Cold Caps Users Past and Present, to Save Hair
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Newgammy, I'm doing okay so far physically, I've got some SEs, but nothing I can't manage so far. My mental state has really taken a beating though. I hide it well from others, but it's wearing on me. I washed my hair this morning so for now my head feels good.
Vivian, I purchased some fake lashes and brows just in case, but I'm hoping I don't need them. I'd also like to know more about the lashes you're using. I got a few hats too just in case. I really hope I don't need those either. You look great. I wouldn't guess you were getting chemo from your pictures.
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Vivian, you look fantastic! I'd like to know more about the 3 week lashes too. I have tried to use lashes before and I, not very good at it. What is the brand of lashes and where did you get them put on? Do you think a sephora could do this?
I had my second TCH treatment today. The caps were really cold at the beginning but got more manageable at the end.
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congrats vivialu! So happy the worst is mostly over. Since I know you have a tough week or more ahead.
Happy day for you!
I just got my first color today a little over six months post chemo! Hurray I feel a little more normal!
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Elastogelgirl - Your hair looks fantastic! I thought the magic number for coloring was 12 weeks PFC. Did you wait six months because you wanted to lighten it? I colored mine last week at 11 weeks PFC with a natural product and so far, no issues, but I just darkened it slightly.
Vivianlu8 - Those lashes are amazing! I might have to look into getting something similar. I have a 1/4 inch gap between eyelashes on one side. Talk about weird. When my eyebrows started to thin, I used Gimmebrow by Benefit. It's like mascara for your eyebrows. It works really well for those days when I just don't feel like putting much effort into my eyebrows.
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Elastogelgirl, wow! That really closes the door to your chemo time, doesn't it? I'm far enough away that I can only dream about having pretty hair that can be colored and styled again.Your hair looks so healthy!
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Hello! Yesterday I finished with chemo!!!!! 4 AC + 12 weekly taxol.. It's all done now!!! I lost maybe about 50%, no bald spots, just overall thinning. I followed Penguin protocols. My shedding stopped at about 7th taxol treatment and when the new hair started to grow. I lost the most around my ears but it's growing fast. I iced my fingers and toes while on Taxol, so I don't have neurapothy. Cold capping is definitely worth it! Don't give up!!! Good luck to all of you!!!!
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After the last treatment with my nurse
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ykh - looking good! Congratulations on finishing, and with so much hair!
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ykh and elastogel! Looking good!! Lots of hair and healthy!
Brightness- time will pass, i can't believe I am 4 weeks PFC.
Vivi- eyelashes look amazing g! I am doing latisse, it's my second week. So i will keep you posted!
i am still shedding, counting the weeks to dye hair hoping the bold spot will look smaller but I am worried w shedding! Any ideas?!
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vivianlu8 - you look great! Congrats on finishing chemo! I lost all of my eyelashes about 1.5 months post chemo. I agree, I looked very strange without eyelashes. How did your eyelash extensions attach if you have no lashes left to attach to. Did you have individual lashes glued on? I did have fake eyelashes glued on once for a wedding but they fell of late that evening. My lashes grew back very rapidly with Latisse type product called Careprost purchased on line. In addition, I put Careprost on my eyebrows along with castor oil. My eyebrows fell out about the same time as the eyelashes but they have grown back thicker than ever.
Elastogelgirl - your hair looks fabulous! I cannot wait to color my roots. Did u use regular color with peroxide and ammonia, or a vegetable dye? I'm 3 months pfc so I'm waiting until 6 months too. I'm tempted to try a vegetable dye to cover my roots now but not sure it's worth it. I'm so please with keeping my hair I don't want to jinx it!
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ykh- Congratulations and you look great! It's amazing how keeping the hair can make a big difference. Take care of yourself and your hair over the next few months
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ykh- Congratulations and you look great! It's amazing how keeping the hair can make a big difference. Take care of yourself and your hair over the next few months
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Thank you everyone for the inspiration. Elastogel -- your hair looks great. 6 months, wow you must feel A M A Z I N G! I covet your dye job
To everyone that is done and posting to keep going - thank you thank thank you. THANK YOU.
Some days we just need a little inspiration - to keep going even if we shed, shed, shed, shed ... and more shed.
