Cold Caps Users Past and Present, to Save Hair
Comments
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Hbb, I am in your same boat...about to have TX 2 with TC on July 5 and am shedding like crazy. Every time I touch my hair more falls out. I don't know what the protocol exactly is except to not touch my hair! My scalp is really dry and itchy so I am wearing a bandana a lot to keep myself from touching my head!
From what the other ladies say, this should be the worst of it....right?
Not to get too spiritual but there is a verse in Bible that comes to mind..."don't be afraid, every hair on your head is numbered". Deep breath! It will all work out!0 -
Ladies, I am almost seven weeks pfc and have lost the most after my chemo stopped. I am still shedding and washing my hair as hbb said is very traumatic. The only thing I can say right now is I still have hair and when it finally does stop I will not be bald. I hope......
It is very disheartening, not only is it thin, it's gray, I can't blow dry it and it looks like crap. I wear it up everyday with a clip as when it's down it only looks ok the day of washing. I have been taking biotin, silica and iron, and I am still shedding especially on wash days.0 -
Leveled, I'm sorry you are losing so much, wish I had some other suggestions. Have you talked to Geralyn?
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Ladies,
12 weeks post chemo. Just took off 2 inches and colored today. What a difference. Still too thin to wear down but very nice with messy look up in a clip.... I am very happy and, surprisingly, emotional. I look 15 years younger....
The shedding continued for 10 weeks post chemo. lost the most hair after chemo was finished. I can report that I lost no hair today and even used a round brush for a little lift on a cool setting. I feel like I reclaimed a little piece of myself today.....
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So Ladies here are some things to ponder... Cold cap users are advised not to use products on their hair, other than a pH neutral organic shampoo, and a conditioner on the ends only. Not to cut the hair or color the hair before, during and for 6 months following chemotherapy. Not to use a hot blow dryer, curling iron etc. on the hair. Not to use a shower nozzle when shampoong/rinsing the hair. Can you see where I'm going with this? Do little as possible to the hair. It's in a fragile state. Time and time again I see women asking if they can color the hair, cut the hair, go swimming etc. Either they haven't been given the proper instructions or they are just tempting fate. What works for one person might not for another. sebm9 swam everyday(with no negative effects as a result) although this is not advisable because you would be pulling on the hair putting on and off the swim cap, as well as the chemicals in the water would not be good for the hair. It's a trade off of what you can tolerate or do without. For someone like sebm9 who swims daily it might be worth the risk. I realize your hair isn't looking the best it can while going through this-can't style, can't cut, can't color, but you have hair! Please treat it as precious.
@leveled-are you taking the recommended amount of iron? Was it low when you had your last blood draw? there are other things that can affect the hair-hormone blockers, Lupron injections, radiation, Tamoxifen all can effect the hair.
@Mamacath-They sell thin hair nets at the beauty supply that would let your scalp breathe more freely, yet keep your hair in place.
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Ladies,
I have corresponded with geralyn and I am doing all protocol as stated. I wash once a week, don't blow dry, only put conditioner on the ends, comb with a wide tooth comb, wash in cold water only,etc. my iron levels were never low but I am taking an extra 45mg of slow release iron daily as well as other supplements (biotin/silica). I did not need radiation and started tamoxifen two weeks ago. I am not sure what else I can do. It is quite amazing the emotional toll it takes somedays. I am also concerned that I don't see any new hair growth on my head. I have hair back on my legs, under my arms, bikini line and chin hairs.......all the places I could have done without.......go figure! Is there anything else I should be doing? Help...............0 -
@leveled-It looks like you're doing everything correctly. The Tamoxifen might be contirbuting to the shedding. It is an estrogen hormone blocker and estrogen plays a part in healthy skin and hair. This is why we wrinkle as we age-our estrogen levels drop. You can wash your hair twice a week, except on the week of chemo. On that week no sooner than 3 days before and after chemo. You don't have to use cold water. It can be tepid-neither hot or cold. That sucks when you get hair where you don't want it...Try not to worry, not everyone sees new hair growth right away.
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Soltantio: I just replied to your PM. But to any other swimmers out there: I went through chemo 2 years ago and used PCCs, I'm one of the earlier US users and joined this board on page 16!!! I have swum every day for the last 26 years, 1.25 miles. I was determined to swim throughout chemo, which I did with the exception of the four infusion days. Swimming is also excellent exercise to recover your arm, shoulder, and breast from surgery. It is one of the finest exercises to prevent lymphedema, according to my doctors.
