Cold Caps Users Past and Present, to Save Hair
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Congrats to everyone who has recently finished! I know I was so relieved to finally take that last cap off. I am 10 weeks PFC. My hair is still shedding, but it looks about the same as the picture I posted a few weeks ago. Most of my eyelashes fell out about two weeks ago, but they are coming back in now and I am hoping they don't fall out again! My eyebrows thinned but are back to looking normal now. I am still planning on getting some highlights in about three weeks, so I will let y'all know how that goes.
Today is my last radiation! Yay!
To all the ladies still going through treatment- hang in there! The caps are totally worth the hassle and you will be done before you know it. I can't believe it has been over four months since I started chemo and I am so grateful to still have my hair.
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Re: returning the caps and getting the final month's charge pro-rated: Any thoughts on the benefits of keeping the caps for the full month (so, I'd have to send them back by April 23) and doing the hour / two hour "boosts" throughout the week? Schoolmom: Did you have any heavy shedding during treatments?
And, Daye, you are so right: taking that final cap off was a huge relief. And to anyone who's just starting, I know it seems like a long haul—there will be days when you think you can't do one more treatment—but it's over before you know it.
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Ang7, Thanks for posting your photo! You look terrific. I remember talking with you before I did cold caps, thanks for helping me out. Like you my hair is dryer than before but looks so much better than it did when I lost it the first time around.
WW, The hair doll sounds fun. I have an entire head of thick shoulder length hair that I cut off when I did chemo the first time. Looks like so much less hair in the bag than it did on my head. I didn't save any of the hair I lost when capping. That just seemed to be a potential source of anxiety that I didn't need to feed.
Welcome new cappers! You won't regret this.
I'm glad to see more and more success with elastogels. I love the PCC product but the price is just too high for most people to consider so I am glad there is an alternative that is showing success.
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Texas - I love the idea of starting another board where we could each do one post with our general details and picture, that would be so helpful for the prospective patients to review vs. paging through what is now a very large thread! We could also post key tips and guidelines to make them easy to locate. Then this thread could be used for the day to day support and questions that come up. If you can get this set up, i'm on board for sure!
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Texas & Hope - There is a thread for Cold Cap tips - CC Tips It isn't used often. It would be a good place to consolidate all the advice and point newbies in that direction. Many of us have read all the threads on this thread. It took me days. I focused on those with the same chemo regime as my own. I wanted to see their experiences for comparison. I think Texas is suggesting a post final chemo thread for the purpose of discussing issues such as regrowth, hair cuts, etc. Am I correct?
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Hi all. I've been away for a while and just trying to catch up. Sounds like everyone's doing well- welcome back Schoolmom.
Agness, I'm glad you decided to try cold caps. I think you'll be glad too. You were almost (but not quite) as skeptical as Warrior Woman : )
Daye, congratulations on finishing active treatment. When is that celebration cruise? The shedding will stop, four months seems to be the magic number. In fact, I completely stopped shedding at four months and then didn't shed at all until recently. Really, I don't think one hair fell from my head for about 5 months. I'm now 9 months PFC and just started noticing what I consider to be normal pre chemo shedding when I wash, comb etc.
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JC - You think I was skeptical because I thought you were a plant and this entire thread was one big conspiracy? Baahahahaaaaaaa Eeeheheheeeee Woohohohhhhoooo!
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I would also be happy to share pictures, experiences and photos on my blog. Most of the traffic is from people reading the cold cap parts of my blog.
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Day 17 after 1st of six TAC hair starting to shed. Found about 50-80 in the drain and another 10-20 while combing. Mostly breakage as I still see the shorter ends sticking out my head. Not sure if this is a good sign that cold capping is working.
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Hello;
I am having chemo #4 on the 14th... I have scabs at the front of my hair by my forhead and about 2" back at center part... I believe it was from chemo #1 cuz about 3 weeks later they started forming.. I probably had the caps too cold there. I really don't know what to do about that area? I am noticing thining hair there.. a small bald spot. Any suggestions? i am Not putting anything on the scabby area cuz i don't want to block my follicles any further. Really worried I will lose all the front hair.. I have not had Any hair loss on my head except for the scabby area in front. Any suggestion?
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azie - I lost hair after each treatment, but not tons.............I believe for me the shedding continued for 6 weeks afterwards and I thinned out in the back with that. I was still using cold water and babying my hair but that is how my journey went.
mrygolds - Sounds like frost bite scabbing. I had that on the top of my forehead the first time due to not completely protecting the skin from the cold. My thick hair protected my scalp.....hah.
