Cold Caps Users Past and Present, to Save Hair
Comments
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Toughcookie - Did you see the recommendation here to use cornstarch to help loosen matting/tangles? (That would obviously be used on dry hair.) If it makes you feel any better, I had to do 6 rounds of TCHP - each lasting about 5.5 hours.
I'm about 9 weeks PFC at this point. I shed a LOT during my infusions and am still doing so daily. But hair is also growing; my thin spot on top is starting to fill in with frizzy salt and pepper hairs that stick up in all directions and I have darker new growth over my ears. What is left of my existing hair is thin and has grown from the chin length I'd cut it to pre-chemo to about shoulder length. It's so gray, thin and scraggly that I'm wearing a wig pretty much full-time now when out of the house. I will go to my stylist in another month or so when I'm allowed to color and have her cut it back to chin length again and then see how I feel.
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Starting chemo in two weeks. Twelve weeks of Taxol. My MO says I am definitely a candidate for cold capping. She' brought it up in our first meeting, but stopped short of making a recommendation.
So my question is -- how did you guys decide which company to go with?
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I used Penguin Cold Caps and finished my chemo on April 24, 2018 (4 rounds of Cytoxan and Taxotere).
Ladies, how long after your last chemo and cold capping session before you stopped shedding hair? It's been 3 weeks and I'm still shedding. Just wondering when it ends?
I do have some new growth starting where I had the most loss (along neck line and up around my ears). Also I read somewhere that people have used Nioxin and other products to help with regrowth and thinness.
If you used Nioxin and it helped, which products of theirs did you use? Other products recommended?
I have blondish wavy hair. And of course it was nice and thick prior to chemo and is now very thin but I was able to retain enough that no one would know I had chemo since the length covers up the bald areas. Hoping to get my fullness back someday
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Mobscene, I’m using Penguin Cold Caps. There are no facilities in my area that offer either the Paxman or Dignicap systems. The main reason I chose Penguin is that they could get the caps to me a couple days before my first chemo treatment. I wanted to give my hubby a chance to practice putting the caps on me before the big day.
Jsan, Thursday will be just my second TC so I can’t help you. With as much shedding as I’ve been doing these past two days, I’m wondering if I’ll have any hair left after the fourth and final treatment.
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Hi Maggie, I just had my 2/4 TC last Wed. I'm definitely shedding and thinning, but careful pin placement covered my thinning areas (crown/part). Good luck with round 2
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Rwns, thanks for the support. My husband says I have no actual bald spots yet on my head. The hair is just much thinner all over. I'm just concerned that if I continue shedding at this same rate, I'll have nothing left by the time Chemo #3and #4 roll around. The crazy thing is that it looks as if my arm hair has become longer, thicker, and darker!
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Great, of course the arm hair survives! 😣. Go figure!! I don't want to get ahead of myself, but for now, my shedding has about stopped, as has the itchy, flaky stuff. I’m just 7 days past round 2, so I may start up again but fingers crossed! Wishing you a good infusion tomorrow Maggie
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By the upcoming Memorial Day weekend, I'll be 8 weeks PFC. The shedding of my already short hair has slowed. New growth is sparse, and the thinnest area seems be (no surprise) the rear crown portion of my scalp. I'm feeling relatively safe planning a hair styling trim over that weekend. The timing is to coincide with a planned family visit to celebrate my niece's high school graduation two weeks later.
The bigger question is: how safe is it for me to have it colored (no highlights until late summer!)? I'm looking at the Madison Reed line of hair color, as it doesn't appear to contain any of the harmful ingredients we've been told to avoid. My plan is to purchase what I need online, and have the color applied by my salon. Am I asking for trouble or inviting disaster?
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Hi Everyone! I've been offline for a few weeks after finishing radiation, i just needed a break from...well...everything.
I am now about 16 weeks PFC. I started blow drying about 2 weeks ago and got a haircut last week. Just yesterday I got my hair colored for the first time. PSA for first time coloring (single process): I probably should have told the colorist to keep it on for less time, but I didn't think about it and my roots are crazy dark compared to the old colored hair. Better than when it was mostly gray, though. My scalp is also still (TMI) dry and crusty in spots, which was a problem for me all along. I am still washing it less than I used to...just doesn't seem to get dirty until about 5 days from washing (I used to wash every other day).
Re body hair: I never lost all of it but I have less armpit hair now (and also less hair on the backs of my legs). I lost about half of my lashes after I was finished chemo but they grew back quickly. I wear glasses and no eye makeup so no one really noticed).
