Cold Caps Users Past and Present, to Save Hair
Comments
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MJPow--Wow, your hair looks great!!! Will be sending you good wishes throughout the next round with Taxol.
Hangingin--I know that photos can be deceiving, but I agree with GoKale--it looks like you still have lots of hair! I'm sure it is relative to where you started, but I think my hair was medium at best when I started this process, so it looks like you still have a good head of hair. Maybe a style consult would be helpful? I purchased a wig as my Plan B when I first started. The shop is attached to a hair salon, so some of the stylists are knowledgeable of working with women who have lost their hair through chemo or other reasons. If you could find a similar situation, it might help you feel better about what you have, going out, etc. Thinking of you!!
Elastogelgirl -- so happy to hear that your surgery is behind you and that it was a better process than you originally thought. So sorry to hear that you've had so many SE's, but here's to all that new growth you are having!
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ykh. Agree if you can get thru the first 10 min you get used to it. I tried Tylenol but got no relief. The best thing was Ativan for anxiety. In my case I got more anxious the longer I had chemo. I was much more anxious for the third chemo than the first. Probably because I knew what to expect. Cold caps weight a lot. Rest your head back on the lazy boy lounger chemo chair. Sometimes I got a real bed at the chemo center and that was even better. Your neck is really going to hurt from the weight
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PatinMN, GoKale4320, and FastGirl,
Thanks for the comments on my hair. It may sound like I'm fishing for compliments but what I am doing is recording what my hair loss has been like for what I understand is the worst chemo regimen they can give anyone.
I had dose dense A/C every 2 weeks for 4 times, followed by dose dense Taxol every 2 weeks for 4 times.
I used Penguin Caps knowing it was a gamble. I started out with VERY think wavy hair, and I think I would not have any hair today had I had thin hair to begin with. So hopefully others will not lose so much of their hair and for this long. Still waiting for shedding to stop. I have surgery on Wed. April 26 and would like the shedding to stop in the next week or two. I don't think I have any new hair growth yet, besides a little at the top of my forehead, which I understand comes in first.
I'll post before and now pics on this post for comparison.
before chemo Nov 2016 studio pic
almost 6 weeks PFC.0 -
Hangingin, from what I can tell, no one is going to know you're been through chemo. I think your hair looks pretty darn good for all the chemo you've had. I know to you it's different, but I'm not even seeing thinning. You're a real success story for AC+T!
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Hi all,
Thought you might be interested in this new research news story!
FDA Approves Marketing of Paxman Scalp Cooling System in United States
April 20, 2017
The Paxman Scalp Cooling System has received FDA clearance. Read more...0 -
MJPow and Hangingin,
How did/do you wash your hair? Penguin recommends to dilute a capful of shampoo in a bowl of tepid water and pour it over your head. I am not sure if I Iike this method. Also, do you use a conditioner? My hair is curly and can be tangled easily.
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Almost all of my hair that falls out has a white bulb at the end. So this morning, I wondered if this meant these strands would never regrow so I googled it. I can't find anything that is from a reputable source - but it sounds like the hair will regrow if the bulb comes out - will just take a while. So the bulb is not the root and the root is still there. Can anyone comment on this?
Hanging In - I did not mean to diminish your concern. At 6 weeks post chemo, I believe your hair looks great. I read that it takes 8 weeks to get all the drugs out of the body so maybe your shedding will end soon. Best wishes to you on your upcoming surgery.
Elastogelgirl - no drain? Amazing! I had a drain for 2 weeks after a lumpectomy. So glad your surgery went well.
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Moderators, thank you for posting this!! Glad the FDA is seeing the light about preserving head hair for chemo patients. Yea!!
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Hello!
Hangin - thanks for your update and your hair looks normal and should provide comfort to those of us having the same protocol.
YKH - I used Penguin and just took a shower but turned water to cool when washing, rinsing and turned the pressure down to a minimal flow. I gently rubbed the shampoo on the top of my hair. I took 2 Tylenol and an Ativan before each capping session. First 5 minutes were cold but got through it.. good luck.
MJPow - You look so good.. pretty girl!
Congratulations to those who finished!
I am 12 weeks PFC and as a reminder I had AC&T infusion with DD Taxol. I lost 75% of my hair but never had to wear a wig (shopped for one) and didn't have bald spots. Just all over thinness. At 3 weeks I cut 1 1/2 inches off. At 8 weeks PFC I cut 2- 3 inches off. I had an ombré with brown on top and golden blonde on the bottom. I cut all the blonde off. I did not experience additional shedding when cutting my hair. My shedding actually seemed to decline.
