Cold Caps Users Past and Present, to Save Hair
Comments
-
do you guys just wear a shower cap when taking a hot shower
0 -
I just clipped my hair up when I took a shower. Never wore a shower cap.
0 -
I do wear a shower cap if taking a hot shower. Mostly, though, I still rinse my hair with cold water even if not shampooing since I exercise almost daily and my hair is so wet from sweat.
0 -
Steflove, we all look for validation from our docs and staff. We all want them to be openly encouraging. But here's what. Sometimes you just gotta keep walking into that office with hair. And finally there you are. Not bald. On round two or three. And then the skepticism starts to melt away. It's not a bad moment actually. It's a pretty good moment. Just forge ahead and follow the protocol. You'll be fine. Good luck!
0 -
Yes, I completely agree with PCH (Hi). My radiology oncologist was skeptical too. When I showed up for my first appointment a few weeks ago, he spent a half hour asking me questions about cold capping after he walked in and was surprised to see me sitting there with a full head of hair (actually he was confused and thought he had the wrong patient). He is now convinced it TOTALLY WORKS!! Always a great feeling walking around with hair
Never thought I would be saying that!! lol 0 -
PCH is so right about the docs. I kept waiting for my MO to acknowledge that I still had hair and it wasn't until my last infusion that he finally gave in. And it wasn't that he was anti-caps or anything, he just didn't know anything about modern capping. It was always a wait and see, "everyone sheds differently" attitude. He did say at our last appointment that he had to admit that capping seemed to work. So don't let the docs or staff stop you...I think most times they just haven't seen it in action to know it really does work.
Hey Kim! How are rads going? I get set up tomorrow and start the daily routine next week. Any tips or suggestions?
0 -
hi all, I been reading a lot of the post. I am on AC chemo and been using cold caps. Next week will be my 4th AC, I am debating if I should give up. I have thin hair to begin with and been shedding for since day 21, I will say about 100 strands per day. I probably lost 20%-30% my hair so far, which I know it's pretty good result as I would be bald by now without the caps. I am looking for some encouragement or/and advice if I should continue.
0 -
Can anyone help me get my BC/BS to cover the caps? I am 2.5 months PFC and my claim was denied. I had seen PCC or Rapunzel Project's site cite coverage for some patients. I am submitting the NYT article and the Netherlands study but my MO wants a template or letter that was successful as an example for her. Please help!
Thanks! So glad I still have about 70% of my hair :-)
0 -
Hi MiMomma - rads are going good, so far. I started last Wednesday on my birthday (happy birthday to me, right?!). They say SE like fatigue and redness will start in about 3 to 4 weeks. How long are you doing radiation? I'm on a six week program because of chemo. They would have done a quicker program but they don't want to mess around with me becoming run down. Today, they called to say the machine was not working ... yay, now you just bumped me back another day. Oh well, it could be worse. Good luck next week. Don't really have any tips yet ... If anything comes up, I'll send you a note.
At least its less stressful than cold capping!!! NYinshock - DON'T GIVE UP!!! You've made it thru 4 treatments and didn't lose a lot of hair. You probably feel like you lost a lot but I bet no one would even notice. Hang in there!!!! You got this
Anything is better than being bald and starting over. You'll be fine just keep going....0 -
NYinshock--Here's how I did the math with my 12 weeks of TC: 12 weeks equals 84 days. If your big shed lasts for 7 days and you lose 1000 hairs on each of those days (I know that seems like a lot but there were days during my big shed that I swear I was losing that much...I simply stopped counting after several hundred) that equals 7,000. Now if you lose 100 hairs a day for the remaining days (which again is probably an overstatement), that adds up to 7,700. Altogether, that equals 14,700 lost hairs. The average person has 100,000 hairs on their head, so that 12 weeks of hair loss is 14.7% of your total head of hair! So don't give up. You probably aren't losing as much as you think!! I started out with straight, thin hair as well. I posted some pics here over the weekend of what my hair looks like now PFC. Some thin spots but hair is already starting to come in. So please , please don't throw in the towel when you are so close to being done!
0 -
Goldenpaws--My RO wasn't sure how he was going to approach it when I first met with him in Jan. before starting chemo. I was bilateral so he has to treat both breasts and I guess that complicates things a bit. I'll get my treatment plan at tomorrow's appt., but I'm assuming the full six weeks. I'm still thinking I'll be done by the time the kids start summer vacation in mid June!
0 -
Wow--thank you so much for the math!!! The shedding can be discouraging, so your reality check is very helpful.
