Cold Caps Users Past and Present, to Save Hair
Comments
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Fast girl: I usually color my hair every 3 weeks. crazy, I know but i hate having my roots show and i turned gray very young. silly question, but when using the cold caps, the hair stops growing right? So, using the spray would just be after your last treatment and your hair starts growing back? did you finish treatment?
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Rdsm--I totally relate. My gray roots are white (thanks to my Mom's genetics), so I've been coloring every three weeks for years and years. Your hair does grow during chemo, so I started cover up with WOW touch up powder (you can buy at Ulta, Amazon). When the roots became so long, I switched to the Loreal spray. A number of others on the blog used it before me (Pamela23 and Catgirl and others). This is against the Penguin protocol, but I work, and had to do something. I did 12 weekly Taxols with Herceptin every third week. I am 4 weeks PFC. I would recommend taking the time to go to an earlier point in the forum (Feb 2017 or so) and skimming. There are all sorts of recommendations along with people's experience about hair care, roots, as well as capping. Hope this helps!
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Thanks Fastgirl! Let the hair keep growing!
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lowcountrygirl - Thanks for the heads up. I had thought about it because my second infusion was not easy. I can't imagine how it will be during my third and forth infusion. I will take two tylenols instead of one. I just took these pictures. Was your hair as bad as mine a week before the third TC infusion? At this pace I might end up looking like Gollum!
Any comments from anyone are appreciated. I just took these two pictures:
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hi cali, your hair looks great. Don't worry. It will start filling in from the top. I had 6 TC's and mine looked way worse. Mine thinned out more from the bottom to where when it was down it's just see through and scraggly. Once your done with your last TC the top will fill in more and just use the toppik. But the bottom of your hair still looks full enough.
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Cali...mine was way worse especially after number three. Same pattern as yours but it widened out after three into a bigger round baldy thin spot that started going down the back of my head. Then my nape all fell out so I'm left with a thin curtain of hair midway down the back that hangs down all straggly. I clasp my hands and say "precious"!
You are doing great. Hang in there. You look much better than I did at that point. Even though I lost a bunch it was still worth it and I would do it again. No regrowth yet but I'm not even four weeks out. Way better than total baldness (for me). I know cancer is more important than hair but I felt stronger this way. I read about women who shave their heads to feel in control...the cap made Me feel in control. To each her own.
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hopfull2 - I hope and pray that I don't shed too much more. I have 3 bags full of hair from the last 3 times I have washed it. Did you post pictures of your hair right after PFC? How is yours looking after several months PFC?
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For all the newbies who want pics of what to expect at different stages, I went back to when I started in Nov and wrote down the pages that had pics posted:
p579-581
584, 587, 588, 590, 593-596 (my first pic and even looking at it now, I had more hair 3 weeks PFC!!)
590, 605, 608-609, 611-614, 616, 617, 619 & 620
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Reading everyone's questions and concerns I can offer some of my own experiences.
I used the cold caps during my chemo treatments. 20 weeks - 4 AC/12 taxol and I kept my hair!
I have fine, thinner hair to begin with so it was very thin afterward. It does stress you out, all that shedding! I kept thinking I wasn't going to end up with any hair but I did. I had a similar look as Cali58. I also lost a substantial amount on top, and around my ears and nape of my neck. I had a little bit of that "curtain" look that others mentioned. But, I still had hair that the average person would have just thought was on the thinner side. I never had to wear my wig once.
The good news...it does begin grow back quickly. I had 2 inches of growth around my ears by the end of my treatments. I am now 5 months out and have about 2 inches on top - I look a little like Alfalfa! This last week I had tape extensions put in and I was just giddy! I colored my hair again at 2 months out with no issues.
I don't have all the answers but I will be happy to try and answer any questions.