The good news is that I still have almost all of my hair. I definitely shed during the process, and the shedding just stopped a couple of weeks ago (which is when I started blowdrying again). But my haircutter and colorist both said they couldn't tell the difference. And now that it is cut, styled and colored, I am starting to recognize the person in the mirror again (of course I look like I've aged about 5 years in the last 9 months, but that's another story...)
i did the dignicap, and did not end up with excessive thinning on top, but i have a huge head so that may have had something to do with it. my infusion center brought in the paxman machines after i had already started, so that was pretty much my only option.
For those of you struggling with hair loss despite the caps, I'm so sorry it hasn't worked out as well for you. I hope you still feel it was worth it and that hopefully you will be back to looking like yourself much sooner with the caps than without. i posted my update mostly to encourage anyone doing weekly taxol to consider coldcapping. I don't think there are that many of us here right now, but it really works well with that protocol. of course, it's also a lot more work (and expense if you are using a machine) because there are more treatments.
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Hi again,
I'm planning to use Penguin caps starting next week. Still don't know if it will be Taxol or Taxotere, but I'm told that since they are both in the Taxane family, I should be ok.
Here's my question: can I really not wear a hat or head covering throughout my treatment? Do/did any of you cover your head? I have very fair skin and I cover my head in the summertime when I'm NOT getting chemo! I'm just not sure I can go without. I would love to hear from anyone who has thoughts on this.
Thanks in advance!
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Mobscene207- I am currently using penguin cold caps also. I know they advise against head coverings. I believe they want your scalp to stay cool and also coverings can pull on your hair and possible create more hair fall. That said it's summer and burning your scalp in the sun can be a problem with chemo sunsensitivity and thinning hair not covering the scalp the way it did prechemo. I recommend wearing a breathable loose head covering in the sun. You will want the protection. I tried to do without and my scalp got roasted. I now wear a baseball cap loosely if I’m going to be outside.
. So far the caps have really helped me retain my hair. 5 treatments down. Last one is next week. Good luck with your capping and treatments. You can do this.
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Thanks for the feedback and encouragement Rockcity. The details of coldcapping are stressing me out more then I thought
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mobscene- don’t stress over coldcapping. Just do the best you can with it. All of us hope to be the person whose hair looks great after chemo, but I think everyone loses some hair (results vary greatly) and the hair we have gets dry and brittle. It seems like almost everyone at the end is glad they capped, though
If you have any questions along the way, this thread is full of ladies that will help you. You can always private message me if you want to.
You got this!
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mobscene- I wouldn't worry too much about the head coverings, I used hats ( loose) throughout winter and some baseball hats and I dont think it added at all to my losing more hair. Just make sure its not pulling hard and when u can I would take it off and let it hair breathe.
4 weeks pfc here . . Shedding hasn't seemed to slow down but it's not alot either. I showered today and def got some long strands. Hoping in next couple weeks to see new growth on my balder spots( I check everyday) and no shedding
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Help!
I am supposed to start chemo on Thursday, 5/24. I had researched cold-capping and talked to my MO about it. Her response was it doesn't work and do you really want to restrict the flow of chemo so close to your brain. So I had resigned myself to losing my hair, bought a wig and some ball caps. Last night I met a woman who was the first Dignicap patient at a local hospital. She had fantastic results with the same prognostic markers as me (ER+/PR- HER2-, grade 3) and the same chemo regimen (dose dense AC x4 then Taxol x12).
I like my oncologist BUT I would really like to keep my hair! My daughter is getting married next June and I'd like to have more than a few inches of post chemo hair! She also had no idea what a Mammaprint test was and did not want to do an Oncotype as I had 3 positive nodes.
I'm calling the other oncologist tomorrow morning to ask some questions and see about switching. Can't find anything in my searching that addresses the possibility of brain mets after using scalp cooling - scalp mets possibility is low regardless of using scalp cooling or not.
Just wanting some wisdom from those here, I know the decision is entirely mine to make.
Thanks!
Kim
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Hi Kim,
My oncologist is the one who told me about coldcapping. She admits she is skeptical about the results, but says she has reviewed the studies and is believes the science shows that it does not increase your chances of metastasis to the brain or scalp. A handful of her patients have tried it, with varying success, and she is considering adding a machine to her practice.
Whatever you decide - good luck!
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I am 2/4, using PCC, and have to agree with Rockcity...I always use a loose cover of some sort in the sun to protect my part and crown area, which is where thinning is most.
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KDrake,
I completed four treatments of taxotere and cytoxan and kept my hair with Penguin Cold Caps. Cold caps have been used in Europe for around 20 years and now several brands have received FDA approval in the US. The chance of brain mets is so minuscule. There’s no reason for women on nearly all breast cancer chemo regimens to lose their hair when they can cold cap. There is even a group on here that got me through the whole process.
