Cold Caps Users Past and Present, to Save Hair
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Not sure if this is the right group or not. but here it is..I finished my treatment 3 weeks and 2 days ago, but who is counting, yes. I used the cold cap and at the end of the my treatment I still had about 50% of my hair. However over the past 3 weeks my hair really started to thin out more. I now have about 35% - 40% of my hair. I do have some bald spots and really thinning hair.
Ok, I am totally frustrated because from what I read hair growth should have started 2 - 3 weeks after treatment... well, it seems like i am losing more hair instead of growing it back.
My question, how long does it take for hair to stop coming out and for hair to grow back? I refuse to wear my wig, because it will defeat the purpose of my using a cold cap.. but when your hairdresser and family who knows is saying time to wear the wig.
I just don't get it I stopped my treatment and now I am losing my hair...
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justme1964 I remember feeling EXACTLY the same way. It's disheartening to have hair keep falling out, when chemo is done. GRRRR For me, it did keep falling out for 3-4 weeks for sure. I did have very thin hair by then, but it still looked like a head of hair to the rest of the world.
At about 6 week PFC, new growth started coming back. By 3 months after chemo ended, I definitely had new, short hairs coming in everywhere, making my hair feel thick again. I lost my eyebrows and eyelashes at about 4-8 weeks PFC. It took some creative eyebrow pencil and eyeliner action for a few weeks to un-disappear my eyes. And, those definitely grew back by 2-3 months PFC. Same with all body hair everywhere else.
I think this is really going to be individual, so my story might not be exactly like yours, but my message is, hang in there. It will get better. Hair will return, and you'll start feeling like yourself again.
Warm wishes of support to you.
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Justme1964, HikingLady is right, there is no universal answer to the question "when is my hair going to come back?" It is very individual and varies a lot. The same is true of hair thinning. The frustrating fact is that chemo side effects can continue for a while after your last treatment. In my case, hair loss gradually slowed down over a period of about two months, and the first signs of new growth appeared -- finally! -- at about the two month mark. One of these days, you will look in the mirror and see something new. I hope it will be soon!
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morning- I used Penguin caps while getting 4 rounds of tc--I finished treatment with about 80 percent of my hair and then lost another 5 percent thru 5 months of ongoing shedding--yes that was frustrating but coped by only washing my hair every 5/6 days. It started coming back in about 2 months pfc--then I started on letrozole-and at 5 months it stated shedding again -mildly- and now at a year and a half that mild shedding continues- mostly when I shampoo so again only shampoo every 5 days or so. You dont list what chemo you received but seems that adriamycin is worse when it comes to hair loss no matter how careful you are--but take heart it will come back in-in mean time maybe get a topper in your own color for now--some have written that it was kinda "fun" experimenting with hair pieces knowing it was only temporary---take this a day at a time- things will get better--we are here for you--hugs,Kaylie
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I had TC in 2017. My hair was noticeably improved about 4-5 months after chemo was complete (However, it was growing quite a bit before then - probably starting 2 months PC, but I had it trimmed at the salon 6 months PC and gently colored 8 months PC). What helped me in the interim was the fact that my body was feeling better and better. From about 2 months post-chemo, I noticed that my body ached less and each week from then, I just felt better. So I focused on how my body felt and rejoiced!
Post-chemo I continued to use my satin pillow case, and washed my hair just once a week. Even two years later, I try to only wash my hair every 4-5 days (though I am back to using my regular pillowcase).
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Hello Everyone - Diagnosed in May, post BMX, start 12 rounds of Taxol on July 9th. Also start Herceptin at same time. Oncologist says I'm a good candidate for cold capping. I've been in touch with local representative and it's all lined-up for me to use them.
My question is: How heavy are the caps? Anyone have significant neck/shoulder pain with cold-capping? I am doing 12 rounds on consecutive weeks. No breaks for me. The problem is, I have a bulging disc in my C6-7 (neck) vertebrae. The pain is fantastically managed by a nerve block I received 5 years ago. I don't want this to change.
