Cold Caps Users Past and Present, to Save Hair
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Thanks for the encouragement ladies and the advice. Today was my second treatment and I asked for pain meds because the pain from the Caps was so awful. So I was given Ativan and dilaudid. It definitely did the trick but now I'm thinking that since I couldn't feel the pain are the really doing their job. Totally ridiculous I know but this is what this whole ordeal is turning me into, a big What If'er. Craziness!!
Kazzi I'm so glad you are using the caps too. My MO swears by them!
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All new cappers, do not get discouraged. I had 6 rounds of TCH&P although I must have lost 50 to 60% of my hair no one can who did not know me would know. I am 8 weeks PFC and have had my share of thinking I would be the one this would not work for, even while I continued to shed after treatment ended. sometimes ending up hysterical. But I can say that in March if I pulled my hair back I was very thin close to bald over my ears, now I can wear my hair back in a very small pony and other than grey I have new growth in those areas, so much so that I dont have a bald area at all. I am still very nervous about continuing to shed for another month or so and know that I will have to cut my hair which is only shoulder length right now because it is very thin across the bottom, but that is so much better than starting out with no hair at all.
My plan is in one month to use a good vegetable dye, probably darker than I would normally wear and cut it shorter than I would normally wear, but I am so grateful for cold caps that I have that option. It is amazing how fast it really does go, everytime I got down and hysterical my husband would tell me to stop looking at the whole picture and just get through each treatment one at a time and before I knew it it would be over. And they finally were.
Good luck to everyone.
On an added note: I still have eyebrows and eyelashes - very thin, but there I am hoping I am out of the woods as far as total loss. Am I??????
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I lost lashes around 6-7 weeks PFC. My brows thinned a lot but I never lost them all. I just did not touch them at all or use a towel near them when I washed my face. I just avoided them. I only had to connect the dots with make up on my brows. I lost about half of them...but make up did the trick. My lashes grew in quick. I did use latisse. I just wore a lot of eyeliner when they fell out and my glasses and within about 2 weeks I had shorter lashes back. Soon they were long and full again.0 -
I never lost all of my brows either, but they did thin quite a bit. My lashes were pretty much all out around 8 weeks, but I think it only took about a month before they were long enough for mascara and now it has been about 2 months since they all fell out and they are back to my normal length! Hopefully yours will stay put!
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One week past my fourth ac treatment and I haven't experienced much shedding, I've used the caps 5 1/2 - 6 hours after treatment and use them at home a couple times a week. Wonder if this makes a difference wanted to share some of my experience if anyone else is on the same regimen
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Joined: May 2014Posts: 1
Katonthemat1 wrote:
Hi I am a recently single mother of 5 kids, 3 of which I adopted through NJ foster care. My 6 yr old son has fetal alcohol syndrome disorder which is difficult to explain and understand without researching quite extensively. Long story short, his aggressive behaviors are extremely increased by change/instability. My diagnosis has been tough on him during 13 day hospital stay (long due to infection acquired during surgery) he was suspended from bus, lunch and recess. As per 1st onc advice I began wearing scarves and hats around house to prepare him and was met with a violent reaction by him. Changed dr and 1st appt at MSK in Basking RidgeNJ on 6/5. Anyone know of support groups in area that may help me with caps?
Thank you!
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Kat - I participate on a thread for our region - NJ I expect they can direct you to support groups. I inquired about therapists in our area and received numerous referrals from the helpful women. I am not aware of any support groups for capping. If you're looking for assistance with managing the caps and friends and family are not available, you can hire a professional technician who will manage it for you. The Cancer Institute at Robert Wood Johnson, Hamilton – Hamilton, NJ has a biometric freezer that may make the job easier for you but you'd need to travel to Central NJ for chemo.
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I am so sorry for your diagnosis, and for the troubles you are going through.
I do understand somewhat about fetal alcohol syndrome and knew someone who adopted a child from Russia with it. In their case the child was not violent, but she was developmentally disabled, smaller than her classmates and had difficulties in school and socially, As she was an only child, both parents were able to focus a large amount of attention on her to help her as she grew up.
You have your hands full, to say the least. Do you have family or friends who might be able to help in any way as you go through treatment? This is not the time to be shy about asking, because you will need help. Support groups probably will be good emotionally, but you are going to need practical help. If you already have a cleaning woman, that would be a good start as she could also do laundry for you, and perhaps be willing to pick up groceries or even cook some basic comfort food meals.
If you don't have one, you are going to need someone, or many someones, to help with the kids when you are not up to doing so, and to do the cleaning, laundry, homework help, making food, etc. while you are going through chemo, which can be very debilitating. There were days after each treatment when I could do no more than sit on a couch wrapped in a quilt. Thankfully my husband took care of me.
Turn to every resource you can think of, tell the school frankly what you are going through and ask it for every type of help it can give to each of your children. Let it know what your kids are going through, because they all will be affected to some extent as their mother is ill. Find out if special counseling, homework help, after school activities to keep them occupied, etc. might be available. Speak to its social worker and find out what resources might be available for you in your community. If you belong to a religious group, you might turn to it to ask for support. Perhaps it has a volunteer group that would help by occassionally doing your grocery shopping when you need it, bringing by cooked meals or stopping by to do laundry. Some do that.
