Cold Caps Users Past and Present, to Save Hair
Comments
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jstan81963 I shipped mine back in coolers (we had been using disposable styrofoam coolers that were in cardboard boxes from the dry ice place. We shipped to separate boxes, four in each. I think the original box would be fine, though. I actually ordered a couple of replacement plastic cap boxes on Amazon for the ones that had broken. Ours broke because we travel by airplane to my infusions, so they break in our suitcase when we check it, I figured that wasn't PCC problem and the boxes were cheap. After I shipped them back I later had to do more chemo (in the middle of it now) so I had to reorder.
But they did arrive ok and I got my full deposit back last time.0 -
phaila - Keeping my fingers crossed that things slow down for both of us soon!! I completely agree that with every hair that falls this whole things just gets more and more depressing... I think you described it best a while back when you said your hair was like a veil on your head - definitely the way mine looks now! Hoping we get some normalcy back to our lives soon!
victoryak and runner - I so agree about the things people say sometimes! I have one friend that always talks about the "free boob job" I am getting. Um yeah, "free" - all gained at the expense of my self esteem, my sense of normalcy and living with a potentially life threatening disease - not to mention my $6500 insurance copay (the least painful part of the whole thing for me, lol) - but sure, free boob job that I didn't even want. I know people mean well but man they need to think before they speak sometimes or just say hey, I am sorry about what you are dealing with right now. If one more person tells me when life gives you lemons make lemonade, I may just punch them in the throat, lol. Okay, rant over from me
jstan - I packed the caps up in the same box they came in and just padded them with some extra packing paper. I saw my credit show up on my statement yesterday so they must have arrived back in one piece, lol. Never heard from Geralyn but not surprised, was very unimpressed with the penguin customer service although I am happy with what the caps did for me.
Dolly - your hair is still looking good! I didn't do FEC so not sure about shedding and regrowth with that regimen but hopefully someone will chime in that has experience with that. Never thought about olive oil for the dryness, I have been using Argan oil sometimes and a spray in conditioner as well but I bet the olive oil nourishes the hair really well!
Aimless - so glad you are enjoying the vacation!! And never feel bad about posting when you are down - that is one thing I love about this group of women, we all support each other through this. Hope you enjoy the rest of your time away!
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Dolly - you look amazing - not just your hair - but you don't look like you're going through the ravages of chemo - I'm definitely wearing it on my face (ok, age (58) and overweight don't help ) but seriously - good for you!!
Victoryak, Runner and Amyabs, Your posts have really resonated with me. Thinking about my friends and family thorugh this - definitely thins the herd for us. MOST of my friends have been amazing, and so many surprises from acquaintances who have stepped up. But then there are some "close" friends who have gone silent. (I guess we're their worst nightmares realized?). I love the "hope you're doing well" text messages. Yes, that's my hope too - but it's not been my reality. Seriously.
This vacation home has nothing but white furniture - I'm so nervous about using my Toppix - and staining the fancy furniture. (LOL). Oh well, I'll blame the cancer!! - and lose some of the deposit $$ - chalk it up to more of the hair-saving costs of cancer.
My cousin keeps reminding me that in this heat and humidity (east coast) NO ONE has good hair - and frankly looking around when I'm out in public, it's actually more true than not.
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Dolly you look fabulous not at all like chemo hair or face. Good for you , am on AC and Taxotere so a tougher chemo. I have one more round of AC to go
Phalia : really the same goes for you its hard for anyone to tell though I do know how each falling hair is a bit of a heartbreak.
Jstan : Congratulations big day last chemo what a relief , haven't yet figured the cold cap return out.
Just an aside to all those loosing hair post chemo , when I spoke to Frank Fonda of PCC he did say it's best not to have sunlight directly on hair follicles as they are still weak and one has to follow all rules 3 months PFC. Also said to continue taking silica for the 3 moths.
