Cold Caps Users Past and Present, to Save Hair
Comments
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Wow! I've been gone for awhile and there was so much to catch up on.
Snoopy so sorry for you're loss
the rest of you ladies rock! on thursday I will be 3 weeks PFC. I'm still shedding but minor, and sportin my friar tuck do as well. I can't believe I'm going to say this but I'm looking forward to a mullet
. Can't wait for new growth. Rads start on Monday 0 -
Dexxy - welcome back, we've missed you:-) hope your trip was good. Looks like me & you are on this again:-) i start my Rads on monday as well:-) just joined the Oct Rads group.
My hair is still hanging as well, shedding is not bad, just the normal shedding i guess, mind you my hair is so short and frilly loooking, but i am glad i used the caps. When i finish Rads, i will either cut short or trim the front and cut short the back and kinda make a style. Cant wait for Rads to be over, i am actually dreading them uuurrgghhhh....
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Ladies: Don't stress too much over rads....I was more worried about the rads than chemo and they were a cinch for me and probably will be for you too. I had a bit of itching/rash and just put benedryl cream on it and took it right away. Even the boost didn't cause a big reaction and I have very fair skin so the techs were amazed...I was actually wondering if it was working. I used the vitamin E oil and perhaps that helped too. I also used the pure aloe too. The worst of it was the mild pain under my arm.
Arlene
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I wanted to post photos as promised. The first two photos below are my pre-chemo hair back in early March:
Here are the photos I took today (below) - I completed chemo the first week of May. Sorry they are out of focus I had to take them with the auto timer on the camera. I did 4 cycles of taxotere and cytoxan.
These first two photos are my hair with no extensions in. The bottom two photos are me with 1 set of extensions in. It just fills things out and thickens my hair up.
I have colored my hair with no ammonia and no peroxide color 4 times now. I have cut at least 3 inches off my hair since I started chemo the first week of March. My hair is definately much thinner. I would say my ponytail is about half of the thickness it use to be. When I put one set of hair extensions in wth 3 clips, my hair feels the thickness of my pre-chemo hair.
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MDG- you look beautiful! You had so much hair to begin with that even though you have lost a lot, you still have a lot of hair!
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Mdg- you look beautiful! Your hair looks just fine. No one can tell that you had treatment. Looks that you lost less than me.
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Gotta love hair extensions...a penguinista's best friend!
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Maria - you look amazing. So healthy.
... i can't remember who asked, but i was on AC/T. DD every 2 weeks. I kept 80% of my hair during AC and the first two taxol treatments. It looked fine. Something happened after that second Taxol treatment. The hair was coming out like crazy. I also developed bad flakes at that time. This is the kind of thing that should be tracked by PCC. It makes me sad that this won't be corrected for other users. I lost most of my hair. I wondered many times if it was worth the daily agony and worry if it would all fall off. Like Maria said a few pages back - my kids never saw me bald, and that made it worth it. It started to grow back quickly and i know it'll be sporting cute hair soon enough. Hang in there gals!
p.s. i also made a great friend as a result of PCC ... my BB Deb ... i wish she was closer!
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Wow Maria~
You look great!
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Liv Car I asked. If I kept my hair during the AC and lost it during Taxol, i would be want to know what happened! I feel sad that you had to go through the torture of the caps and not have them work. Did you get your money back?
Also if we are not being asked about our experiences', how do they calculate the amount of hair we should keep during and after chemo?
Don't get me wrong, I am so happy to have used the caps!!! With that said, this is a product that needs to be studied.
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Great, beautiful pictures Maria. And you were so stressed about how much you were losing. You have a full head of hair which is wonderful. I have lost almost all my length but I have hair and no bald spots. It was super thick in the beginning and the way it is coming in looks like it will return to its norm and in the meantime I will have a nice little pixie cut. I'm happy!
Again, beautiful, gorgeous Maria!
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WOW Maria, you look beautiful and your hair looks awesome! Who would ever think you went through chemo just months ago! Thank you for sharing current photos. You are an inspiration to us all.