I have shoulder-length, thick, curly hair which I love. My method for my swim was: rinse my hair til it's soaking wet in cold water before I put the swim cap on. Wet hair doesn't soak up the pool chlorine. My pool uses ozone instead of chlorine, which was helpful.
- Then put on a good thick cap (it took a little practice but I got really good at putting the cap on/off without it pulling my hair).
- Enjoy your swim!!! It took me about 50 minutes to do 1.25 miles; at the worst it took me about 65 minutes to cover that. I now do that distance in about 45 minutes, and have upped my swim to 1.5 miles twice a week. I think my body had been getting sick for a couple of years before I was dx'd, and once I processed chemo and rads, survived 1.5 years on tamoxifen and have adjusted to AIs, I feel magnificent. I'm in training for the Swim Across America swim in the SF Bay in September, which I did for the first time last yaer, raising $6500 for cancer research at the hospital where I work. It's a 1.5 mile open-water swim from the Golden Gate bridge to Crissy Field in SF; there are events across the country including pool swims and open-water swims.
- After the swim, gently remove the cap (I tucked my fingers under the cap and then spread them apart, lifting the cap off my head without pulling any hair), shower and rinse your hair thoroughly in cold water. I stood in the shower and let gravity and the water do the rinsing, without manipulating the hair very much. It's okay to apply some conditioner to help detangle and moisturize. Use only a large pick-type comb to comb your hair, always holding the hair at the scalp so you don't pul the roots, and work from the bottom to detangle.
- I gently wrapped my hair in a towel and pressed (not squeezed) the water out, then gently shook it out and combed lightly with my fingers, then with the pick comb, then let it air dry.
- I used the same combing/drying method on shampoo days. About three weeks PFC I washed every 4-5 days instead of once/week.
Btw, I did all of this after consulting with Frank and with his blessing. He helped me devise this swim protocol.
Swimming-- and any kind of activity and exercise -- is fantastic for you while going through chemo and beyond. Exercise is hands down one of your biggest tools in detoxing the chemo, keeping your body and mind healthy, maintaining good cardio, rhythmic breathing and breath control, and in battling recurrence of cancer. In addition, just having your head in cold water for an hour is excellent and slows the shedding and stimulating new hair growth!
I kept a baggie at the gym to collect any shed hairs from my workout. At the end of my chemo, I added the two bags of hair together and have maybe one sandwich size ziploc of hair loosely packed. It felt sooo thin to me when I was about months PFC, but man, you wouldn't believe how big and thick my hair is now. I was just thinking today I should send an updated photo. My hair was always wavy, but it is super-curly now and I love it -- it's like my baby curls but sexier :-)
During my swims, I always kept my water bottle at hand -- a good hard swim dehydrates you (just harder to notice you're sweating because you're in a pool of water), and you want to stay hydrated and continually flush throughout chemo, to detox and to keep your cells healthy and hydrated.
There were definitely days towards the end of chemo #4 where I had to talk myself into my swim, but I was determined to be able to say I'd swum through my entire chemo without missing a day (other than infusion days) and without shortening my swim. I did it! It was worth it. At the nadir, I didn't get the adrenaline high that I usually get, but my muscles felt so much better from the movement. And then I could feel my body bouncing back, and at about the 5-6 week mark my swims felt normal again.
In addition to swimming and hiking, I also took up weight training, took golf lessons, and resumed martial arts all while going through chemo. I've recently added pilates to the mix. I feel healthier than I have ever felt these days.
I'm biased, but I absolutely recommend PCCs and you shouldn't have to slow down your routine at all, in fact the more you can keep to your normal activity, the better.
Hope this helps!
Susan
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leveled: I shed for 5 months PFC before it slowed; I didn't realize it but new hair was growing throughout. Then, one day it suddenly, dramatically stopped shedding. At that point I resumed daily hairwashing and regular hair care. I was not prepared for how long I would shed and was convinced all of my hair would slowly fall out even though mentally I felt I had won the battle. (For some reason, back then, I thought it would stop shedding 3 weeks PFC...I think I was trained to think in three-week cycles, but the body takes months to detox the chemo.)
You are doing all the right things. Hang in there! It will end. Fwiw, I had a bear of a time on tamoxifen. I don't feel it affected my hair, but it definitely affected my mood and energy. I was thrilled this January to be able to switch to AIs.
