Cold Caps Users Past and Present, to Save Hair
Comments
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Dlove - Some have used the caps between treatments with hope of more rapid regrowth. To the best of my knowledge, there isn't any clinical evidence to say whether they make a difference or not. I used them a couple times to cool me off after exercise.
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warrior woman- thanks so much for the response
! I just started my treatment and I got some for home bc they said it stimulates hair growth. All I can hope for is that it works all together.0 -
Good luck tomorrow warrior woman.
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Congratulations WW- so happy for your success with the cold caps!! You have been an inspiration to me for sure- my last chemo is next week and I can't wait! Way to kick cancers butt!!
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Deepcreek08 - how is your hair doing with your ACT regimen? Congrats on being almost finished!
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Thanks, Patinmn! Well, just like WW, Hortense , and other ladies said, you start off wondering if it will work for you. Then you ask a million questions before you take the plunge, next you start freaking out as your hair starts shedding- and oh boy did mine shed- then you realize you are about finished and you still have most of your hair and are very thankful! :-) I will have been through 8 treatments of AC/T, 4 Adriamycin and Cytoxan and 4 Taxol. It is thinner on top, definitely, but unless you know me- you have no idea I am battling cancer. It is so nice to be able, on the days I feel good, to get dressed up and go out with my DH and nobody is the wiser! Oh, and my bangs have grown like 3 inches since chemo started, lol!
Tomorrow is the meeting with the surgeon and next Tuesday is last chemo- hurray!!
And guess what?!?! As I was typing this I received an email response from a local news station reporter- she wants to do a story me with on the cold caps! Hopefully we can spread the word to everyone in the Northeast Ohio area that there is another option- we don't have to lose our hair!
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Good luck with your exchange surgery Warrior_woman!
Deepcreek, your hair is so beautiful and congrats that you are almost done with chemo!
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Deepcreek - Your hair looks terrific! Thanks for posting the photo. Yes, I can see that it is thinner on top, but overall great success with a very tough chemo. I think your experience will encourage others to try cold caps even with ACT, although I think many won't retain as much hair as you did. That is awesome that the local TV news wants to do a story on you and cold caps!
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Hey Warrior, how's the new hair growth? You're my canary in the coal mine!
I'm three weeks PFC and the shedding's slowed to minimal. Hope it stays that way.
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ha ha love that.
Tweet tweet!
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Yes, Warrior Woman- how does your new hair grow?
We can't wait to know!! Thank you Patinmn & XingHong for the kind words! Yes, my hair was super thick to start with but then, truly, none of us are guaranteed an outcome with the caps. We just hope, pray, Keep Calm and Carry On Cold Capping!
Since my last chemo is next Tuesday, I had to meet with the surgeon today about surgery and guess what?? There is NO sign of my tumor!! All she could see with the ultrasound machine was the titanium clip that marked where it used to be! Praise God! Surgery is scheduled for the end of May to remove the clip, get clean margins,
and just double check lymph nodes(they were clean last look). Then six
weeks of radiation. Then DONE!You know, nothing about this cancer thing is easy but a book I read has really helped me and it is called You'll Get Through This by Max Lucado- hands down the best book ever in my humble opinion(besides the Bible of course). Here is one of my favorite parts:
"You'll
get through this. It won't be painless. It won't be quick. But God will
use this mess for good. Don't be foolish or naive. But don't despair
either. With a God's help, you'll get through this." - Max LucadoAnd then this one has encouraged me immensely as well:
"My child, pay attention to my words. Incline your ear to what I am
saying to you. Do not let them depart from your sight; keep them in the
middle of your heart. For they are life to those who find them and
health to their entire body." Proverbs 4:20-220 -
It is great to see people cross that finish line. Your hair looks amazing, DeepCreek.
It is very hard to tell what is happening with my regrowth. I can see it in areas I can look at directly myself but my husband claims that no new hair is growing anywhere else. I suspect that it just isn't noticeable under my existing hair at this point.
JC, Xi - Thanks for the support. Tomorrow's word of the day is PERKY! Everyone think perky thoughts for my exchange surgery. Whatever you do, don't think saggy and hideous. Only perky thoughts.
They better not touch my hair when I'm under!
