Cold Caps Users Past and Present, to Save Hair
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happens to me often to type out a post and it disappears.
Jlove- at any given combing at least that much hair comes out. I would be surprised if at games end I have any left.
My 9 year old son is getting scared and grossed out to see my bald spot. He doesn’t understand why the doctors can’t make medicine to make my hair grow - all I can do is cry. He doesn’t get it and of it and I’ve also told him very little. He’s too young to live this with me.
I hereby declare myself totally not presentable to leave the house.
Did anyone stay indoors for 6 months?
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Amelia - I have a similar thin spot on top. I use Cover Your Gray Fill In Powder to brush onto my scalp (leaving a part line) so it's not so glaringly white beneath my wispy bits. Then I pop on a beret. Although I don't feel pretty, I feel presentable enough to go out and run errands, etc. The head of the radiation oncology department at my hospital, with whom I had a consult yesterday, saw me without the beret and said he thought my hair was looking pretty good. I will take any positive feedback I can get!
I have a wig that I use for when I want/need to look a bit more pulled together. I suspect I will use it when I return to work, since I cannot see wearing the beret inside the office all day.
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Amelia--I used WOW powder from Ulta. It stayed on until I washed it.
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Amelia - you should not stay in for 6 months - go outside and enjoy life. Try a hat, I did a baseball hat w/ hair, toppikk, toppers, whatever I can do to fake it until I make it ...
I used Toppik (different brand the same thing) and brown root spray, it helps/helped a lot. I got the idea from others earlier on this post - probably August of last year.
I know it is depressing, I went through the same thing - your hair will look worse to you, not to others - try the bald spot cover ups -the work better than you think they would
I am 4 months PFC and my hair is growing back, slowly... and I still have some of my longer hair to put in a updo - thankful for whatever hair I had left. I also wear a topper to work, was a great find for me. Not a full wig, has clips very light -- all good
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Ladies - my bald spot is pretty big at this point. I think I lost about 60% of my hair altogether. i am able to cover up the bald spot with a combover. Yesterday I got Toppix in the mail and I put some on the worst spot (to test it out). Wow, makes such a difference! I actually look presentable. I think this will be my new hairdo. If it gets worse, I’m going to get a wig and a couple of hats. But I’m keeping on with the capping. I’ve come this far. Thanks ladies for all the recommendations! You are so great!
I talked to someone who said she put maxi pads in between the two caps in the Dignicap system - between the cold one that goes riGht on top of your head and the outer one for insulation. She said that it helped push the cold cap downward to touch the top of the head. I’m definitely doing that this next round. Or putting gauze like you are doing AMELIA. I need to try to keep the little I have left on top. :
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pbello- I'm with you too, had my 2nd treatment yesterday ( day 22) bald spot, tangled mess, lost ton! I have toppix i bought prior to starting so gonna try that , and gonna get my wig i put off getting(
i got fitted for it), I also bought a couple of hats. Fingers crossed it doesn't keep going!
Does the shedding slow down for anyone once it reaches this point?
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Is it okay to wear scarves and soft caps? I am starting the process next week. I'm not sure how I will be able to work after like day 2 of no washing or when I get bald spots without something on my head. I don't want to cause more hair loss though by wearing scarves. I was hoping light ones that don't sit on the scalp would be okay. Thank you for sharing your experiences.
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Hi ladies! I think it is great the way you are posting pics of your hair parts to share with one another....maybe post a pic post toppix too to share how much that helps. It sounds like many of you are just breaking past the notorious big shed.... don't let it get you down. It's a doozy, and can make you wonder why you are doing all of this, but remember that without capping, you would have lost all your hair at this point. The shedding tapers between treatments, and around day 20 after each infusion it will increase just a little again for a couple of days-- nothing like the first big shed--and then taper off again.
It's hard to believe that I am almost 6 weeks PFC! I had my ovaries removed (& port) last week, and have been recovering from that. Just waiting to receive insurance clearance and then I start rads. My hair has really thinned, and I have chosen to wear it up more than down. I keep using the powders to cover scalp areas and I am scooting by. Waiting on my new hair to start growing in still. Eyebrows are barely a couple of hairs and lashes are about 1/2 their norm and wondering if they will fall out completely any day. Gaining more energy every day which I love!! 💪🏼
Amelia -- congrats on finishing your EC! It is my understanding that the EC is much harder on your hair than the Taxol....so you should be smooth sailing from here! I am so sorry your son is struggling with your bald spot. My ❤️ Pours out for you because throughout these past 6 months I have worried more about how all of this is affecting my kids more than anything. I have learned how resilient they are and how much they love me unconditionally-- like I do them. Put out positive vibes (as tough as that can be sometimes), and he will do fine.
