Cold Caps Users Past and Present, to Save Hair
Comments
-
curly - I added a small amount (maybe just a few teaspoons) of vinegar to my shampoo. It did the trick for me with the scalp flakes. I was nervous to do it, too, but hated the flakes more, lol.
Yay shipsgirl!!! Cold caps are such a wonderful thing. I am still SO thankful for them.
0 -
Finally felt well enough to wash my hair. Of course there was some shedding - it's been a week since I washed it, I'm embarassed to say. Can't tell if it's a "normal" amount or not.
Still waiting for my chemo brazilian... and those damn leg hairs are tenacious!
0 -
Let the shedding begin! Nothing alarming yet, but I definitely noticed more than normal shedding when I combed my hair this morning. I'm heading for my second TC treatment tomorrow and it will feel good to get there with hair (day 21). I'm fully expecting to lose hair around my ears as the area is already tender. The caps do not provide a good fit in that area. I used the gel bands around the nape of my neck and pulled the bands around the sides but we couldn't figure out a way to tuck the gel bands under the cap behind my ears without pulling the cap away from the sides of my head. I don't think the cold from the bands will go through the cap and reach those areas. Hope it's not too noticeable.
I wanted to take a moment to thank all who participate on this forum- especially those who are long past their cold cap days and still share their experience. I probably wouldn't have used the caps if I didn't find this forum. Your tips, advice and encouragement have been invaluable.
0 -
Does anyone have horizon insurance and tried to get reimbursed for the caps? I'm in the middle of the process and just wanted yo see if anyone had advice. Thanks!!
Tina0 -
Hortense and mdg - thank you so much for the reassuring replies. I guess it's a good news bad news thing - I am sorry that you both shed afterward also - I am still shedding now 6 wks PFC. But although it may go on for longer, at least I now know there will be an end eventually. Thank you .
My hair gets thinner and thinner. I bought clip-on extensions for my daughter's "pre-senior-prom-parent event" two weekends ago so I wouldn't embarrass her - and I am sure that wearing those clips did not help my shedding. I loved the extensions, but my hair is still way too fragile for them.
On another note, I had my surgery last week ( partial masectomy and nodes on right, plus double reduction ) - am feeling sore and anxious - and now going in for my post-op appt today to find out if they got it all. I am really scared to hear the final path report. It just seems like treatment goes on and on and I pray to God to hear the words: all clear.
0 -
Oh yes. Full on shedding. I'm sure it's more because I didn't wash my hair for a week, but it certainly is disconcerting. I keep reminding myself that the reason I'm doing this is so that it will grow back thick again after chemo; I am less concerned about the short term.
And all the words from you wise women before me, remind me that this is normal.
0 -
jc254 and all going through this right now... we post cappers are happy to help all of you in any way we can. We have all been where you are, and know how it helps to talk to someone who has been there.
0 -
Hang in there girls! I shed for 4 months post chemo, but no one ever could tell I had lost hair. Amazing how much hair we really have...and mine was thin to begin with!
I lost hair at the nape of my neck and in front of my ears. My hair is long, so it covered all the loss without it being noticeable. The regrowth is so curly, cute, and gives my straight fine hair more body than it has ever had. So there are some benefits if you look at it that way!
shipsgirl my shedding was always the worst when I did the 6 days without washing. So you are right on with your assessment.
0 -
I shed for about 2 months PFC. My long thick hair was noticebly thinner and I hated it. When I returned to work after being off for 4 months, no one suspected why I had been gone but I am sure they noticed I was thinner (lost 15 pounds) and my hair was shorter and thinner. I am now 4 months PFC and it has grown about 1 1/2 to 2 inches at the nape and about an inch at the temples but enough that I can now pull it behind my ears and could put up if I wanted to with no noticeble issues at the nape. The back of my head took the biggest hit but was covered by hair from the crown. It is curly, baby fine but growing back. I think in about 6-9 months I will be less self conscious and happier with hopefully some thickness again. I hope to have about 4 inches of growth by then and moving forward.
0 -
I was fortunate not to have lost any hair at my nape or near my ears. That was due to the experience of my wonderful, experienced helper who knew exactly how to wrap the extra bands around my big fat head below the caps, or I most definitely would have lost hair as the caps did not quite cover everything.
