Cold Caps Users Past and Present, to Save Hair
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Welcome to the BCO community Pierces2002. We hope you find value in the support and information that so many share here from their own experiences. You may want to check out this link Cold Caps with information from our own website. Keep in touch. The MOds
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Pierces2002 - do you know what chemo? 4 rounds is often Taxotere and Cytoxan given every 3 weeks. Both chemo's are hard on your hair, but there has been many success stories with the Cold Caps and that treatment. If you post which treatment your MO is suggesting, the amazing women on this site w/experience with it will reach out!
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Hi all it's been a while...to recap, I did 3 rounds of Taxotere/Carbo then had to switch to Taxol (6 rounds) because of my port infection. Anyway, I didn't lose much hair during chemo....but really started shedding in the 1-4 months after chemo ended. I am happy to say my shedding has greatly slowed down....prob to normal shedding now....it is just over 4 months since end of chemo. I had my first haircut since July 5th last week. Here are pics of what 30% hair loss looks like. Luckily most of it is underneath. Though I do have 2 inch sprouts of hair all over my head. It's amazing what a haircut will do....my hair looked so long dried out- thin and scraggly before...not that it looks that great now...just a lot better than before.
So for those starting cold caps....don't worry they work!!! Expect to lose hair, but hopefully you will never have noticeable bald spots (maybe above ears and underneath where the caps don't fit as well).
FYI - My profile pic was taken in June 2014- a month before I started chemo...to do a comparison.
Cold caps were expensive and a major effort to use....but I am so thankful that I was able to use them.
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Thank you for posting and for encouragement, Jennliza. Your hair looks great.
Would you mind telling me - when they switched you to Taxol, was it weekly? And if yes, did you wash your hair just once a week?
I just started weekly Taxol for 12 weeks and I cannot stand not being able to wash my hair for a whole week.
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BB - I did weekly taxol and my hair was so greasy that it looked wet from the roots to my collar. I then switched to washing twice a week. I had infusions Wednesday. I would wash Saturday morning and then again lightly Sunday night. One wash justo wasnt enough to clean all the grease. I used Giovanni Tea Tree Oil therapy shampoo. It's a clear shampoo- so better for oily hair than milky shampoos like Dermorganix.
Jenn- you look amazing. The cut is beautiful and you can't tell you lost any hair. It's time to exhale, stop holding your breath. Your made it
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Jennliza your hair looks great! Glad to hear that the cost, time and effort was all worth it. Love to hear these stories & see pictures when I'm so new to this journey. Thanks for sharing!!
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thanks for your kind thoughts everyone!
Did finish my last chemo, it's emotional. Such a long road so far. I cried hard when we took that last cap off. Today I'm starting to pack them up. Had to take the babies for their two month shots and check up today. They are both doing great. Around 10 pounds at 2 months, from under six at birth.
Getting ready for a well deserved nap now. Surgery still on the 31st. Goals for that: Cut this Cancer out, get small perky boobs whose nipples point toward the horizon at least, if not a bit toward the sky! Now they almost tuck into my waistband! Haha! A hot water hair wash in three months, and bleaching the $&@€ outta of it when I can. I know PCC recommends three or four months until hair coloring, but what about vicious bleaching? Any tips? Six months? Argh. Just see how much PFC shedding i do, and give it at least three?
Wow, just wrote PFC for the first time. Awesome feeling. You did your job my friend.
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BB - I was switched to Taxol in Sept...it's a kinder gentler chemo than TC. My MO was afraid I would end up back in the hospital. I did 6 taxols weekly.
As for washing I tried to wash my hair only 1x/wk (beauty without cruelty rosemary tea tree oil)...at most 2x/wk during chemo. I shed waaaay more post chemo...so was strict about washing only 1x/wk until recently...but still try to only wash it max 2x/wk. I still don't use a brush...but i do use a straightener. I am not going to color my hair, but may use a gloss (if I can find an organic one) since the chemo took away any shine my hair had. But as Daniella says, I can finally relax a bit....shedding slowed and hair is growing!
Oh...if any of you need to decide about breast implants...go for round not teardrop. I have teardrop and need a 3 reconstruction surgery because one keeps on shifting. First surgery 11/25...by NYE...my right implant shifted. 2nd surgery 2/10, replaced my right implant...it shifted again....and now PS wants to remove both implants and replace with round. Waiting on insurance....