I hope to be able to share a photo some day, once I feel comfortable with my hair. I did not even start out with as much hair as you post chemo Maria.
I do regret not taking before pictures, I decided to have my hair colored close to natural color - blech- and cut to a chin length bob before starting chemo. So it doesn't really represent how I normally look.
I do think for scientific purposes or at least future users, this information needs to be logged or tracked in a database, in terms of success of each user and variables in their lives such as supplements, diets etc.. For those on ACT, I remember Cheyanne was on that protocol and she had pretty good success. So without tracking it is hard to determine why some lose so much hair and others not so much.
I only hope our collective experiences help future users.
I am fortunate to have found this site as well and my new friends! Livcar, you are a great friend! And I wish we were closer!
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Maria - gorgeous gorgeous hair! You are beautiful!
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Maria, you look great!....no one would ever know you finished chemo in May!!! So happy for you.
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Maria - You look Beautiful!! Your hair is nice and full, noone would tell! Thanks for sharing, and as DebRox said, you ARE an inspiration to all of us!!
BTW, I know its late but wanted to wish you a Happy Belated Birthday:-) hope you had a great weekend!!
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Maria you look awesome! I can't wait to have some hair to attach extensions to!
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Thanks for the late Bday wishes. I enjoyed a dinner out with my family that night. I also have to tell all of you how much it means to have hair. Today I did two things that I would have dreaded without hair. This morning I taught my first aerobics class since we moved out of state. It would have been a lot harder for me to walk in a room full of people that don't know me and have them all stare and wonder through the entire class what kind of cancer I had because I had no hair. Having hair allowed me to get back to normal activities and keep my cancer a personal matter. I felt "normal" this morning. The other thing I did was go to the DMV and get a new drivers license. I will be stuck with that photo for at least 4 years and it was nice to have my long hair for it! Otherwise the license would have been a reminder everytime I opened my wallet for the next 4 years. I am very greatful for PCC's.
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Hey everyone, Julia1963 asked me to post this photo of her at the Komen walk last weekend. She was there and supporting BC and cold caps!!!!
Julia1963 wanted women to know they have a choice and power in a difficult situation. She said the message that was crystal clear to her but probably didn't mean much to the casual observer. The message has to add that cold keeps hair. She will be trying a new message soon.
Thanks Julia for sharing! I am glad I could help you post this.
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Love the pic Julia~...I truly feel like I know many of you although we've never met....running the Komen in Houston Saturday.....always chokes me up...I have a mom and sister who are survivors too. Too many, too young and we've got to keep searching for that cure!
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Lynn: Yes, we so need a cure. This bc seems to be running rampant and it has no rhyme or reason on who it decides to light on. I have no risk factors and there are many more of us and a cure has to be on the horizon soon, we can keep hoping!
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I lost most of the hair on the nape of the neck and around ears. But I didn't use gel straps, I didn't know it exist. It would it be nice if I had use the gel traps, less stress for me, and less crying time, less xanax. And nobody told me about it. Anyways, I am glad about hair extension, I think I will use it for few months since I have a lot of hair growing. PCC should be more organized.
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How many of you ladies used the eye brow straps as additional tools to keeps caps cold and tight around the nape of neck and ears?
Maybe this is something all new users should request!
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Julia 1963- I love the picture and what you are doing! It is inspirational.
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I used two straps when I used the caps. My DH pulled them super tight too. I did lose a little at temples, side burns and nape of neck but it was not noticeable to others. The straps we used did not have gel or anything...just regular straps.
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I used the gel straps that were made for the eyebrows for additional cold and tightness. I had a separate cooler for them with dry ice. I am 7 days PCC. I never experienced a heavy shed, but did have consistent shedding through out the process. I didn't keep my hair in a bag and my best guess is that shed around 50 hairs or more each day. It could be more. My biggest shed was when I had my rash and itched the crap out of my head. I didn't rinse the ends of my hair with conditioner for two days or comb it. That following hair rinse, I had tangles of hair that was caught in my healthy hair. It was disgusting, but still I lost maybe 25-30 hairs during that shower. The following day, my hair loss in shower returned to normal.
