Cold Caps Users Past and Present, to Save Hair
Comments
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lighthouselady - you are not giving up! You gave it a great fight and you are doing what is best for your sanity. Good for you for trying! Of course you would have always wondered. Whatever you choose to do, it is the right decision.
jc - congrats!!!! so happy for you and how well u r doing!!!
Schoolmom - thanks for updating us. It's nice to hear how you are doing. I think i shed similarly (but more). I am actually having a hard time with it because it's enough hair to not need a wig, but not enough to look like any kind of style. Add to it the tons of grey and the frizz...and i just am not happy with how i look and it has really been getting me down.
Yesterday, I did actually put on the wig for the first time - felt i should at least try it to see if it would boost my spirits. No one gave me any funny looks, but i felt fake and it's big like my old hair, which i am soo not used to anymore; it didn't feel right. Today i went for a walk with the kids with a fake ponytail attached; it felt a little less fake and the kids said it looked fine. I will colour it soon and hope that will help, but i can't really see the light right now re: thickening. I know it has started growing in on the sides and the top, but the back is brutal and i am afraid for how long it will take to grow. I would be thrilled for any length in the back, but right now it's not looking so promising. I, too, had lonnnng hair...it was half way down my back. Now i pin up the sides to the back to camouglage the missing hair in the back, and it looks as though my hair is as short as my hair line on my neck. Ugh.
And these darned hot flashes! I could use a break from them! Finished rads on monday and have been on Tamoxifen for a month now. Think i will ask about effexor, which i have heard about. Has it's own side effects, but just maybe it will be helpful.
curly0 -
Hey Curly, nice to have an update on how you are. Yay for still having hair to camoflage the back! Yay for being done rads!
I still say that some hair is better than none. I'm sure it will get growing soon. I had trouble seeing my growth because it came in lighter. Then one day, there it was. My growth is now about 1.5 inches long and it makes the rest of my hair look a lot thicker. Today, I was rougher with washing because my psoriasis is coming back and I wanted to get my scalp really clean. I had no shedding, despite finger-scrubbing my scalp.
How did rads go for you? I'm 22/32 and my skin is still holding up. I now have a tanned boob and some fatiguge but that's all.
I haven't started Tamox yet, but I have some mild hot flashes from chemopause - which has become permanent. I see my MO at the end of October to talk about Tamox but I've expressed the wish to wait until the new year, if that's do-able. My work really needs me over Christmas and I don't want to have to be dealing with SE's.
My MO is new and she's not convinced the pathology was correct on the lump, so she's requested they retest for estrogen receptors. I believe she thinks I may not need Tamox at all. That would be so great.
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I thought I would update on my progress for the benefit of those considering using the caps. I finished my second TC chemo last week. I'm on day 30 since the start of chemo. I've lost about probably 15-20% of my hair (it's hard to say really but that's my best guess) but still have enough that I'm reasonably confident no one could tell there has been any loss. In fact, I saw a friend yesterday who pointed out that even with my hair shedding, I still had way more hair than she has as a person with just naturally thin and fine hair. I had a few days where the shedding seemed to kind of ramp up (probably day 20-27) but now it seems to just be kind of a little here and there all day long but nothing really significant. I've been grabbing and saving as many hair that fall as I can and I've got about half a Ziploc sandwich sized bag full. Yes, it's totally weird and creepy that I'm collecting the hairs in a bag but it's the only way I can think of to kind of track the loss. A lot of the hairs don't make it into the bag so it's just a rough idea of what I've lost so far.
I would say that at this point the caps have been very successful for me. I'm pretty sure it's a combination of luck and the fact that I'm doing the TC chemo instead of ACT. I've left the caps on for 6 hours after my infusion instead of 4 - don't know if that has helped me or not either. I've kind of switched around with a couple different non-sulfate, no paraban shampoos. The one I've used the most is by Fundamentals and it's entirely non-chemical. I've taken the suggestion of adding in a little apple cider vinegar with it and that seems to have helped with preventing too much buildup and from it getting too oily. I'm washing my hair twice a week and following the protocol that Penguin suggests for the most part. I am using regular conditioner on the hair that is more than 3 inches from my scalp. The hair that is closer to the scalp I use the ICON detangler spray on. I also find the a little fine spray of Argan oil helps with the fly-aways and just makes it look a little more presentable. I have a wide tooth comb I've been using to brush it through daily. I also brush it out before washing and after it's wet from washing and then wear it in two loose braids to dry and for the next few days thereafter.
