Cold Caps Users Past and Present, to Save Hair
Comments
-
So glad the word and success stories are spreading!!
0 -
i just put in the order to get my cold cap! How hong does it take to come in?
0 -
Diem - interesting information on the Dignicap trial. I hope the caps were indeed tight enough - are they malleable so that you could sort of "massage" them to make sure they make good contact with your scalp? I never used dry shampoo. In a couple of weeks your hair will dry out and you won't feel like you need to wash it more often - a definite benefit of doing the cold caps! My time spent getting ready for work decreased dramatically!
Lorbgoo - I had a local Penguin rep and a medical freezer, and the caps were already here, so I didn't have to order them. I don't think it takes long to get them though.
0 -
I need some hair care advice from fellow cap users. I have been shedding steadily for 5 days now. Lots of hair. Please share how u care for your hair everyday. How often do u wash? Do u comb everyday? Do u get wet at all? Thank you!!!!
0 -
Mmm
I spritzed mine with a spray bottle then used a large pick to arrange it! Washed ever 5 days or do and kind of patted the shampoo and conditioner on. Low volume spray and cool water!
Hang in there you are in the period most have the worst shedding. Days 20-35.
0 -
I had my first chemo session yesterday with the Dignicap. The representative was there from Sweden, and he worked with the coordinator to do the fitting, and we tried every size and used the straps to make it as tight as possible. They wet my scalp before putting the cap on so that my hair was flat as possible. Overall, it seemed pretty tight, and I found it to be extremely uncomfortable in the beginning until my scalp was numb. I will keep you posted!
Our local news station interviewed me and followed me around all day during the process, which was a bit nerve wracking after a few hours, but I am so glad that I was given the opportunity for people, especially women, to have this information. So exciting!
Diem - I'm not sure about using dry shampoo. It might be okay if it doesn't contain any of the chemicals that we aren't supposed to use. I am planning on washing my hair today because it's a mess from yesterday and only washing it twice a week with the DermOrganic shampoo.
0 -
Diem...My mother used the Elasto-gel cold caps. I believe the dignicap is about the same. I've briefly looked over your post. Can you please share what study you were reading? My mother and I disagree on how cold the caps should be. She was going by the website that stated the caps would be cold enough just a 1/2 hour in the cooler.Thank you.
0 -
I am getting my caps on Friday. I already bought my wide tooth comb and the right shampoo oh and the deoterant. What kind of vitamins do you use for the caps? I got the drops. Anyone use them?
0 -
How much is shipping of the caps?
An an ecommerce consultant I have to say that this organization has some really odd business processes.
0 -
we had to call ups to pick up caps from the address they sent and ship it to our address. We did 2 day shipping and I think my dh said it was 89$. I'm sure you can chose regular mail but we need them by Monday.
0 -
I'm new to the group but been reading the posted. I'm on my 8th taxol on Monday and I missed using the cold cap on my 4th treatment. My hair is shedding a lot, I'm just wondering have anyone else miss a day?
0 -
mmm - wash as infrequently as possible. I went 5-6 days during the whole chemo period. Wash very gently with cold water. Don't scrub or use a shower head or anything with power. I used a ketchup squeeze bottle mixed with the shampoo and another one to rinse. I also rinsed with a measuring cup. Accept that your hair is not going to look like you want it to look. Until this is all over. That is when the reward kicks in. Don't do anything to pull on it. No ponytails, hats, even soft headbands still pull (although I did go there when i was desperate). Use a spray in conditioner (organic) to keep it from tangling on off days. When it does, and it will, slowly finger tease the knots out or use a wide tooth comb. I would comb it once in the morning and once in the evening. Hortense gave a great suggestion to use corn starch when it gets dreadlockie, which mine did. No chemicals, no heat, no pulling are the big three. I stopped working out even because I sweat so much from the head I was afraid of triggering the chemo.
I am now 4 months PFC, did not shed too much during chemo but did most of my shedding afterward. My eyelashes and brows grew back and i have new growth where I did lose (mostly around the ears). I feel great. So will you. Hang in there!
0 -
mfm48
Thank you for the reply. I finger comb my hair, I wear it natural (no relaxer) and it will get tangled really bad if I don't. I was washing every other week (use to wash once a week originally) but I read that it's good to wash the 3 rd day after chemo but that's when it shreds a whole lot. It was so tangled after my wash this week I cut about 4 inches off. I will hang in there, I though it wasn't any hope.
Thanks again! :-)
0 -
Welcome to all new cap users. My advice is to take one day at a time and try to relax no matter what happens along the cold caps experience.
Update-Yesterday was my 2nd chemo, everything went perfect. I was more prepared and knew what to expect, did not make the same mistakes from my first cold cap experience. My husband was great during this procedure, this time he was faster, he knew what he was doing. Overall, I'm satisfied. I did feel them cooler that the first time, but, I think it's because I starting shedding on day 18th.
