Cold Caps Users Past and Present, to Save Hair
Comments
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thanks for the tips. i have tried some headbands-- they work for the top, less so for the back. but i think i should try maybe some wider headbands, since they are what people are using. also--do toppik fibers have to be replaced with each shampooing?
i was on TC, 4 treatments.
i am wondering how long the intense shedding will last. what us your experience?0 -
aef....I shed for about 6 weeks after chemotherapy. I look at my pics the day of treatment four and 2 months later and it got noticeably thinner
I used infant hair clippies from Walmart and pulled top backwards to cover crown and leave sides down to cover thinning temples. I did that for a couple of months.
When sides were long enough I pulled them up with 2 clippies to add fullness to back.
Hair is curly and was frizzy for a long time. Joico reconstructor has helped recently
Good luck. It gets better but it took 8 to 9 months for me. Now 10 months PFC and I realize it will take another year to be back to normal.0 -
thanks for all your suggestions and encouragement. i am trying various hair arrangements-- (they are nor really styles....). i will look into the other hair treatments-- joico, toppic fibers. i'll report in when i think the shedding is noticeably lighter.0 -
So, tomorrow is the big day... Chemo #1. I sure hope these cold caps work as it sounds like it is going to be a circus tomorrow between me, my mom, my DH, 8 cold caps and 80lbs of dry ice! Fingers crossed!
Any last minute suggestions for me from the pros?
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OneTexasDay, GOOD LUCK to you tomorrow! My advice is to be sure to take something to ease the pain from the cold caps - I took 2 Extra Strength Tylenol and one Xanax before each treatment and only had to tough it out for about 10 minutes on the first cap - keep breathing deep and you'll get through that first one and then the time will fly by! I had no real side effects from chemo, so I also recommend staying as hydrated as possible - drink about a gallon of water every day, and the night after chemo, get up a couple of times during the night and drink/pee. Take a good probiotic to keep your gut healthy, and exercise as you can- even walking a few minutes a day will help. the worst for me was that I'd lose my taste about a week after each round and it became hard to find foods that were appealing. Other than that, it was all really tolerable and I never had any nausea or other major issues. And keeping my hair certainly helped my psyche and feeling normal through the process. I'll be thinking of you tomorrow - you've got this!0 -
Texas, you'll probably find that you are so distracted by getting the cold caps right that you'll hardly pay attention to the actual infusion. That's a good thing. Like Hope, I had it relatively easy during chemo with none of the major nasty side affects. You can do this and it really will be over sooner than you think. Good Luck tomorrow
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You got this Texas! Your team is in place and you will be done and home before you know it!
Good luck tomorrow! Sending hugs and prayers!0 -
Texas, good luck tomorrow. I was so nervous my first chemo with the caps I was having panic attacks. I'd had chemo before, it wasn't that. I was nervous we wouldn't do it right, or we would be a spectacle, or the nurses wouldn't be supportive. It all worked out fine and it will for you too.
I'm 6 weeks PFC and I put the tiniest bit of non ammonia color on the really gray parts of my hair that show on my part and temples. I'm nervous but I think it will be fine. Says it washes out in 6 weeks, but since I only wash twice a week I think it might last longer. I need a haircut!0 -
I put some of that kind of color on in October. It was supposed to be an auburn like I usually use to help my natural redish brown along. It turned a purple-ish color and hasn't washed out a bit! Covered the gray and I have hair so I don't care!
I am almost 4 mos PFC and have a ton of new growth that is about 1 1/2 inches long now!0 -
Go Texas!!!! You got this girl!
Good luck.0 -
cold cold cold! But worried that some of the temp readings aren't cold enough.
I can so this but I can see my army of angels might need to be rethought for the next time. These two angels would do anything for me but I need my bossy boots, push me around, not worried about what people think angels.. Guess this will get easier for 2-6 when we get in a routine. So worried about the damn caps,barely blinked an eye when they hooked up the first drug.0 -
Congratulations on making it through your first day! Now, get some rest. I found it all quite tiring. The advice about keeping hydrated and getting up to pee is excellent, as is taking a high quality pro-biotic - as long as your doctor approves. I didn't take any, and never even thought about doing it, but I sure regretted that after developing the worst vaginal infection because my immune system was down. You definitely don't want that to happen. My OBGYN told me to start taking good pro-biotics immediately, which I did. Get the refrigerated kind, they are the most potent.0 -
onetexasday, and all others doing cold caps - at the advice of my local Penguin rep, I drank copious amounts of water all during treatment day. She said it would keep the chemo moving through and out of my system, rather than lingering and affecting my hair follicles. It got to the point where I would be going to the bathroom every half hour, right after each cap change, and I had to stop on my way home to pee. Whether the premise is true or not, I lost almost no hair because of chemo. I "second" and "third" the suggestion to drink lots of water!0 -
thanks everyone. I am so optimistic I am going to do well with the caps, and chemo in general for that matter, I am afraid of the emotional toll if I start losing lots of hair.
My ears did take the visual brunt of the damage at this early stage. So I am treating them with Arnica tonight and will try to find some if those little ear muffs that just go over your ears for Chemo #2
I'm still undecided on hair products and still take recommendations.0 -
.... And my mom and DH rallied once they got in the groove.
My biggest concern was that the first 2-3 caps weren't the -33 c I was instructed to hit, but we needed to get started as the winter storm was headed our way and the drug durations I was tild were less than the durations they wanted for a first chemo when they want to monitor reactions
I think we will continue to get better at this,,,, here's to hoping my locks stick around to give us that chance.0 -
OneTexas,
I use DermOrganics shampoo and conditioner available at Ulta.