I know this may sound nuts and like tempting fate but I'm thinking about trying out some henna on my hair. I stopped using chemical dyes about a year ago and switched to henna and it's worked really well for me. It's all natural - just the powder form of the henna plant and I mix it with a little olive oil and water before applying it to the hair. You can vary the thickness of the henna paste by adding more or less water and it can be made into a very watery version so it doesn't pull on the hair I've got. It's very gentle on the hair and provides good coverage and color to my hair, which is a fairly natural looking red. I havent seen anyone use it while doing the caps and I'm sure it's not highly recommended but I'm thinking I might just try coloring a small patch on the underside of my hair and see how it does. If it appears to hold up, I'll try my whole head and if not, I'll just pass on the whole thing. Right now it's an case of everyday looking like a bad hair day but I feel lucky just to have been able to maintain my hair. I've got 4 more TC treatments to go and I'm hoping it continues to hold up well. I'll keep you guys updated.
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gildecage - I am glad things are going so well for you and hope it will continue. I think it will.
I kept hair in ziploc bags also, but did it differently. I collected the hair I lost after shampooing to compare with two apre-shampoo samples I had kept from before starting chemo. I had two big loss days right after my second treatment, then it settled down. I did lose more after shampooing than before chemo, but surprisingly little more. I shed steadily all day long though. It was all over my house, my clothes and fell into my food. Not fun.
I know that some ladies used henna afterwards to color their roots, but I haven't read of any using it during treatments.
I do know that I had lightened my roots shortly before starting chemo, even though I knew I shouldn't, and that the chemo must have hit that lightened hair at my scalpline because many of the hairs had damage exactly where the new natural colored hair met the lightened hair. The damage looked and felt like a small ball and months later many hairs broke off at precisely that point. So, my advice is to consider carefully before doing anything. I do know the temptation, as I had probably four different colored roots growing in and looked awful.
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yay gildedcage! Keep it up! I say, if you are brave/comfortable enough to do it, just try a very small patch underneath. I wouldn't have been so daring at that time, but that's me.
As for me, guess what ladies? My Clairol beautiful hair colour arrived today so i just coloured my thin hair for the first time since Jan 2013!!!!! It looks much better. Yes there is still much grey peeking through, but my hair didn't fall out and there is much LESS grey peeking through than there was yesterday. This is an improvement! And now i have only grey and the dark brown colour, instead of the old hair colour plus grey plus the new ashy colour. Yay! Not sure how long this lasts, but i'm ok with putting it on often for the next little while. Just glad it didn't make my hair fall out!
Shipsgirl - thanks for the cheerleading! It helps! I did well the first half of rads (6 weeks total) - thought it was easy and the skin was just a bit darker. The 2nd half was much more difficult on my skin and i had to get flamazine cream prescribed. It did wonders in just a couple of days. And today, a bunch of the crusty dark skin literally wiped away and nice, fresh skin is emerging. Still a different colour, but it looks much better than it did. Sadly, i am much more concerned with my hair! I must be nuts!
best,
curly0 -
curly! happy with that new color huh? yay!!!! so glad you tried it.
gilded - do let us know how the henna works out. the color looks great in your avi.
i tried some color too even though I'm only about 7 weeks PFC. I got naturtint from whole foods and put it on a small really gray patch in the front and it made me feel so much better. so far i haven't needed a wig. i cut the scragglies off in the back so i have a really short thin bob. it's passable in the back and i cover the super thin hair in the front with a soft hairband. i'm hoping some new hairs come in thicker in a couple of weeks to help do scalp camouflage.
i've got one week of rads under my belt. a little skin reddening but so far so good. i know that can change about half way through tho - so i'm trying to be prepared. shipsgirl i hope i'm as fortunate as you!
have a great weekend everybody - and good luck!
kay
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Hello ladies!
So good to hear from everyone. So sorry lighthouselady (Big hugs). Make the choice that is right for you and feel empowered for taking matters into your own hands!
Kay, glad to hear everything is going well with your rads!
22/33 radiation today but it has been extremely rough- red, itchy, naked, painful patches under my breasts right where your bra hits. Total ironic moment when the doctor told me that because I was "big" girl I might have problems there. After my lumpectomy, my surgeon said that it was fabulous I had so much to work with because I shouldn't even see a dent. Oh, well. Cancer giveth and it taketh.