Yes, I thought I was saved from my head hair shedding because hair everywhere else in my body was falling by day 10th, so on day 14 it was still there, happy dance. but I knew that other people start shedding on day 18th, and that's when my morning shed announced the beginning of it, especially that was hair wash day, just that wash gave me a loss of 500+ hairs, yes, I counted them, and some went down the drain. In total, morning combing, hair wash and night combing was about 982 hairs lost. I was freaking out, in just one day I lost that much, plus all the fly away hairs, on my floor, couch, car and everywhere. As days have gone by it's not been just a tiny bit less, on the 700's hairs lost. I keep counting, it's my way of making me feel in control and peace, I can compare the numbers and know if it's getting better or worse. Everyone has their ways of coping with it, and you got to do what makes you feel good. So far this morning my numbers gave 36 more hairs lost than other mornings, so, I might be heading on another big shedding, I'll keep you updated. I hope by telling my story I can help others know what to expect and don't feel as nervous. I still look like I haven't lost hair.
I went for my second infusion yesterday and everyone was happy to see my with hair. My first nurse came to my chair and in a very low voice told me: "I'm so happy the caps are working, by this time, everyone comes here with almost or no hair." and gave me the thumbs up. I had a new nurse and she was a love. She worked with me with the times, I think my infusion was going a little faster but she waited until the third cap was on for ten minutes to start the chemo infusion. Great day to everyone.
Note: I have very long hair, almost to my waist, it's layered, but a lot, or most of the hairs falling are very short, there is a lot of hairs that are between 1 and 3 inches, I tried to look for hair follicles on them and some have it, is this breakage or are these new hairs that were growing and are falling, as they are very short to be old hairs. I don't see many long hairs falling, probably just a third from what I collect. Can anyone give advice on this or clarify what these short hairs might be? Thank you in advance.
0 -
Thanks for all the input. I was wetting my hair everyday so I could gets comb through it. The past 2 days I have done nothing but just put up in a loose clip. I guess I will just do this till wash day. I was washing every 3-4 days but now I'm going to try to wait to wash once a week. I had so much shedding I am scared to touch it. I know I am still shedding but I'm not touching it. I believe I will get a few inches cut off soon. I have shoulder length, natural wavy hair so I know it is in knots. I am thankful I still have hair even though it looks crabby and is thinning. Better than the alternative. I have a friend that just finished treatments. We didn't know about the caps when she started. She lost all her hair around the second treatment. She did very well with it but she would have loved to try the caps if she would have known. It's unbelievable how people treat her differently because her hair is gone.
0 -
Hi Capping Buds-
Sorry for my disappearance but my husband had a bilateral hip replacement this week. We felt that dealing with my cancer wasn't challenging enough so we loaded more on our plates.
Sweetmom - I too have layered hair to my mid back. I think the short hairs are breakage. I have a lot of those too.
To everyone freaking out over shedding - No one has stepped forward to claim greater shedding than I have based upon the photos I posted. Tuesday is my last infusion. My hair looks fine. Even when I point out to people who know me how much it has thinned they can barely tell. And that's with the gobs of hair I lost.
BTW - Does anyone know the schedule for brows and lashes? I've used Brian Joseph's and again have thinning but haven't lost them. I'm wondering when I'm in the clear.
0 -
Lost my lashes 6-7 weeks PFC. Brows thinned and I never lost them completely. That started after my 3rd chemo. I just didn't touch them or do anything to them so the rest wouldn't fall out!
0 -
mdg - How long did it take for your lashes to grow back in? I think your experience may be typical.
0 -
lashes didn't take long to come back. I used latisse and within about two weeks they were back
0 -
New to site ..trying to figure out if cooling caps work . I know different companies and services . Are there some than can be bought second hand . Pricey ..Have not talked to Doctor yet . I will have AC and T and possibly Carboplatin also I think may be doomed and take hair loss Thx
0 -
Hi mimsey, and welcome to Breastcancer.org.
Until you hear from other members about their experiences, you can read more about Cold Caps in their section of the main Breastcancer.org site.
Best wishes, and please post again to let everyone know what you decide, and of course if you have any questions.
• The Mods
0 -
Hi Mimsey. Yes, cold caps can work very well but they work better for some chemo regimens than others. Unfortunately, based on the experiences of women posting on this thread, the "A" in your particular chemo cocktail is really hard on hair and the success rate is not as good. That hasn't stopped some women on the ACT regime from trying cold caps, you just have to go into it knowing there's a chance they will not work to your satisfaction. As an aside, it's really frustrating that the cold cap information linked by the moderators above seems to imply the exact opposite.
I rented from Penguin Cold Caps but there is another brand called Elasto Gels that you can buy directly. They are not the same caps but several women have used Elasto Gels recently and reported good results. I don't know of a secondhand market for Elasto Gels but it makes sense that there would be one.
0 -
I used ElastoGels and you can buy what you need from Amazon with free shipping for around $525. Then a cooler and ice. I have a lady I have coached that is done with her caps. Last I checked her mom didn't want to sell them in case a family member or friend may need them, but she may have changed her mind or might let you use them for a small price if you send them back when you are done. I will check with her.