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Warrior Woman, tomorrow I'll send perky thoughts your way, as I'll be sitting on the chemo chair for my last treatment. Thursday will be a great day for both of us.
Yay! I'll be done with chemo tomorrow.
Deepcreek- your hair looks great and healthy. Congrats on having the news station do a story about your experience with the cold caps.
Update: I'm still shedding a lot of hair. One week before my third treatment, the shedding slowed down, but after the third treatment, shedding increased again. I've been shedding a lot after each treatment. Now it's up to 17% hair loss, that is what I've been able to count. The good thing is that I still have hair, and even with a bald spot on each side above the ears, I'm able to cover it with the hair on top. I saw my Dr. today and he was impressed, he said that he'll definitely will give this option to his patients and asked if he could refer them to call me. So happy, that we can prove that cold caps work.
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Hello ladies!I am new here, and it looks like I will be starting chemo late next week, or early the week after.
I haven't put in all my dignosis info, I found you by a link from a blog.Short story, I am 37 years old, was diagnosed with DCIS at age 20, and just recently diagnosed with breast cancer that is not in my breast at all. Basically I had a palpable lymph node in my armpit and when they biopsied it contained breast cancer cells. No other tumors anywhere else. I'm an 'interesting' case. I don't want to be interesting
I met with an Oncologist yesterday who wants me to do the penguin caps. She said her last 10 patients that did the drug regimen she wants me on all had hair at the end of chemo. I can't describe how different it has made this path look to me. It may sound silly, but I really feel like it's so manageable if I can keep my hair. Fingers crossed.I have so many questions!
1. My hair is currently anywhere from 26-29" long. It pretty much hits the top of my butt crack. I'm really concerned that my current length will make 'not pulling' an impossibility. If I lean back, I pull on my hair. If I sit in a chair, I pull my own hair. And when I sleep, It looks like I left a furball on the bed. Can I cut my hair before I start?? I know penguin doesn't recommend more than a trim in the month prior to chemo, but I'm terrified it will fall out anyhow because of length. I am thinking 5-6"? Is that reasonable?
2. My hair is also jet black. with a lovely smattering of gray that I'm sure my kids have given me
9 months of no root touch ups is going to make me look like Elvira, only ickier. I would rather have gross hair than no hair, but is there anything I can do?? I first just thought I would use hats and scarves, but I guess that's a no-no too. My hair grows so fast and with such a dramatic change between black and gray, I really feel like I'll be getting stares almost as much as I would if I were bald.3. Is there a list anywhere of tips and tricks? supplements, shampoos, putting on the caps, anything? I will be going into this without much help from the cancer center, I am apparently the first person in my part of Wyoming who has tried this (which I am shocked about) and they don't know squat about cold cap therapy. I want to give myself the best chance of success, are there videos I can show my helpers and the nurses at my clinic? (the really cool part is that they're all really excited over there to help me, they hope it works so they can start getting other people to try it. In fact, the nurse at my clinic was approved today for the grant from the Rapunzel Foundation for a medical freezer! I'll have to do the 1st treatment with dry ice, but I am psyched to know they support me).
4. Is there more or less success with longer hair, shorter hair, thinner hair or thicker hair? Or is it more about your combo of drugs? I am beig told I will get something that has the word platinum in it and something else that can sometimes be bad for regrowing hair down the road, it starts with a T, but I was so overwhelmed with all the info I got I can't remember. Does anyone know what that is? Do people have success with it and the caps?
Thank you all so much in advance, I'm so glad I found you!
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Hi Wyomama,
The Penguin folks advise not to cut your hair right before chemo, but it sounds like it might be safer for you to have it at a length where it's not getting pulled and you don't have all that weight.
I color my hair too, but my biggest problem right now is fading and not roots. I can only guess that's because my hair wasn't growing as quickly (or at all?) during chemo. I had my bangs trimmed two and a half months ago and I swear they've hardly grown. I'm thinking of trying a natural dye in a few weeks. I'm three weeks PFC and they say to wait three months if you use a dye with no ammonia or peroxide.
