Cold Caps Users Past and Present, to Save Hair
Comments
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Hi all. I too have had major shedding around the sides and nape and have only had 1 treatment. I am almost bald all along the temples and ears and if I even touch it, it falls out. I am going to try the tip someone said about getting the sides colder and tighter. The hair everywhere else is incredibly strong so I do think the caps are working I just need to figure out the sides and temples real quick....any other suggestions?
By the way, I have read all your posts and you are inspirations to those of us just starting this journey.
Chris
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You guys are wonderful support. Thanks to all for input and advice. I'm feeling so much better now that I have a plan and have been preparing. I will be using PCCs with dry ice as I cannot find any MO in my area with a freezer - at least I have the support of my Onc. I don't know why Orange County CA is behind. Frank Fronda gave me the name of a woman who has been helping women for a year with their PCCs. She is going to help me, so that really takes the stress out of it all! I am incredibly thankful to have her by my side along with my other helper - my DH.
Michcon: Your pictures are awesome. Wow! Proof right in front of our eyes!
Lynn: You look awesome as well. My hair is very similar to yours in terms of texture and volume. I know I will be on the ledge as you were. I have been reading all the old threads and am now on page 50. Seeing your pictures has given me much hope. Thank you for posting. Incidentally are you sprouting new hairs?
Mdg: Thanks for the tips of lattisse. I have some that I used a while ago, but just gave up as it made my eyes itch. It will now be very important to me in my regimen. I'll have to mark my calendar when to start.
I never thought I'd have to think about mascara brands and make up for that matter. Looks like it is prudent to switch to organic brands. I will really miss Blinc mascara. It has ammonium , probably not good.
I have a question regarding nails..... I have noticed some women paint their nails black. Is there a reason for this? Do the nails dry out with chemo, causing them to lift or is it something else? I do plan on icing using frozen peas as I heard this is best. Do you only do this while on taxotere?
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Chris: I just doubled up my velcros and they seem to be working. My biggest 'shed' was after TX#1, #2 was greatly reduced and hoping #3 (this week) is even less. Seems the time around Day 18 after treatments is where the shedding starts.
I'm playing with the caps now so that I can have them right on Thursday.
Arlene
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Thanks Arlene. My next TX is tomorrow and I will work on making the straps tighter. I was so worried about the nape that I may have pulled the caps too far back.
Chris
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Good luck tomorrow Chris! Keep us posted. You are just one behind me.
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Regarding the caps and velcro - this is what we did for my large head. This may not work for everyone!
#1 - Start with the first strap set at the bottom edge of the back side of the cap. Wrap the two straps around to the front, making sure each side covers the edges of the cap between each ear and the eye area. Fasten the ends about 3" above the eyebrows. This will allow for plenty of room for the eyebrow strap. If the strap is set too low, it will cause the eyebrow strap to push down on the nose.
#2 - Start the second strap just above the first one on the back side of the cap. Wrap both ends around the head so they fasten in about the same location as the first strap.
#3 - Third velcro strap started on the top of the head. Wrap both ends around the back side of the head and fasten on top of the first strap.
#4 Eyebrow strap - Add a piece of moleskin on the bridge of your nose. Place the strap over the eyebrows and above the eyes.
#5 OPTIONAL The last strap I put on was a separate eyebrow strap on the nape of my neck. We tried to put it so the gel was at the bottom of the back of the cap to try and keep my hair at the top of my neck (it worked!).
This is for larger sized heads like mine. One of my friends is in the middle of her chemo and has a smaller head. She did not need the third strap and also did not use the second eyebrow strap. I hope this helps!
Annie
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Annie thank you so much!!!!! I think I also have a big head....I have lost so much around the ears and temples that I need to save what little is left!
Arlene, good luck Thursday...I will be thinking about you as I go in for fluids that day. I got so sick last time that this time I am getting fluids for 4 days after to help with side efffects.
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Ladies....my DH did my caps for me. He's out of town but when he calls tonight I will ask him how tight he did the straps that go around the head. I used 2 straps around the back to front on each cap. I can tell you that when he put those straps on it really tightened things up and it got colder. I will ask if he overlapped them or how tight they really were as I could not see them. I also massaged my caps every few minutes to make sure the gel was all over. I also moved my hair part every time we changed a cap. I had zero bald spots and zero frost bite either. My DH was a PCC rock star....my photo is the proof! I will let you know what the "PCC expert" says....lol!