By the way...I wore the caps for 5 hours (continued at home) after and changed them every 15 minutes. I used Arctic Cold Caps and they had been very honest and told me that my chemo regimen was going to be tough but they had a couple women that had been successful doing the extra changes and extra time after.0 -
hi cali, no I have not posted pics. I'm 3months PFC and I won't dare wear my hair down cuz it looks extremely and I mean extremely thin. So I keep it in these tiny clips that I bought like in a mini French twist but the twist is so tiny and thin but I will post some. Above are pics 6 weeks PFC. I cut about 1inch off at 10 weeks PFC I will post current pics soon but its not much of a difference just the top looks a bit fuller and longer but bottom hair still very thin 0 -
I have a question for Cali & Lowcountry--did you guys change your part? I never did and I am thickest on top of my head. Actually, it's what covered my bald spots which were on the sides underneath. Just wonder if that has anything to do with thinning on top. I had 4 rounds of TC. Isn;t that what you girls are on?
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Products, products, products.....
I am only on day 9 after my first infusion. I am using Penquin Cold Caps. I'm anticipating my first shed and want to be prepared. I'm a brunette but have been coloring my hair for years (thanks to my dad's genes). I've already bought some Topik. I've also heard about WOW and L"oreal Root Touch Up Spray.
Does anyone with experience have any good recommendations for supplies to stock up on? Too bad all these products aren't covered under insurance.
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I didn't know how to "jump to" a specific page like the ones Pamela23 had so kindly listed for us. I sent a message to the moderator and get the following info. Hope this helps you too.
Yes, you can do this by going to the url in the browser, and at the end of the url, when on a thread, you'll see page= and a number. Change that number to whichever page you'd like to navigate to, and hit enter, and it should take you right there!
Hope this helps!
--The Mods
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Pamela...I didn't really have a part. They made me wet my head and comb my hair straight back prior to putting the Dignicap on. It just didn't fit well on top so that's where most of it came off. I look like George Costanza with longer hair and bangs. I must have a weird shaped head.
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Oh--the dignicap! I hear the downside to that is it's pre sized, is that true? I kept my hair parted down the middle to cut the thickness so the cold could get to the scalp. But I used Penguin. Do you think that has something to do with it? Anyone else use dignicap that had the same balding pattern as Lowcountry?
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Pamela23 - Thank you so much for posting the pages that include pictures. You are so sweet! It's incredible how everyone is different. There is no way to tell at this point if I will lose more hair or if it is going to slow down. Regarding your question, chemo #1 my part was in the middle. Chemo #2 on the left side, like in the picture. My part has always been on the left side.
LowcountryGirl - I am having chemo #3 on Tuesday next week. I will have to wash again on Sunday. I pray for the shedding to slow down.
Trm103 - Thanks for sharing your experience. Everyone's experience is very interesting.
Hopfull2 - I like your hair. It is looking really good
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Pamela...they have three pre-sized caps with Dignicap...mini, normal and jumbo. Kshorten on this board and some others have had the same balding pattern. They have some improvements to make for sure. The perimeter fitswell and it bubbles at the top. Argh.
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radmonkey- I called the infusion center ahead of time and told them I was cold capping. I kinda got this long silence, then "oh". I'm not sure what that was about but when I told my oncologist's nurse about it, she told me not to worry about it. On infusion day I told my nurse she wasn't going to need to do anything related to cold capping and if my stuff gets in her way, just say so. I never heard another word about it. When I showed up for the 2nd infusion with all my hair, I started getting a lot of attention from the nurses because they couldn't believe it. For 3 months, I was famous at the infusion center and they looked forward to seeing how much hair I still had.
So, my point is although it seemed they weren't thrilled in the beginning, their attitude changed.
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Hi Cappers! Just wanted to remind those when your thin on top to wear a wig cap (my Arctic Cap nurse said )so not to get frost bite or cause damage to scalp that may not allow hair to grow.
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hi ladies, 32 years old, starting chemo in a few weeks. I plan on using Penguin Cold Caps, anyone has heard of any experiences of African American relaxed hair and cold capping? Any experiences on chemically processed hair and cold capping should be useful. It will be a couple of months between chemo and my last relaxer but I am not sure if this will have an impact
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tannniii, I've been around here since 2012 when I was treated and I do recall one or two African American women who successfully used cold caps. Not recently though, and I don't know if their hair was relaxed.