I'm not a fragile person....I'm pretty strong physically. Just wondering if the cold cap weight is extreme? Anyone with this issue? Thanks
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Wheatscapes, what brand of cap are you using? I used Penguin caps, and they do have some weight to them. Bring a neck pillow with you - one of those u-shaped pillows - it really helps with comfort while sitting back in the chair. I found that I needed to sort of brace my neck during cap changes when my helpers were pushing down on the top of the cap to get a close fit. That might be an issue for your neck, but a close fit is important. The caps work really well with weekly taxol/herceptin
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Wheatscapes I used Paxman. They're not the least bit heavy, and I never noticed their weight at all. The water circulating inside them of course must add a bit of weight, but I really never noticed it. COLD, I did notice! But, there were ways to get through that. Deep breathing, and take Tylenol before infusion. The freezing cold feeling went away, always, after about 10 minutes.
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I remember that that the back of my neck did get progressively more sore as the capping time went into several hours--7 hours total- I do have arthritis in my neck and the pushing down on the top of my head while straps being tightened was not fun. I did learn to brace my neck when it was time for that part of each cap change and it did help as it was the compression of the vertebrae that hurt-I only had to do 4 rounds so sympathize that you have to do 12---just remember -you have a very good chance of saving much of your hair--so try to hang in there for all of it- you will be so happy to come thru with most of your hair--good luck!, Kaylie
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Thanks everyone, I called my orthopedic surgeon and he recommended that I purchase a soft cervical (neck) collar and wear it to stabilize my neck. I will keep all of your suggestions in mind, too
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Wheatscapes that is a really good idea, the cervical collar. You might see, when you tour the infusion clinic, what the chairs are like. Mine was like a recliner, and there was room to nestle myself in pillows around my neck and back, and they provided pillows.
The first time, I took along a U-shaped travel pillow, and it helped keep my head and neck comfortable. The other times, I just used the pillows that they supplied, which also worked fine.
Since I used Paxman, there was no changing of caps--you keep the same one on the whole time with that system, by the way.
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Hikinglady - I wish I had access to the Paxman cooling system. I think it would be way easier on my bulging disc vs. traditional packs that have to be rotated. I think I will also take my inflatable travel pillow. No telling what will or won’t help.
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I had my first chemo last Thursday and used the cold cap, very strange feeling but worth it I can keep my hair, since then I have washed my hair with baby shampoo & conditioner, no hairdryer or heat used on it. Losing my hair is such a big thing to me. I will carry on with the cold cap each time and give you my results on here, good to talk to others going through the same.
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L_w Who knows if this is why I had good success, but I decided to rarely ever wash my hair. Day 3 or 4 I did, because I read that most of the chemo goes out our pores around that time. Then, I just didn't wash my hair. Barrettes and clips and just having it be Not As Fluffy As Usual became my norm. I kept maybe 70% or so. I did have shedding, and it did thin, but no one else could tell. Good wishes to you!!!!!!
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Hi all,
I finished my TC treatment 4 weeks ago. I used the Paxman system. I held on to most of my hair during the actual treatment phase, but I must say that in the 4 weeks PFC I've continued to have pretty heavy shedding.... the most in the last week -- about 3-4 weeks after my last treatment. That seems to follow the pattern of my other treatments... I would have a period of heavy shedding right around 3-4 weeks after every treatment, but then it slows down. I'm just wondering is that what others have experienced? Will it hopefully slow down over the next few weeks? I'm really hoping that this is the last heavy shedding period.... my hair was on the thinner side to start with and now its really getting thin on the crown... I can still cover it up with creative parting and using some product to cover the grey roots, but there will come a point where that doesn't work anymore. Thanks everyone, and good luck!
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I used Paxman. Heavy shedding for 4-6 weeks PFC. Also that ‘tingling’ which also happened at the shedding times during treatment continued, with a feeling of scalp sensitivity for several months.. However, even at the thinnest, I had 60-70% of my hair. It was certainly thinned, but really unnoticeable by others. 3-4 months PFC, my hair was thick and coming back great. I’m now 9 months PFC and have completely thickened back to normal hair. Also a bit curly, which I have heard is kind of common. I’m fine with my ‘chemo curls,’ and I have no idea if that’s permanent or not...
