Cold Caps Users Past and Present, to Save Hair
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Hi all,
I am 6 wks pfc, this week is when I had shed more, like 100 each day. Has anyone had notice this shedding after treatment? I' m planning to cut an inch and color my gray hair next week, since it is recommended to do it 3 months after first teatment.
Has anyone one heard or recommend " HERBATINT" it is plant base, no peroxide or anomia.
Blessing,
Tiki0 -
My shedding started to get bad about 3 weeks PFC. I am now 11 weeks PFC and it is still shedding bad. I still have "normal" looking hair to others...but it is thin compared to what I started with. It seems to not slow down at all...this has been going on for a long time now. I did color once a few weeks ago with no amonia/no peroxide color and it helped a little but I did not leave it on long enough so the grays were toned down but not covered. I am coloring again next week though before we go on vacation....I can't take it anymore! Whether I color/don't color it keeps shedding. I cut 1 inch off about 6 weeks ago and 2 more inches off about 3 weeks ago when I colored. I had to as the ends were getting so thin and scraggly (if that's a word...). I hope your shedding doesn't last as long as mine is......I just want it to stop.
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Mdg, what brand did ypu use to color your hair?
Thanks,
Tiki0 -
Hi I am using Dignicap and just had 2nd TC 3 days ago. Noticed very bad shedding today. At least 30% came off in clumps. At this rate, I probably be bald by third chemo! Anyone with similar experience?
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Frances-you are not alone. I do have lost 2 baggies full. My hair was to my waist and was get very tangled so just the weight was pulling on what good hairs I have. it has slowed down, but i did have to cut off 6 inches to lighten the load. I know its not easy but think about this, some hair is better than none. and the cold will help new hair grow. We really have to look at this like we are saving our hair, preventing permanent loss which can happen. The cold cap will save us all! my advice is to stop touching it and find a way to put it up so that its not pulling but that is not hanging for you to see all the little hairs. Once a day I'm doing a comb through and then its back in a braid. Hang in there DigniCap sister, I've met a women who said the first shed was the worst and then no more big ones. We can only hope. I'm leaving in 10 minutes fro round 2. wish me luck!
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Dexxi - When you said 2 baggies, what do you mean? Everyday, one week, since you started chemo...? What size are your baggies? I am using a snack bag everyday, so I can really tell if I am losing more each day. Thank you.
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Dexxy all the best for round 2. Today I think I have lost approx 3 sandwich bags full and I have Short hair. Can feel pain at the follicles and can see a lot of scalp. Well will just have to perserve and hang in here.....
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Frances - are you sure you're losing it in clumps? or does it just seem that way? if it's clumps, maybe you should talk to the dignicap rep about keeping the cap on longer.
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I used Loving Care but I believe it has been discontinued. Clairol also has another color kit that has no ammonia and peroxide....I know it's available at beauty supply stores like Sally's. I am going to get some in the next day or so. I will post the name...I read about it somewhere in this very long thread pages back. I am going to give it a try next week before we leave on vacation.
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LivCar good idea. I will ask the nurse to have it on longer. I have probably 50% hair left and this is just 2nd chemo!
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Just had my hair professionally colored again (#3). Before BC is used Garnier Nutriesse hair color. My base color is dark ash blonde with some grey. I lightened it to a medium more golden blonde. Note that a lot of the non ammonia/ non peroxide color will add color to your hair, but not lighten it. They will also not color much of the grey. In other words, if you're going darker, without a lot of grey they will work. If you want to go lighter or have a fair amount of grey- you'll waste your money. My hairdresser used a Loreal Professional color line INOA. No ammonia tingle and the color is wonderful. Like so many of you, I couldn't wait to color. I waited 2 1/2 months after chemo and although I was still shedding for a few more weeks, it did not accelerate any hair loss. What an ego boost and a way to put some of the cancer journey behind you.
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Hi ladies just got back from chemo, very long day
Ralston, yep sandwich baggies, not stuffed to brim but 3/4's full in 2 of them and I'm half way through number 3.