Susan
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okay ladies please help me through my psychosis. I feel as if I'm losing large clumps of hair but at the same time I have very curly coarse . when you shed did yours come out in the same manner more like tangles in addition to individual threads? This is normal, right? I attribute this to the texture of my hair in that the loose hairs are gathering at the bottom and tangling with one another rather than just following out in singles. did any other people out there with curly hair experience this? Please HELP!!!!!!!
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Hbb, my hair shedding is very similar. I have tangles galour and when I comb it through even with conditioner globs of hair come out. One my hair dries I still shed all day but not as much, that is why washing is so traumatic. I wear my hair up in a loose clip and it seems to shed less as it doesn't get caught on anything. My hair is naturally wavey and I try to kind of scrunch it on the days I wash to get some body, unfortunately it only last for a day or two. I wish I had a better answer for us.
I think I am more concerned that I am seven weeks pfc and it is still continuing I don't have much hair left for it to keep going. I hope the end of this is near.......one day at a time....at least that's what I keep telling myself!
Thanks to Makingway,sebm9 and Laura5. I have to believe this to shall pass.........0 -
I have just completed 6 rounds of Taxtotere/Carboplatin using PCC. My hair is wavy/curly. During this process I found myself more aware of my hair. I had thinning spots around my temples noticiable to only me; in my eyes it was significant(after showing my friends they told me they would not have known if I had not pointed it out). I only wash my hair 1x week-tepid water, comb it once a day...on occassion 2x, I comb it like kid starting at the bottom working my way up, I wear my hair 2 very loose ponytails to help minimize tangles (if I hear pippi longstockings anymore I will scream) I have been taking biosil. I dont use any product--I do spritz it with plain old water. It is a tedious process but in the end I think we will be happy w/ the results. At the end our hair most likely will not be the same as it was when it started...but most of the hair will still be there....just my opinion
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Oh girls I felt the same way you did at this time last year. I felt like I needed medication just to wash my hair!!! I continued shedding for months post chemo and felt like the hair loss was significant. What I want you to know is I still ended all of this with hair. I did use some clip in hair extensions to thicken up my long hair as I felt it looked too thin down without them. I have photos in my blog. People that I have talked to that have seen my photos say "you were lucky...you had great results with PCCs". What I want you to know is that I was panicking and thought I lost lots of hair just like you ladies feel. I was no different and you can see my results. Have faith. If you are taking iron you must take vitamin C for it to properly absorb so make sure you take that too. Also remember that if you are washing only once a week that you lose a lot of hair all at one time. Normally if you wash daily you lose a little each day but now you lose it all on that one wash day each week so it looks.even more significant. I just tried to leave my hair alone as much as possible. I combed through it gently in the morning and then put it back in a thin elastic headband or loose ponytail. I did not mess with it all day again. Have faith....you will get through this. Hugs!!!!
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To all the shedders, I am in the same boat. I am 2 1/2 weeks PFC and I used the cold cap machine (cold ice water flows through the cap, no freezers/dry ice needed). I lost ~50% of my hair through chemo and if that wasn't traumatic enough, I am still shedding. I am African American with kinky fine hair. I primarily lost hair during wash day but I suspect that was due to my hair texture which held the shed hairs until then. I only combed my hair on wash days.
Anyway, my armpit-length hair is so thin now that I KNOW I will have to cut it or plan to never wear it down until the new hair catches up. And yes, I am STILL shedding. It comes out in strands and in clumps. I suspect that I lost the most hair after overly-aggressive scrubbing on wash day. So now I just pat the shampoo through my hair.
After all of this, I still have no regrets. I hate that BC put me through this but I don't regret using PCC. After all, thinning hair/50% less hair looks WAY better than the alternative. I'm glad that more ladies are mentioning the magnitude of the shedding as I was not aware/prepared for this when I started. Hopefully, future ladies considering PCC read these entries and adjust their expectations accordingly.
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I am a pcc rebel I guess. I used them almost 3 years ago. I shed...a lot. But kept a full head of hair. I got no direction with shampooing, etc so I used whatever I had in the shower at the time, lol. I also highlighted it and had no issues. I guess it's not advised, but everything worked out for me.
Soltanio, what about some of those Jessica Simpson clip in hair pieces? They might get you through some thin times for a fraction of the price. I have used them occasionally for fun, noone has any clue!!
Hang in there ladies!!!!
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soltantio, Frank discourages the use of wigs, as they heat up the scalp, something to be avoided during all of this.