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JennLiza - beautiful results!
Gatomal - I waited 6 months to do highlights since bleach is so much more damaging than color. Oh it was heaven to get back to blonde!
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Congratulations, Gatomal! You are an inspiration!
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congrats gatomal!! Feels awesome, right?
Jennliza - looking beautiful. So happy to see a July sister here and doing well :-)
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Gatomal, you are really an inspiration. It's been a really long road for you and your sense of humor and positive attitude have really made an impression on me. Congratulations. Enjoy those babies!
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Yay Curly and Gatomal for being done!!! It only gets better from here. JennLiza you look beautiful! To our cappers still in treatment and still shedding, hang in there, soon it will be you crossing the finish line -- with your hair!
Pierces, I sent you a private message, I'm happy to talk with you.
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jenniliza, you look beautiful! Your hair looks great too. Would you say you lost 30% after final chemo? Scary. I'll be on the boards still looking for everyone's old posts. Just want my tender scalp to stop hurting, it's been like this for three weeks. I can't wait to get a haircut!
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ok so I have made it to day 21 and I still have about
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Today I finally got to wash my hair first time after the first cap use. I was almost afraid to do it, I probably used too much shampoo. I did use cold water and tried to be gentle - normally I scrub my scalp. I put it up gently now in velcro rollers, but not being able to use the heat to style it, I don't expect great results, because I have to head out to doctor's appointment soon. However, it feels so good not to have the grease in my hair.
I'll probably be more nervous couple weeks down the road when it starts shedding.
On another note - I had such a nice dream last night. I dressed up nicely, went out on a date with my husband, didn't miss any body parts. And then I woke up.
Have a nice day, fellow cold cappers!
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Velcro rollers were a bad idea on my part. I couldn't get them out of my hair. Now I will be obsessing that I did irreversible damage to my follicles by pulling.
Did any of you make a similar mistake? Help, please.
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oh crikey! I just ordered some Velcro rollers! Maybe I'll just use them toward the ends...
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BB, I don't know if this will work for you or not depending on your hair's length but what I've been doing after shampooing or rinsing is to use either a leave-in moisture creme or moroccon oil then gently comb through to distribute evenly. Then I take small sections of hair and gently twist it alternating towards my face and away and continue until all of my hair is twisted. Then I leave it to air dry. About 4 hours later, I have beachy-type waves that I can finger fluff for some volume. It's definitely not my "normal" look but is quickly becoming my new normal. Also, maybe try foam rollers instead of velcro. Probably easier on your hair. Good luck. One more thing I'll mention since I know the not washing drives you crazy. I do rinse my hair gently in cold water every day followed with moisturizing conditioner to the ends after I work out and even though I don't use shampoo, I feel like it keeps the grease at bay. Good luck. Hang in there.
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Angiel, when you're done twisting your hair, how do you fasten it, so it stays twisted? Do you pin it with bobby pins to your scalp? Won't it pull on the roots though?
I definitely have to switch to foam rollers, if I'm going to use any. I don't know what possessed me to think that velcro ones were going to work well. I'm really, really nervous that I did a lot of pulling trying to take them out of my hair.
I may try the rinsing method, without the shampoo.
How long does it normally take before chemo starts drying out the hair?
Thank you,
BB
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BB, congratulations on making it through the first hair wash! That was a terrifying experience for me as I was sure I would see all the hair just wash off my head LOL.
I did use the velcro rollers - what I did was to first blot my hair with the mens t-shirt and then I gently combed it with a wide pick. Then I used my blow dryer on low and cool setting until it was just a little damp. I then carefully separated and set it on the rollers. Let it air dry the rest of the way or sometimes I sprayed a little dermorganic volume spray on and dried the rolled hair on low/cool the rest of the way. then I very carefully removed the rollers. I may have lost a few extra hairs that way, but having the volume and body were worth it. My hair is fine but I have a good amount, so maybe that's why it was easier with the velcros…not sure if it would tangle more if hair is thicker??? I originally tried the foam rollers but they made bends from the connecters and my curls were very Cindy Brady meets Nellie Olsen, so I had to look for another alternative. I also tried those things that are like a pliable rubber stick but they were too hard to work with and pulled on the hair. I'm sure you will all find something that works for you. I do know some cappers used straightening irons and curling irons just on the ends - I wasn't brave enough to try that, but they seemed to do fine. Just keep experimenting and see what works.
