Cold Caps Users Past and Present, to Save Hair
Comments
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And, did any of you try to save your eyebrows by icing them? Is it worth it?
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Sissydi, I did not ice my brows, because I had heard it was very painful. I have lost a lot of my brows, but I just put eyeshadow over them, and they look fine.
As far as when to order, I would contact MSC and let them know when you will be needing them. Mine only took 3 or 4 days, (last July) but I think the caps are really catching on, and it could take longer. Since you rent them monthly, you don't want to get them too early either.
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TheLadyGrey, Yes, very sad that money does stop women from saving their own hair, while wigs are a covered expense. I have not filed with insurance yet. I also have Blue Cross and wish you the best!
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mdg I totally agree with you the oncoligists need to be reminded of mind and body.Its is tramatic to lose your hair I am 11 weeks post chemo didnt do the caps they dont have it here in canada if they did I would have chosen it.I know its only hair but every time you look in the mirror you feel like a cancer patient.Im sure it will take me @ least 2 years or more before my hair comes back like it was.I so miss my beautiful long hair 11 weeks post chemo and my hair is growing so slow.
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LadyGrey~
I am still waiting for some reimbursement from BCBS.
They had me send in 2 different invoices from Frank and the scrip. for a head prothesis.
I actually called last week and they said it is "still under review."
I will keep at it...
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I tried to get reimbursement from BCBS and was denied. When I used the argument that wigs are covered, I was told my coverage did not include wigs. That's surprising. I plan to call again and if my policy does not include wigs ("cranial prosthesis") then I don't have a case. If I learn that a wig would be covered, then Lady Grey, I'll join you in pestering them until reimbursement!
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does anybody have advice as to what kind of hair dye to use? I am 6 m months PFC (TC X 4) and my ha ir seems fine. I lost very little. It is shoulder length, and normally I do a two step process low lights all over to cover gray then blond highlights with foil. This seems like ta lot of chemicals. The hairdressers have all told me there is no way to do this without using chemicals. Is this too much dye at first? Thanks very much!
stage II, 1 cm tubular, 1/4 nodes, lumpectomy april 2011
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Hadle: I did highlights and lowlights at 4 months of post pcc and was fine. I had 5 plus haircuts before I took the plunge. I cut 4 maybe 5 off my long hair. I made sure hair was healthy. My colorist did a test with hair underneath and I waited a week before doing the whole head. My hair looks so much better!!! Good luck!
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Hadle~
I started with partial highlights and then went to full...
I was just very nervous. Good Luck to you!
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I finished chemo in May and am using Naturtint. Much less chemicals. I got it at Whole Foods or you can order in online. I also found an organic hair salon that uses organic products near where I live but I have been coloring my hair myself. Way cheaper. Naturtint covers well too. I just ordered 3 more boxes from Amazon and got free shipping.
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Hey all,
I see there are a lot of newbies to the blog. Welcome - you'll find lots of hard won knowledge here. I finished my TCHx 4 on January 11th. It's hard to estimate - but I believe I've kept about 85% of my hair. I know that being able to keep my hair has really made a difference in my tolerance for chemo. I've handled the SE very well - I've continued to work, work-out, and most importantly, I have managed to NOT let this keep me from being mommy to my 5 and 7 year old children. I believe that the mind/body connection is very strong and if you look "sick" - you feel sick. I hope that the medical community starts to take notice of this and put into practice a more holistic approach to treating cancer. I haven't tried to approach BC/BS about reimbursement for the caps - but if more of us do - we may get somewhere. So I'm going to do my part and will be on the phone with them tomorrow. I'll let you know how it goes.
My infusion center wasn't very supportive about the caps - they had seen a few women who had done it - when I asked about the results - they were very oh, yes, I guess it worked ok, but it seems like a lot of trouble to me. At my last infusion - my nurse actually asked me if it was worth it. I told her absolutely - if you care about how you look. I have to have another 13 infusions of Herceptin - which I will be doing at another infusion center. At least my oncologist has asked if I would act as a reference for other women who are facing hair loss. I told her unreservedly I will be a reference to help women - and I will be referring anyone who comes my way to this blog - which has been so helpful to me.
Stay strong - you can get through this!