Supplements: I've been taking silica and last week I started taking Vitamin E (my oncologist said no to Vit. E during chemo). I started out with what I thought was a chemical-free shampoo, but realized after three weeks that it wasn't and I switched to Dermorganic. I bought it on Amazon. Nioxin is also recommended. I'm pretty happy with Dermorganic and might switch to it permanently. Also, you'll want to get a wide-toothed comb for gentle combing.
I'm probably forgetting something important, but I'm sure the other ladies can offer their advice. In all, it was totally do-able and I'm so glad to have my hair. It's thin on the sides and top, and I'll be wearing headbands for a few more weeks, but at least I'm not starting from nothing.
Are you doing carboplatin and taxotere?
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my gray also grew at the roots and was noticeable on my dark brown hair. I used Colormark on my roots. When it got harder as the roots got longer, I would part my hair and then color the roots. I would put on a thin elastic headband to hold my hair in place. I then pulled my hair back into a loose ponytail. This way my hair stayed in place so other grays were hidden. I also did wear a few cute hats sometimes when I went out. By the end of chemo my roots were over an inch long. I did not wait 9 months to color. I used a wash out color a month or so after chemo. I used it for a few months and then switched to Naturetint. I also did use some of those soft cotton wider headbands to help cover gray at times.
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this is great info
Mazie73: I think carboplatin and taxotere sound about right. I haven't noticed too many others with carboplatin listed. I hope that's not bad.
My stylist is doing her own research on cold caps right now too, but we both thought that 5-6" would probably be ok, still leaving me so much hair, but like you said, less weight and less pulling.
I used to use nioxin for thinning hair, is that the same nioxin? I actually only used it because I shed so much. Is it safe with the cold caps?
mdg: it was your blog I read!! I actually posted on it yesterday as well, and guessed that my hair was quite a bit shorter than it is lol! I had my son help me measure it last night and surprised myself with the length.
You had no issues with headbands and ponytails? And you used the colormark during chemo?
It sounds like waiting only 3 months to color is acceptable, and that's good news for sure. Of course, having hair at all will make me happy.
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I did ok with my hair plan but I did have shedding for a long time after chemo. I did also wear some clip in extensions after chemo because I thought my hair looked too thin. I eventually got it cut shorter to make it more healthy but it was still at my shoulders. Glad my blog helped!!!
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Can anyone please tell me a specific brand name for the infrared thermometer? I'm going to have to order one off amazon.
Thanks!
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Wyomama - For information and videos about cold caps go to:
And, yes that is the right Nioxin. However, Penguin recommends only using organic shampoo during chemotherapy. Use Nioxin again afterwards.
I would definitely shorten your hair as the weight alone might tend to pull it out. And, I would not use a pony tail or head bands as the risk of pulling is too high, though I think some use a very loose pony tail.
Basically do nothing to put stress on your hair follicles. When you groom your hair use a wide toothed comb or a wide bristled wet brush - those worked better for me. Start at the bottom and work upwards, holding the section you are working on (like Disney princess I was told) to avoid any pulling on your scalp. Get satin pillow cases to sleep on as they reduce pull on your hair. I had long hair also and I found that during my heaviest shedding period my lost hair would form dreadlocks with the hair that stayed. Cornstarch sprinkled on it and worked through it helped to loosen it with little loss and need to cut any out. Dry cornstarch is very silky and slippery and helps to make getting tangles out much easier.
I can't help with the infared brand as my helper brought one with her. As long as it can register as low as - 32º it should be fine.
Lastly, your doctor is amazingly cool for telling you about cold caps.
Good luck!
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I don't remember the brand of thermometer......I just let another cold capper borrow it. Anyone else know???
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Re: infrared thermometer, I used this one:
http://www.amazon.com/gp/product/B006V4WNYU/ref=oh...
No complaints at all.
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Yay, finally, today was my last chemo.
Guess what, as soon as we finished the last cap, my husband packed them and took them to FedEx. He was cleaning them as I was finishing with each and packing them until we got to the last one. They are gone! I finally got my freezer back. Now, to my next battle, radiation. One battle at a time.
Question about radiation, I have to go thru 6 weeks of radiation, trying to get my first appointment set up. I was been told my nurse that I have to wait two weeks after chemo but my oncologist said 4 weeks. I don't want to wait too long, if I could I would start tomorrow, but the Dr. said that they have to wait for the blood count to be normal. Can anyone share their experience with this? How long did you wait after chemo? Thank you in advance.
