Cold Caps Users Past and Present, to Save Hair
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Scarlett,
My doc at UCSF is Laura Esserman and I wouldn't have had a clue about those caps if she hadn't told me about them. People who see me can't believe I just finished chemo 6 weeks ago they are truly amazing
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Chloe2015, shedding is normal & will likely continue daily. I started shedding about 18 days after my first AC (end of February) and I've shed every day since then. Some days were maybe 50 or so hairs and others well over 200. The caps protect your newer hair follicles. The hairs that shed are the older hairs - ones that may be several years old. As long as you are shedding evenly, and aren't losing clumps and patches of hair, the caps are working.
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YAY for pch!!! I'm so very happy for you. On to bigger and better things, my friend. xo
Chloe - Regarding shedding, it usually starts around Day 20 and can be pretty bad for about 10 days. I'm almost 3 months past my last treatment and I'm still shedding lightly. You'll go thru times when it seems really bad but you'll make it through just like the rest of us. It will be so worth it in the end .... You can do it
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Angiel,
Thanks for your reply. Your hair looks great so I'm hoping that my shedding slows down and I don't end up with bald patches. I'm afraid of even brushing my hair except with my fingers - are you styling or brushing at all?
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Chloe - I was told not to use a brush at all. Just a wide-tooth comb. Also, I had to train myself to keep my hands out of my hair, another no-no. I never styled my hair at all - just let it dry naturally. I know some people do some styling of the ends, but my hair isn't that long. Just make sure you never do anything that pulls on your hair.
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Chloe - I agree with what Pat said....I only use a wide tooth comb on my hair twice a day day. The only styling I do is to twist it gently in sections when it is wet so that I end up with beach-type waves after my hair has air-dried. Then I gently fluff some of the ringlets with my fingers. I did use a blow dryer once on cool when I needed to have my hair dried sooner but for me air-drying is easier. I still use a loose fabric scrunchie to hold my hair back when I exercise or I wear it in a loose braid. Other than that, I don't touch my hair.
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Hi all,
Just a quick update for anyone considering Cold Caps. I am 5 days PFC! Yay. And the caps worked!!!
I had TC X 4 (every 3 weeks). My oncologist had 1 other patient who had used caps but no one at BS office knew about them nor did any of the PAs or nurses at the onc office or the infusion center. They were all supportive yet skeptical at first and kept singing the praises of wigs--BUT NOW, they are all amazed, showing me off and asking for pamphlets and more info and seem very excited to share my experience with others. Plus they can see the difference it's made for me--to me it was about 2 main things--being able to look in the mirror and not see a sick person/feel normal and privacy/it was up to me who I wanted to share my story with not up to others when they would have seen me bald/scarved/wigged. The onc office staffcalled me their "super patient" and said many times what a great attitude I had--I credit keeping my hair with much of that.
I'll try to bullet point my experience here:
-used Penquin Cold Caps. Got "used" ones for $300/month and got a $300/month grant to cover that expense from the Cold Cap Assistance Project.
- I used dry ice. Had to purchase 2 coolers, a thermometer, moleskin. Purchased about $50/80 lbs of dry ice for each treatment.
-I used Burts Bees shampoo, cool water to wash my hair and a soft t shirt to gently dry it.
- I also used only a wide tooth comb, no brush. I used some Moraccan Oil on the ends to help with de tangling and basically followed all the instructions sent to me by PCC.
I shed a lot of hair days 18-21+ after 1st chemo. It was disheartening to me, to be honest--BUT no one else could tell. The other sheds were not as heavy. I tried to wash my hair only 1-2 times per week and comb it only once a day. The shedding after washing and during combing were heaviest.
Between round 2 and 3 I could really see the loss of hair around my hairline /sideburns area, but again I don't think anyone else noticed. No problems with scalp or part areas.
Now I must tell you, I had fairly thick hair to begin with and it is thinner. It feels kinda straw-ish, dry and with all the styling restrictions, I don't LOVE the way my hair looks right now--but I LOVE that I have hair! And I love that my back to normal timeline is pretty short. CANNOT WAIT FOR A SALON DAY WITH A GOOD SCRUB, CUT AND COLOR and that is just a few more months down the line.
My two bits of advice, that my timeline didn't allow for, is to make your decision early enough so that you can get any cut/color you want in the allowed indow before you start chemo so that you are starting with hair you love. I waited too late and was already overdue for cut and color and now my hair is much longer and darker than I would like--BUT I HAVE HAIR AND IT MAKES ME VERY HAPPY..
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Thanks to all who replied - your support and suggestions have been so encouraging! My hair looks a mess because I have not brushed it or styled it - kind of hard to go to work looking like that. But it's all in the name of hopefully keeping most of my hair!
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OMG! Thank you for possitive stories!!
This would be so great! But I'm so anxious about it. I am still very new to this and just went for a 2nd opinion from a local BS. First opinion was in NYC with a woman and I didn't know enough to ask her about cold caps. But I know the center she is affiliated with has a freezer.
I am facing chemo, lumpectomy, radiation and hormone therapy. My biggest fear is the hair for all the reasons all of you listed. I can't look sick. I can't. I will not be able to handle it and most importantly, mentaly, keep my job...which I can not lose either.
The second BS I saw today, here in the boonies, is a man. He does have impressive crudentials. I did ask him about cold caps and he dismissed it as too expensive and effort to deal with. Freaking man! I did like everything else he said, although a little egotistical, but I deal with that every day at work and actually am OK with it....its familiar, lol!
Ugh, this is so freaking hard!!!!!!