JLove-- Always appreciate pictures! I think you are doing great! Try using a little color powder on your part and it will blend things in. I lost my hair behind my ears too, but it filled back in with new growth before I was even done with my treatments. Hang in there!
Pbello-- hate when posts disappear! I've learned to select all and copy my posts while I am typing them so not to lose my progress and have to start over.... someone else recommended it to me and it has helped immensely when my post vanishes.
Magari-- I am proud of you for tackling the bra shopping with such grace! I recently tackled the same and it is not an easy task with prosthetics. I just had my port removed so once it heals I can finally try wearing my "real" prothetics and bras. I'm thrilled for you that you only have one treatment left! 6 rounds is tough, and seeing the light at the end of the tunnel is such a great feeling! You've got this!!
Schlomit-- So glad your infection cleared up! How did your infusion on Friday go? Only one more left --yay!!
Travel Girl, Willow and Pamela-- always a pleasure to hear from old friends! Blessings to you all!
Keep up the fantastic job capping ladies! Praying for success throughout your treatments!! 😃🦋🌈
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MamaFelice, I am glad to hear you had success cold capping with TC regimen! It gives me hope! I am 33 begin four rounds of Taxotere Cyclophosphamide chemo on March 22nd. To be honest, the Taxotere scared me. I have heard this one can be very hard on the hair, however I am going to use the Paxman machine. I am having some issues getting this arranged with the hospital, even though I am renting the machine myself and having it brought in from about five hours away from me. The hospital is worried about space. I'm being persistent.
Thank you for posting all the info you do on the boards!
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MamaFelice, glad to hear you came through last week's procedures so well. Your posts are always so positive and optimistic. You always share a lot of positive energy.
My white count was a little high-ish, at least in comparison to the previous infusions, but having finished my ampicillin the day before, my MO wasn't too concerned. So, Friday's treatment went off flawlessly. 3 down, 1 to go!!! The post #2 treatment shedding wasn't too overwhelming, certainly better than the shedding ahead of #2, which had started like clockwork on day #18 following the 1st treatment. A little extra shedding since Friday evening, but I'm guessing that's also due to the relative disturbance from the capping even with the hair net keeping things in place. With the Neulasta finished yesterday afternoon, I enjoyed a lovely warm shower this morning (and so thankful that when I remodeled my master bath I added a hand-held shower head as I didn't have to worry about my hair/scalp).
I'm so looking forward to the day when I can make the appointment to have my port removed, move on and through radiation, and back to some normalcy. Already looking ahead to early June having made the plans to travel to Asheville for my niece's high school graduation. Now, all we need is some spring and the chance to get back on the golf course.
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I am starting my first of four rounds of Taxotere Cyclophosphamide March 22nd. I am renting a Paxman machine and having it shipped in. I hope it all goes as planned!!
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Hey Cold Cappers, I am 8 weeks PFC and I just finished up radiation. Today, I didn't need a barrette to comb over the top of my head where my hair had thinned whilst cold-capping. I've got some soft, baby hair growing in on top! Makes my day! I'm going to post a picture that I took after my last chemo 8 weeks ago and then one from today. And, a picture of me ringing the bell today-you can't see my scalp anymore-Hooray!
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And, meant to add that I HIGHLY recommend cold capping to anyone who is considering it! I would do it all over again in a heartbeat!
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hi all! I had round -#3 today. I asked my MO what he thought about my hair condition. I have a huge bald spot on the top right side of my head and a 1/2 inch receiding hair line. I am covering all this with combover and toppix. He said I look great. He said if I wasn’t cold capping I would Be completely bald at this point. It totally made my day! So happy!! 😁
I put a maxi pad between the silicone and the outer cap this time around. The lady helping me said that’s what they did with the old Dignicap system, not the new one. But I told her I wanted to do it anyways. I’ll do anything that can help! I felt that the top part was colder this time. I think it helped. Let’s see how my next shed goes.
Lizabeth - thanks for the post with the pictures! Very encouraging!!!
SHlomit - hope you are doing well and have minimum SEs!
Mamafelice - great idea about posting pictures with toppix. I’ll do that soon.
Hugs to all you lovely ladies
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LizabethM -- I would do it again in a heartbeat too - even though I ended up with a bald spot on top. It helped me mentally so much during the chemo process - to look normal.
