Cold Caps Users Past and Present, to Save Hair
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Hi AnneDr: We are all here for you and you will do FINE. While I lost nearly 70% of my hair, I never went bald and never looked liked a cancer patient. Lost all my length but I'm good and at 4-1/2 months PFC, unless you knew me you'd never know I went through chemo and when it starts coming back in, it comes in so quickly. Hair a bit crazy as it comes back it....so wild and curly.
Good luck!
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Arlene, you scare me! My hair is arlready wild and crazy!! I usually blowdry it and flatiron but gave that up a couple weeks ago. People keep asking me if I got a perm!! Years ago, I used to have it professionally straightened because it is so frizzy. Lucklily there are great products out there now that help my curls look manageble. I know I wont be able to use my blowdryer and flatiron for quite a while so people will have to start getting used to seeing me with curly hair which is better than seeing me with no hair! Thanks for all your good wishes! Today's the day!
Anne
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Anne - my hair is the same way. I usually wear it blown staight and flat ironed....air dried it is frizzy and wavy. You can see my photos of my hair on my blog. It even looks shorter when I air dry because of it waving up so much. Now that I have lots of new growth that is about 1-1 1/2 inches all over it's hard to keep the shorter hairs from standing up. Oh well....I am glad to have them!
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Hi Ladies: I am 2 weeks post PCC. I am noticing that I am shedding a bit more these last few days. The new protocol for hair wash now is at least two times a week. The condition of my scalp is fine but I don't have a good system for hair washing. There is always a film on my scalp, but were not suppose to scrub the scalp and cold water doesn't clean as well as hot. How much shampoo do you use? How long do you massage scalp or do you skip that part?
Next question is for other runners: My feet blister so quickly, when does this SE go away? I used to able to kick soccer balls bare foot and wear high heels with out any discomfort.
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Soccergirl- we don't supposed to massage the scalp.
I am getting my Herceptin today. I never get any SE from it. I'm. 15 weeks PFC and using hair dryer on medium setting for my bangs.0 -
do you touch the scalp?
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Hi everyone! I'm new to this thread, and have been reading through the posts to try to find a website, where I could purchase a cold cap but didn't see one listed ... I just had a bmx (with TEs) and will be starting chemo soon ... losing my hair, along with both my breasts will be difficult ... so, could someone please tell me where to purchase the cold caps? Thank you!
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There is a series coming out on Lifetime about breast cancer. (Big star directors like Demi Moore and Jennifer Aniston) They are telling the stories of five women in five episodes. The series starts next week. They title is FIVE. I just added a comment on their message board about cold caps. How about everyone adding their stories as a part of theirs. Maybe one of the directors might see one of the comments. You never know.
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Soccergirl -It does not matter how much shampoo, it is more important to make sure that it is mild and diluted with water, shampoo the hair for as short a time as possible and rinse the hair thoroughly. When I had problems with my scalp Frank told me that I have to clean it because we need to get rid of the toxins. Since I had already lost 80% of my hair, I began to massage gently my scalp. I used 1 cap of Pure Results shampoo diluted with water and 2 drops of apple vinegar. After my 4th Taxol (of 12) I am happy to report that I am growing a lot of new hair now. Please keep in mind that I am on ACT (weekly).
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trinity927 - Welcome, I am sorry you have to join us but you are in good hands here:-) i know how you feel about losing both your breast AND your hair... this thread is WONDERFUL and the ladies here are so supportive. I will PM yu the contacts of Geralyn (whom i used) she is the Cold Caps representative based in Michigan.
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Julia1969 - I saw the ad for that movie "Five" Cant wait to watch it on monday!! Good idea to write on their wall.. will try to do that. Thanks.
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thanks ladies
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AnneDr: My hair is naturally very friizzy and crazy too so folks are really EDIT) NOT noticing it too much. Now, I ran into a friend today who had not seen me since I moved back to Florida from Nevada and he said to me...wow, you cut your hair off to deal with the desert climate. He had no idea that I had been through chemo and just thought I got a short haircut. Pretty cool!
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Hi trinity- Penguin Cold Caps has a website. You can find everything you need to order there...and the ladies on this site will help answer any questions!.....
soccer girl, would use your gentle shampoo and add the a little apple cider vinegar...it seems to help with the scalp....wish I had known thus much sooner.0 -
Anne - it may be too late for today's chemo but I secured the gold strap below my chin. I had to use moleskin under it to keep it from irritating my skin. Sorry I haven't been on in a few days so I missed your question until now.
Does anyone know what network FIVE will air on or what time? Thanks!
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Lmflynn: do you massage scalp when you wash ? I am not sure how much touching there should be.
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Soccergirl- when I shampoo, I touch my scalp gently with the tips of my fingers. I try not to do it that much.
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Soccergirl: When I was doing chemo and for months after, I never rubbed at all...I basically just put the diluted shampoo on my head and rinsed as best I could without rubbing. Tough getting the shampoo out! Just kept running the LOW pressure, COLD water over my scalp
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I did not massage my scalp really....gently patting it kind of. I gently rubbed the longer part of my hair between both hands (my hair is pretty long) to wash it. I never had any scalp issues.
Soccergirl: I workout daily and had no blister issues with feet. My skin did have major issues though...dry, bumpy and lots of rashes. That lasted from my 3rd chemo in April til mid July even though I finished chemo the first week of May.
Trinity: I sent you a PM with information. Glad you found us!!! You can do this!