Did you cover your ears with pantiliners? Perhaps go up a thickness if that didn't do the trick. I know it looks ridiculous but I just covered it with hair. I bought the earmuffs but they seemed impractical when I tried them on and I felt they covered a bit more of my hairline than I wanted.0 -
thank you so much for the advise. I had heard of the panty lines but drew the line when I felt like I was getting that 'look ' from my hubby. ... The one where 'it's official, she's finally lost it!'
I decided against it for chemo 1 as I needed to keep him on board. He rallied and did great. Assuming my hair is stating put by then, I think I'll try the liners for chemo 20 -
did you use the conditioner as well or wait until PfC? How did your hair fare on the cold caps? Thanks from a cc newbie.0 -
@ OneTexasDay...congrats on completing chemo #1. Definitely use the pantyliners. Yes it sounds crazy but it works. I am day 19 and so far my hair has stayed intact pretty well. I will be going in for chemo #2 on Monday. Then I will be 50% finished. How many treatments are you having? Also, make sure to flip you hair from side to side so that your scalp does not get frost bite. I think that happened to me and caused me dryness and flakes on my scalp which are now gone. Good luck.0 -
Texas, I used both shampoo and conditioner. If I hadn't used conditioner I would have pulled all my hair out in a tangled mess. I know the recommendation is to use it watered down but I used it full strength, but I was careful not to scrub too hard. I combed my hair before getting it wet then after I was finished washing. I'm 6 weeks PFC and I have a full head of hair. I did have shedding but it's not noticeable at all. I started with thick hair and it feels thinner to me and more manageable but no one would describe it as thin. Most of my shedding would occur with washing, so maybe it would have been different if I used less shampoo and conditioner. I just figured if the hair was loose its coming out.0 -
Marsha, we are the same age and I will be on same drugs at you. So, so, happy to hear of your good results...it gives me so much hope early this wintry AM and something to aspire to.
THANKS TO YOU ALL!!!!!!0 -
Hello ladies,
I got some excellent news today which I hope will be useful to everyone. My insurance (Horizon Blue Cross Blue Shield of NJ) sent me a check for 50% of my cold cap expenses!
I had to fight for it, make dozens of calls, and appeal, but in the end I got it. Here is a brief rundown of what you will need.- Your insurance needs to cover all or a portion of durable medical goods
- a letter of medical necessity from your MO. I printed out a couple of articles on the process for her to use because my doctor was unfamiliar with cold caps
- a prescription for a full cranial prosthesis
- your credit card bill
- an itemized invoice (Penguin will only forward this after the caps are returned and it can take a few weeks
- Keep copies of everything and always get the Reference number for any member services calls.
You may have some trouble getting the correct codes- I know I did. The doctor has a standard code for a prosthesis, but there also (I believe) needs to be a medical code from the company and of course neither Penguin or Medical Specialties of California, know what that is and can not provide it.
Don't get discouraged, and don't give up. I paid my premiums, and as far as I was concerned they were morally responsible for covering their half. Below is my appeal letter- minus my private info.
October 23, 2013
Horizon Blue Cross & Blue Shield
PO Box 317
Newark, NJ, 07101
From:
Tina Brown
To Whom It may Concern:
As instructed, I am forwarding my credit card statement, prescription, letter of medical necessity, claim details, and correspondence.
In May of 2013 I rented a cranial hair prosthesis device from Medical Specialties of California, UK Ltd. As explained in my letter of medical necessity, this was necessary to protect the scalp from chemotherapy induced alopecia.
There are no providers of that service included in my network as far as I am aware according to the Horizon website. Medical Specialties of California, UK Ltd.- the parent company of Penguin Cold Caps- is one of the very few providers of that device in the United States.
As stated, my credit card statement and invoice are included. My policy covers 50% of cost for durable medical goods rentals. I would like those funds reimbursed to me.
I would appreciate it if this matter could be reviewed ASAP. I have made approximately a dozen telephone calls regarding this matter since June 2013. I have complied with the instructions on the letter sent to me by Ms. Alexander dated July 19, 2013. I have been given varying accounts of why the claim has been held up and given differing accounts of required paperwork that needed to be submitted, all of which I complied with.
My contact information is above.
Sincerely,
Tina Brown
Good luck- I hope this helps someone else.0 -
and please share the above- I really feel like I can do some good by getting the word out.0 -
That is awesome tmb! Thank you for sharing. I just started chemo two weeks ago, but I will definitely save this for when I'm finished. I have BCBS as well, so hopefully I (and others!) can have the same success as you. Wigs are covered under my insurance, so the caps should be too!0 -
tmb - way to be persistent!!!! Great result!0 -
I also have BCBS. It would be awesome to get some of this $ back. Thanks for sharing.0 -
tmb173-That's great, your persistence paid off!!! I'm sure this will help others to follow. Thank you for sharing your success and instruction!0 -
tmb - so awesome! This will definitely help current and future cappers - YAY!!!0 -
tmb, that is great news. I'm tempted to go back and see if I can recover anything from my insurance company, although it's not Blue Cross.
For those asking about hair products, I did not use conditioner because I didn't want to be messing with my hair more than necessary. Instead, I used Kenra Daily Provision leave in spray after washing. It works really well to detangle hair.
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Texas, a lot of us found that the caps weren't quite cold enough at times. Here's what I did. Assuming you have the dry ice slabs inside of zip lock storage bags, take a cap out of its plastic container and lay it directly on the ice. It won't take long for the cap to get to the right temperature. When using storage bags, make sure you don't close the bag or it will explode.
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