I have 2 TC's down and 2 go. My hair was thin to begin with, so I knew I was going in with a disadvantage - committed to doing it anyway - taxotere perm hair loss scares me. I don't have great odds with all things related to BC!
Also, without doing cold capping, I would be bald now and as much as my dirty/unstyled & thinning hair annoys me at times, its helping my mental state in so many ways. The privacy and just feeling normal, even if only for a short period of time -- helps so much with my 'fake it until you make it' approach.
And for those that are lurking, deciding and are worried about not dying (my last dye job was in late June). I have lots of roots and grays - I just use toppikk (2 colors blended) and a blonde root concealer. You will find a way! I am normally a 3.5 week root dye person in my previous life. I came up with this hair style, in trying to keep my bangs out of face without clips while working out. Gotta love rockin' the 80's scrunchie. Most of the time I tuck the rest of my 'pony tail' in the scrunchie (very loosely) just to keep it a little more 'safe'.
I am now going on 8 days without washing and getting creative. I decided to try to reduce my washing to chemo day and 3 days later. (I am using Dignicap). I also keep the combing and fussing with it to a minimum - even in this photo I can see my perma bed head a little, I was heading to the gym - not worth the extra comb.
I reduced washing and combing - Mostly because the thinning and seeing my head skin freaks me out -- the less I see it, the less I think about it. One meltdown last week, gave me this inspiration. I am better now (and also feeling better physically - as I am at the end of the cycle) and able to deal with it better.
Thanks again warriors -- your posts and encouragement to keep going really do help. Happy Hair Growing.
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Hello everyone,
This is my first post. The past few weeks have been really difficult and I am trying to gather the strength to deal with the next step in this journey, Chemo. I have meet with a MO, which was referred by my surgeon, who suggests a treatment of Taxotere and Cytoxin 6x. This facility doesn't offer any assistance with capping but does have Biomedical freezer. My family is incredibly supportive but they have concerns about doing this with no training. Does anyone know of someone in the South Florida area who may be able to help?
Thanks for your input!
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Thanks all of you for the compliments, i google a hair salon where they do eyelashes extensions, i had very little lashes i guess they could put me the new ones with those. They are mink eyelashes and they last for 3 weeks. So try and ask which hair salon can do it. Anyway I am going to take latisse. When i should start taking it?
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Its still me - try going to the dignicap and paxman websites and looking for facilities in your area that may have the machines. (basically go backwards -- find the facilities that have machines, if they work for you (ie distance, etc) -then find a MO that uses those facilities or see what you can do to have your chemo at those facilities. Chemo is chemo.
If you can't find a facility that works - you can also check out the Repunzel project - they might have a lead for you -- I see some people get helpers the first time or two -- to teach you how to do it w/ the manual caps.
Keep pushing and find a way - you will be happy that you did. Either way -- you and your family will find a way to make it work. Necessity is a great motivator.
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Elastogel...your hair looks so good! I know you were struggling with the growing out process, but it has grown a lot and looks great, love the color. Vivianlu8, you look great as well - your hair really hung in there!
I had my last chemo a week ago today. I felt like 1000 pounds were lifted off my shoulders! I had 4AC plus 12 Taxol and used Dignicap. I was not happy with my results, I lost so much hair and had to start wearing a wig about halfway through my treatments. But...now they are over and my scalp is fully covered by hair so I'm pleased that I don't have to start my re-growth from nothing. So, overall I'm glad I did the capping. I used to have long, thick hair but all that was left of the long part was a little rat-tail so I had my hairdresser cut that off today. My hair is now super short and super thin, but I'm hoping for quick regrowth. I'm also anxious to see my eyebrows and eyelashes return. I'm going to start tomorrow using Revitilash.
Good luck to everyone!
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Ykh, you look great! How wonderful to be able to put yet another step in this journey behind you.
I made it through treatment 3 yesterday. I'll wash my hair in a few days. I switched shampoos so I'm hoping it helps with the dry, flaky skin on my head. I never had that problem before. I wonder if it's from the extreme cold on my scalp? At any rate, I'll deal with it to hopefully keep my hair.
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You are all my INSPIRATION!!! I start chemo Oct 17 and "only" have to do 4 rounds of Taxotere/Carboplatin and I plan to cold cap. Oncologist said I should have good results. I have thick, long hair right now. I microbladed my eyebrows this summer (before diagnosis) so I am hoping that helps but I also have pre-purchased "human hair" eyebrow wigs that I must say look really good. So eyelashes are my concern. If they fall out, what do the extensions get threaded on to??? I just planned to uses a lash boost and purchase fake lashes for going out if needed.
