Cold Caps Users Past and Present, to Save Hair
Comments
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rE RASHES with TCH. I got a sunburn on my legs which was gong away until I got the chemo infusion. Then a few days later I got a bad rash, itchy on the area where the sunburn was. I guess the chemo exacerbated the sun damage. The doctor prescribed Lidex which has helped with the rash and itching. It is like a stronger prescription form of over the counter cortisone cream. These rashes sound like an allergic reaction but may be helped anyway by a cortisone type cream. Your doctors should be aware of the chemo effects and hopefully prescribe a topical cream that will help with the itching.
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I chose to forego those things. If the idea is to kill everything fast growing, well so be it. I lost my hair (donated it first), then the fingernails had to be cut and taped down until they grew back onto the nail bed. The eyebrows and lashes left last, and took a while to return. I was a hundred ways of ugly, but at least I'd let the poison do its work. There is no sign of that beast now, anywhere. The fear with the ice treatments is that if there is a random cell here or there in the cold zone, it may survive. I didn't care about ugly. I just wanted to live. And so I have.
Good luck to you all.
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Did my hair color at the salon yesterday!! She was very gentle throughout the process she did foils throughout the hair so it would touch my scalp--It looks great ! One step closer to feeling like a normal person! No hair loss this morning--she stated that I have retained at least 50% of my hair by using the cold caps! So great! (3months PFC)
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Serenity: I have not been rinsing but I know others did rinse with cold wate daily. From what I read, rinsing with cold water is OK. I just avoid it as I figure the more I mess with my hair, the more I lose.
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serenitywisdom: it's totally fine to rinse your hair daily in cold water. In fact, the cold water on your head is good! The benefit of exercising far outweighs the slight increase in body temp (remember, our bodies are already at 98F) -- exercise keeps you strong, helps your liver recover from having to detox so many chemicals, and oxygenates the red blood cells.
One more to go and you can do the penguinista graduation walk!
Susan
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Dexxy - did you say an hour after chemo with the dignicap? Shouldn't it be longer? We go for 4 hours with PCCs.
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Just had to show photo of 1 year later with highlights...starting to feel like "me" again! 0 -
You're beautiful Ang7! Great hair and highlights!!!
I look forward to that day, one year later and feeling like me again. It is actually encouraging and heartening to hear you say that for those of us in treatment. We CAN feel like ourselves again. Thanks for sharing.
Debby
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Thanks DebRox~
I remember when I started Cold Caps there was a lady that had just posted her 1 year photo and I found it to be very encouraging. Thinking of all of you...
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sebm9- lots and lots of liquids all the time, and my homeopathic doc has me a pretty strict diet for the first 3 days after chemo to help flush me out. I'm already on a heavy liquid diet right now. I do vegetable juice that I make with lots of greens and drink that daily, about 20oz.
interestingly enough the they did not share a lot of techniques when I met with them in regards to the dignicap. I think since its a trial they don't want to sway the results. does anyone have suggestions for sleeping? my hairs thick curly and long, and if i dont tie it up at night it gets tangled.
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LivCar - nope only an hour. I think its because the machine maintains a cold of 5 C all all times
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To Sashasz3: What kind of color did she use? Brand?Etc.? What did she do with the foil? I thought they use the foil for highlighting only? I'm almost ready to color, but am afraid. I bought Clairol Beautiful Collection, that someone on this site recommended, it has no ammonia and no peroxide. I am 10 weeks PFC. Is it too soon to color? Should I wait until 12 weeks or 3 months?
Ang7: You look wonderful, your hair is georgeous and your smile is fabulous!!!
Keep Positive! Smile! Laugh!!
Nancy
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dexxy, if you PM me with your email address, I'll send you my writeup about PCCs, including the PCC haircare protocol and other tips from my cancer center nurses.
Susan
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Ang: How gorgeous! You look wonderful and so happy!
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Aww...thanks, you all are so supportive.
It has taken me awhile to get over the fatigue. I am taking my iron as I am anemic so hopefully that is helping.
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Hey ladies! Anyone out there experience bad shedding PFC? I am almost 6 weeks since last TX and the shedding seems to have progressively gotten worse. Any idea when this will stop? The last three days and hair I touch seems to fall out. Last week it was light to medium then all of a sudden it got really bad. Any insight would be appreciated.
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Ang7 you look beautiful! And your hair, too!!
NMoss: I am 5 weeks PFC and have just started to shed very heavily.....Any ideas on when the PFC shedding ends?