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Mrygolds - I'd like to suggest going to see your PCP. I agree with Schoolmom that it sounds like frostbite. If that is the case you need to get it treated. At minimum, they can give you a topical antibiotic.
Pam - Hang in there. They say they're working if you have most of your hair on day 21.
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It took me weeks to go through this thread. I think dedicated "hair photo" and "tips" threads are a great idea, but the rules would need to be very clear. Unfortunately these boards are not monitored for content and as a result the content can be overwhelming. Also BC.org doesn't prevent the boards from being indexed, therefore I have altered my photos to protect my identity.
I'm 23 weeks PFC. I don't shed anymore than I used to before chemo, but the cumulative effect is showing and my hair is much thinner than it used to be. I used to have to really work to get a "blow out" straight style but now it's the only option as my hair won't hold a curl. I've been thinking about getting clip in hair extensions to fill out my hair, but maybe I just need to get a haircut. I still don't regret capping, but I do grieve my thick curly hair (my before photo is after a flat iron). Perhaps it is time to take some hair vitamins?
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M - Your hair is a lot like mine although I am 20 weeks behind you. Yes, there is a difference in the fullness but your after photo is still looking very good. While I don't want to dismiss your feelings, we have not had to face the trauma of seeing ourselves bald and your regrowth is evident. My plan is to wear a looser more *wild* style for a year or so as I gradually trim it until the regrowth is enough that I can even it to one length and let it all grow back in. And so we sacrifice thickness for a year or two and avoid baldness. mdg used extensions and they looked great. Hopefully they help you feel better.
Ladies - Speaking of regrowth... drum roll.....
I HAVE BABY HAIRS!!! Weeeeheeee! *Dancing on my tippy toes!*
3 weeks PFC and I spotted them. A whole bunch of fine 1/2 inch long hairs growing in under my hair around my face. My husband claims he cannot see any in the back but I swear I can feel them as I run my fingers through my hair. Of course I was worried that even with the caps I'd have the taxotere induced alopecia and it would simply be a matter of time until all my remaining hair was gone. Another small victory for me!
And in other news, I got a call from my hairdresser. Turns out one of her clients goes to my cancer center and started chemo this week. She asked to talk with me about using the caps. WTH! It's too late. Every single employee of that center knows the caps worked for me and this woman was never told about them nor given the option. She learned about them a few days too late from our mutual hairdresser. My husband argues that they have no responsibility to inform patients of an option that is not FDA approved and it would perhaps be a liability for them to even do so prior to FDA approval. Perhaps. But still. She was all excited based upon what my hairdresser told her until she learned that she was a few days too late. It will be interesting to see if she confronts them with her disappointment with not being informed.
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Yey for the baby hairs warrior women!!!
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Schoolmom, should i just leave the scabs alone? they don't hurt or itch, they are just there. had them since 3 weeks after chemo 1. really in a quandry about this? PCC says don't use anything near/on the roots or you could suffocate your hair follicle, so putting something on the scabs would be something they say no too.
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Did anyone else have red spots on their face-cheek area? mine are little raised red spots. not painful or itchy just noticeable.
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Mrygolds - I'm not sure if you saw my post but I want to reiterate this as it is important. You may have frostbite and that can be very serious. I don't want to alarm you but I think it is important to get to your doctor. It's not something to ignore. Frostbite can cause necrosis. It's best to have it treated immediately but now is better than not at all. There are varying degrees of frostbite and what you're describing sounds like it warrants treatment. At minimum, they can give you a topical antibiotic. PCC does not have medical doctors on staff. They only say how to avoid frostbite and not how to treat it.
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Here is a thread for us to share advice and stories on life after cold caps.I am SO looking forward to having one place to find all this great info. Sorry ladies, but I guess I am just too lazy to dig back through these 360 pages now that I am looking for different kind of info than I was last fall
I am getting my energy back and there is too much other stuff I would rather do. Woo-hoo! 0 -
WW - Congrats on the baby hairs!
Actually I did loose all of my hair when on ACT in 2007, so I definitely know what that's like. The bangs take a painfully long time to grow in, at least a year before they looked like an actual style. It took 2 full years before I had the length back in layers, and 4 years until I was able to grow the layers out into one length. When I look at my hair now I see old lady hair and I do not like it!Mrygolds13 - Sorry to hear about your scabbing and rash. PCC's protocol is aesthetic not medical advice. I know you don't want your doctor to scold you for using the caps, but they might have important info that can help you make an informed decision. Do you feel that the caps were at the recommended temperature and did you change your hair part between each cap? If not that could be a change to your system next time.