BB, my hair dried up probably after the 2nd treatment. Then I had to start using a deeper conditioner just on the very ends. I used Sea Chi - all natural and I think recommended by PCC. Just a dab rubbed into the long ends really helped when it got so dry.
I promise all the effort is worth it - hang in there everyone!
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Hi Hope49,
I actually followed all you did - used my husband's T-shirt to blot, he even laughed at me that I looked like a nun when I had it on my head, called me Sister Mary BB. Then I combed with wide tooth comb, used cold air on low. Put it on the velcros, but when it came to take them off, that was a real tangled mess. My hair is fine too. Maybe the rollers I bought were cheap and worse quality and this contributed to tangling?
My Mom thinks I should try the foam ones, but I am concerned about the dents too. I went the rollers route to begin with, because my hair tends to get flat and I need to lift it by the roots. I may experiment once with the foam, but too scared to use velcros again.
One way or another, I feel so much better today, now that I got to wash it.
I caught myself that when I watch TV nowadays, all I'm paying attention to is women's hair!
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BB, I take 1/4 - 1/2 inch or so sections and holding them from the bottom, twist them tight and then simply let them go so they are hanging down. I kinda look like I have dreadlocks or something all over my head initially. The conditioner - today I used the Sea Chi one which I really like- keeps them somewhat together & twisted. As the hair twists dry, they unravel a bit especially towards the bottom, but the end result is a beachy, wave look. My hair really started to dry out between 2-3 weeks after my first treatment, so now I tend to rub a little oil onto the ends after my hair is dry. Hope this helps.
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Thank you so much, Angiel
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BB I always thought I looked like a nun, too, when in did the tshirts! I know you'll find a technique that works for you, keep experimenting. I also started really noticing everyone's hair while capping and one thing I discovered is that there are a lot of women with very thin hair and by comparison my lifeless ombré 'do didn't look so bad. If you want to try the Sea chi, I can put some into a smaller bottle and mail to you...I have a big bottle and only use a little here and there. Happy to share some! Glad to hear you are doing well today...every day that passes is another day closer to being done
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WOOHOO! Just shipped those F#$*ING CAPS BACK TODAY...
JennLiza, You look awesome! jealous of the hair u have...
BB & Angiel, keep up the good work, I used foam rollers in the beginning, but that's when I had REAL thick hair...
WARNING: Now sadly here is my monthly timeline & the last 3 are my new look...quite a few pics (i gave up writing dates on pics for Jan & Feb when the hairloss became dramatic)....again, remember, I lost like 90% of it, so I had to chop it...this is not to discourage anyone, just sharing my experience....I really miss my length & thickness, but I'm not bald
it's 3-5 inches of length, but curly so of course it looks shorter...talk about a stressful five months, give me a freaking cocktail!
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Angiel,
I heard some Dr's have ladies keep the port for a few months just in case, so thats what I expected. My chemo nurse on the last day said, no I may need to keep it for up to a year! shocker! BUT HAPPILY, she was WRONG! I got a call the VERY next day after my last chemo from the hospital to schedule it's surgery removal...I'm getting it out next Wednesday, an exact week after my last chemo, WOOHOO! I don't feel it that much, but my baby touches it sometimes, so I am happy to get it out & not have to go in for monthly flushes..good luck!!!
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CurlyG23,
You've got hair!! Thinking back to how it was 25 yrs ago when I had chemo the first time, this is a miracle. You look great and.....hair!!
You have more hair now, than I had a couple of years out 25 yrs ago. I kept my hair short after chemo as I was scared something would happen and I didn't want to feel bad if I had to do chemo again.
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Ok my post messed up last night... I am now 22 days after my first Chemo, I am shedding... Im on AC with my next treatment next Thursday. When did shedding slow down some, I still have 80-90% of my hair, and yesterday at my MO's office was surprised to see me with hair, flat out told me I should be bald right now. I am pretty think over my right ear, and on my hair line to the back right side... I have some tenderness to my scalp when i move my hair from one side to the other and am very paranoid that flipping my part will cause my hair to abandon follicle.... Guess I wish there were more AC regimen folks here to help me, not that i don't appreciate the TC folks, I just haven't seen a lot of major success on here with the AC regimen so I am worried I am waisting my money, if it is going to all break off, or i loose 90-95% of my hair. Guess I need more encouragement here... don't mean to be winey.... but Im worried!!!!
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