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i am thinking about protein intake while under going chemo and wearing cold caps. I know that Frank Fronda mentioned that carnivores fare better than herbivores while undergoing cold cap therapy. My question is to all you ladies who used cold caps, what did you eat?
Since my dx I have watched my intake of animal products, specifically chicken and beef, i practically avoid them now. I am thinking of drinking a protein shake while on chemo, but i need to make sure im ingesting adequate protein. Dont know if I will be able to obtain enough from rice/beans and eggs. How did you incorporate protein into your diet?0 -
I used Latisse throughout. On lashes and brows. No mascara or other makeup. Lost about 1/2 my lashes and brows 8 weeks out, not during. By the time I decided whether or not I should worry they began to grow back in. Now I am wondering if they are coming in a different color.
As for diet I lost weight during chemo. Eggs by default ended up being my main source of protein and I did fine. My acupuncturist was the one who suggested eggs. Food and I, during treatment was dicey. We switched to mostly organics and no sugar after my diagnosis...
Everyone posting your pictures you look great! It is uplifting to see your smiling faces....
Lmflynn, you are 5 weeks farther out than I. Do you still think you are shedding a bit? I like the hair color you chose.0 -
debrox~ I am sprouting... I can only tell on my hairline....and sideburn area, but sure I am because like a chia pet everywhere else
Mdg~ I went out and bought the organic mascara, will try it tomorrow!
Sashette, I am still shedding... Most days not but then it feels like a lot....I am pretty much a vegetarian..so I wonder about that. I did so well on chemo, really no bad side effects...but I'm still shedding ... I think I sort of figured I wouldn't shed at all after chemo. At least for a while....my hair feels good...but now having anxiety about hairdresser appointment tomorrow!0 -
Annie: Thanks for the help. I'll try that - my head isn't big but the caps don't seem tight enough.
Quill: Sorry to hear you got so sick that you need fluids but sure hope they help.
Debrox: I understand that protein is really important during chemo. The nutritionist at our center suggested that I drink Carnation Instant Breakfast each day so I've been doing that because I am just NOT a good meat eater. I try to eat an egg for breakfast occasionally but haven't been doing it daily. I also try to get a can of tuna once a week. Fish is great protein but there are downsides to fish too. Beans and rice are really good for you and have a good amount of protein as well as some of the good electrolytes that the chemo zaps.
Have a good one everyone! SUCH a great site!
Arlene
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DebRox: Nutrition is extremely important in all of this. A few pages back I posted the title of a great book (written by my chemo nurses) which is well-written and takes you through every possible step and SE of chemo and how to manage it. The nutrition info is outstanding.
The first few days post-TC treatment are the recovery phase. Your gut lining is destroyed by chemo, so baby yourself, literally. Eat little bits as you can tolerate, but try to keep your nutrition balanced. LOTS of fluids: 1 oz water for every pound you weigh (really helps detox), but make sure you get a balance of sodium fluids (i.e. broth), potassium (apple juice; no citrus during chemo)/other (for me: vernor's or ginger ale, jello). No caffeine, no acids, no tomato/tomato juice, no fried food, no spices, no uncooked fruits or veggies (skin fruits like bananas are okay), no raw/undercooked fish or meat. My diet was: chicken breast, eggs, oatmeal, cottage cheese, bland cheese (no moldy cheese like blue cheese), toast, crackers, rice, carrots, broccoli, peas, beans, quinoa (delicious high-protein grain!), apples, bananas, dates, fluids.
A special shout-out to quinoa: I discovered this amazing grain during chemo. It's very high protein, and you can cook it in broth or water and flavor it the way you'd flavor cous cous or orzo. My favorite way to cook it is in part water/part apple juice, with some dried cherries, fennel seeds, and pine nuts. It's absolutely delicious, low-calorie, fat-free, and high-protein.
After three days, you are getting stronger, but still manage your nutrition. The third week of a TC@3 treatment is relatively "normal" but the two times I strayed from diet -- a raw strawberry on some strawberry shortcake at a picnic, and some bbq -- I paid for dearly: the only two days I felt sick during chemo, and it was totally preventable! Sheesh!