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mrygolds, you may have some of the frost nip or the scaly patches many encountered. I had some frost nip on the widow's peak after my first treatment, and after a couple of weeks the little patch pulled away and took along with it a number of hairs (which grew back quickly). I know many others have posted about large flakes coming off as well. So it may not be serious but I do agree with WarriorWoman it's best to just get it checked out.
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mrygolds-It sounds like your issue is two-fold. The scabbing near your hairline, and the rash on your face. A few other user's have also had the scabbing. At your next treatment use a double layer of gauze to protect the area that the moleskin isn't covering. You can also use plain old vaseline to keep the skin moist. The rash is likely a reaction to the Taxotere. Several of the women I've helped with the caps have developed a rash. It often occurs on the back, chest or face. Read the Taxotere label insert. It is one of the more common side effects. You should speak to your doctor about this because it can be treated very easily with Valtrex.
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Mrygolds - I had frost bite too and it's nothing to be worried about. It will eventually peel off and leave a bald spot, but it will also regrow pretty quickly. Mine did. The worst part was having the scabs lifting as they looked like giant dandruff, just try to soften them with water when you are washing your hair. Maybe leave the spots to soak a while. Some use a bit of cider vinegar in their rinse water to help wash away build up and I think it might help with the bits of skin from the frost bite. Don't put anything on the spots as it will gum up your hair.
m1970 - I think you are going to find that you will be having a thick crop of new hair growing back in between the hair you kept. I did. It quickly filled in and gave me volume that I had lost.
My hair was also dry and broken after my chemo and while I was glad not to be bald, I was not happy with the way it looked. I had it shortened a bit to help it look fuller, but it still brushed my shoulders.
You might consider taking Biotin and liquid silica in the form of BioSil to help your hair grow. I use both and have a full head of healthy hair which gets complimented often. In fact, I can see from their faces that some people do not believe that I went through "real" chemo less than two years ago because my hair is so long, thick and shiny looking.
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Mrygolds: I got a rash on the left side of my face two days after each infusion. I thought it was the chemo, but it ended up being from the Decadron.
So, here are some photos, taken six days PFC. (Warrior: so glad to hear you have baby hairs. I could use some!). The first photo shows the worst bald / thin spot. I did two rounds of IVF right before chemo, and my nurse told me that's likely the reason for so much thinning on the sides. Obviously, it's less noticeable if I take some time to comb it properly. Second photo shows thinning on the top (and some flakes—the result of a little frost bite). Third is properly combed and with a headband. I'll probably be wearing headbands for a few weeks.
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TAC #2 tomorrow. Still shedding since day 18 but no noticeable thinning yet. Does the shedding ever stop?
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Mazie - You look adorable! Amazing how we find ways to camouflage the thinning. I cannot see the back of my head to know if the hair is growing in everywhere but I am glad it started to grow. My hope is that as it starts to thicken, it will hide the thinned areas. I too do what reminds me of the bald guy's comb over. LOL
Pam - Good luck tomorrow. I have had constant shedding beginning day 18 but it was only bad days 18 to 30. All the other days it has been light. I'm 3 weeks PFC and the light shedding continues. It's different for everyone and you are doing the TAC. Good luck with # 2.
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Not a good day today. I developed a lot of bald spots on the top of my head while switching between caps. Maybe hair is really about to come out or I should have used shower cap that could have lessen the tugging and pulling.
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Hi Pam: Are you holding the cap in place while it's being put on? I had to put a hand firmly on the top to keep it still. I used Penguin Caps. You're using Elastogel, correct?
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hi ladies. Question for you. Nurses have suggested Emend would be the prescribed anti-nausea medication for me. Seems hair loss is a side effect, despite nurse indicating it wasn't. If I pursue cold cap therapy, what alternatives can I ask for and how well did they work for you?
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Kazzy - I had Emend, and I did great with the cold caps. Yes, I shed, but everyone does. I never shed so much that I had any bald spots - lost the most at the nape of the neck and above the ears (classic spots), which was covered perfectly by the rest of my hair.
I was thrilled to have Emend. It is the "cadillac" of antinausea meds - very expensive - but very effective. I did not suffer from nausea.
If you still do not want it, other alternatives are Zofran and compazine and Aloxi. I had Emend plus Aloxi in my chemo cocktail by IV and then took Zofran by pill for several days post chemo to prevent nausea.
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