Cold Caps Users Past and Present, to Save Hair
Comments
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Kpmacmill- we started chemo @the same time. I wish I kept a Baggie from the start... I would say the shedding started on day 14th. Day 15 not so bad... but 16-18 pretty bad. Ugh just washed my hair today and man I lost a lot if hair...mostly from the bottom. I think I will start keeping a baggy.
Experienced CC'ers- Does the shedding slow down or stop? My next chemo is wed...and feel like it is just going to continue or pick up. At this rate...no way will I make it through 6 treatments.
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Hi Ladies.... I think I need some re-assurance!!I have been very confident about these caps up until this weekend. Saturday I reached the "freaking out" stage that I knew would come eventually. My head suddenly felt very tender (like it would feel after having a tight pony tail in all day) and I know this is a tell-tale sign that it's about to fall out. I was already shopping for wigs in my mind at that point.
I used a wide-tooth comb to get all the "dead" hair out, and WOW...... I really ended up with A LOT of hair coming out. Overall my hair looks normal, but it is much thinner than it was. I'm okay with it but if I keep shedding at this rate, I am going to look like the crypt-keeper before the end of my treatments. I have my fourth chemo next week, then 2 more after that. I pray this shedding slows down because I don't know if my head can handle 3 more treatments. By the way, the tenderness of the scalp is gone now. I'm hoping this was just a scare. I'm halfway through, I don't want the caps to fail me now!!!
At any rate, here is a pic of me taken this weekend
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Hang in there gals. The amount we all shed really seems to vary. For me, it picked up after the 2nd TCH and stayed at a steady rate, I think, throughout the rest of chemo. It slowed some about a month after chemo but it didn't really stop until about 4 months post for me. I always had enough coverage, no bald spots, just thinner. Everyone is different, though - all you can do is hang in there and see how your body reacts to the process. Fingers crossed!
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FL_sunshine - Looking good to me! My hair is what feels funny to me - like its not really attached to my head - it feels too light and fluffy, even though I haven't lost much yet.
Today is my worst day for shedding so far I think - I actually have counted the hairs - about 85 so far. I'm on day 19, have had 2 rounds of AC. I keep thinking that if I can make it through the next two rounds with half my hair, maybe it will start growing back during my weekly Taxol. What I really need to do is just take it day by day, and stop trying to look ahead, but hard to take your own advice unfortunately.
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@ FL Sunshine - your hair looks great. I think you notice the difference.
@jennliza and kpmacmill - I shed so much everyday and I haven't even started treatment! I lose at least 100 hairs a day. I'm scared as to what will happen when I actually start but am confident that the cold caps will work. Sending positive vibes and prayers.
Are you taking the suggested 250mg of silica 3xs a day?
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Hang in there.....I felt the panic most of you are feeling. I kept thinking I would be bald by the end but IT DIDN'T HAPPEN! I still had a full head of hair. Have faith.....I know how hard this is! The caps work....Sending hugs!
Oh and I also had a very sore scalp too....like the ponytail was too tight. That is normal.....
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DaniellaD - I'm taking Biotin 5000mcg and the BioSil drops everyday. Before I started shedding around day 17, I hardly had a lost a hair from day 1 because I was being so gentle with my hair - I'm making up for it now of course. My nails are growing like crazy from the supplements too.
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Here we go again. It's time for the Pep Talks. Ladies, here is what I lost somewhere around day 20. I thought for certain I'd be bald. And it continued heavily until day 30 when it became more steady.
Yep, that was just one day. Keep filling those baggies and hang in there. If you make it to day 21 and you still have hair the caps are working for you.
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Love it! We definitely need a pep talk - thanks WW - you're the best!
Ok - I don't feel so bad now with my little baggie full of hair. I'll stop whining now :-)
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Daniella. - I'm taking Silica and Biotin. I am also using this awesome nail hardner...so my nails have never been better.
I am probably under estimating how much hair is falling out. I feel like I used to lose around 20-30 hairs per day. Today is was like 100 hairs in 15min. The amount of hair compared to what I used to take off my brush in a week. Its not noticeable....but I cant continue to shed this way daily... at least I hope not. I have 5 more treatments.... Though if this was 5% of my hair....and I lost 5% with each treatment....then that would be 30%...which is to be expected.
I wish I knew what it would be like if I didnt cold cap...would I have bald spots...or be bald by now. I dont have what to compare to....so dont know how well or bad the CC's are working for me..
I guess I am going to keep going and hope for the best. I have a wig at home that I hope never gets worn.