Also, do your best to heavily stock up on things you regularly need before you begin chemo, such as paper towels, toilet paper, napkins, kleenex, etc, pet food (if needed), detergent, dish soap, bath soap, shampoo, toothpaste, non-perishable foods (rice, pastas, pasta sauces,canned soups, veggies and fruits) , etc. so that basically all you will need to shop for during chemo will be fresh items, veggies, fruits, meat, eggs, milk, etc. Your grocery list will be shorter, but more importantly, what you or your helpers will have to lug home will be lighter and less. I found that to be enormously helpful.
I do not know of any cold cap support groups. The caps are effective with many chemos, though not so much with ACT. They do take quite an effort to use. They are also expensive as usually they must be rented, although some brands can be bought. My rental from Penguin Cold Caps cost about $1500, plus shipping. Then there are all of the items that will be needed, dry ice, coolers, special thermometers, etc., plus at least one helper who can change them for you, either volunteer or paid.
I was told by my surgeon at Memorial Sloan Kettering in Manhattan that it will allow the caps now - it wouldn't two years ago, but I am not sure how supportive MSK will be. New York Hospital's Weill Cornell Breast Center in NYC, where I went for chemo in order to be able to use cold caps, is very supportive and also has a medical freezer just for the caps to be stored in between treatments, but the caps still have to be rented or bought in order to use them, and shipped there. They are not supplied.
Good luck, whatever you decide to do!
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I strongly agree with Hortense that this is not a time to be shy about asking for help. I never ask for such big favors but when I did I received very supportive and enthusiastic assistance. Another resource may be the American Cancer Society. I remember receiving a call from them to see what I needed. They reviewed a list of services and programs. They may be worth a call. Additionally, ask the social worker at your center for help.
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Research, research, research. There is a lot of help out there both on local, state, and national levels. I was able to get my cold caps funded through the CCAP (cold caps assistance project). I also got a TON of meds and part of the cost paid for when I did an egg retrieval a few weeks ago.Oncology social workers are familiar with help in your area, so I would strongly suggest speaking with them. Good luck!
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K, did you do anything special to keep your eyebrows and eye lashes - I saw someone post they wore ice over the eyebrows?
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I went to dinner with friends tonight that I haven't seen since my diagnosis. One of the first things they asked me was how did I still have my hair! It made me feel so good telling them about the caps and the success I'm having with them. I'm on day 31 and have had quite a bit of shedding but still have full coverage! I still get nervous just about everyday that it's going to fall out but tonight definitely gave me more confidence. Just wanted to share:)
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Hey Ladies! Just wanted to share a pic of my hair - So far I Did 4 A/C treatments and now have 4 Taxotere to go, so far the caps have been great, so thankful for them. If anyone has any questions I will be more than happy to help.
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Dlove - your hair looks amazing!!!!!0 -
MDG- thank you so much. Truly means a lot. My Taxotere starts Monday.! Kind of nervous but praying for the best.
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Dlove - hair does look great! So glad to see treatment is working.
I have 3 AC behind me but continue to shed everyday. I can tell I've thinned and am not confident it'll hold out for five more treatments for me But clearly the therapy works or I wouldn't still have hair.
It's hard to wear the caps outside of treatment. Something about them just immediately makes me feel ill, maybe association. I did notice more discomfort with treatment three than the first two.
Hope other current users are having an easier time of it than me with a bit more success!
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I start chemo on Monday!!! I'm so nervous about everything. I'm freaked out about using the cold caps correctly and also the restricted feeling I got when I practiced putting them on. Also, my infusion is going to be 375 minutes..... over 6 hours. That means I'll be wearing the caps for about 10 hours straight. UUGGHHHH.
Anyone have any last minute pointers for me? Dos and donts? Any advice at all? Anxiety is making me crazy right now.0 -
dlove, your hair looks awesome!!
Sunshine, I have to wear them for. 10+ hours as well. Are you doing herceptin and perjeta? I have herceptin last, because it counts towards after chemo time.
I use the moleskin on my forehead and add a pantyliner on top of that to keep the cold off my forehead. I also use a heating blanket. Bring a timer for cap changes, ask your nurses if you can take Advil or Tylenol, I do and I don't get headaches.
You'll do awesome!!
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thank you wyomama!
and Fl_sunshine my advice to you is drink LOTS of water!0 -
dlove, your hair looks fabulous - congratulations! I bet if you've done that well after AC, the Taxol part should be a breeze in comparison. Good luck!
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dancetrancer- Thank you- & I hope so! Last time I was in my doc was saying he might add carboplatin with the taxotere. I guess I'll find out tomorrow.
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dlove - It's true. Your hair is amazing. Congratulations!
Kazzy - I couldn't face using them outside of treatment days either.
Sunshine - be sure to change the parting of your hair several times throughout the treatment day so that the skin on any one parted area doesn't get too much cold exposure. Dress warmly, many layers to keep your core warm.
