Cold Caps Users Past and Present, to Save Hair
Comments
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Continuing with hat talk, my hair is waist length, I'm using a silk bonnet to sleep. I just place it very carefully from front to back and tuck in the hair at the back, I feel it helps hold the weight when sleeping (I have heavy hair lol). It's not tangled when I wake up making easier to comb. Is this ok to wear for sleeping? I'm just so afraid I might pull my hair while sleeping and wake up with none. It normally happens when I sleep, I pull my hair with my back while lying down.
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Looking great tmb!!!
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TMB - I remember your PFC photo and it didn't look bad at all but your hair is really filling in now. I cannot wait to get there.
Regarding hats, caps, ponytails, etc. - Experiment carefully. PCC says not to wear ponytails but I have found that a gentle one keeps my hair out of the way, I play with it less and doesn't seem to cause shedding. At night I use two satin pillowcases on the two pillows around me. I also wear silky PJs. You will quickly discover what does and does not work for you.
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Just checking in with all. Good luck to all the newbies.....the ladies here are a god send. I too went to a Looking Good class after my 1st treatment.......3 other ladies, all lost their hair. One was wearing a wig, the other 2 caps. They asked about my hair and I told them about the caps. They showed interest, had never heard of it......all was fine.
I am getting ready to take off for spring break in 2 weeks. When I get back it will be back to onc for another CT to see if that 9 mm spot in the lung is still there. He put me on a round of antibiotics, said the radiologist sid it was too small to biopsy. The appt after the PET revealed the spot he said if it is there in the PET, it is cancer. Now, after the CT he said it is there, but I still dont think its cancer. "You are still on hormone blockers, in treatment. " Hope his change of tune is right.....
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Wishing you a wonderful spring break, School Mom, with many carefree moments.
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tmb - You look great! Your hair did so well.
schoolmom - Best of luck. You are on blockers. That spot may be something else and not be problem.
sweet mom - I also wore a silk cap, plus slept on silk cases. I did have some snarling during my heaviest sheds anyway.
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Re: snarling & tangles from shedding - sprinkle a good bit of dry cornstarch on the snarls- it's an incredibly silky powdery texture - and gently work it through the tangles with your fingers. Then, starting at the bottom of the tangle, or a section of one, use just the last row of a wet brush to gently work them out. It works amazingly well.
I'd forgotten about this trick until last night when it came in very usefully. My brother's girlfriend has just been diagnosed with a large brain tumor. It's believed to be benign and surgery is tomorrow. We are obviously all hoping for the best, but she had spent three or four days in a different hospital which allowed her very thick hair to become greasy and matted all across the entire back of her head. Her sweet college age daughter had worked on it for more than an hour the night before, inadvertently causing her mom good deal of pain and anxiety, upsetting them both, and cutting a sizable hank away in the process before she gave up. My brother arranged for a top hairdresser to come over last night at six to try to cut the rest out, then make the best of what was left.
I tried to explain about the cornstarch, but no one believed me, so once we had her set up and the stylist was unpacking his tools, I picked up a 2" piece of the mat and started rubbing in the cornstarch and to their utter surprise the lock I was working in started coming apart painlessly in my fingers. Her daughter was astonished and asked what to do, so I got her working on a near by section of the enormous mat. The hairdresser watched skeptically until he saw that we almost had half her head untangled. That made him a believer, so he dipped his hand into the cornstarch box and went to work with us. He soon had his half free of snarls too and could not stop remarking about how well it worked. Cornstarch powder will get everywhere, but vacuums up easily.
At no time did the three of us cause her any pain, in fact she said what we were doing felt good. So, instead of having to cut her hair off short, once we had it all swinging freely, he was able to cut her hair stylishly and she was given a gorgeous make over. He's a top NYC stylist and is about to be flown to India to do a wedding party.
She will be keeping her hair parted and in loose side tails or soft braids as long as she is in the new hospital to try to prevent any other mats from forming.
Believe it or not, I learn this cornstarch trick from our handlers on the dog show circuit long ago. It is used in grooming breeds with long hair like American Cocker Spaniels, which is what I had, Afghan Hounds, Yorkies, English Sheepdogs, Poodles, etc. to get tangles out without hurting them and it really works. The handlers use a inexpensive container used in baking for shaking on powdered sugar that has holes in the top to shake it on the spots they want it and use plain supermarket cornstarch which is found in the baking aisle. It makes great lemon bars too
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hello cappers! What a difference a year makes - 1 year ago today I just finished my 3rd chemo and today I ran the Disney Princess half marathon! Every step forward today I shed little of the past year...and as I crossed the finish line, I carried you all with me in my heart. Just want to say it does get much better, one day at a time!