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Thank you HikingLady! When did you start regular more frequent air washing? Using normal shampoo? I'm still using the Paxman shampoo and conditioner -- afraid to try anything else! But wondering if I could try using something to stimulate regrowth yet.
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I didn't ever use any supplements or topical treatment to stimulate regrowth. After a few months, my normal hair started regrowing. I stared using normal shampoo after I used up my Paxman bottle--maybe just a couple of weeks PFC it got used up. It lasted a long time because I didn't use it much during chemo. After maybe a month PFC I treated my hair pretty normally. I didn't pull on it or style it a lot with heat or wash it super frequently until maybe 2-3 months PFC.
I remember very well the frustration and worry at that point. However, once I was done with chemo, I also felt kind of like 'well, I survived this crap, so I guess I can wait a couple of months for my hair to get normal again!!' And, it did!
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hi all! I’m on my second treatment, been using Paxman. Shedding just started, and it’s really heavy and I can’t stop touching it!! Question for the veteran users: am I really going to make anything worse by washing or combing my hair? I don’t really understand it. Like, if chemo has killed the hair root and it’s going to fall out, it’s going to fall out either way, right? I’m not making it die by brushing it, right?
Here’s where I’m at: I have really long, thick hair. So my hair has been “falling” out, but not really making it to the ground yet because a lot of it gets sort of caught up and stuck in my “still living” hair on the way down. So I feel like I have this rats nest half way down my hair where a bunch of dead hair is just getting caught and matted up. I want to brush it out!!
Basically every time I even gently run my hand over my head, a handful of shedded hair comes out. But that hair was dead already, right?? I guess I just don’t understand why the instructions have us being so careful.
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hi there- your regrowth has to come from within in its own time--it will happen- I know with me I just did what I could to not risk pulling out any more hairs than were falling out by themselves- I limited washing cause just the motions of washing can pull on hair--I used a wide tooth wooden comb and gently combed in sections holding onto the roots each am so I wouldn't get mats from the shedding hair- my hair is semi thick and past my shoulders. I figured that even the hairs that hadn't died were fragile so was very gentle. I continued shedding for 5 months pfc but even with that time frame - ended up with 75% of my hair- I used Penguin and consider it a major success for me- well worth the effort and cost--by the way for those considering Penguin- ask for used caps- are fine -just used before- they have been cleaned and sanitized-but cost less- 300 /month rather than the standard 500/month--you have to ask-they don't volunteer that info- they are a business after all--hang in there- life will become more normal over time- it will- try to focus on that goal--hugs,Kaylie
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Hi - I followed the instructions on the Penguin Cold Caps website. They suggested gentle treatment, and I was paranoid, and babied my hair. YES, hair fell out in giant shedding days, but overall, even so, I looked like a person with hair.
I suspect that the being careful idea is that the follicles are more fragile, so let's not stress them? I don't know! I combed infrequently with a wide-tooth comb. Sometimes I went with the hairband/scarf look with some hair showing, because I didn't keep my hair very clean. No one really noticed that it was thinning, and they also didn't notice that I didn't wash it much.
YES, life will become normal again over time, as Kaylie says. hugs from me, too.
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well I combed as described every am but think holding onto the roots of each section as i did helped with inadvertant pulling out of hairs..as
You said..who knows?
But I do know that getting thru chemo with most of my hair intact was so paramount to maintaining my privacy and coping with an emotionally devastating ,,,rock my world off its axis .crisis..hugs right back,kaylie..(Candace)
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My 6th and final chemo is this Wednesday & I’ve been using Chemo Cold Caps. I wash my hair about one a week, thinking that less washing = less stress on the follicles. I started out with long (a few inches past my shoulders) thick hair. I’ve had some shedding and thinning & even a REALLY thin spot on my crown, but overall people can’t tell that my hair is different. I, too, get creative with my part to cover the crown area. I use a wide tooth comb and hold pressure on the roots as I comb. I’ve been using Sojourn moisture shampoo that I ordered on Amazon.