I do put lil mini clips in my hair that are no no's....but so far the loss is not from on top. I just wear them for 2 hours...till my hair is dries. I wet and comb my hair daily....but only wash 2x/wk....i may try to do only 1x/wk....if I can get away with it. This week will be 1x/wk since it is a chemo week.
UGh....wish I can fast forward to October....and see if this worked.
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Thanks Warrior Woman!!!
I started with a baggy today...unfortunately after I threw the large amount in the toilet bowl. It definitely wasnt anywhere near the amount you just posted!!!!
Wed...will be day 20. I switched my day to Wed from Thurs.
Your post definitely gives me hope....thanks again!!!
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DaniellaD,
I haven't started my chemo either. My little one has been breaking off my healthy hair. I already use a satin pillowcase, I think I'll do a silk tassie thing or hair sock when I start.
@WarriorWomen, I bookmarked your post for a reality check later on when I panic, as I know I will :-)
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jennliza - don't panic! Do not panic! Us that haven't started are admiring you're bravery! Look at the others. It's normal. What nail hardener are you using? I read somewhere women painting their nails black bc of something to do with the light. Are you icing toes and fingers, too? I'm taking the biotin 5000 too along with 200 mg of oceanic silica and a bunch of other hair vitamins since I'm shedding already and haven't even started. Hormones post nursing plus stress. At least I will be used to shedding when it happens during treatment.
Harrysmom- right there with you. She's going to pull more out than chemo can kill off! Let me know what you come up with. I was thinking of showing my tassie to my MIL to see if she could make one out of silk.
Ww- as always thank you for your reasonable advice and the good pep talk. Get ready for harrysmom and me when our freak out comes.
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Daniella...I'm trying not to freak...but knowing I have 5 more treatments...and already lost a bunch is scary. I know I have to relax...and see what happens.
As for the nail hardner....I bought on Amazon. Its called Quimica Alemana. It really works!!! I was told by my MO nurse to wear a hardener when doing chemo...it helps keeping your nails from splitting and getting black.
As for icing...hands and feet...the answer is sort of. I had planned to....but kept on falling asleep because of the IV Benedryl....so wasnt really chewing ice. And I kept spilling the ice/water that my hands were in....cause I kept nodding off. I did ice my feet for part of it.....bags of ice were wrapped to my feet (over socks)...so falling asleep didnt affect that....but I got way too cold so took them off about an hr and half into it. You would think the ice caps would make me cold....nope it was the ice wrapped to my feet.
Well, I am going to put my hair in a baggy for the next 3 weeks and see how much I lose....I pray the shedding slows down.
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Hang in there cappers! What you are going through is normal. Before I started the process, I read every post and I saw that the panic stage was a common theme followed by those same cappers ringing the victory bell as they finished chemo with their hair! In spite of all that, I too, had my days where I thought it was the beginning of the end, and then ladygray told me, "you are not a special snowflake, the caps will work because they work" and I made that my mantra. In addition to the shedding, not being able to do your normal routine and use products add to the feeling that you have way less hair. I am about 16 months pfc right now and this morning when I washed my hair and dried it, I'm sure 50-100 hairs came out and I didn't think twice about it…LOL, once I stopped to think about what I would have been feeling a year ago, it was nice to know things can get back to normal.
So hold tight, you'll get there sooner than you know it. And although it will take a while for you to feel you have your 'old' hair back, it's better than the alternative. One of the girls in my chemo group has a lot of baldness on top and her doctor - who discouraged her from using the caps - thinks she's one of the unfortunate few who will have permanent hair loss from taxotere. She'd kill to have any of our straggly thin hair, so keep the faith.
For those in treatment this week, sending you lots of positive thoughts!
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Hey here's yet another thank you to WarriorWoman for the hair bag photos and also the before/after photos, though a little late, I'm now done, 9 weeks PFC. I had similar hair loss and plenty of freak-out moments, but those photos had a calming effect. And now while my hair looks a lot thinner than it did before I started, it is still ok for going out in public. Never needed a wig, and no one knows I went through chemo unless I tell them. Yay. Cold caps are the way to go -
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FL_SUNSHINE your hair really looks AMAZING! Best of luck to you- I'm just was told today that I needed Chemo and Im really leaning towards using a cold cap. Thanks for the inspiration
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fyi to newbies...try bags of frozen peas for icing hands and feet. I used fingerless gloves so only finger tips got cold. I never had nail issues. 19 mos PFC and going for a shape up haircut. After all the trimming of dried frizzies I now wear hair touching shoulders instead of 5 to 6 inches down my back. Today's cut is to layer and shape so it will probably be shorter than I like but new growth is about 6 inches and old hair is about 8, so here goes.