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Schoolmom, hope you're able to relax, enjoy and forget about your troubles for a while. We've had so many snow days this winter that spring break has been chopped from the schedule.
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Hope, what the heck is the Disney Princess half marathon? Do all the runners dress like princesses? You look so cute!
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Hope, you look adorable! Running a half marathon 1 year post chemo - you give others hope indeed that life gets back to normal!
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Hope - And your hair is in a ponytail with a tiara!
Cappers - I don't recommend tiaras until the shedding is over!
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starting chemo on Tuesday!!! So nervous and anxious - any tips that I need to know???? Thanks so much!!!
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Hope you look amazing! We still need to do lunch girl!!!
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2-boys, I think you'll find the actual infusion not nearly as scary as you imagine. You'll be so busy obsessing about the caps you won't pay much attention to anything else. That's a good thing. Good luck tomorrow.
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Hi Ladies,
I am so pleased to know that there is a way to save your hair during chemo. I have just completed one round of chemo and my hair is shedding like crazy. Is it too late for me to try cold caps?
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Wow Hortense, as I am reading this board, i am pulling on a tangly section of my hair and loving the corn starch trick. I wish I knew it about 3 months ago! Thank you.
2boys - don't stress too much but just try and stick to the protocol. You'll be fine.
Tmb - it look great! So happy for you.
Any new cold cappers? Ask away. So many helpful tips on this board. And so many happy cappers! Good luck.
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seaniebopp - Unfortunately the protocol calls for using the caps each time. Typically a lot of hair is lost in the first month. I don't know what chemo drugs you're receiving. Some women have used the caps to try to encourage regrowth. We're trying to get the word out so that women know about the caps before starting chemo and can make an informed decision about whether or not to use them.
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2-Boys, jc is right:
"I think you'll find the actual infusion not nearly as scary
as you imagine. You'll be so busy obsessing about the caps you won't
pay much attention to anything else. That's a good thing."I wanted to puke every time I thought about someone putting toxic chemicals into my body but with the activity of constantly changing the cold caps and concern of doing it exactly right and the coldness!!! I hardly had time to think of the nasty stuff going into my bloodstream. The time went quickly! The worst is I had to wear the caps for 4 hours after chemo.
Good Luck, hope it's as anticlimactic as it was for me. Breathe deeply, try to relax, watch a funny movie, have a good day today!
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I am starting Chemo next week and am still undecided on whether or not to use the Cold Caps. Trying to figure out if it is worth it and if it will even work. I am having the harshest chemo...Adriamycin, Cyclophosphamide, Taxol (act) and have read that this has the worst success rate. I don't want to deal with it if I don't really have any hope of keeping my hair. Also, would love to know what you all think about the risks to the success of my treatment if I use the cold caps. I had a smallish tumor 1.2 cm that was Estrogren Receptor Positive at 98%, Progesterone Receptor positive at 37%, HER2 negative and K167 - low at 4%. What do you all know about this?
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Well said, Miche!
2-boys, the waiting is so much harder than the doing- you got this, you'll do great.Hope- thanks so much for sharing. Just what I needed to get me through the halfway mark. Here's my hair right now..looks like crap but still on my head! Have a great Monday, everyone!
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seaniebopp - I am so sorry. It is too late to begin. Capping has to start with the first infusion in order to protect the follicles. I truly wish you had been able to find out about them in time. Best of luck with your treatment.
Summer70 - Your hair looks wonderful, not like crap. You still have it and it's thick and healthy looking and you are not bald. All good things! Congratulations!
mfm48 - I am so glad the cornstarch is working for you. It worked a miracle the other night getting out my friend's massive mat and saved my hair when I would wake up with dreadlocks from shedding.
mitzro - I believe there is someone on here who seems to be using caps with ACT successfully, but in general I think it works more reliably with T/C. My oncologist who has had over 50 women use cold caps and who is taking part in the Dignicaps trial currently, told me last year that scalp cooling is not as effective with ACT as T/C.
If your oncologist is saying that you would benefit from chemotherapy, you probably will. Have you gone over your percentages/chances of recurrence with him or her? I had a small tumor also, but based on my profile and on the results of my oncotest, it was worth it for me to have chemo, radiation and be on Arimidex afterwards. You might post a new thread with your question on it. I am sure you would get answers. Good luck!
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Summer your hair looks awesome!
