Cold Caps Users Past and Present, to Save Hair
Comments
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That is amazing Maria. I mentioned in previous posts that my new onc office gave my name (as a new patient) to a support organization and they called me wanting to see if I needed support and when I explained that I was finished with chemo, etc and didn't need support, they asked me if I'd support other newbies and I said yes but mentioned the cold caps and she asked me to come do a presentation and I was SOOO excited BUT I haven't heard anything from them....I bet they talked to the doctor who probably poo-paawed it. Going to be a hard sell! AND the onc nurse said she'd never seen anyone who had gone through chemo have as much hair as I have (and I don't have nearly what you have Maria). I'm not bald and never was....short and much thinner but it definitely worked. Kept my hair long enough for all the new to come back in which kept me from being bald!!
On another note, am I the only one bothered by all the pink? It drives me nuts....I went to the grocery today and purchased new carry out bags (the cloth) and the check out girl said, we have the breast cancer ones and I told her that I just went through BC and wanted nothing to do with the pink. She indicated she understood that I saw her and the girl bagging my groceries looking very questionably at my hair with doubt.
Oh well!
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Oh I am barfing pink.....I am taking photos on my droid phone and I think I am going to start a thread on "post your pink stuff here" to see who can come up with the most crazy one. Anyone interested in posting photos of pink stuff? You should see the display at Staples......lordy! I couldn't get out of there fast enough!
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mdg: please PM me the name of the MO at UofM who told you they didn't work.
Susan
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Hey all,
Has anyone used Sea-Chi products? I have been using their conditioning growth formula and I cannot believe how my hair is growing. My mom whom I see a couple times a month asked if I had hair extensions! It is rather expensive but I am very happy with the product...
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Hi Ang 7: I love the Sea Chi! I used it on my hair below my ears during chemo everyday. I am 12 days Post PCC and have not dared to use it on my scalp. I feel this product kept my hiar from getting dried our duirng chemo.
When did you apply conditioner to your scalp post pcc?
MDG: I think many oncologists/ nurses don't care about saving our hair. They don't understand that our happiness is related to the way we look. Saving our lives in always their main goal, but what about the quality of our life? I think these two varaibles are related. Doctors need to treat patients not tumors.
With that said, I am know focusing on Eastern Medicine to heal my body, mind and spirit. I have always particpated in competive sports. Today I am meeting with a Yoga instructor and will take Ayurveda Classes at the studio. A new beginning for me. Western Medicne falls short in so many areas.
Have any of you ladies used chinese hebs?
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Did any of you ladies get your period bacK after chemo?
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I hate pink, too! However, when it came to supporting cold caps and patient awareness, I actually made up the shirts in pink. I plan to wear it to any appointments I have in the future. I wore it to a post MRI and got three conversations going about the caps. I also wore it to the Susan B. Koman walk in San Francisco. Since doctors and other patients won't ask- the shirt was my idea of screaming the message to others without opening my mouth. I can do that, but no pink ribbons for me. Give me a break- even the pro-football players are wear pink. Yuck.
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Hi ladies, checking in today is my first actual radiation treatment. Just anxious to get those all over with. I have just about 4 weeks PCC, just waiting for the new hair and watching to see if my eyebrows and eyelashes stay. All of you are inspirations, I wasn't as successful as all of you were so its nice to hear about all the triumphs you are having. The way I look at it is any growth is a positive!
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Hi Soccergirl, I am being treated at the same time by a traditional Chinese Practitioner who also has a masters in nutrition from UK. I am taking Chinese herbs prescribed by her but don't know what they are. Felt that these herbs ( in powder form and I mix with water to drink) kept me going during chemo and supported me in quicker recovery from chemo effects.
Dexxy like you I haven't been so successful in the cold caps as I have to wash my hair frequently due to our hot and humid tropical weather. Dignicap also didn't work well for me causing heavy shedding. Every morning I will stand in front if the mirror and check for new growth LOL like hoping my hair grows miraculously overnight. The new ones are coming out but I am hoping more will come out faster to cover the bald patches so that I can cut off the longer thin strands and have an even crew cut hairdo.0 -
Ang7: Looked at their website and the products look great. Which shampoo do you like best? Definitely going to order some. Thanks for the information.