Frances so sorry to hear about the loss, I think the thicker the hair the harder it is for the cold to get through to the roots. I told them today that any women who come in with thick long hair needs to cut it and layers would be wise. I found out that i had more hair than any other women in the trial by far so I a good marker for the future. I told myself going into this that it wasn't just for me it was for other women out there who wanted a hair preserving, FDA approved choice!
the shedding has slowed and I did talk to my rep and for some reason the first shed is always the worst so hang in there FRANCES some hair is better than none. Take good care of what you have and stick to washing on once a week with a natural organic leave in conditioner.
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Hi dexxy rest well! I can't shampoo once a week here in the tropical Singapore. We have daily temperature of 28 to 30 deg c and humidity is super high too. I try to wash alternate days. Well I have told myself if my hair sticks on it's a bonus so now mentally prepared to let it go.
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Thank you! I needed to put some perspective when we talk about bags full of hair, because I really freak out when someone mentions "bags full of hair". I have been losing around 1 snack baggy full of hair everyday since I was 18 years old! For me loosing 50 or 100 strand per day is normal. I am not exagerating, my hair is thick and long, and so much hair gets caught up in the vacuum brush roll that I have burned out the motor of 2 vacuum cleaners! I have never worried because my mom has already experienced this for 77 years and she stills has a full head of hair. Now, since chemo I have been told that I have to expect that after my second AC I will lose "a lot" of hair, again I really want to know how much is "a lot"? Three bags of hair per day I will think that definitely belongs into the "a lot" group.
Now, I read that my brows and lashes will hold on until after chemo, and then they will fall out completely. They will grow back within a few weeks, but will fall out again about 3 months later, and this will keep happening every 3 months for the first year after chemo. The explanation is that our eyelashes and brows are normally out-of synch, but chemo synchronizes them. So, instead of losing a few at a time, we lose them all at once over and over again. It takes a while for the growth cycles of the individual hairs to get out-of-phase and get back out-of-synch.
Well. I have NO time for this out -of- sync crap. I am gonna give up almost 6 month of mascara and quite frankly I don't like it!
I gotta go and see where the whine and bitch thread is....good bye.
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Ralston- you made me laugh! I'm 15 weeks PFC and washed my hair tonight and STILL shedding. It helps so much to walk through this together with all of you. Desperately need blond highlights for these dark roots and coverage for some grey. Afraid to color with peroxide until this shedding stops. You all mention short hairs growing in all over. I don't have that...yet. No bald patches, just thinner. But wish I could see regrowth soon.
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Ralston -I loved it, whine and bitch thread. Sometimes we all need to whine I think. Venting can be good if in moderation. Anyway I am almost 3 weeks PFC and shedding more, scary, hair thinner but I still have it. People when I tell them I just finished chemo say, wow you are lucky you still have your hair. I then tell them about the cold caps. We are lucky to have this option to save our hair. My scalp seems to hurt a little now and also itch after shampooing today. . Have others had that ? Hopefully it does not mean anyting ominous?? Also any idea when neuropathy goes away? , feet feel wierd sometimes walking on them
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serinitywisom-you should check to see if L gultamine will help, I'm taking in during chemo to prevent it. Also many have had very good luck with acupuncture, specifically for neropathy. You're a northern CA girl I'm sure you have connections to someone good. if not I can get you some names
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Hi All: The clairol product is: Clairol Professional-"Beautiful Collection"--semi-permanent color with aloe vera/jojoba/Vit. E and no ammonia and no peroxide. I bought it, but haven't used it yet. Maybe this week or next.
Ralston: Try Generic Latisse for brows and lashes. You Google "Generic Latisse" and a few companies come up. You purchase it w/o a prescription for about $45 or$55 with mailing(its from India). Regular Latisse is bought here with a prescription and costs$100. It is a tiny bottle with a little brush. I used one(1) drop each night for both eyebrows and for base of each eyelid. One drop for all. Be sure to wash brush with cold water after each use. I never lost any brows or lashes and I am 3 mos PFC. I stopped using it about 11/2 mos after chemo.