I did shed constantly and had hair trailing off all the time. I was always picking some off of my shoulders and shirts and saw it all around my house. It was on my couch where I nested when not feeling up to snuff, trailed along the hall rugs upstairs and down, and even wrapped around the spindles on my stairs. I had a perfect stranger pick some off of me when we were in line at the market which was wierd, especially as it was a man.
I am somewhat amused that the hair coming back in has a chemo wave in it. I have always had stick straight hair, so this is new and I am having to learn how to handle it. Everything I shed has regenerated and I have quite full looking hair now, even though the new hairs are only 4" - 5" long, ten months PFC, because they have come in between all the other hair.
Keep the faith ladies who are shedding now, you will be fine!
0 -
jc254- put the gel bands over the cap- it helps snug it up and provides a couple extra inches coverage. Somehow the cold does go through the cap material.
I am hoping my avatar shows up this time, as I have been struggling with it. If so, this pic is taken at a month post chemo, using organix sulfate-free coconut shampoo and conditioner which fluffs the hair up a bit more. Have faith girls!! The temporary cold is SO worth it.
0 -
sciencegal, your hair looks great! Yay!
0 -
Thanks- I had the best coldcap team ever- four of my good friends came to help me each time (the "penguin crew") and I owe it all to them.
GOOD LUCK to all of you currently going through chemo and the capping. It is hard but so worth it to feel like ourselves at the end of it all.
I am glad I could show my success story finally after fighting the avatar program. My picture had too many Kbs initially to upload, that was the problem.
0 -
Hi everyone,
Enjoying reading all of these success stories!
So sciencegal you put your bands over your caps and Hortense you put yours just below the cap line?0 -
Hortense - thanks for a great giggle - the random man in the market line picking hair off your shoulder - ha! that could easily be me too!
0 -
Shipsgirl I still don't have a "chemo Brazilian" and I started 5 weeks ago today. I didn't have to shave my legs the past two weeks and today have a teeny amount of stubble. Still have hair on arms and upper legs too. Best part - still have hair on my HEAD despite what felt like lots of shedding after treatment #2!
I had dinner with friends last night and they were amazed at my full head of hair. Yay for cold caps!!0 -
Last treatment for me today and my nurse after treatment said that maybe I did so well with the chemo because I was distracted with the changing or the caps. He was also amazed and pleased that I kept my hair.
Ladies, these cold caps are truly amazing and so worth it! Oh, almost forgot, the last cap comes off in two hours. Yay!0 -
Science gal your hair looks terrific!
0 -
I love all of these pictures of hair! You all look amazing!!!!
0 -
Love all of the hair pics too! So thankful for cold caps.
0 -
Oh Rhonda, that is sooooo fabulous!!! Congratulations on seeing your last cap. You did it. You have proved you can do anything. I am joyful for you.
I had a clump come out above my ear. It was probably only about 50 hairs but they all came away in my hand together, like a lock. Every time I put my glasses on, I'm wondering if I'm dislodging more. I had to work not to let it freak me out, but I made it. I just had a little glimpse of what it would have been like losing it all and I was so grateful not to have to go through that. Even with bald spots above my ears, I will still have hair. I KNOW that. So I keps a lid on my freak out and I think I'm okay. One step at a time.
0 -
Great attitude shipsgirl!
0 -
Rhonda and Shipsgirl - you look amazing! I am so happy for you!!! And a big thank you like someone else said - to the wonderful ladies who have been through this before and continue to share your experience with us newbies. We are so grateful!
I had round 3 yesterday. I have to say, each time gets a bit harder....a bit of dread. But the cold is fine. The first few minutes are the worst for me and then it is bearable. Inbetween a couple of caps then feel extra cold, but i can handle it. It's the length of time that is gruelling. For me, because i have thick, curly hair, they ask me to wear them for 6-7 hours post my one hour infusion, which is gruelling. Yesterday was round 3. I am sitting here with a mess of tangles to comb through, but no energy to do that yet.
I am curious about how frequently you wash your hair on non chemo weeks. I know now they say twice per week, in the past was once per week. I have been averaging every 5 days; sometimes 4 days. sometimes 6 days. But i read from a couple of you that you shed more if you leave it 6 days? What do you think the best level of frequency is?