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Thanks folks,
I do feel pretty good so far. I am about to go for chemo 4. A lot can happen to hair in next 3 treatments, I am sure of it. However I note Positive that you say my chemo is less harsh, and I have been told this by my nurse. It is said to be used as a curative measure and 'belt and braces'. I had only tiny micromets in one lymph node and so maybe that's why the FEC is used and not anything more severe. Not that I am complaining.
My SEs have been pretty much non-existent too. Had a few bouts of vomiting but nothing else soooooooooooo far...haha I am always aware that I should never be too cocky and say this sort of thing, as chemo is likely to cut me down next time as punishment.
The hair thing is difficult. I am not used to not dying my hair, but have been using 'No more Grey'. It is a powder palette that you brush onto your gray bits. It is amazing and covers everything up so well and has no harsh chemicals in it.
Olive oil is fab for taming wirey dry and brittle hair. I sometimes massage it into scalp and leave for an hour too.
Thanks to everyone who says I don't look like someone on chemo, although on my June chemo forum, some of those ladies are positively blooming and looking gorgeous. I have been lucky enough to not have to go to work since May and won't be returning til Christmas. I think this has helped me greatly and given me time to look after just ME. I have been eating well, and lots of fruit and veg and water. I have gone totally organic too...even my salt and pepper are organic...no idea how that happens, but it did! I have cut out all alcohol too.
I am also keen to rest and get some exercise but mostly destress completely. I am convinced it was stress that led to this.
Dolly
PS Hope less hair falls tomorrow for everyone!!!!
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Dolly - thanks for the tips , never heard of the No More gray but will try. Honestly you look good in the last photo's with a touch of gray and am not saying this just to make you feel good.
Are the eyebrows penciled in or have they not fallen ?
Haven't managed to do the organic food bit during chemo but will definitely do post chemo. Right now its just what I can eat I do so.
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Aimless- I used Toppix just a couple of times for special occasions. I sleep on white silk pillowcases (as recommended to reduce friction) and it never got on them but I worried it would. You would probably be fine. I stopped using Toppix because I stopped caring if my bald spot showed. Now I have regrowth that covers pretty well. It's long enough to grab in between my fingers. The top of my head still looks weird but not as bad as it did.
Dolly- I think you look beautiful! I don't know anything about FEC. I know that different chemo regimens are popular depending on what part of the world you live in. Are you in England or another European country?
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Hey All,
I had asked a question a little earlier but didn't see a response back so thought I'd try again. Why are haircuts not recommended? I'm scheduled for one tomorrow.
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Never heard of a haircut not recommended. I got mine cut in week 3 to tidy it up
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Revnet, according to Penguin, the hair is accustomed to being a certain weight (determined by the length pre- chemo) and cutting it can weaken the follicles. I'm not sure I agree, but that's what the protocol says. However, Penguin does say a post-chemo gentle trim is acceptable ( like cutting off an inch or two). Just not a drastic cut, like chopping off 4 - 5 inches. I trimmed mine at around 2 weeks PFC and it looked so much better! Btw, my stylist said it shouldn't make any difference, but I only wanted a 2" trim so it didn't matter ☺
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Runner,
Thanks for your kind remarks and everyone else too for the lovely remarks about hair. I am in Scotland, UK. So FEC seems to be the chosen chemo here for stage 1. It is being used just to check that any wee leftovers are dealt with.
My hair is doing pretty good. Had my weekly hair wash today and hardly anything came out!!! This is very very good! But I do have still 3 more chemos to do. It is a chilling experience washing hair these days haha...gosh I used to wash hair so vigorously and use straighteners every single day. I am sooooo gentle with hair now. Cold capping is not a greatly enjoyable experience but it has certainly allowed me to go out and feel OK and to see family and nobody is any the wiser. This is so good.
My eyebrows are very very thin and so are pretty much being 'artificially put on'...but here is a fab video that will show you how it's done!
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today is my 10 th day pfc and I went to my hairdresser and cuted bangs a bit. I asked her if I should cut more. She said no. She likes the way my hair are. I feel much better instantly!