Been using a Domeboro soak several times a day along with cornstarch for drying. The pain pills work, but they give me night sweats and some nausea and they excellerate the fatigue. Just trying to get through. Most days I don't wear anything but a soft t-shirt and throw on a jacket if I have to go out.
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Got some fabulous news yesterday. Turns out my RO ordered 3 boosts to be overlapped with regular rads. That means that my rads will be finished 3 days earlier. Then I looked at the calendar and realized those 3 days would have been after a weekend so instead of finishing on Wednesday the 9th, I finish on Friday the 4th. 5 days earlier.
I was sooooo happy. I only have one more week. I will be done. I could cry.
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Awesome news Shipsgirl! Really happy for you. MIT is so nice to catch a break once in a while
I start Monday. Went for dress rehearsal today and they drew all over me. Turned down tattoos. Told them I already have enough permanent reminders!
Kay, I have baby hairs all over but it is very light so hard to see. I hope they darken up. Dark brown is natural color but it has been Nice and East #108 for so long who knows what natural is. I just hope not all grey! Over my ears does not look near so desolate anymore. Slow and steady wins right!
Mdg, try taking a soft shirt or flannel and soak it with aloe then drape on your skin. My lymphedema/rads therapist says it really soothes the hydrates without having to rub the skin. That might help?
Think I might try the henna or nutratint this weekend. I am 6 1/2 weeks out Feeling brave with light shedding and baby hairs. Plus "other" places are returning with a vengeance so I know the follicles are up and running!
Onward and upward ladies! It seems like so long ago we were actively capping and now it turns out there is light at the end of the tunnel and it really wasn't a freight train!
Happy weekend everybody!0 -
Shipsgirl, that's great news. One more week, and then let yourself have a good long cry of relief.
I took the plunge and got my hair colored tonight. I even let my stylist blow dry it. I think she was as nervous as me, but it looks great. It hasn't been this smooth and non frizzy since April and I feel like a million bucks. I had nightmares about my hair all falling out but so far it seems fine. Hope everyone enjoys the weekend.
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Jc. You should go out and show ourself off so no movie, too dark!
Shipsgirl. I don't think you should cry in relief, more like howl topless at the moon!! :0)
Great weekend everyone!0 -
Ships girl, congrats. Its nice to see there is an end to this journey
Gilded Cage, I am at Day 15 and had some abnormal shedding for the first time tonight. Did this happen to you? I feel like I've followed the protocols as closely as possible. I do hold my very fine long hair in a loose hair band or a loose pony tail if I need to look a little more presentable. Are there any other cold cap users that are in their first or second chemo session? I would love to see how others are doing? Hope everyone has a peaceful and happy weekend!
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mfm, I think you're getting TC, right? At day 15, you're at the scary part of the cold cap journey where you wonder if they will work. I remember it well. Right about now you would be losing your hair if not for the caps. As long as it's not coming out in clumps you should be ok. You'll feel much more relaxed about it when you get to your next treatment with hair.
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sewwhat - thanks for the support. Congratulations on the babies! They came in light for me at first and now they are darker - though there are more greys in there than when I started this ride. Where do you get the henna, and in what form? And the full moon was last week so I'll have to save howling for a few more weeks!!
jc - yay for getting back to "normal". It must have felt so great to take the risk and have it pay off. Now no one would know you've had chemo for sure!
mfm - just stay the course and trust. At this stage, you have done all you can; stand by that. Only time will tell, but there are plenty of us on here who were successful.
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Shipsgirl
You don't have to wait for the full moon, any moon will do! I am going to beauty supply tomorrow and will let you know what I find out about henna. Saw someone here say they got powder and mixed it with olive oil and something else. Indian grocery store might carry powder too..
Happy Saturday all!0 -
Thanks for the reassurance shipsgirl and jc. If this works, I will feel so fortunate to have found out about these caps. Next treatment is Thursday. Dreading it, but finding so much encouragement from these boards. Thank you!