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Hi bhodges, I started wearing cold caps the last 2 days for 2 hrs and today the shedding seems to have slowed a bit. It's really weird my shedding is on a bi weekly cycle starting heavy on Tuesday's... I hope this was the last one.
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Hi All:
nmoss and BHodges: I am 10 weeks PFC and the shedding has almost stopped, it got worse after chemo and now has slowed down, only coming out a little when I wash and sometimes when I comb if there is a snag or a knot. Hope it gets the same for you soon. I wore the cold caps every week for 3 days at home for 2 hours a day during chemo. I usually did it in the evening while watching TV, so it went fast, just had to turn volume up so I could hear thru the caps and the "Ear Pops".
By the way, all you new gals "Ear Pops" are great for covering your ears, instead of mini sanitary napkins, they are ear muffs without the band across the top. They fit over each ear and stay on.They work fabulosly. I used the mini pads for my forehead instead of the moleskin--much easier. You can find the "Ear Pops" online, just google the name and you will see them.
Keep Positive!! Smile and Laugh whenever you can!!!
Nancy
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Ok ladies...going to color my hair now......wish me luck! I am nervous.....
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Mdg: Please let me know how it went. Am going to BP today for a haircut. What product will they use on you? I am too chicken to do it myself, even though I bought Clairol's "Beautiful Collection", which has no ammonia and no peroxide. I am very anxious to hear how your color job goes. Good Luck!!!
Keep Positive!
Nancy
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nmoss and bhodges and anybody else wondering about PFC shedding: It can go on for a *long* time. Mine went for several months. I was afraid that I'd keep my hair for chemo then lose it in the following weeks; I did not. I lost it most when I washed (about every 5 days) or combed (daily), but seemed to find more hairs come out when I touched my head. So I stopped touching my head :-) Your hair really is trying to hang on, and manipulating it could be enough to make a strand fall out.
Continue to baby your hair and follow the PCC hair care protocol (i.e. only wash 1x/2x week, only in cold water, gentle shampoo with as little agitation as possible). If you have them, continue to use caps out of the freezer to stimulate new hair growth -- mine was growing throughout chemo, though all I ever noticed was the hair I was shedding. I swam every day throughout chemo and rinsed in cold water every day after my swim, and am convinced the extra cold helped stimulate new hair and preserve the existing.
I finished my chemo last year on June 21, shedding stopped mid/late October (18 weeks PFC), and that's when I resumed warm water/daily hairwashing. All in all, I collected maybe a sandwich baggie full of hair.
Mentally, I assumed all shedding would stop around 3-4 weeks PFC, but that's not the case -- it keeps going and is normal for this process. Hence, the 4-6-month PFC haircare followup routine.
Hang in there everybody! Hope you have a great holiday.
Susan
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Good luck with the coloring today Maria.
I'm just a few days shy of one month PFC and my hair started growing during chemo also. I'm still losing hair but nothing major which is a good thing or I'll end out bald. I comb it twice a day and actually am able to wait nearly 12 days before washing. For some reason, my hair didn't get all dried out but near day 10, it is rather greasy.
Getting ready to begin radiation week after next and NOT looking forward to that but it is what it is.
Happy 4th everyone.
Arlene
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Hi ladies, do you think working out and getting your scalp hot is bad? I mean working out and exercise are super important right!
and what about climate change? i'm suppose to go somewhere very humid after I am done with chemo and I wonder what kind of effect thank will have. I may have to tie peas all around my head 0 -
Dexxy, I think I can speak on behalf of most ladies here, we all work out during chemo. It is very important, not only physically, but mentally as well.
Some women rinse their hair in cold water after exercise. I try to work out when it is a little cooler. My workout consists of hiking in canyons or mountain biking. I haven't been to the gym since starting chemo.
How exciting a trip planned after chemo. I'm sure you'll feel the breeze in your hair!0 -
thanks DebRox- you are truly an inspiration to us all. I walked to work today just cause I know how much you hike 0
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dexxy: exercise is extremely important -- it's okay if you get hot but try to take a nice cold shower after (and try not to pull your hair while you exercise, depending on your length of hair and type of exercise). Those that have an exercise routine pre-chemo will greatly benefit from it. Exercise helps you detox, supports your liver function, and oxygenates your red blood cells, keeping your counts good and helping prevent anemia and the need for a transfusion. Get in as much exercise as you are comfortable with -- and also respect your body's need to sleep and rest.