Still have a lot of swelling...:( I went to try accupancture for it and for night sweats to see if they can help. The guy wanted to stick a needle in my hair. I screamed "no"!!! not the hair.lol. I scared the hel out of him...
Any Taxol ladies? will my hair still fall off later on or this is it? am i out off the woods? So far of no more surprises I am very happy with result.
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hi ladies, I will be starting chemo in the week of Aug 8, and am considering cold caps. My treatment is yet to be determined, either FEC + D (3+3rounds) or AC+ taxol (4+12rounds). Any of u tried cold capping in any of the 2 treatments? And has the cold capping been successful? I'm thinking to get the electro gel cold caps from ice wrap.com, much more affordable..any body tried that? Other than the caps what do I need to bring to the hospital, Do I need to inform the hospital. How many caps would I need to purchase? Thank you! Any feedback would be appreciated
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Scarysadday, First of all, your username says it all. Many on this forum have used those chemo regimens (I did TC). Also, most seem to be renting the caps - I rented from Arctic Cold Caps, and referred to Rapunzel Project.com for my advice. Many (most) seemed to use Penguin Cold Caps. Many are very successful - many of us had significant hair loss - but wouldn't have done it any other way (26 days past final chemo - my hair is very thin, several bald spots, but enough to cover - and wait for regrowth). I used 8 caps. Dry Ice. 20 minutes cycles. Arctic provided me with everything I needed. (Cooler, gloves, thermometer, moleskin, etc.) THere are different recommendations regarding treatment of hair under the cap (wet/dry/plastic shower cap/hair net). Arctic adn Penguin provide significant training. Some hospitals (mine/ a major cancer center in Philadelphia) don't allow them - I changed hospitals. This forum is a huge resrouce and help. Read backwards - I know there is a lot to go thorugh - but you'll get a lot from even 20-30 pages. Sorry to welcome you to this "club."
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Scarysadday,
I am on FEC80 x 6. I have been cold capping for 9 weeks now and lots of hair still on head. My pics are a few messages above. The cold cap for me soooooooo far on FEC has definitely worked well. I hate doing the CC but it has saved my hair. I am so impressed with it. However over here in UK we use the Paxman machine. It is an iced cap that plugs into the wall and keeps head at a steady freezing temperature.
Hope this gives you some hope of the ice working!
Dolly
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the Paxman just got approved for use in the U.S. In December 2015. The closest one to me is a 10 hour drive away. I'm so jealous you get to use one! I think that has the potential to not have as much hair loss because the temperature remains constant. But, I guess you have to stay at the infusion center longer. I'm wondering how long it will take for it to really catch on here. Most people where I am have never even heard of cold capping so I imagine hospitals won't start buying them until patients turn down infusions centers in favor of ones that have it.
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Runner, if I am not misstaken, Cornell Hospital in NY is the only one in NY so far to have this machine.
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All our Paxman machines in Edinburgh are donated by cancer charity groups. I feel very lucky to be using it, even although I call it vile names every three weeks!!
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viktoryak, About your swelling, which I hope has already improved, are you doing low salt? Taking a diueretic? Eating foods that work as diuertics? Yes, steroids can cause water retention and swelling, and it is awful. Swollen feet are really hard in the summer when heat makes them swell anyway. And swollen belly .. just one more assault on your sense of self and body image. It stinks!
Icandoallthings, Good news only one more infusion, but. having to deal with 5 days of flu symptoms and a baby is really rough. Have you pressed your MO for something to minimize those symptoms. I know you can't rest, but maybe there is someone in your network who can come over and baby sit each day so you can take care of yourself for a couple of hours? This is the time for a friend or family person to provide you with a bit of hands on support.
Your meme about the spider vs. falling hair is so true, and funny. Thanks for sharing it.
Dear All,
I much prefer to write upbeat news and spread hope and cheer but...
