Cold Caps Users Past and Present, to Save Hair
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Before and after microblading today:
Quite pink because this was just an hour after it was done. This first visit was to test colours and lightly sketch in a very conservative shape. The next visit will be in a month, and that is when the real work will happen, and the shape will get better.
Didn't hurt much at all.
Here is with lancôme eye cream on my sparse brows three weeks ago:
I am keen on that lancôme brow makeup, but am down to a third of my brows and am hoping that microblading will give me better eyebrows than i had before chemo.
Sorry these pictures are so big on the page
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Hazel (and everyone else):
I did a lot of research before choosing a capping method, as I also had the DigniCap option. I actually spoke with the woman who was a research assistant at UCSF when they were doing DigniCap trials for fda approval( my husband found her on LinkedIn and she was so generous with her time and forthcoming with info). The big issue is that Dignicaps only come in 3 sizes- small, med and large, while penguin is a flexible, flat "slab" that is custom fitted head your head as it is put on (if done correctly). Some people on the DIgnicap dont fit into one of the standard sizes so the fit is not as precise. They end up with bald spots where the cap wasn't in contact with the scalp.
I hired a professional capper to "cap me" using Penguin Cold Caps. Yes it's expensive, but he brings all the materials, dry ice etc, makes sure the caps are on just right, times them and replaces them. The peace of mind is invaluable. Mount Sinai has the caps and freezer, so I didn't have to pay to rent them from Penguin.
So far, after 7 of 8 rounds (yes!!! The end is in sight!!!)I would estimate I have about 50-60% hair loss. Sounds like a scary high number right? But, with some Toppik and eyebrow pencil, everyone is absolutely SHOCKED when I tell them I'm in chemo. The first question is always "why do you have your hair?"
I decided that when I'm done with this journey, I am becoming a professional cold capper. Having my hair has made this whole experience tolerable. There is demand for cappers in the NYC metro area and I'm excited to help others through what is usually an intensely stressful time.
Here's a pic from between chemos 6&7. Can't wait to trim andbrush it!!!
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myraclaire, I'm from nyc....your info is life saving! Can I privately get in touch with you? I need to know everything...including how I can hire a professional capper. My center is mt Sinai in nyc tho I'm going to Sloan Monday for a 2nd opinion....I'm freaking out...if I can save my hair I feel like I can get through thi
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Hazel15--you aren't alone! I think the hair thing for all of us cold cappers was probably the most anxiety producing which is why we are doing all we can to save it.
Myrclaire--you are inspirational! I love seeing the hair for motivation!
Tunegrrl--I can't wait to see the final product, it's looking great!!
Runner--a half marathon? You are AWESOME!!!
Happy Thanksgiving everyone!
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Hazel15 - I agree with Myra I don't think the Dignicaps fit the top of the head really well. After my second treatment someone told me that they put napkins between the cold cap and the outer cap to make it tighter and I wish I would have known that sooner because I'm sure that's why I have the bald spot near my part. Also with Taxol the Dignicaps would cost much more money as each use is $600.00, where with the PCC you rent them by the month.
Tunegrrl mentioned Acure Organic shampoo and when I switched to it my shedding slowed way down so thank you Tunegrrl for that recommendation, I'm a believer.
I think if Dignicaps can do something with there caps then they will be the way to go in the future, but I don't think they're quite there. Don't get me wrong I'm thankful that they were available to me because I think I will still have hair when I'm done. Best of luck to you.
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Myraclaire - where do you find a professional cold capper? I'm using Penguin, I've rented them and it seems daunting.
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hanging in there-
I'm doing chemo at Mount Sinai in NYC. They gave me a list of a few cappers who they've worked with. I Spoke with each person on the list and chose the one I thought would work best for me. Despite the regimen and major shedding, I haveNo regrets!
Around treatment number 5, I realized that I want to do this for others. even a proficient capper is limited if they havent been through it themselves.