Last, if you've got a bucket of meds 'just in case' like I did, don't hesitate to use them. There is absolutely no reason to suffer whatsoever! If you feel a little queasy, pop a compazine -- that's what it's for. Works like a charm. If you have diarrhea or constipation, use the OTC meds, they work. But mostly, just realize that there is a very large menu of SEs, but it's only a menu. You won't get everything, just like you wouldn't order everything on a menu at a restaurant. You'll probably got a couple SEs, and in varying degrees, but only short-term and very likely easy to resolve within a day's time if not the hour. I had an admittedly easy time of SEs -- very little -- but I also followed my nurses' advice to the letter and found it helpful. And, if I felt a little off (tummy, gut), I acted immediately to knock it out.
By the time it was all over, I'd only taken about 5 compazine tablets, a couple of tylenol, and a box of claritin -- I had wicked hayfever and it was harder to manage than chemo. When I moved to my new house, I still had that bucket of unused meds.
Hope this helps! Remember, you are feeling great today, so enjoy it. Try not to spend a single second worrying about whether or not you'll have any bad days in all this. Enjoy every single day you feel good and make the most of it. On my very worst day of chemo, I felt better than 90% of normal! And most days, I felt 101% :-)
A friend of mine (who founded a fantastic organization called Planet Cancer, now affiliated with the Lance Armstrong Foundation) just contacted me with a PCC referral. And a year ago I was seeking her advice! Amazing what difference a year can make. You too will do great, and you'll be able to pass it on to the women who, unfortunately, will follow us in this journey.
xoxoxo to all
Susan
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A friend just sent this, and it resonated with me so I thought I'd share it here. "We travel this road together, peeling off one by one. That is what life is made of, a journey with a known destination. Which is why you have to remember, while keeping your eyes on the prize, that the prize is not the individual destination, never ever. The prize is the space between and what's in it." Susan0
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Great one Susan. Makes you think regardless of your situation in life!
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Susan~ So agree....thanks for sharing that message.
Ladies~ Tomorrow is 17 weeks PFC....and today I got my hair done!!! Highlighted and cut... it feels and looks so much better. My hairdresser was so amazed....she had another client that she told about the Penguin Cold Caps, she chose not to use them and my hairdresser cut and then shaved her head... she said to me -- your hair is a miracle! Anyway - she also told me I have about 1 inch of growth all over -- especially at the nape of my neck.. but she also pulled up a few everywhere all over my head.. who would have thought. I'm so excited that the color and cut seemd to do no damage or cause any shedding...
Happy Day!
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There is a lot of discussion on what to eat going on. I think you should eat what you can and what sounds good. Any food is better than none and with screwed up taste buds you have to do what you can to eat. Since salt was the first taste to go I, of course, craved salt. Things like a McDonald's mini meal went down (and stayed down.) Not a great choice nutritionally, but it gave me energy to move around and that alone helped a lot. So, do the best you can and know that when your taste buds return, you will crave all the great dark greens and foods that are good for you. (Love the David Servan-Schreiber YouTube and book suggestions to help fight the cancer nutritionally)
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LMFlynn: That's great! I am so nervous about the thought of coloring at some point. I have the amonia free/peroxide free color kit on stand by for when the shedding stops......... I bet you look gorgeous girl!!!
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Lmflynn oh it must feel like heaven!, I am happy for you. My 6 month mark is approx Sept 1..oh the joy of color and a cut.
My diagnosis has made me extremely conscious of nutrition and food. I added wheatgrass shots to my daily routine. With that said, I agree with Julia1969. My acupuncturist would gently scold me and say chemo is no time to lose weight, eat what you can even if it is not 'perfect food'. All my Drs said same thing. While they preferred lots of veggies and low to no sugar in diet, they emphasized during chemo eat what u can...
A note re side effects. They come and hopefully they all go. One of the ones that concerned me most after I got it was nueropathy. So stock up on the glutamine powder and ala caps, those were the supplements suggested in Franks material. I did experience nueropathy but moved through it. The Dr was surprised given the severity how quickly it was resolving... I think it was due to the supplements.