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The 20 day shed hit me today and is hitting HARD
Please please reconfirm that this ends soon and when did it end for most people? It just seems like it's never ending and it's only 10:30am. Yesterday I showered and it wasn't too bad. I woke up this morning almost swimming in lost hair in my bed (ok thats a slight exaggeration I know I'm sorry lol) and every time I gather my hair together there's at least 30-50 strands that lost their fight to stay on my head. I'll post a photo later of my garbage can from this morning just getting ready for work. I've already also lost a hundred or so more while at work. *sigh* Please tell me this lasts only a day or two
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StefLove, I'm on Day 27 and it has slowed a bit. Started on Day 18. I'm on Taxotere and cytoxen x 4 and had #2 on 5/21. Here's the info on shedding rates from TC from UCSF
"Of the 33 women who have finished using the caps and did the same chemotherapy regimen as you are, the average amounts of hair loss they reported at each cycle were: 13% at cycle 2, 20% at cycle 3, 27% at cycle 4, and 30% at a follow-up appointment. I'm not totally able to give you a picture of what is normal, because there's been a good amount of variety in results between different patients. For example, at cycle 2, about half of women said they felt they had lost less than 5% of their hair, but 2 women reported losing 50% of their hair."
Hang in there!!
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thank you scarlett!
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Steflove, my biggest and worst shed was between days 20 to 30. It will slow down, I promise. Just remember that you will lose some hair and most of us cold cappers did shed a lot around 20 days after first treatment. It will feel like there is tons coming out ... I've been there, cried a lot and then realized after going through 4 TC treatments, I STILL HAVE HAIR. Not the best looking hair, not the thickest but its still there and I'm not wearing a wig. Hang in there .... you'll be fine. Positive thoughts heading your way -Kim
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thank you goldenpaws!
Yea, the tears have been coming in full force, this morning was a rough one too but hearing everyone on here is helping. I know everyone must feel like a broken record every time a newbie hits day 20. No matter how many times you read about the shed it's hard to prepare for it! 
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dumb question! But did anyone spray tan? I def don't wanna get my hairline wet w spray tan!!!! Thanks!!!
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Hello Cappers! I continue to follow your stories and celebrate your successes, as well as empathize when you shed and believe you'll be the one the caps don't work for - hang in there!
I'm posting today to see if there is anyone in the Chicago area who's planning to cap. We have a full set of supplies ready to share with the next local capper. PM me or BBwithBC45 for info.
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Alibeths - yes, I've spray tanned 3 or 4 times throughout the last 4 months of my capping to no ill effect. I pull my hair up loosely in a scrunchie & then top with 2 of the really sheer caps that the tanning salon provides. I do wear the nose plugs too as I lack nasal hair. I know it's trivial but having a tan when I otherwise don't look like myself is a nice treat.
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thanks angie
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hi Scarlett! Another UCSF capper here. Good luck to you. I participated in Dr Rugos study ( data collection) for cold capping, and did very well on a difficult regimen. (50/50 hairloss w AC T) I was pregnant, so that made a difference, I think. I didn't lose any hair during, and I started losing hair two months PFC. However, this corresponds to four months Post partum, which is when you start to shed anyway. I've been losing about 50-75 strands per day, so a lot, but I'm trying not to worry yet. I'm expecting it to continue until about six months. I'll keep the board posted. I am now three months PFC. Probably going to get my hair bleached in two more months if my shedding slows down. I can't wait to be blonde again
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Wow Gatomal, I can't imagine going through all this while pregnant! How amazingly difficult! Makes my hair concerns seem more than trivial. I went for a trim Friday and told my stylist (who I've gone to for years) no more than an inch. Wanted to bob my hair a bit since I have to air dry and have a slight wave. Now freaking out because she cut in much shorter which a) not so happy with my puffy steroid chemo moon face and b) worried she cut too much and will hurt cold cap results. Also thinking, why do I have short hair if I'm spending all this time cold capping! Argh! Anyone "accidentally" cut too much while cold capping? It is an inch in front and two in back.
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Gatomal,
having seen you a couple of weeks back, you're looking good! I cannot wait to get my "true" color back. So far we've been being careful and I'm doing fine but I want my highlights etc.
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how long did everyone's first shed last? Mine started on day 20. It's now day 26 and the shedding shows no sign of slowing down
there was one day it seemed lighter but this morning it was like my first day all over again! 0 -
StefLove, about day 28 it stopped very abruptly. Hang in there
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scarlett, abruptly is good!
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StefLove, if you don't have a satin pillow case, get one. I was losing a lot of hair on my pillow case until I got one. Love Amazon Prime - got it hte day after I ordered it!
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StefLove, mine sheds daily....some days maybe 100 hairs other days closer to 300. I guess the type of chemo and frequency will make a difference. I have 3 weeks left with 3 more Taxols and hope I have enough hair to hang on until the end....
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My hair has thinned drastically, BUT I am seeing varying lengths of new hair all over. Some of it has a little curl to it! Next monday is my last chemo - can't wait to ship that stuff back!
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Hi ladiesI was wondering if anybody used cold caps while on Taxol. I would appreciate it if you share your experience with me.
Thank you
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Katie,
I cold capped during taxol/ herceptin and it worked beautifully. I started with shoulder length hair and that's what I had when I was done. I finished. Chemo April 17th
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Katie, I used Penguin Cold Caps for my 12 weekly Taxol/Herceptin treatments. I've shed some hair but no bald spots; still shedding but overall I think I lost less than 10% of my hair. I'm 3 weeks PFC and some people are still asking me when I am going to START chemo, so I think it's a success.
I'm very happy I did it, for me it was worth all the effort and money.
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