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Brighteness i am glad you are done too. since the first time i was never convinced with dignicap or paxman, it sounds more easy than penguin or elastogels but since the temperature is not so cold and the time is only 2 o 4 hours in compare with 9 that i did everytime. I prefered to go with that. The results were ok and very glad i did it. Travelgirl my tip is after the 20 days of the first chemo the big shedding, detangle your hair before taking the shower that will prevent what happened to me. Half of my hair detangled in 2 pony tails that i had to cut. After that i dont comb my hair everyday just the day of the washing and everyday in a ponytail.
Good luck Travel girl with your best decision.
Have a great weekend ladies!
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Travel girl, thank you so much for the advice. I did find another facility that offers Dignicaps, DC, as part of their treatment. I'm getting a second opinion there next week. I am concerned because I've read that DC are not as successful as PCC. That concerns me because of the 6% - 8% risk of permanent hair loss with Taxotere. I will check out Repunzel today. You are so right, I have already found that being my own advocate isparamount.
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I think I'm having a big big shed. Today is day 21 after my first TCH treatment, but I had my second infusionyesterday due to a schedule change. I really hope that doesn't screw things up for me. I probably lost about 150 hairs today mostly from the top. Trying not to freak out. 😬
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Hi everyone, I completed my 6 cycles of taxotere and used dignicap for each one. I lost about 1/2 to 2/3 of my hair. It looks ok, thin... but it is still shedding just as bad as it did during active chemo. My last chemo was Aug 29th, 4 weeks ago. I am still on herceptin, but I was told that doesn't effect hair. I sure hope it grows back soon. I will be adding back perjeta on October 31st after my radiation treatments are completed. I just was wondering how long before we stop shedding? I am worried I won't have anything left by then.
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Its still me, I think it depends on what type of chemo you get, if you find my history -- you can see what advice Repunzel gave me when I asked. If you are doing AC (I believe) -- yes they believe (and admit its not scientific) that PCC has a better success rate. For me, they told me my chemo regime had good success with both, I went for the machine. Just to have one less thing to stress me. I still have/had surgery to sort out, which I am doing after chemo.
Vivianlu - thank you for the advice ... I will comb before washing -- just trying to minimize combing and washing. In the end, not sure it will help to shed less, just will help mentally.
SoniaL -- it must have been difficult to cut off your tail. Glad to hear your top is growing in, sounds like you have a leg up. I have appreciated all of your advice along the way.
I ordered a topper just in case I need it (and to maybe cover up some roots on special occasions) . I was able to find a topper that doesn't have an clips. I am still waiting for it to be delivered - it was from thinhairthick.com. Fingers crossed. I also plan a visit to the Lucinda Ellery salon in NYC in early Nov after I finish my last chemo -- I found the link on the repunzel site and it looks like they can do some interesting things. In short, I have a plan B.
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hi ladies - I’m only 2 weeks PFC but it still feels great! Just wanted to chime in that I get lash extensions as well every 3 weeks. They’re mink and seriously have saved me from feeling so bad. I was getting them before chemo as well and my lash lady said I didn’t lose lashes at all. I also used Latisse on my lashes throughout chemo. Didn’t fair so well with my brows - lost the back half. I’m using “rapid brow” which was recommended to me by another patient. She had been using it for 3 months and her brows were back to normal! It’s on amazon and in a purple tube for anyone interested.
For those who are shedding a lot - I’m still losing hair by what seems like the fistful but still no bald spots. I comb once a day with a wide toothed comb, mourn the loss of my hairs and then move on!! Keep going everyone - it’s worth it!!
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Carmstr835 - I was on TCHP and if you're like me, the shedding will start to taper around week 6. I'm 12 weeks PFC and I still lose at least 25 hairs when I comb it in the morning. At this point, I don't even remember what normal shedding looks like. The good news is that all of the thin areas have been filled in with growing hair so my scalp looks fuller than at my lowest point which was around 2 weeks PFC. It will stop, just keep treating it as gently as you can.
