Cold Caps Users Past and Present, to Save Hair
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Pch,
Thank You!! I start radiation Monday, but chemo is in the rear view mirror!! Thank you for answering me!! I find myself feeling anxious and vein, ( I'm a Leo) lol, but really wanted to know!! I know like most of us chemo is to keep us alive, but we are allowed to feel beautiful too while doing it!! Hang in there all you beautiful ladies!! It works!!!
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Wow, Angiel, you look fantastic! I agree, I'd have no idea you were doing chemo either! Did you manage to keep eyebrows and eyelashes too??
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Angiel - your hair looks amazing! Congratulations on your success with cold caps!!!
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Angiel,
You are looking great!! No one would ever imagine you've been doing all this chemo. You are a poster girl for PCC
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Angiel, you look fabulous! So what is your advice for someone starting on this journey? My first treatment was yesterday. Now I want to wash my hair as usual but know I can't.. How did you keep your hair from driving you insane? What shampoo? Did you tie it back lightly? Please help! Michelle
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Angie....amazing!!!
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unite shampoo
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Welcome Michelle! My advice is just to do as little as possible with your hair. I know the lack of washing can drive you nuts in the beginning but I found that AC was so drying on my hair. In a matter of weeks, it was no longer greasy due to the lack of washing - the AC will dry it out and your scalp will become used to less washing and thus create less oil. I used the Oribe and Unite products throughout the past 5 months. My one staple product was the Unite 7 Seconds (spray, leave-in conditioner). I used it daily whether I washed or not. Days that I didn't wash, I used it prior to combing my hair. I also used their Beach Day spray quite a bit on non-wash days to give my hair added volume and texture. I wore my hair pulled back into a low pony quite a bit using an 80s-style scrunchie. I also did loose braids a lot. I spent a week in Grand Cayman between AC & Taxol and wore a loose hat almost every day. I know that's frowned upon but I didn't want to burn my head. It didn't seem to cause any more hair loss. Many days that I didn't wash my hair, I still rinsed it with cool water. I exercised 5-6 days a week and my hair was just too sweaty to not rinse it. I always used one of those turban-type towel wraps for my hair and on days that I didn't rinse or wash, I used a shower cap. I also recommend sleeping on a silk or satin pillow case. I never did find hair on my pillow or in my bed. One more tip.....I take Biotin and Silica supplements & I really believe they have helped with my new hair growth. Please private message me if you have more specific questions, I'd be happy to help.
Well, I finished yesterday and can't believe this 5 month journey is finally over! I thought it would never come. I'm rewarding myself with a spa trip to Chicago tomorrow. Peninsula Hotel here I come! Time for a little R & R.
I just want to say thank you to all the ladies on this board who have answered my questions, given advice, tips, etc. through this process. I spent nearly 3 weeks prior to chemo reading all 13,000 posts on this thread and took pages of notes. The information was so helpful and I found this board to be such great support through my journey with the caps. Have a wonderful weekend ladies! Wishing you all the best with your capping - and your chemo!
Angie
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Congratulations Angie! You made it through beautifully! Have a wonderful, relaxing trip.
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Angiel/Alibeths, which Unite shampoo did you use? I see volumizing, moisturizing, etc online. Did you use a cream conditioner and the spray in? Been using Giovanni 50/50 shampoo , occasional Ovation crime rinse and the Kenra spray conditioner, but hair getting really dry (last TC is 7/9). Did anyone use a hair masque or deep conditioner on ends??
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Scarlett, I use the moisturizing line of both and yes, I use the cream conditioner as well as the leave-in spray. During my AC treatment, my hair was the driest and I found that I liked the creme conditioners from Oribe better. And yes, I used both Oribe's and Unite's deep conditioner on the middle lengths and ends throughout my chemo. Even though I didn't wash my hair more than twice a week, I rinsed it with plain cold water almost daily & used one of the creme conditioners mentioned above on it every time.
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i used the mouistre one. I also used the Kenra spray on conditioner only, never and regular conditioner. my roots and hair are SO ugly but who cares!!!!