0 -
It's weirdly wonderful where your brain will go when it's 3 am and you can't sleep!
0 -
I still have one more round of AC, I really don't think I have anymore hair can be loss. It's really thin, i dread waking up every morning and comb my hair.
0 -
NyInShocked – I hear you sounding so discouraged. I totally get it. Capping is a long hard exhausting day. The math about hair numbers is totally cool and probably true – but I get where you are coming from in terms of shedding hair and how you feel about your appearance. I don't know if this will work for you – but I found a way to comb my hair back off of my face and kind of gently twist it into a non-elasticized head-band like a cross between a pony-tail and a knot. There is little to no pull on my hair (and keeps me from fussing with it all day); and covers the worst of the bare spots/ wider part lines. It isn't my favorite look but with some good make-up and my work clothes I don't feel terribly far away from my former self. IF you stopped now would you be Ok with being bald for a while? Clearly most women manage it. Even though I will probably lose 30% or more of my hair one of the reasons I am keeping with the cold-capping is after reading that some women have problems with hair growth after the use of Taxotere—I am just going keep with keeping my poor little hair follicles away from as much of a soaking in the chemo drugs as I can manage.
MiMomma1 Your photos look great, your math skills are amazing; and yes, I do have baby-fine, board straight hair. Thank you for your supportive comments a few days ago! I am finished with my third round of Cytoxan and Taxotere and I estimate I have lost about 25% of my hair. Honestly, I am having more problems with how my hair looks than anyone else around me. Last week I went to my daughter's first pre-natal visit with her mid-wife (her husband was out of town). Her midwife looks the health form and said to my daughter -"when did your Mom have cancer? Oh! I apologize, grand-mother-to-be-when did you have cancer?" I responded to the mid-wife I am going through chemotherapy right now." The midwife was totally amazed and couldn't get over how well I looked and how surprised she was that she had never heard of keeping ones' hair through cold-capping.
Angiel: I think you gave a great description of how the caps go on. Thank you for your support and your hair looks fantastic!!
Good luck to those just starting
Kimberly
0 -
Thank you for the advice. I cut my hair shoulder length few weeks before my chemo started, so won't able to put into a ponytail. I know how vain I sound with my hair, but I am only 32 living in NYC, I really like to keep my treatment private and not getting pity looks from strangers on subways.
After my 4th AC, I will start weekly taxol, is that gentler on the hair
0 -
Kachincolor, that's a great story about the midwife. That's the thing about cold caps- we know our hair is not the same. We watch it shed and we watch the gray roots get longer and tend to obsess about it. However, to others, especially those who don't know us, there's nothing unusual looking about our hair. We certainly don't look like cancer patients. That's the mindset cold cap users have to embrace. It may not be your normal looking hair, but it's hair. It protects our privacy, and at times our sanity during all this breast cancer crap.
0 -
NYinshocked - yes, weekly taxol is definitely gentler on the hair. Those of us lucky enough to "only" do the 12 weekly taxol treatments barely lose any of our hair using cold caps. So if you make it through AC with hair, you should be able to keep whatever you have after your final AC shed.
0 -
NYinshocked, no need to apologize to this crowd for your vanity. We get it. Try to stick with cold caps at least through your last AC. That chemo regimen is a lot tougher on hair than some of the others. I didn't have AC but from reading here I think the taxol part is gentler and you may make it through OK. Do you have someone you can trust to give you an honest opinion on how your hair looks?
0 -
I just had a good cry not that long ago about how I don't look like myself and how my hair looks like shit - greasy, deflated, and frizzy. With an itchy scalp and dandruff to boot! Ugh. I just want to look like ME again, and that seems so far away. I can't wait to be able to blow dry my hair and straighten it the way I used to.
But at least I still have most of my hair.
0 -
I'm sorry you're sad wpmoon. I know it's hard and scary. You will start to feel like yourself, but it does take a while. I'm now 7 weeks, I think, PFC, and got my hair cut for the first time since JULY. It has looked awful, to me at least, but it's still there. It was glorious to get it cut today, and blow dried on the ends, with cold air on the roots. I hate my roots and my grey hairs, but in a few months, I'll get it bleached, and get back to looking like me, with various pampering treatments. This whole thing sucks, but hang in there. I'm an AC/12 weeks taxol person.
0 -
Wpmoon - I can totally relate with you! I was just telling friends the other night that prior to chemo, you couldn't have paid me to go swimming in public and have my hair air dry. And look at me today - that's all I've got....well, actually less hair to air dry but you get what I mean! So ironic! I actually threw away all of my old hair care products since I figured they'd be almost a year old before I could use them again. But yes, at least we have most of our hair. For that, I am thankful.
