Cold Caps Users Past and Present, to Save Hair
Comments
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aef - I also hope the caps get easier for you. I always took two Tylenol or one Tylenol and an Advil about 1/2 an hour before starting as my nurse, who had helped several dozen women who also cold capped, advised me to do so. The first cap was always the hardest as it was so cold, but once my scalp froze I was alright. I wore many layers for warmth and wrapped up in an electric blanket which was always pre-warmed.
Like you, I allowed myself to drift into a semi-dream state on the meds during the entire day. I could perk up to help hold a cap steady during changes or talk when needed, but found relaxing into the meds made the whole experience much easier.
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aef, like you I thought the second cap felt the coldest for some reason. I had 12 weekly chemos, and that was true for me throughout. It was easier after the first week, because I knew what to expect.
I was advised by my wonderful local Penguin rep, Susan, to drink lots and lots of water on chemo days, which I did. My helpers reminded me if I forgot. I drank so much water that I ended up going to the bathroom every half hour, after every cap change. I don't know if that had anything to do with my cold cap success, but I had almost no shedding at all. So for anyone still doing caps - drink lots of water!!!
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For those considering using cold caps, these are pictures of my hair last August about three weeks after my last chemo. I took them at my doctor's request, as she wanted to include them as part of a study she was doing on cold cap's efficacy. I have no eye brows which fortunately have since come back. She told me then that the study was showing that cold caps appeared to be more successful with T/C than ACT.
My hair was still very limp and very dry in texture. It doesn't look as full as it did after I started shampooing with Nioxin which removed all the build up that had accumulated during chemo when we have to treat our hair so delicately. That build up made the hair volume look thinner than it actually was, however these photos do show that cold caps truly work. I shed a good deal during chemo, and it went on for 16 long weeks after my last chemo infusion before it stopped, literally, overnight. My hair never went terribly thin and I started drying it with a hair dryer set on cool which helped a lot to make it look fuller. I did trim it several times both during chemo and shortly after as it was getting long and was already damaged by my having bleached it, so breakage was an issue. Shortening it a bit after taking this picture made it look healthier and fuller.
It was so nice to have hair no matter how sick I looked or felt and that helped me keep a positive outlook throughout my treatment and beyond. I am very grateful to have discovered and been able to use Penguin Cold Caps.
Wet Dry
Dry from back
Cold Cap user - kept my hair
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Done and DONE!
Shipped those suckers back today. What a great feeling. I lost more than half my hair and have those little bald patches above my ears. But if I don't shed too much from here on out hopefully I will have enough coverage(albeit thin) to cut the scragglies, shape it up and avoid a wig.
Hortense your hair looks great! Thanks so much for sharing your pics and your experiences.
Aef, thank you too for the info... the more the better, it always helps to let people know what to expect.
And a big big thank you to everybody here who helped me get through this... sciencegal, tmb, shipsgirl, dancetrance, hope49, curly, schoolmom, portland, "the q's" susie and amy, patinmn, mcg, jc254 - I hope I didn't forget anyone in this round four fog!
Hugs alllllll around
Kay0 -
kaydee - YAHOO!!!!!!!!!!!!!!!!!!!!!!!!!
Great pics Hortense!!!
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Hortense - thank you so much for sharing!
Kaydee - yay! Soooo happy for you! Go celebrate!
As for me - help! I have what i think is a wicked case of cradle cap. My head is itchy itchy itchy and flakes are brutal and so embarassing. The apple cider vinegar did the trick up until the past couple of weeks; seems not to be helping at all. I don't remember reading about anyone with this problem. Does anyone know what i should do?
Hortense - did you have any cradle cap when you used Nioxin? You mention build up - is that what it was? My head is so dirty; I can't stand it.
hope someone has some advice for me. 28 days pfc and itchy head!
curly0 -
Hortense you look great! Thanks for the pics.
Kay- whoopeee!!! you did it!!!!! remember the toppik fibers can fill in those pesky bald or thin spots for a month until they stubble back over, if needed. They make the scalp less shiny and visible. It feels SO good to send the caps back doesnt it?
Curly I dont know about the cradle cap but I sure hope someone will weigh in.