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Hi everyone,
Here is my shampoo technique. Please note: I have always had a lot of hair and have not lost much of it during chemo. I think the amount of hair one loses may depend a lot on thickness and constitution of hair I did use sulfite free shampoo but put shampoo on full strength after wetting hair and head with very cold water. During chemo with TCH, I would pat the scalp and gently massage the longer hair not touching my scalp. I was careful not to pull on it. Now after chemo, I still wash with cold water but do more massage and wash scalp with fingertips a little ( since it is itchy). I use a cool hair dryer on low and have used a flat iron but not next to scalp.
Soccer Mom: I have had some burning but mostly numbness on bottom of my feet and it is still there. I am now 3 months PFC and still have same amount of numbness on bottom of my feet-chemo induced neuropathy,, sigh. I just started acupuncture to see if that will help and am going to start taking some other supplements as well. It does affect my balance so I hope it is not permanent. My advice to others:who are just starting cold caps- I did not ice my feet thru all the infusions because I did not know to do it. Started icing about the 4th infusion. . Perhaps if I had I would not have gotten this neuropathy. If you are using ice chests, you can put the cold packs for feet in the ice chests as well to keep them cold- just be careful they are not too cold so you don't get frostbite. Some people use frozen bags of peas for cold packs for feet or nails
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I was very careful when washing...all through chemo and about 4-5 months post chemo. My technique was to get in a warm shower, then turn water to cold, rinse hair, I used Pure shampoo, would pour in my hand and mix in a little water, then rub hands together and use on ends...would do this again for top of head. I did use my fingertips gently to scrub scalp a little...more like a movement..ha.. than a scrub...but my scalp was oily and really scaly....I needed this to stop itching and scratching.
I did ice my feet and fingertips for the hour of taxotere...did not have any real issues with neuropathy. I did get tingling after first Tx so was more diligent for 2-4...and really helped. I used cheap bags of frozen peas.0 -
This sounds like a seriously dumb question, but here goes. I have bad circulation in my hands and feet anyway, so I won't be surprised if I get neuropathy. Should have iced yesterday on day 1 of chemo, but didn't. If the neuropathy occurs on the bottom of your feet, do you place your feet on top of the ice pack(or frozen peas) or do you lay the pack on top of your feet and hands?
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Thanks for the washing tips. I am soaking my blistered feet in Epson Salt and that is helping with healing the blisters.
I have post poned my hike today because it is going to be hot in Boston and I feel this is such a vulnerable time for the hair. I am 14 days Post PCC and I am freaked out I will lose more hair now. I have kept maybe 85% -90% of my hair but am noticing more shedding. I will be more gentle with washing. However, I am experiencing more tangles. I have curly hair and only comb it in the shower with conditioner and a wide tooth comb. Through out this whole process I have conditioned the ends in the shower everyday except infusion days. I have managed to keep it healthy using a combination of Kenra leave in conditioner and Sea Chi moisturising treatment applying below the ears. My hair has grown a few inches past my shoulders and is now looking a little dry. I need a trim but will wait two weeks.
I am eating more protein, vegetables, fruits , taking vitamins and supplements, and using yoga to detox my organs. However, there is no way to predict or know what is going to happen with my hair. This part is so scary. I have extensions but will wait to use them when the shedding lessens a bit. Most of my hair loss is by my left ear. I think my shedding is close to 100 hairs a day.
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AnneDR: No questions are dumb....Not sure what the real way to do the cold packs for hands and feet but I got the frozen peas from CVS and put them inside a sock (both for hands and feet) and slid my feet/hands into the socks. I think as long as it is 'unbearably' freezing, that is fine. Most of us found the packs for the hands and feet worse than the caps.
I can only think it worked because I never got any neuropathy!
Good luck! Arlene
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Still not sure though if you put your feet on top on the frozen pack so it hits the soles of your feet, or lay the frozen pack on top of your feet?
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I put the frozen peas on top of my hands and feet. Much more uncomfortable than the cold caps. But with it!! I had no neuropathy and my nails stayed looking great! Iced from 10-15 minutes before Taxatere until a few minutes after. You can do it and will be so glad you did!
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I put the packs on top of my hands and feet to get the nails the coldest.
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Icing fingers and toes: I used little frozen Rubbermaid ice packs (about 1" x 1.5" size) and put them in some orphan socks, wore them on hands and feet like mittens during chemo. I placed the ice packs on top of and under my toes, and at my fingertips, to prevent neuropathy and nail damage. My fingers were pretty cold from constantly massaging the cold cap on my head, but I iced them inbetween as much as I could.
I occasionally had twinges of neuropathy (esp. after the second chemo, intensely but just for 2 days) and mentioned it do my acupuncturist during my weekly treatments. She made it vanquish immediately. I love acupuncture!
Btw, I'm one year PCS (post-chemo shedding). I finished chemo 6/21/2010, finished shedding in late October 2010. Regrowth began before chemo ended, but came roaring back after shedding stopped. My hair has been so ginormously thick and curly all year, and this week I finally started having normal shedding (I've always been a heavy shedder). I'm so glad to finally shed some of my hair -- it is HOT having this much hair on my head! During chemo I never thought I'd get to this point. My hair looks nearly as it did before I was diagnosed, and I get compliments on it constantly.
So, to everyone going through the shedding stress of chemo, don't worry, you are protecting your hair and very definitely stimulating hair growth (though you might not notice it for a short while) by using PCCs. I have longer hair, and it would have taken me a good 2+ years to regain my hair, if I hadn't used PCCs. I'm so grateful.
Hang in there, you can do it!
Susan
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Julia 1969, What a great idea! Do you have to be on facebook to post? I would love to help get the word out.
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thanks susan
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