Also, I think having my hair to obsess over gave me something else to think about ...other than feeling yucky from the chemo and not tasting anything. Also I did a cancer exercise program, it helped me lots. I am in awesome shape now.
I am 4.5 months PFC and I have about 1/2 of new growth - which I can tell because I had a bald spot on top. Just like Mamafelice, I can wear my hair up and look normal (luckily I had watched an Dr. Oz show about putting hair up with bobby pins) - down I look like i have a really really bad mullet - so up it is
. For those that are wondering, the magic of Toppikk & Root Hair Spray -- this was taken on the same day (its the same side, just one was a reverse from a mirror shot) - You can do a lot with this stuff - Amelia really hope this helps you -- be an artist! Fake it until you make it.
I also wear hair toppers to get my 'sexy' on - discovered them in December before I went back to work from my alopecia sisters.
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Lizbeth - Thanks for checking in and being 8 weeks PFC! It is GREAT to hear that you have enough baby hairs growing in to cover your bald spot.
Travelgirl - You are definitely *are* working some magic with that Topikk and B&B dry shampoo! I guess there are others in the group doing so as well and would love to see their pics.
My own experience with Topikkk has been less than magical. I seem to end up with clumps in some areas and not enough coverage in others and it all looks very unnatural and actually draws attention to the area I'm trying to disguise. I've had better luck using Cover Your Gray Fill-in Powder, which comes in a compact with a brush. I'm able to apply it more precisely and build up coverage gradually using the brush. (It is also much cheaper than Topikk.)
I am now officially PFC! Completed my last infusion this afternoon, and my final cap an hour or so ago! There is no official bell at my oncologist's office, so I rang the call bell a few times!! Am packing up my cold cap materials so they can be shipped back to Arctic ASAP.
And I'm with Lizbeth - Even though I was not a poster child for cold capping (due in large part to the scalp dermatitis that I developed) I would still do it again and strongly recommend it to anyone considering it. I know my thin spots will fill in soon enough, and I'll be able to color and style again eventually.
Meanwhile, I can still wear a wig if I want to be prettier than my current look allows. I'm afraid of toppers because I don't want clips or anything pulling on my fragile hair at this point. And I don't think they make anything that would blend with my frizzy graying semi-waved bob anyway....
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And Today (above was 7 weeks PFC, I actually lost more hair before it started to grow)
I am in a good mood post my implant exchange surgery last week- loving my new squishies.
I am posting this to give everyone options - get creative. I love my topper - made of real hair, super light and it was cut to blend w/ my own hair - it was originally a few inches longer and I thought the shorter length was more natural looking.
I hope this helps you with ideas. Spray, Toppikk and Hair Helpers -whatever it takes my fellow warriors.
Whatever it takes to get your sexy back, do it. Amelia please go outside my friend, please
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Magari - congrats!!! What a wonderful feeling to be done.
I watched a lot, I mean a lot of utube videos to get ideas on how to cover bald spots - my alopecia sisters helped me a ton to work the magic - its a personal challenge I think.
I just copied ideas I liked until I found a way to make it work.
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magari - Congrattulations!!! 🎉👍 it must be an amazing feeling knowing you are done! That’s amazing!
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As mamafelice suggested, here are pictures of how I’m dealing with my bald spot. I first apply toppik to my bald spots using the bulb spray applicator attachment which I find helps even out the powder. Without it I get weird clumps. Then, I do a combover. And lastly, because I have what looks like a receiving hair line of about 1/4 inch due to hair fall, I apply concealer powder in that area. It’s so white compared to the rest of my face that it looks very weird otherwise. I know I have room for improvement on this process but this has helped me dramatically!
First picture is of my bald spots:
Here are pictures if I just did a combover without toppik:
And here is the final product, with toppik:
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Magari- congratulations! Glad you are putting that chemo behind you!
Pbello- thanks for posting the pics. The combover and toppik gives you very good coverage. You look great
I was at a look good feel better class today. The instructor asked what I was being treated for and where I was in my treatment. When I told her I was over a month into chemo for breast cancer, she said “ How do you still have your hair? In her 10 years doing those classes, she has never met a coldcapper! I explained the process to the group. I hope it helps the word get out.
I don’t know what the end result will be with my hair, but I’m game for round 3, nausea or not.