Lucky
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p.s. I did lose a lot of brows - and since I'm only 11 days PFC, I may lose more - I use eye brow pencil and powder - and the results look ok.
My lashes look great - I've been using Latisse throughout and haven't noticed any loss - they're definitely longer.
Hair South of the border is nearly 100% gone - so I know that if I wasn't using the PCC - I would be quite bald.
I can't advise this because I still don't know how it's going to turn out - but I did color after my 3rd T/C/H - I went to an Aveda salon and got the grey covered with a very mild tint - no ammonia. Honestly, I don't believe that the shedding increased after that - and my hair looked considerably better for having the grey covered. Maybe I just got lucky - or maybe I'll see more shedding around day 20 PFC (9 days to go) - I've got my fingers crossed that I won't live to regret this. I'll keep you all posted.
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Hi All,
I haven't posted for a long time and I am months behind in the post -- but I wanted to share a little piece of good news. Some of the oldtimers may remember that in Fall 2010 I was getting the run around from Anthem Blue Cross when I tried to get my insurance reimbursement for the cold caps I encountered problems, but once I got the USC Benefits department involved I had my reimbursement check in 5 days. (Note: USC is self-insured but Anthem was the plan administrator). This year in the 2012 USC Network Medical Plan I found the following statement: The Plan covers external prosthetics when Medically Necessary, including:.....CRANIAL COLD CAPS!
It is small progress.
Colleen
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Hi all, just checking in. I've completed two rounds TC and still have all of my hair. I had a period of shedding days 21-26 post teatment 1, but it has stopped. My hair has grown very fast since chemo began, about 1.5 inches. It works!
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Colleen~
That is so awesome!
I will keep hounding BCBS about mine...
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Colleen...awesome news! Good for you!
Ckk - they do work....I have my hair after 4 TC's.
Anyone else interested in sharing photos of their success with cold caps? PM me if so. I have been blogging about PCC's and trying to make information available to those searching the internet. I am only writing about my experience but that is very helpful to others. PM if you care to help.
I hope you are all having a good hair day:)
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Still hoping to get recommendation for a safe vegetable dye to use during chemo and PCC (3 months after 1st chemo.) . Anyone have a recommendaton? I know that herbatint is mentioned r frequenslty but it appears that ingredients in herbatint do not appear to be safe: WATER, NONOXYNOL-6, NONOXYNOL-4, ETHANOLAMINE, PROPYLENE GLYCOL, EDTA, SODIUM METABISULFITE, WALNUT EXTRACT, RHUBARB EXTRACT, CINCHONA EXTRACT, P-PHENYLENEDIAMINE, RESORCINOL, O-AMINOPHENOL, M-AMINOPHENOL. GLYCOL DEVELOPER: WATER, GLYCOL, HYDROGEN PEROXIDE, ETIDRONIC ACID, EDTA. One of the ingredients, P-PHENYLENEDIAMINE, is a known carcinogen and has been rated 10 out of 10 on the toxicity to humans scale.
Cannot get response from Frank or PCC users support group.
I have had TCHx4 so far and have all my hair! 2 more treatmennts to go.
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They don't recommend coloring hair during chemo and usually suggest waiting several weeks post chemo to color. I used colormark to touch up my roots as needed during chemo.
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Apparently it is OK to use vegetable dye, per the PCC users support group, 3 months after first chemo treatment
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Is that after first chemo or 3 months after LAST chemo treatment?
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From an administrator post on the PCC forums:
"The date given for after the last chemo was referring to using normal hair dye or ammonia again. However vegetable dye can be used 3 months after the first chemo. Sorry for any confusion.
The information given here is a general guideline, however when Frank spoke to you he would have known more in depth information about your personal 'hair' situation. I can also confirm that I regularly liaise with Frank regarding information given on this site."
Link:http://penguin-cold-caps.proboards.com/index.cgi?board=prouctsupport&action=display&thread=23
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Hi everyone, I have one TC treatment under my belt & I'm starting to feel somewhat back to normal, (whatever that is). Does anyone have any experience with exercising/sweating during your treatments? I live in Florida & would like to try and start running again, but don't want compromise the PCC therapy with heavy scalp sweating. Any suggestions?