Gatomal your hair looks amazing! So happy for you!!
NYinshocked...stick with it. You are almost through the worst of it. I had another larger shed 3-4 weeks after my 4th AC but it has slowed down considerably right before my 3rd Taxol. I see shorter hairs everywhere and am sure if it wasn't for the caps, they wouldn't be there.
Kimberly - do you actually use something in your hair for your twisted ponytail/knot hairstyle? Or is your hair just wrapped in itself? I could use another pulled back hairstyle other than braiding....
MIMomma1 - I love the math! Those statistics really put all that hair I pile up daily into perspective. Thank you!
0 -
First off thanks to all everyone who has shared their pictures and experiences so far. It has been so helpful. Looks like I am going to start AC-T next week. I am working on getting my clinic to accept a freezer and I got a subsidy from Cold Caps Assistance Projects which will cover the not perfect caps. So that is wonderful news.
From reading it looks like I should be using a gentle shampoo with ph similar to that of the hair in the 4.5 to 5.5 range. Use clear shampoos, not "milky" or "creamy" ones. Do NOT use products that say moisturizing or volumizing, or that are opaque (rather than clear). Such products may coat the hair and keep oxygen from reaching the hair follicles.
All the products I use now say moisturizing. Oops!
What products do you all use and have been happy with? I would love something I could get either at Whole Foods, Target or from Amazon.
Thanks!
0 -
Angiel, I don't have long hair (just sweeps the top of my shoulders) and without styling it was driving me totally crazy. The whole loose braid thing wasn't working because I have too many short layers and not much length. Before I found this style I was probably pulling more hair out than was falling out just because I couldn't stop messing with the wimpy layers that were floating off my head. Target sells headbands that many women use to pull their hair out of their face before they wash their face at night. The quality control is only so-so so some of them have very little stretch to them and are literally a fabric loop. I bought three or four packets, checked them with our PCC rep, and picked out the softest least elasticized. I gently comb all my hair back into a ponytail set about in the middle of my head --then wrap the headband around the gathered hair three or four times and then fold and loop and wrap until there is no loose hair. So far I notice that I lose maybe one hair when I use this and it generally doesn't slip out unless it is really windy outside.
Enjoy the sunshine today!
Kimberly
0 -
NYinshocked…, I'm just jumping in here, haven't read all your posts. But has anyone suggested using Toppik hair filler to you yet? It's amazingly effective at hiding thinning spots. Give it a whirl (through Ulta or you can get it through Amazon). And no apologies/explanations necessary. We're all here for the same reason. Privacy, normalcy. Nobody wants to be the sad cancer girl here. Also, if it helps, I've been on the harsher high-dose/three-week taxol and my hair is beginning to grow in even before my last infusion in a couple of weeks. I've been going since January and I have about an inch of growth in spots, less in others, but it's happening. It's filling in. And I still look normal to the world despite the usual amount of shedding. Hang in there.
0 -
Thank you Kimberly! I'm going to try that.
0 -
Kimberly, I might need a photo of this hair style, I'm horrible at visualizing descriptions, but it sounds great!
makingway, thank you so much for all of the links! I sent them to my father to take a look. The joy of being a single 34 year old, my dad is my shoulder to cry on for all of this and has been amazing flying back and forth almost every week to go with me to dr appts. I have a feeling he's going to demand that he be there for all of my chemo too to be my capper. He agrees that I need to fight to have my onc give me the ok bc he sees how stressed and overwhelmed I am with everything.
And if I haven't said it enough, you ladies are all amazing. Reading through all of the posts has given me some calm through all of this, knowing that I'm not alone. I know all of my friends and family that I've told so far have said they're here for me when I need them, but it's not the same as talking with women that have/are going through this.
0 -
you are 34?? I'm 37! I am home from my purr surgery today and it kills!!!! I can barley turn my head!!!!!!
0 -
Oh Alibeths, I hated the port surgery too!! I seriously thought they messed up my neck! I had trouble turning my head for a couple of days and was unable to sleep on my stomach or sides for 3 weeks. Still today, sleeping on anything but my back isn't that great. So know that those feelings are normal and that it will get better. I know I took Advil for the pain & also Ambien to fall asleep after the surgery - I think I even took Vicodin. Good luck.
0 -
Stef - I'm 47 and my Dad insisted on being there and helping cap alongside my husband! He was an immense support throughout all my treatment. How lucky we are to have such wonderful men as fathers!
0
