer they not darken. This advice helps a lot.
mdg - You're right. I will wear zip ups and scarfs. I'll wear my regular winter athletic gear next winter when this whole experience is a distant memory.
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I agree, breast cancer.org is a great resource. I had the pleasure of meeting Dr. Marissa Weiss, the founder of BCO, during a radiation consultation. She's a very warm and caring doctor who was treated for breast cancer herself.
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Could not have gotten through all of the BC crap without BC.org and my amazing friends here!!! Love you all!!!
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This was eight months PFC in my "bling room" where I get dressed - thanks to my friends and Penguin caps it is SO great to have my hair and still be ME.
Cancer did not win this round.
Here's to a great and HEALTHY 2014 for us all.
Hugs
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Sciencegal! In addition to great hair you have such a beautiful face. You look good, healthy and happy. You give me hope.
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Great pic Sciencegal!!! You have such a beautifully happy face, with hair to boot! Thanks for sharing your success. It's very encouraging for new cold cap user's.
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sciencegal, you look amazing! Greet hair, great smile.
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You look FANTASTIC, sciencegal! Yay!!
I'm ready for a trim Monday to clean up my straggly ends. Been letting it grow out and trying to baby it but I've HAD it with the gray roots and Naturetint doesn't seem to last long Almost 4 months PFC and new growth around temples is white - uck. But I have hair!
Hope to post a pic as good as yours one of these days. You are the BEST!
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Sciencegal - BEAUTIFUL!
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Greetings All,
I haven't posted here in ages but wanted to give a quick update. I kept about 1/3 of my thick head of hair using CC - what I lost is now about 2 to 3 inches long and filling in nicely but looks funny around my face as it's at the point of not lying flat but is wavy and a little unruly. 2013 knocked me on my butt with 5 surgeries and 5 chemo so I made a drastic change and had a professional color my hair from ash blond to dark mahogany with some golden highlights. I love it -
I wanted to address eyelashes and eyebrows. I lost both completely about 10 weeks after chemo stopped. I was shocked. I figured I was one of the lucky ones. Once they started growing again I had a Minky's applied by a professional and they lasted for many weeks. Enough so that when they all finally dropped off, I had sufficient new lashes to look good again. My eyebrows are still thin and haven't recoverd as nicely but with some make-up I can fill them in.
I received a gift from my daughter at the "kicking-cancer-to-the-curb" party she and her husband threw me in September. Nioxin Shampoo and Conditioner for thinning hair. This was recommended by her stylist and even my husband who has male-pattern-baldness feels it's helping regrow his hair. The only problem with it is the smell. It smells like Girl Scout Thin Mint Cookies and makes me crave those cookies all the time!
Good luck dear ladies who are going through such a terrible and tramatic time. I have to say that using CC during my Taxotere and Cytoxen treatments was completely worth the effort and expense. Keeping my hair was a way of keeping my privacy.
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there's been a lot if comments about the icing and protecting nails so I just wanted to add from what I understood the icing helps prevent neuropathy in fingers and toes. I know a number of people who developed it and had a rough time, even months after treatment. While the ice was very cold, I did it as a precaution and just tougher it out...it's only needed for the Taxotere portion, 10 min before and after...at least that's what I was told.
Science gal, you look so great!
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Hope49 -
I iced my toes and fingers but still lost two toenails - that's a weird feeling to suddenly have them drop off. Here's a photo of me during one of my chemos with the Cold Caps on, infusion lines into my body and ice on my feet and hands and a big fuzzy blanket I brought to keep me warm.
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Ha ha Amy I love it! I have a pic just like that of me, lol!!! So glad you made it through, and you love your new hair color!
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Good luck to all new cappers! My last chemo was July 31. My eyebrows and lashes thinned but I never lost them. I did have blurry vision as a side effect of my TC so I don't really recommend any treatments for them- don't worry they will grow back! I never had thin spots, but did have a lot of breakage and lost some of the hair around my temples and the nape of my neck which is very common. Now, you could never tell. All in all I have a worse time with radiation.
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Has anyone used the cooling bands for eyebrows? Is this recommended?
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Warrior - I learned somewhere along the way that the eyebrow bands were not as successful because they gave some people frostbite. I did get a "burned" scalp just along my front hairline after the first tx just because the cold caps were too tight and the skin wasn't protected, You really need to cut the moleskin so it covers all of your skin up to the hairline otherwise you could get freezer burn. It healed within 2 weeks, but was just a bother along with everything else.
I also iced my hands and feet during the Taxotere by putting snack bags with ice inside slippers and inside gloves. I think that may have been the toughest. I felt the tiniest bit of neuropathy coming on and then it was gone. I was so glad I had iced. Also, eating popsicles helped minimize mouth sores.
Finally, I was advised to take a gallon jug of water to the infusion and pour it into a cup with a straw and just drink, drink, drink. That is so important. I had a cup of warm tea during the first 8 minutes of the first cap (which is the toughest part, after that your head is pretty numb). and I also plugged in an electric blanket.
I was surprised these past couple of weeks to see my brows and eyelashes thin out so much, especially because now the hair on my legs and underarms is starting to come back. Reading about others on the board has been so helpful. So glad we have each other!
Sciencegal- thanks for posting. You look amazing! Love it.
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