I am 6 months post chemo and alas, still shedding. Did Penguin cold caps with one of their Cold Cap helpers by my side at all times. I use all the recommended hair products, wash my hair( which is long) only once a week, using a beaker to pour water over it, comb it with a hair pik, sleep with a silk hair bonnet on a satin pillowcase etc,etc,
All this says I did "everything right, followed all the guidelines" and my hair continues to shed! I have this "idea" that all the follicles are partially open waiting to release the strand of hair should I pull too hard. That all my hair would come tumbling out.
But, during and after chemo It did not all come out in clumps. I still look the same to the world. Which is what my goal was, so "it worked". I guess.
Have modified my hair style , which was to wear my hair up in a twist, to one that puts less strain on my poor little chemically assaulted follicles. And I use Toppik to cover the wide parts and scalp that peak through. So we adapt. We are great adapters.
Has anyone out there shed over 6 months? If so, did it ever stop?
When my shedding stops I plan to get some hair extensions to clip on to remain hair to cover the thinned out spots.
It is comforting that there are lots of products out there to help us look like the selves we know/knew?
Hugs, and good wishes to all for new hair growth, and soon.
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windward, I am sorry about your Hair shedding:(
I am still swollen! I took diuretic pills for 4 days one day appart as directed by my mo.Still swollen:( no much Sault intake either. I started accupancture , went 2 times . Going today 3rd time. so far no results yet. Maybe just a tinny bit less swollen. It is almost 2 weeks pfc. And swelling still here:( hope will not last too long.I can't wear skirt..since one leg is noticably wider then other and wear flip flops all the time.. Unless I Exersise and then I try to squeeze my poor feet in sneakers...
I really have no complaint about my hair this moment. Compare to what I read here they not bad. Thinner but there!!!
Besides swelling.. I am so exosted with night sweats. Its horrible! I wake up at night from sweat pouring like a shower..... What a f.k....when will it stop?? My MO recommended accupancture. It is what I do for swelling anyway. Lets see if it helps.......
Any one figured out how to deal with all these?
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Viktory,
What is causing this sweating? Is it Tamoxifen?
Dolly
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I finished chemo 13 days ago. So far I am only on Herceptin. I guess it is steroids effect that were given to me during weekly Taxol. It started after Taxol #10.... I had eco, sonogram of liver and dupler...
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Ah OK. I am dreading the horrid Tamoxifen! I hope you start to feel better soon. Do you sleep with a fan on?
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Windward - have you shed heavily this whole time or has it slowed down? As my husband reminded me, I have always been somewhat of a shedder, lol. I had thick hair prior to this chemo business and when I would wash and style I shed quite a bit. It was also not unusual to find hair on my coat, the couch...etc. My heavy shedding now though is like 200 or more hair per day - just piles and piles of it. Also, have you had regrowth during this time as well? I am seeing some regrowth starting so my hope is that even if I keep shedding some the regrowth will help fill in the super thin parts. I have no issue with getting a cute pixie cut at some point to even things out (I have short hair now so that isn't a huge leap for me) but I am wondering if that will even help.
Victoryak - so sorry the swelling is still so bad and you are dealing with the night sweats so much. I am on tamoxifen now and the nightly hot flashes are definitely annoying. I wake up several times every night feeling like I am on fire from the inside out. I did put a small fan on my dresser to blow directly on me in addition to the ceiling fan and that helps some but man, I am hoping my body eventually adjusts.
Scarysadday - I capped with Penguin and I did TCx3 and then one round of AC due to an issue with round three of TC. I am not certain if I was destined for this amount of shedding anyway, but I feel like for me the AC was much, much harsher. I shed through the three rounds of TC but I have lost more hair post the one round of AC than I did through the rest - significantly more, and it is still dropping. Not sure if I was destined to lose this much post chemo no matter what but with each of my TC rounds the shedding slowed at about day 32 and tapered to normal shortly after. I am 6 weeks out from the AC treatment and still shedding a lot. There are some women on here who have been very successful with that regimen but it definitely seems that more women struggle with capping with the AC -T combo. I am not sure on FEC as that wasn't one that was a possibility for me so I didn't research much on this thread about that one. Dolly seems to be having great results with FEC though!