I am losing 2 toenails despite icing my toes and keeping polish on them. I wore socks on my feet with the frozen peas on top of the socks. My hands went directly in iced gloves - no problems with fingernails. If I had to do it over I would not wear the socks, Brrrrrrrr0 -
Lmflynn: thanks for letting us know about highlighting your hair. Mine, too, is fine and long. I've highlighted my hair for 30 years and so hard to just ignore the dark roots. I'm 4 weeks PFC and have been wondering how long to wait to highlight. Did you let them shampoo your hair and comb out tangles? I'm still gently massaging in diluted shampoo and very slowly and gently combing out tangles. I have 95+% of my hair and so grateful for PCC!
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howard - you kept 95% of your hair???? that's amazing. send tips, please!!
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Howard: That is amazing - 95%. I've lost 50% of mine but it is still hanging on.
Does anyone know if it is ok to wash the day before chemo? I just thought about that since my #3 is tomorrow and it is hair washing night. I so dislike hair washing night.
Arlene
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Hey Arlene - hang in there, you are going to be done soon! I can not speak for EGs, but for CC, we are supposed to wash three days prior to chemo and wait at least three days after to wash. At this point, given some of the challenges that you have encountered, I would skip the washing tonight. Grease is good!
I will be thinking of you tomorrow!
Annie
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Thanks Annie. I happened to remember for the EGs they said 4 days so I will definitely wait. Plus I so hate washing now....the bitter cold and the shedding too is bad during shampooing.
Arlene
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Arlene: The grease/oil will help conduct the cold to the scalp. Don't wash your hair the day before.
I havent started my chemo yet. In 10 days. But just chiming in.
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Question to everyone: What did you use on your toes/finger nails to prevent neuropathy? I am trying to figure out what is best to use.
At this time I do not know if my MO office has an ice machine. I am looking at my options, a few bags of peas, they are pliable and wont leak, but maybe wont stay cold long enough. Ziploc baggies filled with ice placed into wool socks. I am sure they will need to be changed at least once. What works best? And do you only ice 15 minutes prior to begin, during and 15 min post taxotere?
Thanks again everyone.
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Thanks everyone.
Debrox: I got the frozen peas from CVS (suggested by Susan) and put them on the dry ice and during the taxotere, I put them in socks and stick my feet in. I'm also taking a BComplex which is supposed to help too. Good luck with #1 and remember hydrate, hydrate, hydrate.
Arlene
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You asked for tips: I did everything Frank said. Washed only once/ week. No wash 3 days before or after chemo. Diluted shampoo. No blow dry or hair spray. Did start putting some gel on since my hair is so fine, but not near scalp. Cccccold water when washing hair. My husband made sure caps were -32 C and we used 3 straps. Two around edge of cap, and close to the edge. And tight. The other strap under chin and over the top to hold top close to head. Massaged the gel when wearing during chemo for a few seconds every 10 minutes. Combed with wide tooth comb only. No brush. No pulling on hair with clips. Mostly hair bands and/or scrunchy holding pony tail.
Most important was cold enough and getting cap on tight with straps holding cap down tight around all the edges. And prayer and finding encouragement in the Scriptures!
We're telling everyone about PCC and tomorrow night will meet a girl about to start chemo with PCC at her house and teach her support group how to do it and let them use thermometer. Tomorrow afternoon I'm meeting with a mother/daughter about to order Cold caps and explain how it works and loan them our coolers. Also been asked by a neurosurgeon at my church to come speak to the nurse who teaches the chemo class at a hospital. Word is getting out about cold caps and I'm so glad to share the news. I learned about PCC from Good Morning America show about 6 weeks before my diagnosis. Still thanking God for His mercy in bringing it to our attention!
Have appreciated so many of you sharing advice and walking with me through this. This discussion board has made me feel like we're doing this together.0 -
Hi DebRox I never heard if icing for neuropathy. But I take L Carnitine & L Glutamine along with B6& B12. I do Ice my fingers and toes for Nail issues. I haven't had any real issues with it yet and I am just out of TX 3. It was my biggest worry other than my hair.
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Hooray NMoss, you are 1/2 way through! Hope the Emend works for you.
Several on here are icing hands and toes to avoid Neuropathy....I'm doing it because it sure can't hurt. The nurses have never heard of it but what's a little more cold. Actually the cold for the hands and feet is worse than the caps. Speaking of which, how are yours doing? I'm still losing but not nearly as bad as after #1.
Arlene
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