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KDrake, I too am using Penguin, and so far so good. I have round 3 on 5/30. At this point I have had some thinning, but not enough to be obvious to the outside world. Hope it holds up for 2 more rounds
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Kim,
My oncologist who said at the beginning that cold caps won't work with 4 dense AC + 12 weekly taxol and I am wasting my time and money, was amazed with my results at the end of the treatment. I used PCC and lost about 50% (overall thinning) and I am so happy I did not listen to him and did the cold capping!!! Now my oncologist said he will recommend cold capping to his other patients
Definitely cold cap - you won't regret! Just follow the PCC or dignicap protocol how to take care of your hair and you should be fine. Good luck to you!!!!0 -
I go for round 3 of chemo this Friday. If I end up sick and febrile neutropenic for a third time there will be no round 4. The top of my head is pretty bald. I lost 50-60% of my hair after round 1. I’m using the Paxman system. I get away wearing hats but did get a wig too. I have been told I can wear a surgical cap to cover my head but it isn’t necessary if I don’t wet the top of my head. I asked the Paxman rep about gauze to covering the bald spot in gauze but they recommended the surgical cap instead. What would you ladies think of gauze or is nothing necessary? I don’t like the idea of the surgical cap since it will
cover read I still have hair. I just want the top covered. Excuse the messy hair, I have been wearing a beanie all day.Happy cold capping!!!
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Maggie2 - I thought the same thing.......about the thinning and how much I was losing. I even called the cold cap company worried that I would waste my money if I kept going. They told me if I still had that much hair on my head at 21 days from 1st chemo, then I was going to make it. So we kept on capping and I am so glad we did. Yes my hair is much thinner and I have bald spots, but they are covered up by the hair I have and the average person would not know I went through chemo
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ykh - How long has it been since your treatment ended? How long after treatment did you continue to shed? I am 4 weeks since my last chemo and while I do have some new growth in the bald patches where I lost hair, I am also continuing to shed hair. Just wondering when the shedding stops.
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Jsan, thank you for the encouraging words. I intended to call Penguin today to talk to them about the amount of shedding I'm experiencing. I am Day 5 post T/C #2. I keep reading all the testimonials on the Penguin site and then the stories from lots of ladies here whom had virtually no shedding until PFC. It is scary to see my hair thinning so much.
ToughCookie, I will be interested to hear if you decide to use gauze or the surgical cap for your next treatment.
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Tough cookie-Definitely looks like you have enough hair to protect. So I understand why you’re worried about covering it up. I have thinning in the same area and go in for #3 next week. Also wondering if capping would cause burns on an area so thin, but still want the cold capping effect. Let me know if you see a response on another post
Maggie, how did round 2 go?
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Rwns, thanks for asking. Round 2 is going so much better. For all of you suffering from horrible SE's, I heartily endorse all the recommendations to talk with your oncologists. I was ready to go to the ER after my first T/C, I felt so horrible. I just had my second T/C this past Thursday. They made a lot of tweaks with everything from the rate of infusion to changing the pre-meds, adding more IV fluids, etc. These past several days, I don't feel great, but the SE's are definitely tolerable. My MO even called me on Sunday afternoon to see how I was doing this time around!
As for the hair shedding, Sunday was post chemo #2 shampoo day. The amount of hair loss was really scary. I've kept my hair in an extremely loose pony these past few days to contain all the falling hair. I try to comb, using a very wide-toothed comb, only twice daily.
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Maggie-glad to hear your team was so responsive! I feel ya on the shedding, and yet w/o capping, I guess we’d have no hair by now maybe? But it is tough not knowing what to expect, rate of shedding, etc. I’m getting by with careful pinning, but now the lashes are about gone...wore false lashes today for 1st time.
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Rwns, beautiful hair and great profile photo. I've been in the grunge state since chemo on Thursday. No makeup even. I've noticed the eyebrows and eyelashes have become quite sparse these past days. I'm blaming the sorry state of my hair on the fact not only did I have the BMX in Jan, 2018, but then I had the partial nephrectomy in March, and then more anesthesia for the port placement in April. I knew my hair was in really bad condition going into chemo.
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Maggie-Wow, that’s a lot! I guess lashes are the least of your worries!! However, if you do the lash thing, don’t rub your eyes at work...learned the hard way! 😜. I’ll post what round #3 does to me shedding wise. Wishing you a continued good round 2 recovery.
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toughcookie- I feel like my hair was similar for my last capping session and I just combed my hair from the front to the back and covered the bald spots some to give it some protection. I didnt have any damage to my scalp , it felts slightly more cold. Good luck!
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