There are no centers anywhere near me that have a paxman or dignicap system. My oncology office is looking into getting one but I was the first person they ever had use the cold caps so it will be interesting to see if they end up pursuing it or not.
Hope everyone has a good week!
Phaila - I am keeping my fingers crossed that this will be the week the shedding stops for us!!
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Amyabs,
Paxman is fabulous. I am so impressed with the results so far. I have been taking pics the whole way through my treatment and my hair is actually growing too. I have wispy wee bits coming in at my front.
I see this hair above as pretty thin, but other friends have said they have no idea that I am having hair difficulties or that I am on chemo. I think I was very lucky to be starting with a major bush of hair to begin with though. If I had had very fine hair to start with, I am not sure I'd still be cold capping.
I start chemo 4 on Friday. It will be interesting to see what happens after this. But in general I would have to say that I am losing maybe 20 separate hairs every two or three days. I am so surprised as I had visions of having a massive big Friar Tuck parting...and had many lovely scarves bought to conceal this. I have not worn any scarves yet. But as I say, this is only treatment 4 coming up. Lots can be lost in next 3 treatments. I have pretty much lost most of my eyebrows...although there is still enough enough to get by with.
I also do a Trump comb over to hide any wee thin bits that can be seen. Lots of tricks though can be used for hair loss. My best one is to wear my glasses on my head, like a hairband...and that pushes hair up and over any thinning bits. Also tie it back in ponytail.
So far, Paxman rules....even although it is like Japanese torture!
D
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Hi Viktoryak,
I sent you some information back channel,that may be of help with your swelling.
As for new growth, even while I shed, how do you tell?
I guess if I have to ask the question, I do not have any.
My shedding seemed to be slowing down, but today, having washed and air dried it, it is as shedding muchly.
Oh well. maybe tomorrow it will slow down for me and all of us!0 -
windward, thank you for information, but unfortunately my MO does not let me use any supplements
I am only allowed to use vitamin D.0 -
Hello all,
Happy to report that I completed my last round of chemo yesterday. I have used paxman scalp cooling. Still have a head full of hair except for a big bald spot on the top of the crown. Not a perfect result, however I am happy with what I could keep.
Now I wait again to see when the shedding stops and when I can get back to the 'new' normal!
This forum and you all ladies have been a wonderful help in getting me through this so far. Thank you
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Hi Amyabs, my hair is just kindof laughable still shedding like a bitch. Ha ha ha. Not really! It's almost passin troll mode into something even more terrifying. 😜 It's sooooooo dang depressing. I'm now 9 or 10 weeks pfc and I am also still swelling. It's only my feet/ankles and it's only when I walk far with no shoes. Like the pool or the beach. For reals all you swellers, buy suppression socks at Walmart. They work! They're hideous but they work. I'm also having sweats. On a very humid hike but not that hot yesterday, I was sweating buckets! Sweat was literally pouring out of my nose pores and I could feel my actual knee caps sweating. I don't think I've ever sweated from my knees before! So crazy 😳
Other then mild sweats I've had no side effects from tamoxifen and I've been on it for 1 month. Does our period stop right away from it? Mine has not started again.
On a serious side note, the only other person I know who has had bc just found out hers has spread and there's nothing they can do for her:( I'm devastated. Like how do you handle that? How are we supposed to talk about it? I'm just so sad because of what she's going through... I hate the world.
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Hi everyone. I'm around 10 weeks after my last chemo and I have swelling. I never had it in my legs- just my face and stomach. I have jowls that I didn't have before chemo so I hope it's fluid and not permanent. My hair is slowing down on the shedding. Hair wash days are the worst but I still think it's just catching up from the rest of the week. I have eyelash stubs coming in, and the top of my head is really filling in. I think it looks like I have a Brillo pad sitting on my head.
Phaila, I don't know what you say to someone who is stage 4. Because deep down, all of us know that could easily be any of us someday. I guess you say what you would want said to you.
I look back at the last 6 months and it's surreal.
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