I swam (1.25 mi daily except the four chemo days), hiked (3 miles a day), did weight training, martial arts, and took up golf all while going through chemo. At the very end, my quads would be tired but the more I walked/hiked, the better they felt -- because the RBC got oxygenated. My swims got tiring but I was determined that I wasn't going to miss a single one -- I've been swimming daily since 1986. The only swims I missed were my four infusion days. I figured I didn't need to prove anything to myself on infusion days
Exercise remains one of my best friends now that I am on tamoxifen -- helps fend off the blues and the mood swings, and if I avoid sugar and alcohol, I don't have hot flashes. The minute I have anything sugary, even a glass of wine or a beer, I have an instant hot flash. I get about 2-3 hours of exercise each day and have been able to manage the tamoxifen in this manner.
About 3 weeks PFC I attended a wonderful party back in CT -- and it was 100 degees and about 85% humidity. It was a star-studded event (my friend manages a rock star) and I was nervous about how I'd do. I didn't need to worry about being "the cancer friend" at this event (which happened to also have lots of oncologists and cancer-related folks at it). I was so proud to be there in a fabulous dress, with all my hair (which did just great); even my fake eyebrows didn't melt! :-) And people were extremely interested in the Penguin Cold Caps I'd used. The former head of Memorial Sloan-Kettering's Sarcoma division said "How come all the good advances are patient driven?" He couldn't believe I'd just finished chemo -- not just my hair, but my energy, skin color, everything.
You'll do the same!
Hope this helps!
Susan
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Hi All:Well, I had a real haircut yesterday. Now my hair is very short. I tried to cut all the crazy curls off, but to no avail, it is still curly and wavy, I guess a few more months before it goes back to normal. I didn't do the color yet, I'm waiting for at least 3 months PFC, I'm at 10 weeks. BTW, almost no shedding at all now. Hooray!!
I agree that exercise is very important, but you don't have to go overboard. If you just walk everyday, it will be fine. No need to powerwalk, just walk! You can start out very gentle at first, especially if you don't walk or exercise regularly, as you start and continue, you will find you have more and more strength and can slowly and gently increase the # of blocks and before you know it you can easily do a mile or more at a time. Try it and you'll see--it works! Walking will oxegenate your red blood cells and you will get energized and you will come back refreshed and not tired. Don't overdo, increase gently and you will truly enjoy your walks. Take a friend along, if you like and the time will really go by. Good luck!!
BTW: I have completed 24 of my 30 Rads--side effects are RED RED sunburn like effect on your breast and underarm. The nipple area is the most sensitive and there is itchiness, especially in the nipple area.
I said to my husband yesterday, "First they poisoned me, now they are cooking me!" Oh well, we do what we have to do! I asked why 30 sessions, why isn't 25 enough? The radiologist oncologist said that is the protocol that was tested and worked. I wonder how long ago that was tested and why they haven;t tested 25 or any other #?
Keep Positive and Smile and Laugh whenever you can!!
Nancy
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I am back with an update on the coloring extravaganza. I used Loving Care with no ammonia or peroxide. My sister helped me...she had never colored hair before. I have very dark brown hair and the grays really show. The gray did not cover so well with this color but the color did take the the rest of my hair. We followed instructions and started with the gray areas first. We were tring to be so gentle so the process seemed to take long getting the color on. Once we finally got it covered in color we waited about 10 minutes before rinsing. The color toned down the gray but did not cover it....I am bummed, but it does look better. I did lose a lot of hair while putting the color on - no bald spots or anything - just a lot of all over shedding. I noticed it when I got up and saw how much I had on the towel covering me while coloring....it came out just from lightly combing through it while putting the color on. When I rinsed and conditioned, more came out but not as bad as when I colored. The rest of the day I did not have more hairs continue to fall down and hang on my arms like I usually do when I wash. I figure anything loose, must have come out. Today I did not notice any hairs falling after sleeping (usually I have lots of loose one's in the morning). I hope this may have gotten rid of the final shed....I am going to remain optimistic that there will be less daily shedding. I will keep you posted. Oh and it seems impossible to not get the color on your scalp doing this yourself. If you are super worried about that, I suggest a salon and have them use foils or something. We could not keep the color off my scalp the whole time..... I do feel better with my new color though. It's a bit darker than it was in the last photo but then again my color had faded since my last color done in February.
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Dexxy - I've been outside in the sun with my kids for the last month. I've worn a hat, and gone without one with the sun beating down on my head! Just last night, i put on a wig for a wedding. None of these has resulted in any extra hair loss. If anything, i find doing 'normal' things helps my sanity - sanity is good!!
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