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Soccergirl: My last period was during my first chemo the first week of March. I have not had it yet...I am on tamoxifen. I started that in June.
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Hello penguinista sistas; Hope all is well with you. Susan - Congratulations, you are so inspirational to us, Thank you!!
Finished my last chemo 4 weeks ago (so am i 4 weeks PFC?:-) anyway, started my first radiation treamtents yday, I was very nervous and anxious but it was uneventful. The techs and the Onco nurse practitioner are all very nice and helpful. Everyone is so happy and surprised to see that i finshed chemo and still have a head full of hair. Like others on this thread, my hair is not as long as it used to, its very very short at the back and kinda shoulder length long at the front (more like half my head is short and the other hald which is the front is long) i usually pull the long hair into a ponytail tucked under, so it covers the short back hair. For pple who dont know me, dotn notice the differnece, for the ones who know me jsut comment that ooohh you cut your hair!!I dont shed as much Thank God!! I want to cut my front long hair (esp the relaxed/permed ones) and start growing my hair afresh, not sure when i can do this. Planning to do it after completing radiation. Any advise?
My eyebrows are completely gone!!! I hate looking at the mirror, i have to pencil in everytime otherwise i feel like my face is naked!! Normally i have thick bushy eyebrows so i reallyfeel empty on my face!! Cant wait for the growth!! My eyelashes are still hangin on, thank God!!
As far as doctors & nurse go with commenting on my ahir, my MEd Onco is so excited that i kept my hair thru chemo, she told me "now I believe" and my Rad Nurse is also so happy that i still ahve a head full of hair.
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Hey soccergirl~
I was a big chicken and did not use the Sea-Chi conditioner/hair growth until 2 months after PCC.
ArleneA~
I like the Tasmanian Lavender shampoo the best. The moisture conditioner/hair growth ROCKS!
If you order before OCTOBER 12th and put in the word PARTY you can get the Sea-Chi products half-price. I just got an email stating this...
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Debby: You mentioned that Chayanne had pretty good success after 4x DD AC and 12x Taxol. Well, she sent me some pictures and her results were pretty much the same as mine. She had to wear a wig after AC. She posted on Oct 19, 2010, 3 weeks before her last infusion, that she had lost 80% of her hair. The good news is that she began growing hair during Taxol, so she had more hair at the end of chemo and was able to color it 2 weeks PFC.
What I have noticed is that women on DD Taxol and TC shed a little during treatment but continue shedding 3 months PFC and women on ACT shed a lot during treatment and continue shedding 3 months PFC, so the amount of hair we lose is substantially more. Now, weekly Taxol is gentler. After AC we still keep shedding, but we also begin to grow new hair during Taxol.
Therefore, mathematically we all stop shedding and growing hair, after 7 months of the first infusion (TC, ACT DD and AC+weekly Taxol). Again, ACT people will take longer to look "normal" because we lose more hair.
Anyway, I am still looking for one of those women that belong to the famous 80% success on ACT and I have no meet anyone that kept at least 50% of their hair on ACT.
That said, I just met a women ACT that did not use the PCC and she had the same results as Chayanne and another that 9 months later she was still bald, so who knows....
Just finished my 4th Taxol (of 12).
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soccergirl: I use (Chinese) herbs at the advice of my acupuncturist, who is part of the medical team at my cancer center. We waited until I had completed chemo and rads (because of the antioxidant properties), and I had a full nutritional panel first also. The herbal supplements were selected based on that, to balance what my body was not necessarily processing with my healthy diet. The integrative medicine program at my hospital is *outstanding* and I am a true convert. I also use meditation, Qi Jong, therapeutic massage as well. All are important components of my ongoing care. And acupuncture continues to astound me in terms of relieving short-term and long-term SEs...first of the chemo, and now of tamoxifen.