Yesterday I saw a color specialist who has experience with PFC hair. She colored my hair a richer light brown, my natural light brown is mousy. She also balayaged some blonde highlights. She said my hair is strong. It would hardly lift with the highlights. She said the key to coloring at this point is using OlyPlex. I had read a lot about it and it has amazing reviews she had me sit with it on my hair after coloring for awhile. My hair is shiny and has a little more, not a ton, body. I have TONS of regrowth all over my head 3 inches.. my hair grew during treatment. My hair is not normal to me and someday I'll go back to my golden blonde but no one would know I went though anything.
My eyelashes are back, so long and full and last week I got my eyebrows conservatively waxed and plucked. Who know what will happen, they may all fall out again but just being normal for a few weeks helps.. I have used Latisse every night since PFC.
Most important for me.... I finished 35 rounds of radiation last Thursday.. The redness has almost disappeared. My symptoms during radiation were redness and nausea. I lost 12 pounds during radiation.
This post is to help those starting, in the middle or ending, to know my results in this experience.. I feel good and the numbness in my feet is almost gone. I still like to take a little nap everyday but I have done that my whole life ☺️. Fight on ladies and happy hair days!0 -
Luvmyys- this liberty bell is for you! Congrats on finishing radiation, chemo!
GoKale this bell is for you too! Way to go done with chemo yay!
LuvmyysSo happy for you! You must be feeling great! And great news on the regrowth and getting to style your hair! Fantastic news! So very very happy for you. Congrats
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Congrats GoKale!! Let the healing begin! I used Castor oil on my brows and lashes--still am but haven't tried anything on my scalp yet. I just ordered some vegetable based hair color online. I'm just scared to do anything to this hair. I washed it this morning and felt I got a lot more than I should at this point. I'm almost 14 weeks PFC.
ykh--I bought Tylenol Migraine for the cold cap. (Also took xanax on those mornings).
Hanging--I know what you mean about losing a lot of hair. Upon looking at me, no one can tell but when I wash it or grab it in a ponytail, it's 50% less than what it was. It is STILL coming out with combs. If a normal person loses 120 hairs/day. I feel I'm 100 more than that. Not horrible, but still more than I would have thought for 3 months out. That is why I'm holding off on coloring. When I feel my hair is strong enough, I'll do it but man, my grays are crazy at my part. But as I always say, gray hair is better than no hair! But you look great to us. That's what we did this for, right? To look "normal". I know it's not YOUR normal, but when you see the alternative, you realize all is good.
Luvmyys-- Congrats on being done!! I'm 2 weeks ahead of you so it's encouraging that you colored your hair with no problems. I had 4 rounds of TC, which is less harsh than AC but still warrants all my hair falling out if I didn't cold cap. I have at least an inch all over of regrowth. I'll have to look into OlyPlex. My hair looks and feels dry. I usually have light to medium brown hair but its faded to a brassy, orangy color towards the ends making it look dryer than it is, on top of needing a trim at this point! I'm jealous about your lashes. My brows and lashes are in but have another couple weeks before they are the length they were in November. I just hope they don;t all come out like a few people said they would. I guess they are on the same growth cycle now. Anyone heard of this? I really don't want to lose all my lashes again!
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Luvmyys - Congratulations on being done with radiation! So happy to hear about your good hair results and feeling better. It does give hope! Thanks!
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GoKale4320- I had no drains! My surgeons (I had four, 2 interns) my primary was a board certified breast specialists at Stanford. Had no wire guides. Savi scout is an alternative to wire localization,, a little reflector inserted into the tumor(s) to guide the surgeons..less scary and not Barb-aric! Not painful just scary like the biopsy.
My story sorry if I'm repeating this....I put some repetitive photos in too. Mostly for newbies.
All would have been very different for me surgery wise if had I done my surgery first and locally in my home town. My first two local suregeons were going to take my nipple and no plastic surgeon standing by or reconstruction. they did mention they would put in drains, I'm loving no drains! . They both made mention of taking 20-40 axillary nodes! My Stanford surgeon took 7-10 nodes.... Part of the reason I chose chemo first was the scary surgery! I know I'm lucky no mastectomy!.... please don't be mad if I'm being a whimp in comparison surgery wise. I feel for all here who may not be so lucky. My breast lift and plastic surgery was covered by ins. They also removed my port without cutting it out seperately,I believe they must've pulled it out thru my nipple incision?