AEF and others still capping- good luck and may your shedding be minimal. It will be over soon!0 -
Curly - wish I could help - the apple cider trick worked for me. How often are you shampooing? I washed I think every 3rd day (except for the 6 days around chemo tx's). Just wondering if maybe you are not washing frequently enough. Maybe contact Geralyn for advice?
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Kay i am beyond happy for you!! I'm glad you listed so many names because I really do feel like we've all been on this journey together. This was the one and only board I participated on and everyone was so positive and encouraging. I'm grateful to the ladies who answered questions or concerns that they probably see time and time again.
I'm so happy you are done! Isn't that shipment back the best feeling?!? Congrats!
Hortesnse, you look great!!
Dx 11/8/2012, IDC, 1cm, Stage Ia, Grade 3, 0/2 nodes, ER+/PR-, HER2-Surgery 12/04/2012 Lumpectomy (Left)Chemotherapy 04/04/2013 Cytoxan, TaxotereRadiation Therapy 07/01/2013 External
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curly-You should be shampooing twice per week. Those that only shampoo once per week are more apt to get the scalp condition that resembles cradle cap. If you've used the vinegar solution successfully you might continue with that and increase the amount of vinegar. What is the dilution ratio you are using? If it doesn't improve in the next week, you might try adding some Tea tree oil to your shampoo, at @ 5% solution.
Pain relivers- I've seen it mentioned that some nurses have suggested taking both Tylenol and Advil together. I have had onocology nurses from 2 different clinics tell me this can cause an adverse effect. If taking both pain relievers they should be taken apart at a 1 1/2-2 hour interval. Please ask before taking 2 different pain relievers just in case.
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Kaydee, congratulations! It's your turn to ship those caps back. Your freezer will thank you : ) I didn't shed very much during chemo, but have sure shed a lot post chemo. It's only fair that those who shed a lot during treatment should stop shedding much sooner- don't you think? Hope my theory holds true for you.
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Hi Everyone!! It's been a while since I was here; think I just needed to take a little break from cancer after my chemo ended.
Congratulations to those that finished. I loved sending back my caps two weeks ago. Just having them out of the house feels so good, doesn't it?
To those just starting, it will be over before you know it. I took Tylenol3 and Atavin about 30 minutes before the first cap. I really feel that being relaxed made a big difference to how I handled the caps. And funny, I never needed a blanket or anything.
And Hortense, you are beautiful!!
So two weeks PFC and I'm past the worst of my fatigue. Shedding has virtually stopped, which is a pleasant surprise. My hair is very thin and it's dry and wispy and that makes it look worse. I actually believe I can see the shadow of hair about to surface on my scalp; my mother says she can she early growth all over my scalp but I don't see it.
Here is today's picture
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Kaydee - Congratulations on finishing! You did it!
Curley - I had cradle cap in front even though I usually shampooed every three days with DermOrganic. I had big pieces lifting up and some others flaking off which was embarassing. I think I tried cider vinegar once - that time is a bit foggy for me, but it didn't do the job. I finally decided that I would have to soak the cradle cap to make it softer as it was crusty when dry, then gently work it free when it was soft and wet.
I wet my hair thoroughly, patted lots of shampoo on it, very gently worked it around with my finger tips to be sure everything was suds-y, and let it sit about ten minutes to allow my body's warmth to help the soap and water soften it. Then I gently tried to loosen the softened pieces with my fingers while looking in the mirror. It took several shampoos to get all of it loose and eventually gone. I did lose some hair along with the softened flakes, but not enough that anyone could notice.
I didn't use Nioxin until about ten days after finshing Chemo. I had realized that my scalp simply did not feel or look clean and my hair seemed almost weighed down. I looked up shampoo reviews online and saw that many people recommended Nioxin so bought some when I spotted it at my local TJ Max.
Shipsgirl - So glad you are on the other side and feeling better! Your hair looks so soft and angelic. It will absolutely fill in rapidly.
Thank you everyone for your kind words. I had been noticing people in the midst of chemo worrying about shedding and wanted to show them, as well as new people, that cold caps do work. I have been meaning to post the pictures for a while in the hope that they might encourage or reassure people. I shed quite a lot and by the end of my chemo treatment thought I had lost over 40%. I realized later, after getting my hair and scalp really clean, that that was not the case at all. I also noticed a lot of new hair started growing in about two months PFC which has since filled in between all of the hair I kept.