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HapB, if your hospital has the Dignicap machine system, you would pay rent to the hospital to use it. Otherwise you would rent the caps from the cold cap company (Penguin), buy your own caps (Elastogel), or rent from a company that provides the Elastogel caps and other supplies (Arctic Cold Caps or Chemo Cold Caps and perhaps others). Please check out the Rapunzel Project website for good information
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HapB, I just sent you a private message. I am a cold cap user being treated at MGH. Happy to share more specific details with you.
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on a positive note yesterday a nurse came into our room when I was cold capping she told me when I first came in with the cold caps that she was not a believer but after4 AC's and 3 taxols down I completely changed her mind . That felt so good to hear! She could not Believe it
Feeling so much better on taxol!!! Tired but no vomiting or nause
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Hi ladies - I just complete round #4 of 6 of TCHP and I've only lost about 10% of my hair. I'm not complaining, but I'm wondering if anyone else has experience with this regimen and how your shedding timeline went. Just wondering if I should expect a big loss coming up.
Also, Arctic Cold Caps recommends putting the caps on when they're at temps between -25 and -35 below. I can't seem to get them to that temperature so I've just been putting them on my head between -40 and -50. I know I have to be careful about frostbite, so I'm a little worried about that, but so far I still have enough hair to protect my scalp and my ear and forehead protection has been sufficient. Has anyone else had the same issue and if so, did you have any problems or come up with any solutions?
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Hi Everyone, Wednesday was my first AC. Cold capping was not fun. We did have to cap in the car on the commute home.... and I got extremely nauseous and tired in the car. I had to cold cap until 8:30pm so my husband had to wake me up to change the caps. I was nauseous all day yesterday. Right now my hair is a greasy mess.
Runner70! thank you for the advice. I had a male nurse who seemed really laid back about the capping. I got a lot of stares from other patients. I don't get my own room, it's just one big room with about 20 recliners and everyone can stare at you. I was the only person capping. Unfortunately, I will be doing my second chemo at a facility near my house so starting new again.
Question: the cap areas were different temps. The front was -30, the back was -40 and the sides were -10. We decided to put it on when the front was -30, even though the back was colder. Did you have variation in temps on the caps? Also, my chemo was Wed. Is day 3 considered Friday or Saturday to wash?
Thanks,
Lisa Radmonkey
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Radmonkey: I was also extremely nauseous from the caps. For round two we are going to try to starting the anti-nausea meds earlier to see if that works.
I am on day on day 11 and have seen a little shedding today, but no other hair loss.
I started wearing a hat on day 1 since I didn't want to be anxious about hair loss during treatment. I am just hoping to end the process with a shorter regrowth period.
Sending best wishes to you all.0 -
I have read her before that some ladies use dry shampoo. Can anyone recommend a dry shampoo to avoid washing too often? Thanks
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radmonkey - I had the same question. Chemo on Wednesday should be washed on Saturday.
Did they give you Zofran in your premeds? Ask your oncologist for it and I was told it controlled nausea for 48 hours. It did work for me. In addition, I wore "seabands" on my wrists for 1 week after chemo for nausea. They helped me and they work as pressure points on your wrist.
Also, take Claritin for bone and muscle aches from Neulasta. I ended up taking it every day now until I'm all done with chemo treatments. I hardly had any pain the 2nd treatment of taxotere and cytoxan.
Good luck and I have to stop to change my cap on the way too. I put a chair in the car and stopped at a parking lot, did my change, and came home to do the rest. The folding chair did help.
Good luck and I wash my hair 3 times a week and have done well with little shedding.
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Pam! Thank you for the advice. How to do you wash your hair if you can't massage the shampoo or lather into the root of your hairs? I'm going to try the spray bottle but it doesn't seem to get all the grease out. Seriously, my hair is so greasy. I've never gone 5 days without washing my hair!!
I feel so much better today. Just a few bouts of nausea. I walked 2 miles with my sister and had a ginger lemon apple drink afterwards. No bone pain.
Lisa radmonkey.
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