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jil1, Private message sebm9. She is a wealth of information.
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I exercised 5 days a week through all of chemo doing the ellipcital for an hour and some times weights. I had no issues with it. I exercised indoors at the health club mostly.
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I ran with a light weight nike cap. It was during summer so it was hot. I soaked my head before and after with cold water. I ran where there was water on the trail and would fill up my bottle and drench my head when I started to feel warm. I did not let my head get hot. I rinsed and condtioned my hair after with a wide tooth comb. I kept about 85% to 90% of my hair. I detoxed the chemo quiclky because I did alot of exercise. Good Luck!
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Jil1: I exercised throughout 4TC@3. I swam daily, hiked daily, lifted weights, golfed, and did martial arts. Hands down the sweatiest I got was during chemo hot flashes, but if you are in a hot climate keep your head as cool as you can. Remember, your body temp is 97, so if it's 97 degrees outside it's the same as your body temp. The cooler you can keep your scalp (i.e. cold rinse after exercising, or using a cap from the freezer on a heavy exercise day) will be beneficial.
Exercise is *KEY* to helping detox the chemo, which helps save the hair. Exercise also helps oxygenate your red blood cells which keeps you strong and your energy up. It's one of your very best tools in this battle! Keep it up as much as you can.
Cheers,
Susan
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I'm day 16 from my first treatment of TCx4 so getting nervous about what will be happening (or hopefully not happening soon). I notice it barely takes more than the touch of the tweezers for any eye brow hairs I normally tweeze to come right out. I didn't realize just how important excercising is to detox the chemo. I thought it was just to help keep the energy up so thank you Susan. Luckily we got an eliptical not long ago and it is coming in handy now. I definetely feel better on the days I do it.
I stopped by the place I get dry ice today to see about getting a discount as I was paying so much. As they don't do a big business of it the best they can do for me is the commercial rate, so a little bit of a savings for me. This place is only 10 minutes away where the larger places are an hour so will stick with them. Kind of like walking down the street to get milk and paying more when I could get in my car and drive to the large chain store and pay half the price.
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Marie3, Just baby that hair, and I'm sure it will hang in there.
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I had my 4th of 4 TCH 9 days ago. I have 95 per cent of my hair - some general shedding but I have no idea what to compare it to as who paid attention? I have two bald patches over my ears that are easily covered and good reminders of what would have been.
For me, it is hard to be so tired all the time, the hardest thing actually.
I exercised through the whole thing - not as religiously as some but on average at least 4 days a week, mostly walking.... fast.
When I feel crappy, which is a lot, 90 percent of the time I will force myself to exercise for an hour. At least half the time I STILL feel crappy - sometimes even worse. Sometimes it gets hairy. But I KNOW academically that I am taking time off my sentence. If I don't exercise, I will feel crappy longer than if I do. I'm thinking for every hour I spend on the elliptical trainer, I'm taking a day off of the mind bending fatigue on the other end. Come March, I'll be better off, even if I am sucking wind through February.
Here is my point: cold caps or no cold caps, hair or no. IT DOESN'T MATTER. Exercise is the best tool you have in your arsenal to save YOURSELF - forget the hair.
It is SO hard to stand up and make myself do it. Today I failed - I feel so wretched. Tomorrow I won't fail. Or if I do, the next day I won't.0 -
Ladygrey, good point. One of the reasons why we elected to save our hair is from the belief that we are treating the whole person, which includes our state of mind. Exercise is part of that, too. It's a long term investment in our well being, health, and being able to shrug off the effects of this toxic stuff sooner. Hang in there, better days are ahead.
I have been exercising all through chemo, and some days it's very tough. On the rough days, I just walk slowly on the treadmill or outside. Those first few minutes are awful, but by the end it's better, and I sleep better that night. On the days that I work up a sweat, I just rinse my hair in cold water.I've had some shedding, but no one would know.
I have a funny story re:cold caps. I went to my radiation planning appointment this week. The nurse asked me how chemo was going, and kept looking at my head. When I mentioned that I was using cold caps and kept my hair, she was shocked, and thought that I was wearing a wig that I had creatively dyed the roots grey to make it look authentic! lol. She was very excited with my success, and asked for the PCC web site info.
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