We did a load of interviewing and studying before doing any treatment. I even started chemo just to get going on killing the cancer! I changed oncologists and cancer centers when I found a better fit. I basically fought getting standardized treatment the whole way thru... Had the one one chemo then started running around looking for better answers!.....I pray my margins are clear now since fewer nodes removed. I had two large palpable almond sized lymph nodes that shrunk to 1/3 the size during chemo...my breast tumor all but disappeared it was tiny but was very close up to my nipple.
I did have a plastic surgeon in addition to my breast surgeon. I had a lumpectomy and 7-10 axillary nodes removed in my armpit. I had and equal amt of breast tissue removed from my healthy breast and a full breast lift. No drains anywhere! No drains a New thing maybe?
I did a fasting mimicking diet before and after each chemo. I fasted a total of fifty days during my chemo winter. Google 'fasting before chemo and Dr Longo'. Short term Fasting may or not be good for hair, it's all about not damaging normal cells with chemo! Fasting puts cells into hibernation-slows cell division except for the cancer cells which get targeted even more agressively. I feel my side effects were reduced so much so that I was able to ski all winter. Lost weight at first ...doing five day fast mimic then 9 days of eating everything in sight. Toward the end I was gradually gaining weight in between... a couple pounds per time ..my body got used to the fasting. We all adapt!
Fast mimick is 500 cals a day of mainly veggies..almost no carbs
Adaptation to new look and new you is key!
Hugs all
E
PSS
As far as cold capping I did the hardest ACT (DDtaxol) chemo for cold caps. I lost 80 percent of my hair. I don't need a wig with the help of toppik. It's not my normal look I had a mane of think long blonde highlighted hair. Now I have a Greyish mouse troll look. Would I do cold caps again? ABSOLUTELY, I get hot flashes from chemo- pause almost hourly...and having nothing.... no scarfs etc on my head is such a relief when I get hot I start ripping things off, so a wig would just fly off me instantly...I love that I still have hair! I think it hideous though.,
I'm 4 weeks pfc and my hair stoped shedding and has started growing brownish grey baby hair. It's filling in so quick I think I'll not be need toppik very soonish!
These photos below are before and after toppik. The last three are with toppik...med blonde and brown mixed. I leave my toppik in all week until wash day. The toppik can clump.
The first one is clean hair...as we know it gets worse before wash day!
Keep in mind I wore hats, ear muffs, and scarfs and a few helmets all winter too! A big no no. I sweated and my head got hot when I skied. I needed to ski!
E
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gokale, congrats on finishing rads.
Luvmys, congrats on cutting your hair and being able to style. How short did you go? My hair is so dry and troll kicking and crazy thin you can see through the hair that hangs down. I'm ready for a cut but unfortunately it will have to be a pixie cut. I'm thankful not to have bald spot so juat extremely thin hair. I'm 37 and the hairbrush growing in is grey, so im sad about that but all can Be fixed with hair dye.
Good luck to those still cold capping. I normally shower and use a cup to rinse my hair with colder than warm water. I dab shampoo just make sure to massage scalp a bit as this promotes circulation and that helps with growth.
Hugs
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Hi Hopefull - on the last cut it hit half way down my ear. Just enough I could tuck it behind my ear and it looked ok. That was 4 weeks ago and it's already 1/2 inch below my ear. It was so stunningly short for me and so dark but I got used to it. She cut it a little yesterday but just so the layers looked purposeful.. I kept the length but I have all different stages of regrowth. The worst is a patch right on my forehead that is about an inch long and it hangs straight down. I have to blend it in.. I lost more on one side in the temple area. Maybe how the cap fit.
The thing is, once I cut it off, I was done worrying about it. I knew there was nothing more I could do to make it look better. So no pondering about "well maybe I should just cut it off". When I cut it, I was done.
Now that I've ventured into coloring it.. well that opens a whole new realm of possibilities. It's still very thin and no where like my old hair but with some makeup on and the right outfit, I feel can pull it together enough to feel good about how I look.. I never thought I would feel that again. I know I'll have a full head of hair again and one day probably complain about it being too thick or too long but I've earned it. 😉
Thank you all for well wishes...0 -
ykh- I found all my info on this board about shampoo and conditioner. I bought the acure hydrating shampoo and conditioner. I also bought the United 7 seconds leave in detangler. I also bought hask macadamia oil moisturizing conditioner.
I have naturally curly hair that tangles so easy so what I do is braid my hair and the water pressure in my shower is awful but I turn it to cold and wash my hair off quickly then shampoo it then I put the conditioner in my braids and a little bit above but not on the roots. When I get out I wrap my head in a towel and let it dry a bit then I spray the detangler in and use a wetbrush (amazon $8) I can't use a comb it yanks and won't go through. I put it back in braids throughout the week I spray the detangler In my braids.