0 -
I haven't been on this site in so long, I thought I would check back and give an update for those in Colorado. I finished my last chemo on April 14, 2013. Had the big, BIG shed that looked like one of the ladies pictures recently. Then shedding leveled off. Have thick, wavy hair. I did loose a couple of small sections above my ears that resulted in small bald spots there. I arranged my hair to cover the spots and I used an eye shadow the same color of my roots so you couldn't see the skin if my hair blew or something. There is a product called Wow you can get at beauty supple stores like Ulta that is made to cover root greys between colors. It comes in four different colors. I still use the Wow now for that reason, works great! I lost about 30% of hair, but no one could tell. I looked the same. I did use clip in hair extensions. You can use to fill in your hair to look fuller and/or above the bald spots so you can't see them. Those things are great! I got them at the fancy wig store that I checked out before I decided to use the Penguin Caps. They were less than $100 for a full set. But I saw some real hair extensions at Sally's recently that were beautiful and less expensive. They are long so you would probably want to clip them where you want them and then go get them cut to blend with your hair length and style. I don't like cold water and my Penguin rep said I didn't need to use cold water, just luke warm water on my hair. I took a regular shower, warmed my body with hot water, washed my hair with the luke warm water and then warmed my body again with hot water. I went to an Aveda Salon about 4 months after my last chemo and that is when I stopped shedding. They did a test highlight in the back and that went fine. I went back for more highlights and overall color and a trim the next week and have been doing the same every three months. Hair looks great and still looks the same as before chemo, no more extensions. All my hair is growing back where I lost it just great. The hair where my bald spots were are now down to my shoulders and hair thicken up again. Also someone mentioned the aluminum deodorant. I think, Frank, the inventor of the caps, an engineer, had told someone the aluminum in the deodorant prohibited the effectiveness of the caps somehow, not because a possible link to BC.
So update to the Colorado ladies. The University of Colorado (Aurora Campus) has a freezer now! The staff and nurses were AWESOME when we dragged in our coolers of dry ice and they were able to accommodated us with a private room. Make sure you call ahead to let them know. Even if you can't a private room one day (because another patient has a medical need for one) They have two huge end stations with draw curtains that face the windows and have a beautiful view. The nurses told me the ladies that do the caps do better than those that don't. They just seem to not have the all the issues that other women do, whether it is because they look so great and don't look sick, but they and my MO feel keeping your hair makes a difference. I am here to tell you that ABSOLUTELY it makes a difference. I worked out every single day, except chemo days, worked with the acupuncturist and nutritionist at the integrated health center too and I did great through the chemo. The caps kept me distracted from the infusion too. The Penguin Caps work. You might ask your rep to give the name of anyone close to you that you could talk to and ask questions. That is how I found out lots of information and on this great site. Also, order those brow bands. Use them to wrap around the cap to lock in the cold. I didn't use them correctly the first time and I think that is why I go those two bald spots. That is especially where you want to make sure you wrap those bands tightly, above the ear.
For comfort, I took advil and Ativan (before and after), brought a heating blanket and my heating pad, and brought a soup to warm up . Ativan great to help you sleep through this tough time, you NEED your sleep!
Good luck ladies, you can do this!!!!! I really recommend one or two family members and/or friends to help you out. Don't be afraid to ask, this is the time to ask for help, you deserve it and need it. It is not only a gift to you but makes them feel like they really did something meaningful to help you through this tough time.
0 -
WW, I never completely lost my lashes. I think they thinned, but I'm not sure when b/c thankfully it was gradual and not noticeable to others. Only I noticed they didn't look as thick with mascara, especially on the left. I'm not sure the left has thickened back to the same level it was before chemo, but I have fairly thick lashes to start with, so they look just fine with mascara. (I found one that adds some little extensions at the ends and makes them look great.)
I did lose half my eyebrows (I looked pretty silly - inner halves fell out, but not outer halves, lol!) at 4 weeks PFC. The brows grew back in very fast, maybe within a week or two.
0 -
I suspect my hair may fair better than my brows and lashes but it's hard to tell. My brows are thin but still there and I can fill them in. My right eye lost a clump of lashes early on that still hasn't grown back. As long as they grow back eventually I'm OK. I was told with the Brian Joseph's conditioner that they will thin but not disappear. Sounds familiar. LOL I was also told that I only need to use the conditioner for 1 mo. PFC but I think 2 or 3 may be safer.
0 -
I wear one extension ( clip in) in the back of my head where it is a little shorter than the rest of my hair. No problems so far. Chemo #3 is next week the 24th. No Major hair loss at all!
0 -
Warrior Woman, make sure Nurse Ratched gets a good look at your hair tomorrow : ) Good Luck.
0 -
Warrior woman, congratulations on your last chemo.
0 -
WW YAY for your last chemo and kissing Nurse Ratched good bye!! I remember reading your posts when you were gathering your supplies waiting to get started! Congratulations!
0