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Congrats, Angie!! You look great. Best wishes as you move to the other side!! Enjoy your trip!!! ♡Kim
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Hi ladies,
I completed my first round of chemo on June 18. I used the dry ice method and the Penguin cold caps. Hopefully I and my helper did everything correctly but it was kind of hard getting the temperatures right. I think we used some caps that were too cold and maybe some not cold enough. Today is day 13 past my first chemo. I have lost a lot of pubic hair, so I know the chemo is working, but not noticed a lot of shedding from my head yet. I have noticed a general thinning of my hair, but today at the top of my head I have a spot that is itchy/tingling, sensitive feeling. A few days after chemo, I had some amount of frostbite and flaking in that spot where I guess the caps were too cold. The rest of my head feels normal. Have any of you experienced this itchy tingling feeling, even using the cold caps? The onco nurse told me that I would feel tingling before my hair started to fall out. I'm pretty worried that this is the start of going bald :-(
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Hi!! I am 3 weeks past 6 rounds of TC. YOU WILL KEEP TOUR HAIR!! the tingling is normal. Try and not pick at your hair and scalp!! I know this is hard, but if you do, more hair will come out. I had what felt like frostbite every time on the top!! Oft will be ok. Follow the rules. Do not use a brush, and wash only as directed with cool water. Do not wash chemo week!! I got dry spots that would peel or flake off. I took a comb and would hold the roots and gently comb them out. It seems like a lot but you get used to it!! Good luck!! And let me know if I can help you!!
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Congrats Angiel! You made it and you look fantastic. I'm so happy for you! Enjoy the Peninsula … fantastic way to celebrate! Love that place.
Wildflower, a lot of us have trouble controlling the temperature for each and every cap. If they're too cold when you pull them out, then have your helper knead them and let them warm up a little. Knead for a minute or two then recheck the temp. When they come out too warm, then go to the next one and see if it's colder. There is some wiggle room per my rep, but try to keep them between -30C and -35C and you'll do okay. (Preferably not often at the warm end though.)
Make sure you wipe the condensation off before each cap change! A damp cap will give you frostbite. I got it on my last infusion. The skin will start to dry out and sort of peel up or curl at the edges. You can very gently peel it off. It comes off pretty easily after a few days. Don't force the whole thing at one time if it isn't coming easily. Try the next day. I lost just a tiny bit of hair in one particularly burnt spot. Keeping the caps dry should prevent this. Some people have also used cheesecloth over burnt areas to protect them next time around.
I think we all get the itchy tingly scalp sometimes. Just don't worry about it. If you're losing body hair but keeping the hair on your head, you should do fine. You will most likely shed around day 21 and keep up for a little while. That's expected. Just try not to stress and follow the protocol. The caps work.
Melb44, I realize you got nauseous with the caps (before Taxol). But if you let the nurses know you've experienced nausea then they will probably premedicate you with antinausea meds that should help while you're capping. You might also try asking for a tranquilizer scrip from your doc. It's not out of the question that you might feel stressed and need one during chemo. It's worth a try.
BB, my shedding picks up periodically too (10 weeks PFC +/-). Sometimes I think it's the heat (outside). Or hormonal shifts or something. My girlfriend just told me my hair looks great this morning though. So, still hanging in. (And also getting these ridiculous tufts of regrowth around the crown where the shedding was the worst. I'm grateful, but they're pretty hilarious looking.) I think a lot of people experience this increased shedding periodically. I just try to ignore it. (Because, as we know, stress causes … alopecia.)
Good luck summer cappers! At least you don't have to do that cold rinse in the winter. Brrrr. (I know. Cold comfort.)
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wildflower,
Pick up an inexpensive infrared thermometer on Amazon, they're 15 bucks we did that after rmy first chemo as I got a bit of frostbite. You point it at the cap and it gives you the correct temp so so can adjust abd be sure it's not too col
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Pch, I started tamoxifen a few weeks ago, so I was wondering too if it could be contributing to my sudden shedding. But I've also read previous cappers' messages and it seems that a lot of them experienced shedding even 12-16 weeks PFC.
How nice you friend told you your hair looked great - that had to feel good. Nobody in my surroundings told me that yet.
I'm not seeing any regrowth yet, I would be happy to see it. I don't think I would look more ridiculous that I already do. My eyebrows started growing at least, so far in bushy looking little islands. I'm hoping it will all fill eventually. No eyelashes yet, other than a millimeter-long soft fuzz at the edges of eyelids.
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BB, that's exactly how my brows/lashes were. I can't remember. Are you using Lumigan or Latisse? My doc prescribed it for me specifically related to chemotherapy-related hair loss and my insurance covered it with a $40 copay. Once they started coming in and I started using Lumigan again (it didn't prevent the loss during chemo), both grew so fast. It seemed slow the first couple of weeks but now I have thick lashes, regular eyebrows, and my second unused super brow pencil sits in its box on a shelf. Be patient. It will happen. (I know it's kind of dreadful when you have to draw your face on every morning. But it won't last!)
PS: re: great hair, Toppik hides a multitude of sins.
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Pch, I got Latisse. I did argue with my insurance company, told them that it is from chemo, that the prescription was from my MO. They still wouldn't budge, they call it "cosmetic".
I started using Latisse about a week ago. It better work, it cost me so much money!
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It will! I've never had lashes this thick before. And they were pretty decent before this hell ride.