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Pbello - fantastic! Yes, that works well for you. I found that a combo of toppik and root spray provided even more coverage -- basically the spray colors the scalp - a good economical brand I found is Loreal Magic Root Touch up - also happens to be travel size friendly for airplanes.
https://www.amazon.com/LOr%C3%A9al-Paris-Magic-Cov...=sr_1_3_a_it?ie=UTF8&qid=1520975725&sr=8-3&keywords=loreal+root+touch+up
Rockcity - spread the word one person at a time - I tell everyone to increase awareness
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I'm 26 days into treatment and def have that bald spot at top and the back of my head has alot if thinning too .. I am def gonna rock hats, beanies, and baseball hats.. here is a pic with toppix I tried today and I'll have to get that root spray too. .. . it's pretty similar to pbello! You styled it really nice pbello! I'm not sure how I'll get my back spot ..but I'll have to try! Question, when you do the next cold cap are you gonna pit anything on your scalp to protect it ? I was thinking of calling paxman and asking what they recommend !
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Hi Cold Cappers,
I used the dignicap From May 2017-Aug 2017and did very well for the 1st 5 infusions. My final infusion, I had a different chemo nurse place my dignicap and it is my personal opinion she did not do it correctly because I lost 90% of my hair 2-3 weeks after my 6th infusion... It did not seem cold enough and I felt air bubbles under the cap which the chemo nurse poo-poed and claimed she knows how to do this. Well, it was wrong and I lost lots of my hair, but NOT all of it. It was devastating after spending $2700 to keep it. The dignicap cost $450 per treatment and insurance didn't cover it.Now my hair is beginning to grow back. It is very short and thick in my scalp area, my long hair is interspersed with the new growth and I just brush it back. I have a very tiny ponytail when I don't want my scraggly thin hair to show, or a very small tiny bun. But... my scalp is very painful. It is getting worse and more difficult to lay my head on my pillow without pain. No pain if I don't touch it, but very painful to brush it or touch the top of my head or near the top of the back of my head. Right where that air bubble was.. There is no inflammation or dry skin, not even redness in the scalp. Just painful and getting worse. Anyone else have pain when their hair began to grow back?
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Thanks for the compliments ladies! Makes me feel really good about my new hair style! 🤗
travel girl - thanks for the recommendation! I just ordered the magic root touch up on amazon. It looks like a fantastic product.
Jlove1821 - your hair looks awesome with the toppik and combover! Really amazing! I just had chemo and coldcap on Monday. I asked the nurse who helps me and she said i could just put the cap on without anything in between. I was (and still am a little) worried about it hurting my bald spot, but so far so good. Please let me know what Paxman tells you.
Carmstr - sorry about your final cap experience and your loss of so much hair right at the end! Sorry also about your painful scalp. Iam still going through the treatments so I can’t help you. Hopefully someone who’s further in the process can help you.
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I sm starting chemo next week, Match 22nd. I will have four rounds of Taxotere Cyclophosphamide. I will be using the Paxman system in attempt to keep my hair, so I will take progress photos and post updates.
Pbello - I asked Paxman if I could even continue to use the cold cap if I lost all my hair, to prevent quicker re-growth. They said yes, but there are things they can do to make it more comfortable should this happen. They are coming down to give me a crash course on it next Wednesday, this information included, so I can let you know what tips might help.
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Jlove -- Toppik magic!! Looks fantastic. The only thing I did was change my part. I promise you that with the Toppik/Spray you are the only one that can notice the thinning - I wish I would have fretted less and rolled with a little more (easier said than done). Happy Healing my fellow warriors.
I found that using the root spray helped to get the back spot easier OR getting a helper with the back, they have a better vantage point. you have got this
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rockcity- how was the look good feel better class.. I can get to one for another couple of weeks so looking forward to it!
Pbello or anyone.. any advice for volume ? Toppik has a fattening serum they sell abd was thinking if getting it.since my hair is so thinned out and oily it kinda just sits there..anyone use any product that helped that?
Travelgirl- thx! What a great product, hope it gets me to the end so I can stick it out! Did u do root spray first than toppik over it.. I just bought it too.. love me some amazon prime😂
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jlove1821- I enjoyed the class. It was nice to do something to make myself feel a bit prettier. They give you a large bag of full size cosmetics and makeup brushes. A lot of name brands like Estée Lauder, Bobbi Brown, Revlon and others. If you like makeup, don't miss this freebie. They also covered filling in eyebrows, selecting, caring for and styling a wig along with tying head covers. It was a fun two hours. Hope your shedding slows down soon. The toppik really looks good. I can’t see thinning on you in the pic
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jlove - I don’t know what to do about volume either. I have so little hair left on top that volume is also an issue for me. I’m looking into it but would also appreciate some advice.
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