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mfm hang in there. i started to shed a few days before you and it was a lot. it's really scary but keep plugging away. i used to get so much anxiety before my treatments so i know you're dreading thursday. will be sending you good vibes.
tmb - sending you many healing hugs. so sorry you are having so much trouble with the rads. hold on, just a couple more weeks to go.
shipsgirl - what a present huh? one more week of rads - man that's terrific news. i've made it through one week and so far just a little reddening. the arm where they removed the lymph nodes is getting awfully stiff though. anyone else experience that? i do the exercises that the PT showed me religiously and I'll be seeing her throughout rads periodically - but still.... it's getting reaaallllly tight in that arm. lots of cording and it's only been a week. can't help but wonder what other awful surprise i'm in for...
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Kaydee. I hate the cording! Had it really bad after surgery then chemo flaired it up again. Figure rads will too. I start tomorrow. Yuck! The cords went all the way down thru my hands.
We will get through and be done soon though!0 -
Kaydee - Keep stretching. I started to get stiff and the doctor said it might be caused by cording, but I made sure to do a lot of stretching during the day and it went away. I'm fine. I still do it occassionally as I find that sometimes the area tries to tighten up.
When I drive the car, sit at a computer or watch tv I put my hand on my shoulder lightly and raise my elbow upwards as far as I can comfortably, then I bounce or stretch it a bit higher gently until I feel a pull. I can feel it stretching where it is tight. Repeat it a number of times.
For those of you going through radiation or who have just finished, be sure to keep moisturizing long after you are done or your skin can become like cardboard. Mine started to about four months afterwards, to my surprise. I was told to moisturize twice a day to help it to soften up and keep it from happening again. I had not been advised to use moisturizer long term or that anything like that could occur. I do it regularly once a day now, almost a year after I finished radiation, as if I do not, I can usually see a change within days. Apparently, radiation can have long term side effects.
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Thanks Hortense. I'm definitely trying to keep everything stretched out. Thanks for the post rads moisturizing tip too.
4sew the post surgery cording was the worst! But I worked on it and worked on it and stretched and stretched and thought I had it beat - then bam! All of a sudden it's back. Yuck.
Here's hoping we both get rid of it for good after rads...
I have another question... How much water do you all drink a day? I aim for 2 liters a day. Should it be more?? i'm hoping it will help with rads and with hair moisture. i can already see some extra crunchiness after just one week of rads. But I'm afraid to put anything too oily/heavy on my hair in its still-fragile state.0 -
Kaydee,
I see a lymphedema Therapist that works exclusively with BC patients, and she does a great stretch/massage and the cords just pop and go away! You should see if your insurance will let you see someone. She gave me awesome exercises to do and said really important to wear the compression sleeve for at least 3 hours a day after rad treatment. Did they get you one? It really helps too.
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Hi 4sew,
Yep, seeing a lymphadema therapist. Doing the exercises, and have a sleeve and gauntlet. Just really tightening up on me. Plugging away tho...0 -
Hey Kaydee!
Had my first yesterday. Sure it was my imagination telling me i was feeling weird things!
Just keep swimming.....................................
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Anyone claiming cold caps and associated fees as medical expenses on their taxes? I am. My accountant told me I could claim hotels, gas and meals associated with my treatments, so I am including these also.
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Ugh- I will need 3 more rad treatments. I know this sounds silly- believe me- but it was so disappointing to hear. I get my boosts fitting tomorrow and while reviewing my chart my rad onc decided she wanted me to have 10 instead of 7. I could have cried.
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I was planning to. I have a million receipts for parking too. OTC meds count too, and any bandages, etc too I think
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Oh tmb, I'm so sorry. I know how I'm counting the days and just waiting for treatment to be over so I can only imagine what you must be feeling. But you can do this. You've faced every other thing that's come your way and you'll rise to the occasion. My heart is with you.
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Sorry TMB, that really stinks. I started yesterday and am already over it. I know it is my imagination but I already feel like I have half a sore throat since they are doing my neck too. To be soooo close to done and then have the finish line moved is soooo not fair. You will get there super soon though. Good luck.
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Tmb. I know how disappointed you must be. Seems like it's always one thing after another with this crap... always catching us off guard. Rads have been so hard for you. But HOLD ON! YOU. WILL. MAKE. IT. We are with you!!! Praying for you all the way through this.
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Thank you ladies!! It was just so damn hard to hear. Oh well- now I am 24/36.
On the plus side- I had my check in with my med onc and got my script for tamoxifen. She said I could wait until 2 weeks after end of rad before I start taking. Then I will see her every 6 months.0