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shipsgirl - thanks for the pic! I bet your new growth IS coming in - much quicker than it would have without the caps. I fully believe your hair is going to fill in quickly...can't wait to see the progression - keep up the pics! So happy you are past the worst of the chemo side effects. PFC baby. It's only up from here!
Hugs to all who are worried about shedding! I know it's tough! I shed all through chemo AND for 4 months post. I thought it was never going to end! But it did, and I saved enough hair that no one could ever tell! And I am so happy now with the condition of my hair 1+ year PFC. It is healthy, shinier than ever, and even has a bit of body and bounce it never had before.
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And here is something else I want to share. I have never been I big proponent of Vit C, b/c I know it is controversial. I take a multivitamin and figure I get enough that way.
However, in prep for a surgery I recently had, my doc had me stop my multivitamin, biotin (that I was taking for hair), etc - essentially everything except my probiotic. And she had me START 1000 mg of Vit C daily 2 weeks preop, and I am to continue it 6 weeks post op. The only other thing I am also taking is Arnica Montanta per her rec's. So, the last few days I have been noticing that my hair looks shinier and softer with fewer split ends than it ever has in my LIFE. Could it be the Vit C? I read online it may help repair hair. Just something to look into...but NOT while you are in active treatment girls!!!!! Most docs don't want you taking stuff like that during tx b/c the antioxidants will reduce the effectiveness of chemo, etc. But something to think about for afterwards, with, of course, the approval of your doc. I'm thinking all other factors were eliminated pretty much in my case since I stopped almost everything else and started the Vit C as a new thing. Sort of like my own little case study of one. YMMV.
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I AM DONE! Finished chemo 5/6 and finish rads 7/27. Starting on my hormone blocker today, but feeling good.
I am treating my hair like I did pre diagnosis. Regular shampoo & conditioner, had it cut, had it colored, use product and blow dry as well as a straightner or curling iron.
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JLow, you look beautiful!!!! Another amazing success story! HUGE congrats on being done with the chemo and rads - wishing you all the best with the hormone tx!
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JLow you look so great!
Dance - thanks for the encouragement. I know my hair is pretty thin and sad looking, but I'm quite happy with it. It's better than no hair. I worked hard for it and for ACT I think it's an accomplishment. I think it's good to show that not all capping results in a full head of hair - and that it's still okay.
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Jlow you look amazing!
I hereby declare my shedding phase is DONE! For those of you curious about my overall timeline, here it is. Keep in mind I had TC X4 and probably mostly followed protocol with some exceptions, only when I felt confident my hair could handle it. When it felt super fragile I was very good about protocol.
- Day 17: shedding started
- After treatment #2: worst shed
- During treatment: cut my own bangs 3 times; started washing them every other day using a shower cap to protect the rest of my hair
- Post treatment: I probably shed as much post as I did during and about the same amount of time elapsed. I ended up with bald patches over my ears but otherwise it wasn't really noticeable, especially when I started being able to wash and style. I started washing every other day once I cleared the 3-day post treatment hurdle of my last treatment
- 2 weeks PFC: Hair cut, and started washing hair daily. Started using dryer on cool on hair and very lightly on coolest setting using a flat iron, but not every day
- 4 weeks PFC: Started standing under a shower and using Clariol Beautiful collection (from Sally Beauty) to color grays. Colormark had been a good substitute but I had to use so much by that point it made my hair stiff! Mostly back to my old styling routine, just gentler
- 7-8 weeks PFC: Shedding slowed considerably and hair REALLY started to regrow in all areas that had thinned. Remembered what I looked like with brows again (mine never went completely away but did thin a lot)
- 8-9 weeks PFC: Shedding stopped! Now I hope to move on to Naturtint hair color
Hope this is helpful for people. I'm really glad I did the caps and my doctors are now telling other women about this option.
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Kay- YAY!!!! Congratulations- I know how hard it is and I am so happy you stuck it out! I feel like we did this together because our treatments were so close together and am thrilled for you!
JLOW and Hortense thanks for the pics! You both look beautiful. Hugs!!
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shipsgirl - absolutely agree! I wish we could like posts on here. Cause I would like all of yours!
I just love your attitude and approach towards life. Glass half full kind of thing. Great post SusieQ! See, where is that dang like button?