I had just had my hair highlighted about 2 weeks before I found out about the caps. Frank told me this was probably ok (and it was) but not to cut my hair. I was very gentle when washing my hair. I barely messaged my scalp at all. After a while the chemo dries out your hair, so the once a week washing was not too hard to handle.
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My protocol is to wash every 3 days, except surrounding chemo. This is from Geralyn. Have they changed the protocol since you did the caps laura?
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I used the hair clips post chemo....not sure if they might pull too much during?
When I highlighted, I made sure I stayed WAY away from chemo dates so there was no uptake.0 -
dance, Maybe they have... I can't remember exactly, but I was sooo worried about losing my hair, I just remember washing once a week.
soltantio, Yes, Frank is the inventor. Cold caps have become so popular over the last year, that it may be hard to reach him. If you can't get a hold of him, email Geralyn (she is a past user and distributes the caps, and is very helpful). I don't know whether you have ordered your caps yet, but there is a booklet with a lot of information that comes with them.
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soltaino, the swim cap is fine. You have your head submerged in cold water while swimming, it is okay. Wear a non-porous one to keep the damp/wet hair chemical free (and fine to smear in a little conditioner first).
Susan
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I'm so glad to hear everything you all have to say. They really should discuss a different protocol for different hair types. The shedding is so traumatizing and I definitely think from now on I will at least rinse and lightly comb daily because the build up can not be good considering it causes heavy knots.
I think its a testament of our will to survive this!
Did you all find that your shedding was non stop or was heavier post chemo?0 -
I had my hair cut after second chemo as it had died from the chin down. My hair was passed my shoulders and it was falling out in mega clumps. After the weight was gone it was better but if you can keep your hair just pin it up. I had to cut mine as it just shed so bad I coudn't do anything without it going everywhere and it was horrible.
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Is it right you have to wait six months before you can colour your hair?
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Have just ordered henna cream dye, it says it can be used whilst having chemo.
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Re: Shampooing
Like tc9876, I have generally been gently patting the shampoo on my wet hair and basically squishing it through with more pats and some extra water before rinsing. Today I decided to carefully work my fingers through my hair after patting it on and then delicately gave it a real wash before rinsing out. To my surprise, it was fine. I actually lost less hair than I have been, judging by what was on the tub mat. It feels clean, there were no tangles and I was able to easily comb it out with my wet hair brush.
I do not use a wide toothed comb as the two I bought were literally tearing out my long hair no matter how I tried not to have that happen. My wet brush with its wide-set nylon bristles is easy to use and I have had much more success and far less loss. I can gingerly use its narrow end to "comb" through sections and I can even use only a few bristles at a time to pick a tangle apart with minimal hair loss. I do not brush through my long hair with it until I have first "combed" through it section by section, starting from the bottom, while holding my hand against my head at the top of each section to reduce any pulling on the roots.
I am curious, I have read a number of posts that mention new hair coming in wavy or curly. I have straight hair, will my new hair come in that way? Will I have a mix of the straight hair that stayed and new wavy hair? Does anyone know?
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My new hair is straight and long just like my old hair.
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I had the same experience Hortense. Geralyn told me that the roots need oxygen to stay healthy and encouraged me to wash my hair every 2 to 3 days (I do 3 days). Ever since she told me that, I decided to gently massage my scalp (and I mean gently) when washing my hair, to help bring more blood flow and oxygen to the area. I did not see a correlation between the scalp massage and hair loss. And my hair feels much cleaner as well and the scalp doesn't get itchy unless I wait too long to wash.
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ali68 - Thank you for telling me that and for replying so quickly. I hope my hair will come back in straight as well. I've been a bit worried about it and wondering how to manage if it didn't. Did you shed a lot after your last treatment, and for a long time? I'm reading posts by ladies who said they lost more afterwards than during.
dancetrancer - My hair and head feels much cleaner. I also gently massaged it as I washed simply to help the shampoo get all around. I plan to wash my hair again in two days so that I can have three days before my next and last T/C treatment.
Are you finished with your treastments or do you have more to go?
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I'm done! 3 wks PFC as of yesterday.
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I lost all my hair when having chemo and very little after. It started growing back very fast after 2 weeks last chemo. I was bald on top but now it is very long and full of hair. My eyebrows are normal now and lashes are back but not very long. I wash and blow dry my hair with no hair lose, Going to colour it with henna dye in a few days.
Watch this space for update- hehe0