Susan
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Dear Susan and all others,
Thankyou for the valuable information. I am now 2.5 months PFC and shedding is slowing. I think/hope. I get compliments on my haircut, it did make my hair look a little thicker and gave it shape but the roots are very black/grey compared to the rest of my faded colored hair. Interesting I have sideburns where the cap did not cover or apparently was not cold enough and I went bald there. Now the sideburn hair is coming in almost black. The plastic surgeon saw me today and when he saw the very short side burns he said that was such solid proof that the caps worked -you can really see the difference between the old and new hair. He suggested I should have a facebook page to tell about the caps and this would be a way to get donations from people to help fund those who cannot afford the caps. What do you think of this idea?
I too have had the experience from some MD's who say, oh you didn't lose your hair, well lucky for you. They apparently do not want to believe that it works for most everyone and just think I am a rarity. Difficult to change pre conceptions even when they are squarely faced with it. Maybe we should have all of us report our findings, gather the data and write it up in a USA journal since a number of oncs don't seem to believe or want to read the European oncology journals.
Technical question: If your new hair and roots are very dark, how many months do you have to wait before you can you use a product and which one to color your hair ie make it lighter. This blackish/grey hair does not go well with my skin .
Hugs to everyone
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Serenitywisdom: I only used a color that deposits color...not lightens. I would be curious about what others say as I would like to go a little lighter too. I also have the side burns. I also have a small set of what I call "baby bangs" all along my hairline in the front. THey are about 1 1/2 inches long.
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Thanks Ang7....I'll be taking advantage of the 1/2 price sale and thanks for the suggestion on the product. I'm nearly 4-1/2 months PFC so I should be just fine.
Arlene
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Hi All: I am so happy and have good news to report. Today I am a blond again! :-) At six months PFC I had my hair fully highlighted today the way I've done it for years. I got teary when I sat in the chair for the first time in a year as she began to use the foil and create the blond highlights. The sweet woman who washed my hair was so gentle and used cold water. I forgot to bring my shampoo so my hairdresser found some sulfate-free shampoo at the salon to use. I combed out the tangles myself. No blow dry. Did come home, though, and use some electric curlers for a few minutes. My hair looks like ol' times!
I, too, have the sideburns and wispy bangs. Mine grew in white/grey.
My husband had flowers on the table when i got home with a sweet card. He knows how special it is to me to be a blond again! Hope this encourages some of you! I still have more shedding than I'd like, but highlighting it did not make it worse. (Could perhaps be the Tamoxifen causing the extra shedding?)
I am so thankful God providentially led me to see the Good Morning America episode on PCC. They saved about 85% of my hair.0 -
Howard...I am tearing up! That's wonderful! I am not too far behind you and I just can't bring myself to wash my hair in anything but cold water! I did start using the hair dryer but only twice a week. I have used the flat iron on a cool setting. I also teared up the first time I saw myself with my old hair style (blown out straight). It was such an amazing feeling. I am still doing temporary hair color....I am scared to color my hair and we moved so I have to find a new hair dresser I can trust. I keep putting it off....I had DH trim my hair a while back (it's long) because I couldn't bring myself to go to a hair salon to a new hair dresser and explain all my hair issues, chemo and cold caps. My old hair dresser knows..her SIL used cold caps but she is now 5 hours away. One of these days...I will be able to walk in the hair salon again and get my hair colored professionally. I am not ready yet.
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howard~
I know how important this was for you. My hairdresser had BC and she went out of her way to find a vegetable base color, used cold water etc.
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Howard- Your positive news about coloring your hair and how you felt WAS encouraging and made me smile. I am happy for you. I think having hair makes me feel more normal. Getting it cut a little after 2 months into a bob and kind of looking like my old self was a boostlast week. I have to admit I use the blow dryer gently on low and the straight iron but not near the roots and no ill effect from that. Today I had a termite inspector over and started apologizing to him about the condition of my house- it has been hard for me to clean it, still feel weak. I ended up telling him that I had been sick and just finished chemo. He then asked: but how do you have your hair? It was fun to tell him about cold caps- many times people are quite amazed about this.