(I was denied coverage at first too. But the screening board said that if the doc wrote it "for chemotherapy-induced hair loss" they might approve it. Perhaps your doc already wrote it that way. But my insurance company, which doesn't even cover wigs because there are donors at our hospital that subsidize/donate wigs to cancer patients, covered it. It's worth a try if you can get your doctor's office to write a letter---if you haven't already tried it. Either way, your lashes are coming!)
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Pch, my insurance company wouldn't cover Aloxi for my nausea, even though Zofran was not helping me. So I suffered through 12 weeks of Taxol with almost constant nausea.
I bet my husband $10 that insurance wouldn't cover Latisse. He doesn't want to pay up until he calls them and tries to argue. I will gladly pay him $10 if he can get them to cover it.
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Pch,
How long after your last chemo did your eyebrows and lashes come in? I used latisse all through and almost one month after I seem to be losing eyebrows and lashes. I have used latisse since feb!! Also how long till you saw regrowth in your hair?? Thanks!!!!😁
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Hi Girls - I never lost brows completely, just got thin. Lost bottom lashes but top stayed. I was also denied Latisse through my insurance company so I went with Rapid Lash. Used it towards the end of my treatments and still using it now. I'm 16 weeks out from last chemo treatment. Lashes are definitely getting thicker and bottom lashes are all back. Regarding shedding, I still lose a few hairs a day. May be what's normal for me. I just never counted before being diagnosed. Lol. I also started Tamoxifen about 2-3 weeks ago. Haven't noticed any additional shedding but I have read it can cause thinning. Awesome ugh!!! My hair above my ears (which got very thin, almost not there) is growing like crazy. About 2 to 3 inches long and I was almost bald there. Also seeing crazy hairs popping up everywhere like PCH! Hang in there, it will all come back...even places you wish it wouldn't
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how does everyone deal with the fizziness and fly always? I look like I stuck my finger in an electric socket!
Also I feel like my hair is growing insane! I want to chop off like 4 inches but know I can't and shouldn't. It's just starting to look straggly. (And I mean the hair still left on my head. There's no new growth!
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StefLove, can you dampen your hair using a water spray bottle and then use a leave-in conditioner to smooth it a bit? Then try taking 1/2 to 1-inch pieces and gently twist. Keeping the hair twisted together as it dries can help with frizzies and fly-aways. I bet the summer, humid weather doesn't help things.
I know what you mean about a cut....Friday I will be 2 weeks PFC and I think I'm gonna go in and get a couple inches taken off. My hair looks so stringy & dried out on the ends.
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StefLove - I agree on the frizzies. Not much seems to help. I did break down and put some bumble and bumble Defriz on the ends. My real problem is the new growth on my crown (at least I think it's new and not broken hair!). It is coming in white and is about 3/4 of an inch ling and sticks straight up! very attractive!
Last chemo Thursday and the caps are going back!! How soon do you think I can use Color Wow? Has anyone used the Rita Hazan spray root touch up post chemo??
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Scarlett, you can use Color Wow now. It doesn't hurt anything. And congrats on almost being there!
Re: frizzies, you all can use whatever kind of styling cream helps as long as you don't apply it to your scalp directly. The only downside is if you're washing infrequently, it can weigh your hair down. But it's all about the scalp. Don't worry about using it on your hair as long as you're not slathering it on and trapping it in the follicles. A little defrizzer won't make your hair fall out. Just be gentle/spare in the application. (This is my unofficial, nonsanctioned advice.)
Beatcancer, Latisse doesn't prevent brow/lash loss. It only promotes regrowth. I'd say all that started regrowing within four weeks PFC (lashes almost transparent at first), then it took about 4-5 weeks to fill in to the point where I looked myself again. Maybe 8 weeks total PFC? But it gets increasingly less bad very quickly once they start to fill in. In retrospect it seems very fast, but it dragged in the moment. Hang in there. As far as hair is concerned I have funny tufts all over that are giving me awesome cowlicks around the crown. It actually looks sort of cool. (Always look on the bright side of life … Monty Python--Life of Brian.)
Goldenpaws, nice Kojak reference. Love you, sister.
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Hello,
I am new to the forum and would like to get some information about chemo cold cap. Have anyone had previous experience with "chemo cold cap"? I know it is a newer company, compared to Penguin cold cap. I was wondering if their cap is comparable.
The sales person @ chemo cold cap seems to be more responsive than Penguin cold cap, so I am debating which company to choose.
Thank you for the feedback.
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alice-You can buy the same caps that Chemo cold cap rents to users. The can be found on Amazon and other sites online. You'd need a set of 8 caps which would cost @$720.00 total. If you'd only like to rent the caps, the Chemo cold cap company also provides coolers and supplies. I'm not sure if they provide the dry ice. I have helped 3 people successfully with the Elastogel caps, which are the caps the Chemo Cold Cap company uses. I've also have helped dozens with the Penguin caps.
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