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Hanging in there, where are you located? I'm in the Minneapolis area and had my local Penguin rep train my helpers, do the first chemo session, and fill in when one of my two friends couldn't be there. I know she has traveled to other states - although it looks like your first chemo is coming up pretty quickly
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MyraClaire and PatinMN, I am in Maryland. Yes chemo starts on Monday. I found my Penguin Cold Caps rep, who is located in MI to be totally unhelpful. And when I asked where the video for cold caps was, her reply was "on the website". Which may I say they are changing and I couldn't find it. So no help from her. The doctor I am working with has never had a patient use cold caps, but the medical center is located in a suburb of DC which is not on the wealthy side. My husband is supposed to do this, but he has not read the material yet. So unless he does some serious reading, I will be spending a lot of money and losing my hair.
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For those who are PFC when did your shedding stop. I am four weeks PFC and it continues to shed a lot. Thanks!
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@ hanginginthere my PCC rep was from Michigan did she send me a video but that may be the same one. If not is there one on you tube?
Thinking of you as you start this journey
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Hanginginthere: Here's the link to the Penguin instruction video. My husband watched numerous times and did well. Hope it helps you and your husband! Good vibes to you.
https://penguincoldcaps.com/how-it-works/
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Myraclaire: You look phenomenally good!
Tunegrrl: Your brows are going to be fantastic. They already look great!
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Cr77 and Willa216,
Thank you for the good vibes. I did find he video on the website once, and then the website changed and I did find it on you tube. Thanks for posting it again. I guess I was sort of amazed that some people get help from the people who sell the caps, yet I got an indifferent person who was mostly interested in my credit card number. I plan on watching the video several times.
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Hanging in There I am glad you got the video. I have found this forum to be the most helpful in terms of information!
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Hanging In There--I think I have the same rep. I was so excited to talk to someone who had used one herself and she was using monosyllables for her answers and was more focused on my Fed Ex account number than making me feel like I could handle the overwhelming info on the PCC. But believe me, once you practice with your husband the night before, you'll feel better. My husband actually used an excel spreadsheet to help with the timing. Good luck!
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Hello Ladies -
Tunegrrl - Your eyebrows look great BUT your skin looks awesome, beautiful! What's your secret?
Myraclaire - you look great! Looks like you've done really well on PCC. Congratulations! We are on the same regime. I have one more AC, next week. How are the Taxol side effects on DD? Did you have a lot of shedding after Taxol?
I hope everyone had a great holiday and were able to relax and enjoy family and friends.
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luvmyys-
Congrats on being just about done with AC! I hope you will find, as I did, that the 4 DD Taxol rounds are waaaay less severe in terms of side effects. I haven't had nausea or queasiness and I'm not bone-tired all the time anymore. The worst Taxol side effect for me is the bone/joint pain mostly in my legs that starts around day 4. Advil has been helpful, as long as I Remember to take it around the clock. Also, have not been sleeping well the first few days while the steroids are still in my system (but thankfully no big crash like on AC).
By far the biggest difference for me is that on AC, the first week of each cycle, I felt like my brain was jello and each thought, no matter how mundane, had to pass through this crazy thick fog. It was an effort just to complete a thought and it drove me nuts. Thankfully, that hasn't not been my experience with Taxol at all!
I don't find that the shedding has slowed down, but I'm much calmer about it. At this point, if I have lost as much as I have and I can still get away without a wig or people noticing the thinning, I'm confident I'll get though one more round. It doesn't freak me out as much to clean out the sinkful of hair, bc I now know that you can lose 60% and still look ok (with Toppik and eyebrowpencil).
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Myraclaire - thank you for posting about your AC experience, I start in 2 days and haven't had time to read all I need to about chemo.
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Hanging_in_… - I'm through 4 AC and am 2 into a 12 weekly Taxol regime, all while doing PCC. Don't worry, you will get through it!
I didn't have much nausea with AC and I didn't have morning sickness either. They say the two are correlated. Also I heard that the anti-nausea drugs they give you have gotten a lot more effective in the past few years. My appetite really disappeared for a few days after each AC treatment and I found it difficult to taste food. I haven't had that experience with Taxol. I'm also much less fatigued, but more constipated (ahem). I wonder if the fatigue was partly related to not eating much, it's hard to say.