Penguin says no braids but it's working for me. I only wash 3 days after chemo and then 7 days later so 4 days before my next round.
I am going in for round 4 of AC on Wednesday I would say I've lost 20-25% so far my braids are thinner but nobody else can tell.
Hope that helps!!
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MJPow, which conditioner do you like better, acure or hask macadamia oil moisturizing conditioner?
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jkh
Hair protocol was I washed once a week in the sink in lukewarm water. I both dipped my hair in the water. And used cups of water to rinse. I first started using baby hair shampoo until I realized it had some of the ingredients I was not supposed to use.
Then I ordered Acure shampoo and conditioner from amazon. I ordered the hair healing conditioner. I only used the conditioner a few times before giving it up. It takes a tremendous amount of rinsing to get it out so I gave it up. I used a children's detangling spray daily before combing it. I'm sure that in not protocol with the detangling spray. I did not look for another conditioner other than Acure I bought. But now I might. I slept on silk pillow cases. I had surgery yesterday and I'm sleeping on a wedge with silk pillowcase pillow.
I have a large. What you might call an Afro comb that I comb with my hair once a day except hair washing day. I squeeze my hair dry then put a light towel turban around if for awhile to get it dryer. The detangling spray then comb very carefully. I'm still losing hair daily 6 weeks PFC. I never twist my hair or blow dry it.
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Well today's the day. I'm 18 weeks PFC today an I'm going to get my hair colored and a few highlights put it. It probably won't help my mullet that's growing in on top but I think it will make me feel better.
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Whoo hoo!! Do you feel like your shedding is done kshorten?
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hi all,
I'm 5 weeks PFC stopped shedding 5 weeks ago...I lost oh so much hair three weeks before that, I feel like that was just the whole shed and what I have now is here to stay....it's not pretty.
I really want to do a henna color rinse is this a No-no? My bald is filling in a bit. I'm one week post surgery. Doing good, my arm is on fire from pit to elbow...worried about nerves there.
Thanks, I get almost no hair loss post wash or combing.
I'm taking viviscal I think it is working!
Ideas?
M
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Here it is with the highlights. My mullet wasn't long enough for highlights yet so I guess I'll be wearing my topper for a few more weeks until it gets just a little longer.
Pamela23-My shedding has almost completely stopped so hopefully doing this won't cause a set back. I hope it doesn't.
Elastogelgirl - I absolutely believe that the Viviscal works. I'll have to find my pics from the beginning of March when I started taking it.
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The first one was taken on March 6th and the second one on April 21st. No sure I would have this much hair without the Viviscal.
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Hi kshorten,how long PFC did you wait before cutting and dying your hair. It looks great by the way.
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Hopfull2 - I waited 4 months for highlights, had a trim around 2 months. Thank You!
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ykh -I like the hask smell and feel bette
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kshorten- thanks for the pics! Hair growth pics are awesome! I'm a viviscal believer for sure now! My hair is def filling in already. Aren't you glad you cold capped..where would we all be without our bangs?
Love your color now too! Looks great you sure had some patience with the waiting 4 month pfc for color?
Not sure I can wait much longer to try to do something about the scraggly dark and grey coming in and the troll dry blond ends look....especaailly since my brother told me Three times in emails that I should shave the dead hair and start over. He just doesn't know what the new grey scraggly regrowth is all about and that my hair doesn't grow all shiny blonde like i had it with all the money I spent getting it to look like it did when I was twenty. He just thinks it just grows like that. Plus he came to visit me in post op when my hair was all flopped over showing the bald. He hadn't seen me like that and it freaked him out. I only saw him one other time since diagnosis. he surprise visited us in the hospital. He's only seen nice photos of me all winter with the toppik and all.
Is henna a no no? I'm really close to doing something..my hair is not falling out at all so Im feeling brave about trying a color rinse of some sort. Only 5 weeks pfc is awefully early I know.
Hugs c
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kshorten, your hair is amazing. This will motivate me to remember to take the Viviscal that ordered. I didn't take it around surgery, no excuses now.
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Hanging in, they say it takes 6 months to see a difference but obviously it doesn't take that long. And thank you, hopefully my mullet will grow out soon.
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Hello!
Kshorten - Your hair looks great. Congrats on making the leap to color.. I do believe the Viviscal works...
These are my lashes 3 months PFC. I used Latisse every night since last chemo... no mascara.
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