- As someone said, take Tylenol about 20 minutes before starting.
- Don't drink too much sugary stuff, I had a sugar overload and got sick the first time from toil much Gadorade and popsicles.
- Use plain ice to suck on during Taxotere instead of popsicles.
- Ice your nails during Taxotere - crushed ice in a ziploc bag works well, or use a bag of frozen peas. Toenails ought have cold on them too during Taxotere.
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Hi everyone,
I'm now nine weeks PFC. My hair stopped shedding early last week—and it really didn't shed too much at all after the last treatment. Worst shedding was days 16-21.
I was so sick of the color (or lack of color) that last Wednesday, I bought a box of Clairol Natural Instincts (in Cinnaberry) and colored my hair that night. It has no ammonia, but it does have peroxide. I put it on very gently and only kept it on for 10 minutes. I had no adverse reactions.
Coloring so soon after treatment is definitely a do-this-at-your-own-risk thing, but just wanted to let y'all know that I tried it and I'm happy that I did. I absolutely couldn't have waited the full six months that Penguin recommends.
And for anyone who's feeling like they're going to be the rare person for whom cold caps don't work: I was there in February and ready to send the caps back and ask for a refund. But, a nurse urged me to stick it out. I lost probably close to half of my (very thick) hair and wore a headband for several weeks to cover the areas where it thinned out the most. But I now have new growth covering all those spots. I washed my hair tonight and finally allowed myself to able to wrap the towel around my head—hadn't done that in more than four months! It felt like a small victory.
Hang in there. It's over before you know it.
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dlove--your hair looks fabulous!!
Sunshine--I am only 10 days past my first treatment. I was sooo nervous too. mdg is a definite help!! I had to keep them on for almost ten hours too. It's only for that first one, and honestly I was on so many drugs, that the time went by quickly. I stuck my iPod headphones into my ears and had my iPhone ready to play music, games, whatever, to pass the time. I soaked my toenails and finger nails but never chewed on ice and now my mouth is very sore. Will try for the next time though. Electric blanket is a must. I was quite comfortable though for some reason. Wasn't freezing cold. Honestly ten days ago seems so long ago. My only complaint is that my hair is curly and I look like a rat's nest except on wash days. Good Luck and keep us posted. Hang in there--you can do it.
mdg--quick question--I washed my hair on Friday, can I technically wash my hair today (Monday) or is the third day Tuesday? Ive been washing on the fourth day I think and I can't take the way my hair looks. What are your thoughts? No shedding really yet.
midege2--I use Brian Joseph's brow and lash gel. Hopefully it works, like I said I'm only ten days from my first treatment. Next to my daughters, my eyebrows are my most prized possession!! LOL
Mazie73--I cannot wait until I can get my hair dyed. I'm only at the beginning of treatment, but am dreaming of hair dye! Hope it goes quickly.
Gina
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Gina - I am not sure what I did.....I don't remember! Anyone else??? My best styling tip for frizzy wavy hair is to put an organic product on the longer parts of your wet hair. Then gently twist it around your finger and let it fall. Do this in sections all over your head and then don't touch it til it's dry. Mine usually dries in waves this way and it cuts down on the frizzy stuff. I have used Aveda's Be Curly.0 -
ciaogina, All of these comments are so helpful. I think I am starting my 4 treatments next week. I want to know if anyone had problems with getting the caps on properly. How did you learn to put them on? Video, in person, just read the instructions. Any other tips would be so appreciated. Thank you all! midge2
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Dlove72 you look awesome - thanks for posting your photo. You are an inspiration. Midge 2
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Gina- I based my 3 days on 72 hours later, so in my opinion, I think you could have washed your hair yesterday.
midge- my mom and I watched the video a few times and then we practiced with the caps out of the freezer at least 4 times, until she felt comfortable putting it on. We also read the instructions. I definitely recommend practicing and making sure your helper(s) can get the cap on tight and so that it is touching all of your scalp.
Dlove- Your hair looks so great! I am so happy that the caps are working for you with AC. Very promising!
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hortense, midge and Daye- thank you all so much! You sure know how to make me feel good!
I have a question for you ladies - did anyone ever TIE their hair back in a pony tail? Or anyone know of any good products for maintaining frizz?
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Hello Community! So I'm another person who is pretty happy with the caps. I
started TCHP over two months ago, and even though my hair has thinned a Lot, I still don't need a wig. People who know me well can see the
difference, but most people don't seem to notice. I'm using the Penguin
Cold Caps.My question: Have any of you tried going through your insurance companies for reimbursement? Any success stories on that front? I'm stuck at the point of finding a procedure code.
Dlove, your hair really does look amazing. It looks as though you had no thinning at all.
Midge, we started w/the videos, but went a little more aggressive. Even after they were on I could feel parts of my head that weren't getting contact with the cap, so we'd use the straps and also gel-bands to get those closer (even though the bands are intended for eyebrows we used them to help secure the caps instead). There was a lot of trial and error the night before my first chemo.
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