Hi wyomama- The thermometer I used was recommended by Deepcreek- I bought it at amazon, this is the link:
http://www.amazon.com/Kintrex-IRT0421-Non-Contact-...
Regarding cutting your hair, I agree, it would be better to cut it now, asap, before chemo starts. I had waist long hair before all this started and kept thinking it was time to cut it, but one thing or other didn't give me time. All of a sudden my diagnostic came and surgery and then I was starting chemo. I was so scared because I have thick long hair, it weights a lot. When I wash my hair I sit on a stool and try to let my hair fall on my knees. I feel the weight of my wet hair is too much and the pulling makes me loose lots of hair after each hair wash. The heavy shedding stopped for a week before and a week after my third treatment, I was happy thinking that finally all that shedding stopped, so I made the big mistake of trimming 2 inches of hair, but big mistake, after this trim, big shedding started and it hasn't stopped. Maybe it's just a coincidence and I was meant have heavy shedding after each treatment. Also, where I live is very hot, and I've noticed that after running errands or being under that heat, I loose more hair, too. I noticed this during all these Easter egg hunts. Now, I'm done with chemo, we'll see how long this shedding continues. Mine has been almost non stop since the 10th day after first chemo. But I still have lots of hair and don't regret using the cold caps and all the commitment it takes. Mazie and Hortense have offered great advice which I also followed. Sending good wishes your way so everything goes great with the cold caps.
Hortense- How long after the last chemo should we start using nioxin? Thank you for recommending the cornstarch, you don't know how much I've used it, with pure success.
Warrior woman-I hope your surgery was a perky success and you have a fast recovery.
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Sweetmom- I waited 3 weeks before starting radiation. Go ahead and set your initial appointment with your radiation onc and see what he/she says. I was so ready to get mine over with too! I also had 6 weeks of rads. Congrats on being done with chemo!! Yay!
WW- I hope your surgery went well!!
Yesterday was exactly 3 months since my last chemo, and some of y'all might think I am crazy for doing this, but I got highlights last night! I am so excited to be blonde again. She just used normal blonde hair color (peroxide and all!). So far, my fair seems to be completely fine. I will keep y'all posted though. I leave for Ft. Lauderdale this afternoon and my cruise leaves on Sunday! I am definitely in need of a vacation and some sunshine.
I hope everyone is doing well!
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Thermometer - Extech Instruments. Worked fine.
Sweetmom - Hooray you crossed that finish line.
Daye - Let us know if your hair is fine from coloring. Right now I'm not touching it. I am fooling myself by imagining that my grey makes me look distinguished.
Hair in ponytail or bun - I started wearing ponytails and buns to keep the hair out of my face. Just make certain that nothing is pulling and you use soft bands that don't attach to your hair and pull it out.
Boobie Update - I like what I can see so far.
Ladies who will have surgery - Do not let the anesthesiologist tape your eyes as it can pull of the few remaining lashes and brows. Instead they put some sort of goop in my eyes. It's important to ask about this because otherwise they tape them.
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thank you all so much!
I'm going in for a cut in about 2 hours, and I think chemo will start May 5 or 6 for me, so hopefully it will be ok.
I'm really trying hard to make myself believe that reducing the heaviness and pulling possibilities will outweigh the risks of cutting now. Fingers crossed
And thanks for the links on the thermometers!!
Anyone use taxotere and carboplatin?
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Wyomama - yes - I just replied with a link to my pics on the Triple+ thread.
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So I just went in for a trim, and now I am concerned she may have taken off too much!! I think she cut 7" or so. My hair is still very very long, but now I am freaking out that the caps aren't going to work. I've already started 'babying' my hair, no elastics, washing no more than 2 times per week, careful combing, no products, etc.. have I just blown it??totally freaking out
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wyomama - please don't freak out! I really don't think you have anything to worry about. I know that Penguin says not to cut hair before starting treatment, but I know that many women have done so with no ill effects. Cutting your hair is making it easier to manage - you'll be fine! I had my hair trimmed (an inch or so) and colored (a big no-no) right before starting chemo, and the cold caps worked great for me.
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don't worry! I cut and colored my hair a week before and it was fine!
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