Still uncertain- when is it ok to color your hair to make it lighter? I guess that means using bleach or peroxide of some type? Need to wait 6 months??
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Hi girls! I got my cold caps earlier this week and start chemo tomorrow. My husband and daughter have been practicing on me so we will be a well-oiled machine tomorrow! I do have a question though. I ordered the eyebrow bands(thanks to your suggestions) because I have a big head to wrap at the nape of my neck. I also ordered the gold strap because of my thick hair. On the penguin website instuctional video and also on the written instructions they provided, it says to wrap the gold strap at the top of your head and secure under the chin. But the U tube video from the gal in Minneapolis who founded Rapunzel Project (also on the website), showed her wrapping gold strap from nape of her neck up to the top (where I thought the black bands were to be placed). Any suggestions from those of you who have used the extra bands or the gold strap? Still havent found anyone in the Indianapolis area who had tried this. The women at the chemo center said they don't mind if I do this, but no one else there has ever done it and they act like I am going to be a big disruption, which is why they are making me come on a Friday afternoon, I guess because no one else wants to have chemo then! You guys are giving me the encouragement I need to make me think this will work. I would not be so upbeat if I thought in 3 short weeks all my hair would be gone. Even if it isn't as successful as I hope, I will know that I tried. All these things are happening to me that I have no choice but to go along with, but maybe I can have a choice about keeping my hair! Thanks!!! Anne0
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AnnaDr - I am using the extra bands and the gold strap. I secure the extra gel band with one of the black bands, but the gold band is for women who have thick hair to make sure the cap is close to your scalp and tight at the top of your hair. I have followed the penguin website instructional video. As Sashete said, I look like a Cabbage Patch!!!
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AnnaDR- we used the gold straps to hold the top and crown of head down. Also Frank recommended that we knead the caps for a few seconds every 10 minutes to keep the cold gel next to our head.
Don't let the negative attitude you encounter affect what you've decided to do. Keep the goal in mind and let the encouragement from family and friends cheer you on. And us! No one at the hospital thought they would work since I was the first either. But they did! Friends and family celebrate with me, and my doctor is surprised and pleased. But I didn't find support with the chemo nurses unfortunately.0 -
AnneDR~ just wanted to give my bit of encouragement....I am 9 months PFC next week and I am so thrilled I used the caps....my hair is almost the same if not better than pre-chemo....better because it hardly sheds at all...know it will again but or now it's great.
What chemo regimen are you on? The ladies on this site will help with any questions and sounds like you have an excellent support system to help you.
You will be so busy with your caps you will hardly notice the chemo.....drink tons of water!....good luck and let us know how you do.0 -
Anne: Good luck! I hope it goes well. We will be thinking of you and supporting you! My med onc office had a freezer and caps in it and they still told me the caps don't work well and to not get my hopes up. They don't care....You can do it though. Don't listen to them:)
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Anne~
I am another Penguin that will be here for you...
This is a tight-knit group and I am so glad I found this thread to help me through.
Tomorrow will be 2 years since my surgery.
I am going to go out for a milk-shake with my dad.
It had to be something cold!!!
Not a chemical milk-shake, a real one at a great mom & pops ice cream place.
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AnneDR- tomorrow I'll be 15 weeks PFC, and I am doing great. I am really happy I kept my hair. I had my treatments on fridays afternoon, usually finish with all my caps about 9pm. I had normal days on Saturday with no side effects at all. From Sunday to Tuesday I was on bed resting. I really like my treatment on Friday because I had Saturday to spend with my husband. Usually it was me and another patient, so I had the nurses for me and they helped me a lot with the timing for the caps.
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AnneDr-We all will be thinking of you. It ill be over before you know it and you will be that much closer to the other side
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