I picked up some extensions finally to thicken up the back. Haven't tried them on yet. My sweet brother yesterday asked me why i need them - he thinks my hair looks normal. Yay...i can tell a huge difference, but clearly many can't, which is great.
It is fun showing up to the hospital with hair and people wondering why i am there and nurses walking into my room in disbelief.
Yay for cold caps!
curly0 -
Whoops...i meant sciencegal - you look great! Shipsgirl, i'm sure you will too at the end of this!
curly0 -
Finished my chemo and cold caps on Wednesday. When can I start gradually going back to normal treatment of shampooing? I know to wait a couple of months before coloring, but I would also like to get it trimmed a bit since I haven't had a hair cut since January!
0 -
Curly I washed my hair once a week through chemo - always on Sunday because it took so long to dry without a blow dryer (I work the other days). I did use conditioner on the ends to help with tangles.
A trick that helps is to do gentle combing before washing to remove the dead hair. SInce my hair is long I could hold it and use my old soft brush to detangle the lower lengths, never letting the bristles touch my scalp. It seemed to help separate out the hairs so that only the loose ones would shed while washing.
Once I was two months PFC I started washing every four days. Still on that schedule, treating gently.
Good luck to all! I am thinking good thoughts for you!0 -
I wash my hair every 3 to 4 days with Nourish Shampoo from Trader Joes. I like it so much that I think I'll keep using it form now on. I use conditioner only on the ends like Science gal to help with the tangles and to soften my dry hair. I shed mostly between rounds 2 and 5. I can tell the difference, but no us else can. I now that I will continue to shed for awhile, but I'm just so grateful that I have my hair.
Curly, round 3 was the hardest on me for body aches and fatigue. I think it may different for everyone, but after round 3 it kept getting better. This time, I feel better than all the rest so I'm hoping it stays that way. My Onc does not like me to take Advil so I took Tylenol or Ativin about an hour before the first cap and had no problems with the cold for the rest of the time. I'm sorry you have to wear them so long past the final chemo. I had to wear then for 4 hours past the final Chemo and that was long enough for me. Keep up the good work though, becuse it is worth every hair that you save. I will was my hair on Sunday and new pictures of what my hair looks like.
For all the new users, keep the faith and we wish you the best of luck. It works!0 -
During chemo I washed every 3 days except for chemo week, per instructions from the Penguin rep at that time (spring 2012).
I kept to the every 3 days until my shedding slowed considerably after chemo - which was at about the 4 month mark for me. That is also when I started using warmer water and washing my hair in the shower, instead of with cold water at the sink. I didn't get it trimmed until 4 months PFC as well. I was petrified to get it cut. I really went by what my hair told me. Still shedding a lot = not changing my protocol. Shedding decreased? = start going off protocol. YMMV.
I now try to wash only every other day just to continue to be kind to my hair, but if it looks crappy I will wash it two days in a row -especially if I need to look extra nice. Thankfully, my hair is less oily since chemo with more body, so I don't have to wash it daily...one of the benefits of chemo! (aside from killing cancer, lol)
0 -
Curly, I don't think we shed more hair by washing less, just that it comes out in one washing rather than two. Penguin says twice a week is fine and I do that in non-chemo weeks.
Okay, so despite my logic telling me not to freak out about losing the clumps, I had a terrible time sleeping last night. I was sure my whole head was tingling and I was afraid to move in case I dislodged hair. I'm not fearful; if it happens, it happens. But I couldn't stop thinking about it. And the hair's still all on my head this morning, of course.
One day at a time.
0 -
Hello Ladies.. i'm starting TCH treatments May 23 and want to try these cold caps. I read on the Penguin site that people got frost bite and permanent numbness and horrible blisters?
Any one else have that problems. Some saying you have to put mole skin over your ears and forehead and purchase an infra red thermometer to make sure the caps are not too cold? I'm also hearing the prices all over the place. The website said nearly $800 to 900. Is there any way to get some fundng for these things? any one had luck with that or insurance covering? Yikes like i don't have enough stress planning for chemo! I think my doc said i will get chemo every 3 weeks for 5 times then jsut heceptin so i would only need the caps 5 times. GOTTA save my crown of glory (hair) if i possibly can minus the frost bite
0