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deleting this Post.. my rep said they no longer honor the 4 the month at $100 which is really sad. I wanted to help someone out. Oh well. Money is king to them I guess. For used caps I can't imaging that logic.
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Jlow - you look beautiful! Congrats!
makinway, hortense, dancetrancer - thanks for the info. I was washing every 5 to 6 days; I am going to make it every 3. I shed the most during washing, so was trying to avoid it, but i can't take the itchy head that has developed and the gross flakes. I actually put some baby oil on, as they suggest for baby cradle cap, that seemed to help the itch quite a bit yesterday after i washed it out. Had a full wash today and shedding of course. Itch just starting now. Ugh. it's a process like everything else, i guess.
Rads start monday. Had a good follow up appointment today with my onc. All clear.
shipsgirl - congrats!!!! you made it to the other side! And I actually think this pic today looks thicker than the last pic you posted. Regrowth will be there in no time! Congrats on shipping back! Took me 2 tries, but they finally accepted the caps back into the U.S. on the 2nd try, 2 weeks after the first shipment. Still waiting to see/hear back from the account people re: my deposit.
curly0 -
Hi Curly Congrats! How much did it cost you to ship back, i just finished too , dud you use one box UPS or UPSS? I'm waiting to see if anyone wants my caps before i ship them back
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Thanks Dancetrancer. I still have rads ahead of me, but so far this experience has had plenty of positive in it. I figure this is the path that life has given me, so I'm going to walk it with as much grace as I can. It's the trials in life that we learn from, right?
Curly, I was able to take mine over the border and mail it in the US. Told the border guard they were gel packs (truth). I have been asking for a final invoice that I haven't received yet. I plan to at least try to claim the caps on insurance. They will reimburse for a wig, so why not for something that prevents the need of a wig? I will be very surprised if it's accepted but I figure that the more people that try to claim it, the more known it will become, and the likelier they are to one day allow it for others.
I too have a very itchy scalp. It's so hard not to scratch it. When I washed yesterday, I had no shedding (only 2 weeks pfc, which sounds unusual). I figure I'll work more at removing the dry skin when I wash next time. I wouldn't if I still had shedding - I can't afford to lose extra. lol
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Today was my mom's last round of chemo!! So excited to send her caps back!
She completed 3/4 rounds of TC, per her Dr's request and due to some stomach complications.
So happy to be done with this part of the journey! She has lost about 30% of her hair. Hoping this next shed will be minimal! Oh and ladies....when can you start coloring? My mom is going insane! She can't stand her roots....
Me & my mom
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Is this a recent pic Chelsea? You both look amazing and beautiful and happy. Congrats on being done and shipping back. It seems like yesterday we were talking about the caps and how they work and what to expect. I hope it went by fast for you too.
Keep the pics coming, ladies - you all look so good, every one of you.
See my post on the previous page of this site for the timing of when I started all my color phases.
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FYI. I got instructions to ship my caps to Austin to one of the PCC reps for her to use with someone. Since I was shipping from home to another home the rate was unbelievably cheap! I think under $10. Getting them here from the distribution center cost me over $100. Check to see before shipping where they want you to send them.
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Chelsea - my heart melted and I teared up when I read and saw your post - you love your Mom so much! It is so wonderful to see. Anyways, the two of you look beautiful together! I'll let the other ladies respond about coloring. I highlight so I had to wait a full 6 months. Coloring is a bit different (some gentler types, etc.)
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LeslieVilla-It's ALL about the money! Think about how many more would benefit from this technology if the Penguin company actually sold the caps, instead of only renting them. The company might not make a large amount of money upfront but demand would increase, thus increasing their sales. The company could definately benefit from advice of professional's in the business arena...
I can't always post, much too busy these days! I do read everyone's updates and am grateful that many of you guys stick aroud to provide advise to the newbies. Thank you!
Congrats to curly, shipsgirl, kaydeesmiles for completing the deepfreeze!!!!
jlo, hortense, and Chelsea great pics-you ALL look Aboslutley fabulous!
I can't find who had asked about hair coloring. No coloring until 3 mths post final chamo and must be a vegetable based color. Continue hair care protocol for 6 months PFC. Check my hair care page on my website for hair care/shampoo instructions.
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