I have been losing motivation with cold caps, ever since I found out that because I'm BRCA1+ and I have to do 12 T sessions instead of 4. But it makes a huge difference not to have to wear a wig and I still have a lot of hair (see below, sorry the pic is so big), so I'm going to try to stick with it. Good luck to you!
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3mily,
Thanks for the info, it is just what I needed. Your hair looks good to me. I wasn't really sure about eating. Hopefully I won't be particularly hungry since if I'm going to be so tired, I might just want soup. And if I end up not being able to taste very well, maybe I'll stick with beans and rice and LOTS of salsa! I heard last week I wouldn't be able to taste sweet and bitter, so I had a big ice cream sundae over Thanksgiving to say goodbye to sweets.
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Hi ladies, I wanted to know how all you ladies PFC are doing with coloring your hair now that it's been some time. I'm 10 PFC and ready I'll try to wait 12. Any suggestions please!
Willa,I hope your feeling better. You posted that you were going to see a therapist and I would like to see one too. Which Dr gave you a referral? I have a lot of anxiety at night and don't sleep much. Also, I have Madison Reed and read the ingredients and don't see Aluminum. Am I looking in the right place ? Mine is brunette.
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Hi Meow, hope you're doing well after chemo.
I colored my hair and got a trim 5 weeks after chemo. I had heavy shedding and the color didn't make it worse. Week 11th I had color and, cut off my hair very short. Shedding at that point was moderate. It slowed down once I cut my hair short. Since then I've colored my hair 2 more times and trimmed also. My colorist has been using A Demi color for ppl who are allergic to dyes and she's followed PCC washing protocol. I'm 21 weeks PFC and no shedding. Planning to continue using the same hair color, but get some highlights next time which will be 6 months PFC. I'm taking vitamin Viviscal for hair growth and my hair seems to be growing at a decent pace now.
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I am 5 weeks PFC and I had cut thehair I have left to about 5" long all over (pixie) 6 weeks ago. Stopped shedding totally at that point. Hoping to make it to 3 months like PCC suggests. It is growing, just not my 2 bald spots, grrr. I can tell by all the grey which does look so awful, worse than thinning hair. I ordered the color from London that everyone raves about. Just afraid if I color sooner it will start shedding again.
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hangin in- good luck at your first chemo. You will be fine. Chemo is certainly disrupting to one's life and it isn't fun, but just think of all the people before you that got through it. And you will too. You kind of go into a survival mode and the next thing you know, you're finished!
Don't expect your side effects to start right away. For me it took a couple of days. You might just feel tired the first 24 hours. It's weird kind of watchful waiting to see what happens. Mine started when I woke up on day 2 after. It felt like the flu and a bad hangover all at once. I kind of took the attitude that hopefully it was making the cancer cells feel as bad as me and they would give up and die.
You will be in my thoughts!
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oh and one more thing- the cold capping the first time is stressful but you'll get the hang of it and it will be no big deal for the rest of your treatments. Just make sure the caps are cold enough (but not too cold) and it fits really snug in all areas. Double check the top of your head. I thought I had mine tight enough but I guess I had a gap on top because my bald spot grew with every treatment. Even so, I'm happy with my results and the bald spot was easy to hide. Now it's growing out really thick.
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Meow & KD2016, how much hair do you think you ended up losing? I would love to see pics.
Just curious Jiffrig, how long your hair was to begin with and why you cut what you had left so short?
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Runner, I noticed you had the same regimen I'm on, CT. I'm using PCC. How much hair loss do you feel you had? I've only done 1 round so far. How many did you have?
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sorry for the dumb question, I'm learning as I go. What does PFC mean?
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Meow, I used Daniel Field (from UK) its a powder that you mix with water and shake until it turns into a foam. It covered perfect and(knock on wood) ever since i colored i have had less shedding. I will be 18 weeks PFC this Wednesday and I colored on Novemver 8th.
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