Mitrzo - did your oncologist explain why he wants to give you the harshest chemo? What makes your tumor more aggressive? Did you have an oncotype done? Positive nodes? The fact that you are ER+ and HER2- with a low Ki67 indicates a less aggressive tumor - BUT - oncotype and node information is required to truly assess your risk of recurrence.
You asked about "the risks to the success of my treatment if I use the cold caps". Cold caps will not affect the effectiveness of chemo for the sites where breast cancer likes to spread to (bones, liver, lungs, brain). Some note that it will reduce the amount of chemo going to the scalp - so yes - it will reduce how much chemo protects your from scalp metastasis...but the risk of metastasis to the scalp from breast cancer is soooooooooo tiny - less than 1% risk the last time I checked. I was willing to take that risk versus the 3 to 6% risk of permanent hair loss that occurs occasionally with chemo.
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Summer - You're hair looks like you never had chemo! Very pretty hair.
Mitzro - Should you decide you want to try the caps and you use the Penguin Cold Caps, you'll rent them by the month and then if it turns out not to work well for you, you can return them with no further obligation. If you decide to try the capping, I would suggest moving quickly to get your supplies in time.
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Summer, your hair looks beautiful!
What do you for itchy scalp and dandruff? A cold capper friend suggested a rosemary or chamomile rinse but I haven' t tried it yet. If I could only just really shampoo my scalp!
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Thanks, all- my hair is definitely frazzled so it might have been a case of good lighting
. girlwithacurl, my head is constantly so bleeping itchy, I may be the wrong person to ask! No noticeable dandruff so far. I use Jason shampoo and Bamboo anti-frizz conditioner on the bottom half of my hair. I also put a little bit of Sea-Chi organics on the ends every few days. My hair is way too dry to make it without conditioner. I just try to not touch the crown of my head with anything & so far it's been ok.0 -
You are all so awesome. I guess I left out a very important fact. At the time of my lumpectomy they did a Sentinel Node Biopsy and found cancer in 3 of the 4 nodes they biopsied. I then went through an Axillary Dissection and they found 3 more nodes infected out of the 17 they removed. So, a total of 6 nodes infected. So that is why they are going with ACT. I am leaning toward the Cold Caps because that seems to be my biggest fear right now....losing my hair! Seems silly and trivial, but I know you all understand. I did speak with the Cold Cap rep and she says she can get them for me in time.
I would like to start a new thread to ask about people who have had ACT and used the Cold Caps. I think I will try that, but would like anymore input that you think is relevant. I cannot believe how informative this has been. I wish I would have hopped on a few weeks ago. I have to admit I was warned against going online too much because it can scare the bejesus out of you, but this has done just the opposite! I have found the more info I get, the better I feel and I agree...it will be good to just get on with it. Thank you!!!
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Mitzro - Aha, yes that information is helpful indeed in understanding why ACT is needed. And, you are not being silly at all. The caps gave me back a sense of control over SOMETHING, ANYTHING - at a time in my life when everything seemed so out of control and like I was losing so much.
I also found researching online to be much more helpful to me than damaging. Again, I guess it gave me a sense of control.
Yep, I'm a control freak, I guess. LOL!
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Summer I agree, your hair looks amazing! I thought I read somewhere that you had a list of items I should have on hand before starting the Cold Cap process. Can you share with me as well?
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Mitzro, dancetrance is so right, we all COMPLETELY get it! So great you are going to join us, everyone here will be cheering you on. Are you at a facility with freezers or are you using dry ice? I imagine you can call a nurse's line to find out. If you are at a center that doesn't generally recommend the caps don't expect your doctor or nurses to be overly enthusiastic or supportive. It doesn't matter, just keep going. A lot of the women here (me included) have found they'll turn their attitudes around when you keep showing up with hair! As far as general items go, you will need; moleskin for your forehead (you can buy it in a roll and cut it to shape your head, leaving about 1/8 an inch from your scalp-it has adhesive backing.. don't put it on your eyebrows unless you were planning on waxing them), pantyliners for your ears (I actually use the 'bladder control' type liners- a little more padded
), a heated blanket, an infrared thermometer (measures at least -40), lots of liquids to chug (peppermint or ginger tea warms you & helps with nausea), satin pillowcases for sleeping & a wide-tooth comb to replace your brush. Like many, I take biotin supplements & silicea (gel form) daily to help with hair & nail strength. That's all I can think of at the moment but if you scroll back there's a ton of helpful hints from veteran cappers on here. One more... personally, I find an Ativan & a painkiller 45 min or so before the first cap makes things much more comfortable! Maybe why I've never experienced the ice cream headache . If you are using dry ice, we'll all have lots of tips for you, too .0