At this point in this crazy ride, I’m really thankful that I’ve been able to keep so much of my hair. I’d say I have kept about 75% of it so far. Our hair really defines so much of who we are as women. Fingers crossed as I complete chemo & I’ll see how the shedding goes....
Sending prayers for all that are going through cancer treatment. It sucks but we are strong!
Angie
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IM2C,
Here's my 2 cents on the shedding & brushing question. I too had long thick hair to start. I think that much hair makes getting your scalp really cold far more difficult. I lost much more than 50% of my hair. BUT, for the last 5 or 6 weeks, I kept my hair in really loose braids and my shedding slowed down considerably. Maybe because I had finally lost enough hair to be able to cool my scalp better, or maybe because I was no longer running my fingers through my hair to catch those loose hairs that were hanging down or maybe both. I know they recommend NOT braiding your hair but those tickling stragglers were driving me crazy!!
Good luck!
Kim
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Can-D How many chemo sessions did you wear the cold cap for. Curious as you state you started toward the end. I read somewhere that cold capping starts with the first treatment or not at all. I can try to find my source. Otherwise, I would say better something than nothing. Best of luck! Best of health!
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I noticed this thread hasn’t been too active lately, so I figured I’d post an update of myself. I wasn’t too active on here but I got a lot of knowledge and encouragement from reading the comments.
I used penguin cold caps and finished chemo in March 2018. So it’s been almost a year and a half. I kept maybe 85% of my hair. I didn’t realize how much I lost until it started growing back in, about 6 weeks pfc. My hair growth has pretty much blended in with the rest of my hair. I have hair that’s a little longer than shoulder length. I mostly lost hair at the nape of my neck and above my ears but when it was growing in I realized it was it was at the top of my head too, so that hair of course grew in straight up, lol!
I would definitely cold cap again. I feel like I was able to bounce back quicker mentally not having to see myself bald every day and I would still have super short hair as a daily reminder I’m a cancer patient. If anyone is on the fence, I definitely say go for it, but I do realize it’s not for everyone
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@poppy_spruce, I had the same chemo and started deep conditioning right away after chemo ended. I slowly worked up to warmer showers to wash my hair over a month but the improvement was noticeable immediately. Your hair will come in faster too, so keep the tepid water coming and the slow combing for at least a month but then you are home free. I had about 60% hair loss but 6 months of cold caps fried my hair so it was crazy looking. I used a "modified French bun" approach and just pulled it back. A little Topix to cover the sparseness and no one noticed.
Keep on cold capping ladies, it works!
Love and white light to all of you! PM if you have questions, glad to help. 2 years out and have hair down my back . . .. just saying!
Anne
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HI ladies! I have not been on here in forever....9 year survivor that had success with PCCs. My bestie's mom was just diagnosed and is set to do 6 cycles of TC. I only did 4 cycles of TC. What is the success rate of 6 cycles of TC with PCC's? I know my hair thinned with only 4 TC. Thinking 6 would not leave much hair.....Anyone that has done 6 TC can you comment?
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I also did 4 tc and used PCC and saved 75-80% of my hair-so glad I did it.
tell your friend that her mom can rent used caps-are fine and sanitized-just previously used --for 300/month in stead of 500 /month--she has to ask for that-the front office does not volunteer that info
the research,confirmed by my onc at the time we were making treatment decisions almost 2.5 years ago showed that 6 tc were no more effective than 4 treatments--something to research and discuss with friend's- onc.I am followed at a major academic cancer center and all up on latest research and studies- more is not necessarily better...
of course-every woman is unique and dont know your friends situation--good luck!
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mdg - i did 6 round TCH although I used the paxman system which is the same idea as PCC - I kept about 75% of my hair so I think she should totally try it! I know the results vary for each person but it worked for me
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