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angiepie.... with TC many people don't lose eyebrows and eyelashes until after chemo is over. I lost my eyebrows first, they came back quick and eyelashes went after that but also came back quick. This all started about 6 weeks PFC. I had bought disposable eyelashes but never used a single pair. I was in the middle of rads when my eyebrows and eyelashes fell off so I really wasn't overly self conscious as that's the only time I left the house
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Hi everyone! It has been a bit I am making my way through radiation. I have done 22 of 33. I want to let you know that on the radiation boards I found a green tea solution. You steep two green teabags and after treatment for put some on the radiated area with cotton balls and my skin is amazing. I saw so many pictures that freaked me out about how red I would get. My radiologist is amazed at my skin. Some Radiologist differ on opinion if people should do it but mine said it is totally fine. I also use aloe directly from the plant along with Miaderm lotion. OK back to my hair. I probably lost 75% of my hair after doing AC T. But my hair started growing back about week six of Taxol. I go into radiation treatment now and sit next to beautiful bald women and they all are amazed at my hair. I am so thankful Icapped. I have a few inches of growth I finished July 27. I use hair regrowth shampoo and take a Costco hair and nails supplement. It's growing like crazy!
My hairdresser cut it to all be one length above my shoulders. Tomorrow I go in for tape extensions and I'll post the before and after!! I am so excited!! I've never had extensions so we shall see.
Hang in there everyone I know it can be frustrating and scary. There are some weeks that you ask yourself if it's worth it with so much hair gone but as I go to doctors and see people with a few millimeters of hair growth I feel so blessed!! We are so far ahead!
Oct 16 I'll be done with rads! I feel like I've educated so many people on capping here in Oregon doctors and patients!
I colored a month after and did not lose anymore hair! I lost eyelashes and eyebrows sporadically after but 2 months post chemo they are full. I use castor oil on my brows and latisse on the lashes every night.
Ykh-wow u look awesome!!
Keep up the fight! Stay strong 💪🏻
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Hi to all- have not posted in a bit but wanted to weigh in--I am day 45 post starting 4 doses of TC and am using Penguin Caps--my daughter is my partner and has been a great cheerleader- the total 7 hours of capping each time is tiring and grueling- yes-BUT- I still have ALL my shoulder length hair!! I shed approx 30 single hairs a days since day 20- well within normal range anyway--I got some freezer burn the first time as some caps too cold-definite learning curve on that- and the hair broke off there and scalp flaked--matters to keep caps in recommended temp range--
I was never cold all over , was always moving around anyway helping daughter with the caps-- I used pelleted dry ice in 2.5 gallon freezer bags--4 bags -important to put in not to over full as you want to the bags to lie flat in layers below and above the caps- I get 35 pounds for the 4 caps and each time return leftover 10 pounds for a refund the next morning
I also still have all my eyebrows and lashes- even if fall out- will come back quickly-
I have to wonder if the relatively short post infusion times with the dignicaps contribute to what seems to be not so great success rates with retaining hair--? I capped for 4 hours post infusion. My MO told me that the TC protocol has a good success rate with capping--and only 1 more to go so am getting more hopeful with each passing day-the light in the tunnel is getting brighter-----going for radiation mapping tomorrow-this journey none of us ever wanted is moving forward---thank goodness----
really recommend the PCC-----!
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Hello! I've been using Arctic Cold Caps for 11 months now, 15 chemo treatments so far. I'm so grateful for cold caps. I had really thick long hair and it's much thinner now but most people can't even tell. I have no bald spots or super thin spots. I think it has been really beneficial psychologically for me and for my mom and daughter. I haven't had any freezer burn with mine, I change the part with every cap which may help. I was getting bad brain freeze but realized we were putting them on way too cold!
I'm wondering if anyone has figured out relatively safe ways/products to style their hair without breaking any of the cardinal cold cap rules. I did get a gentle trim to even out my length, the top dries kind of puffy and the long layers were looking scraggly. I sometimes curl the bottom about a week before chemo if I am doing something fun. But I have to go into the office occasionally right before chemo and am not supposed to wash it that close to chemo or use products etc. I realize it's my issue, my co-workers won't care but I do, to some degree. I don't want to look like Roseanne Roseannadanna!
Any tricks for flattening my puffy top part? It almost looks like a helmet sometimes with the new hair growth (which is grey and frizzy).
Thank you!
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