I think I have 90% of my hair. It is hard to tell. I guess you know how much you lost, by how much grows back in. I lost more hair on my left side burn, i think. It is scary to be done and be vulnerable to much more hair loss. I am taking iron pills because my iron did dip a little. I have hair extensions too.
I used the generic latisse a lot this week and it irritated my eyes to much. Is the brand name better? Is there anything else that is less harsh to use?
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Soccergirl- you are doing very good!! I used to shed around 100 hairer day, and when washing my hair 200. After treatment in my 5-10 weeks PFC, I shed even more daily and I remember when washing my hair 2 or 3 times I shed more than 500. Thats when I though I was going to get bald.
I am using smart lashes and it good no problem at all.
Tiki0 -
Just ordered my Cold Caps in anticipation of starting Chemo next week. Is there anyone else out there using this therapy in the Indianapolis area? Have you gotten much supoort from your surgeon or oncologist? In which hospital are you receiving your treatment? Thanks for all the great posts. I have been taking notes on all your suggestions!
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Welcome Anne! I am not from Indy at all but I can tell you overall many physicians were not too receptive to patients using them. My med onc had the caps and a freezer in her office and still said there was only a 50% success rate. I have a full head of hair and she said I had the best results of her patients. Feel free to post questions....this thread is super long and it's hard to find the information you need. Also feel free to PM if I can help at all. Good luck! Keep us posted on how things go.
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Thanks Tiki!
Julia 1963: What did you use on your blond hair? I am 8 days post PCC and have terrible dark roots. I am curious if you used the real stuff on your hair? Before chemo, I was a double process blond, switching between low lights and highlights. How did you maintain your color? I am in no rush, but curious of the average wait time.
This question goes out to any blond penguinistas?
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mdg: Happy belated Birthday!! Did not know it was your birthday! Wishing you all the best!
Julia1963: Love the t-shirt and the message! Way to go. We need to get the message out there. I know I am so thankful to have my hair, albeit thin, but hair. I wish many more women knew about the option of cold caps. The only way is through us users!
Soccergirl: You are doing excellent in terms of shedding! Very successful, congrats! I too am a double process blonde with now 5 months of very dark roots - 9 weeks PFC. Blech! My hair still feels too fragile to color and I did lose a lot more than you. I am washing every 2 days though, shedding about 100-150 per wash and about 50 per non-wash day. I hope to color shortly before Thanksgiving, if I can make it!
Also latisse irritates my eyes as well. I have been using Revitalash, purchased at beauty supply stores - expensive at a retail price of $130. My eyebrows have grown back almost fully and my eyelashes are now little stubs. Hopefully the revitalash helps with length and volume.
AnneDR: Welcome to the thread. You will find amazing, supportive women here. Don't be afraid to ask questions or for help. We are with you each step of the way.
Here is my vent! I went for a visit to the MO yesterday, proudly sporting freshly washed hair tucked behind my ears - remember I have lost about 40-50% and my hair is thin to begin with so it doesnt look awesome, but I have hair. I wanted to show off what I saved to the negative nelly nurse, who ALWAYS put me down for trying to save my hair.
Her response to me showing my hair, "well the women that lose their hair, it comes in far stronger and they don't have to use all sorts of expensive products like you, the chemo changes their dna and their hair comes in thick and fast, often better than before chemo. You have to be careful with coloring and everything else, you hair is fragile and won't be as strong as the women that lose all their hair". THANKS ALOT!
I decided to ignore her comments and let them roll off my back again, but inside I wanted to ask, why her why she is always negative with me. Or have her examine my pubs, yeah that hair is now coming in and it has changed texture, it is no longer as thick, it is sparse and may not come back to what it once was, would this have happened to my scalp hair? I don't know, there are no guarantees. What I did do was PROTECT my scalp follicles from permanent damage. Can't she just say something positive?
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