I think that the person who said to cut hair before chemo is correct, because after reading all the messages over the last 7 months, it seems the people with long thick hair have the most problems with heavy shedding/tangles/bald spots,etc. Ithink it makes most sense to cut your and have less stress through this process and worry about having long hair after you are done with chemo and the caps. Hair can always grow longer, but less stress over the shedding etc., will probably be better for you all. Just my thoughts. I have short hair, and I only lost 11/2 snack size baggies throughout this whole process and have stopped shedding for the most part after 1-1/2 months PFC. My hair grew during chemo from ear lenght to bottom of neck. All my hair fit under caps and got full benefit of the cold caps.
Keep Positive!
Nancy
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Thank you Nancy! My hair was toooooo long and really damage before chemo. When I told Frank that I was planning to cut it short, he told me that I was going to make a "big mistake". According to him, women with longer hair have stronger roots because they have to hold more weight, but if you cut it, your hair "shocks" and your roots become extremely vulnerable. He advise me to cut it no more than an inch and 3 inches from the longest layer before chemo, never during treatment. I also comb my hair once a day then its back in a braid. No tangles so far. It makes sense that people with long hair fill more "bags" during the process, because the length creates more volume. Definitely, it's harder to take care and we have to be really careful when we wash it.
I am also convinced that if you have thick hair and you lose 30% of it, you can't really hardly notice the difference, but someone can really see the difference when your hair is thin (when my husband loses more than 3% I can tell immediately). Anyway, let's keep sharing experiences, so we can all learn more during this process and "stress less" (specially from the amazing courageous woman that have already walked this path) . Have a wonderful weekend
. S/P UMX with TE on 6/16/2011. ALND on 7/1/2011. Started 4 X AC on 7/19/2011
Diagnosis: 4/6/2011, IDC, 1cm, Stage IIa, Grade 3, 1/20 nodes, ER+/PR+, HER2-0 -
Hi ladies,
I had about one sandwich bag of hair, total, from my chemo hair loss; like Ralston, I am a heavy shedder anyway, and wanted to be able to quantify the difference that chemo would make. The one sandwich bag is the result, the rest preserved thanks to PCCs.I have very thick, wavy hair -- now even thicker and curlier. My brows fell out about 2-3 weeks PFC, but grew back and have stayed (I'm 1+ years PFC); they did not continue to fall out and regrow.
I did not cut my hair, per Frank's explanation. I'm extremely glad I didn't -- I had enough length to cover the nape where I had heavy loss, and enough length in front to cover the thinning above the ear. Women with thicker hair lose more because they have more to lose; Frank also said that vegetarians fare less well than carnivores, for some reason (possibly tied to liver function). And there are so many other variables, some not yet understood well.
Dexxy and other dignicap ladies: I'm very sorry about the heavy shedding you are having! The Dignicaps use a much warmer temp than the Penguin Cold Caps, and shorter wearing time; I wonder if that is a factor? Can you adjust temp and/or time? Either way, by cooling your scalp you are still protecting your follicles from greater damage.
serenitywisdom: my two best therapies for neuropathy were L-Glutamine (I took caplets but there is a less expensive powder available also) and, the very best, acupuncture. Can't recommend it enough, for neuropathy and all of the other SEs and emotional imbalances, energy shortages, as well. I'm lucky and glad that it is integrated as standard treatment at my cancer center.
Susan
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snoopy73
I am sure your problem is resolved by now but I wanted to say that happened to me also- I just wasn't combing it enough- had been avoiding combing it and then washed it and it was horribly tangled. It took me two sessions - one with a hired hairdresser- too ke her two hours to get it some what detangled and then my friend and I worked on it for another two hours at home. IT was slow and lots of hair loss- could not help it. No other alternative - thought I was going to have to cut all the hair off so I was very grateful. I think I lost a third of my total loss on that scary event. Hope you turned out okay. I learned to comb through once a day, then clip it up gently. That way it did not get tangled again for the whole day.
I am now post chemo by four weeks, still shedding and still being gentle. It is frustrating but so glad to be off the drugs and halfway through radiation. You will get through this. GOod luck!
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Hi, just cried at the sight of my bald top. Had my shower and washed my hair gently and my hair came out in entangled clumps. I now have a bald top with hair on the sides. Dignicap didnt work on me.
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to FrancesC and other Digna Cap Users:
First, Frances, I am so very sorry the Digna Cap didn't work for you on top. What chemo drugs are you on? Perhaps a scarf just across top of your head with your side hair hanging down will work for you. Put a call into Frank, maybe he can help with a suggestion or if you have more treatments you can supplement with Penquin caps? Using therm in between treatments promotes hair growth. I used them for 3 days every week between treatments(which were every 3 wks) and my hair grew a lot.
About The Digna Cap; I was really hoping this would work, because I thought Wow! no changing caps every 30 minutes and a constant temperature, much less than the Penqin Caps--this will be revolutionary! So sorry to hear it isn't faring that well for all. Do they adjust the temperature and the time according to the chemo you get and or the type and length of your hair? Perhaps that is what needs to be done to perfect this otherwise great sounding product.
Keep Positive!
Nancy
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Frances - i have to cover the top of my head. it's almost bald. I wear ball caps or i tie a scarf around. Do-rag style. Google it for ideas. As long as hair is showing at the bottom, you'll look ok. Keep at it with the dignicaps. Make them leave it on longer. I really think that's the problem. Our caps stay on for 4 hrs post chemo. Keep at it so you'll still have some hair when chemo is done and your hair will growin faster. Good luck!!
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Hi keep positive and livcar I am on taxotere and cytoxan dose dense. we don't have penguin caps here only Dignicap. I have it on half hour prior to chemo and throughout and 1.5 hour after chemo. The temperature starts at 22 deg c and within an hour it goes to 5 deg c and remained so until last half hour. I had my hair cut short prior to chemo and still Dignicap didn't hold them on. I have just massaged my bald scalp with a mixture of jojoba oil and lavender hoping to stimulate hair growth. Started wearing cap now as my bald head with straggly bits of hair is scaring my girls.
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Hello ladies,
I am new to this board. I have been following your expereinces since May and feel like I know you ladies well. I was diagnosed with BC a week before my wedding and this spring/ summer has been quite crazy.
I started chemo 7/21/2011 and will receive 4 rounds of TC. I am using a Penguin Cold Cap and I am so Thankful I learned about them. I am scared for the first shed!!!
I am curious if diet and exercise are factors that influence the success rate of the caps? People have reported about the Vitamins they are taking , but what about the amount of protein and foods high in Omega 3s? What about acupuncture on the scalp? There are so many different variables that can affect the outcome.
I am being treated at the Dana Farber in Boston, Ma. It is one of the best cancer research hosptials in the world. I am hoping to prove that this works so they can take it seriously. We need this process to studied and perfected.
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Dear soccer Girl,
I was told not to take any vitamins or supplements during chemo or radiation, because they could interfere with the treatment. However diet and exercise were another thing. Diet is important, but that is if chemo doesn't effect you appetite or taste buds or both. You should try to eat healthy, but if you can't eat because of horrible taste or loss of appitite, them eat anything that you can! Exercise is very important. Simple walking can do wonders for you. When you walk,(no need to do speed/power or marathon walking) you oxegenate your red blood cells and this gives you energy and wards off the fatigue that chemo and radiation cause. I walked throughout all my treatments and almost never got tired or fatigued. You can start out just 1 block at a time and build up as you progress, but walk every day.
Good Luck! Keep Positive!
Nancy
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Oh Frances~
I am sorry about your top hair...
Hugs to you.
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I also feel bless to live in the area where the Fred Hutchinson Cancer Research Center is located. Their interdisciplinary teams of world-renowned scientist work together to discover new ways to detect cancers earlier, when cure rates are highest; develop effective treatments with fewer side effects; and learn how to prevent cancers from growing in the first place. I am being treated by one of its most world-wide recognized clinics and research partners. Also I have been seen a Naturopath at the Cancer Treatment and Wellness Center of America to help manage side effects and keep me in optimal health to better tolerate cancer treatments. Well, there is a lot of controversy among all of them about which "supplements" interfere with my treatment and which not. So besides always asking my oncologist her opinion, I decided to follow my own advice: I do not take anything that needs better studies before a recommendation can be made. You can find on Susan Komen for the cure web site under Integrative and Complementary Therapist more info.
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I forgot, you can also find more information at the American Institue for Cancer Research ,they have one of the best recopilations of studies and results made in the last year
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