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Well today I wet my hair and combed it....and just a normal "non-chemo" amount fell out...prob 20-30 hairs. Need more days like today! Tomorrow is chemo #2....
I dont know how your eyelashes and eyebrows are holding up....but mine have been good. I'm using Rapid Lash...I bought in Amazon for @$30....I use on both lashes and brows. Dont know if they would be falling out or not if I didnt use it....but so far so good....so I thought I would share with this hair conserving group. Also I did switch my mascara to an all natural organic mascara....made from fruit...also bought on Amazon....should also be easier on the lashes.
Hope everyone is having a good no S/E day!!!
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Many of us did not lose lashes and brows until after chemo. For me, I lost about 50% of brows during chemo so I had to play "connect the dots" with an eyeliner. I lost my lashes at 7 weeks PFC. They had thinned some but then they all just fell out. I used Latisse so they grew in super fast.0 -
Speaking of Latisse ...you can thank me later.
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FL Sunshine--your hair looks amazing!
Made the mistake of not washing for a week. Didn't time it right with going to the beach and chemo, so I figured the less I wash the better. Well I was panicked. But after washing realized the amount that came out would have prob been the same had I washed twice. But don't want to do that again. Definitely getting chemo skin and losing lot of brows and lashes. I use the Brian Joseph's brow and lash gel faithfully but I guess I'm just succumbing to the treatments. Also, my mil told me to try castor oil b/c that is what's in the lash gel. Seems to be ok.
I've been icing my hands and feet too. No nail damage--in fact they are longer than before--I do take biotin.
Question--what can I do when nothing tastes right? Been eating way too much ice cream/popsicles, and not enough fruit b/c I'm afraid to eat much fruit and it doesn't taste right anyway. I will eat any fruit--I love it and am so mad that I had to endure this in the summer. I am going on a nice tropical vacation somewhere when this is all done and eating all the fruit I want!!! Nothing really tastes right and it's almost as if I am pg b/c I have food aversions and just general aversions to things that really sleeve me out!!
Let me know how you handle this.
PS--I never thought to save all of my lost hair!! Super idea.
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ciaogina - are you icing your mouth during Taxotere? I sucked on ice chips (to tolerance) 15 min before, during, and 15 minutes after the Taxotere infusion. It was rough b/c I was also icing my feet/hands and doing the cold caps - that 1.5 hours was pretty darn tough...BUT...I never had taste changes. I also did not do it real faithfully the first infusion and had the beginnings of a few mouth sores after that round...but never had any hint of mouth sores for subsequent infusions when I iced my mouth.
The ice, IMO, keeps mouth sores and taste changes away b/c it keeps the chemo from getting to those cells.
If you don't have an electric blanket you may want to consider one if you are going to add icing the mouth. Brrrrrr!
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dancetrancer--yes I'm icing my mouth too--and have an electric blanket as well. No mouth sores, just tingling tongue and horrible tastes. i find some things are better then others--soups, I like, frozen fruit helps too, so I shouldn't say I'm not eating fruit--just not fresh fruit. there's only so much frozen fruit i can take though. It's not the same obviously.
Thanks for getting back to me. It does go away right before my next treatment, but then comes right back--just can't wait to be done with all of this.
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Ladies, I know one of you will have the answer...I have been told the cancer-free clock starts from the last day of active treatment.
So, does that mean I have to wait until after my last Herceptin to start the clock or did it start after my last chemo (I had no rads)?
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Hi Ciaogina,
I had the same taste problems - it was really the only side effect I had, so I'm thankful for that but it was rough to find food that tasted good. For me, I had to keep getting spicier type food and yes, ice cream also seemed to taste good…so it was a lot of tacos and frozen treats. For those things I ate often like chicken noodle soup or things that tasted absolutely horrible during chemo I still can't bring myself to eat them again. Advice I got was to not eat your very favorite things a lot during chemo because of the association so maybe it's good that you are not able to enjoy the fruit now. Hang in there, one day fruit will again taste wonderful
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Texas - I was told the clock begins after the surgery to remove the cancer. I had chemo after my Dec. BMX so I am assuming my anniversary is in December. What absolutely sucks it that I may not be finished with treatment by my anniversary date.
Ciaogina - I craved organic soups like mad; especially lentil and split pea. I still enjoy them. And then there was the ice cream....
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Hi ladies. Just wanted to check in and give an update on my progress.
I'm on dose dense ACT (4 AC, 4 taxol) and tomorrow is my final taxol treatment! Couldn't be more excited. Shedding has actually worsened for me while on taxol but I still have a head of hair. My part has widened and I find loose hairs on me everywhere all day long. it's possible I may end up with some scalp patches on top but I'm hopeful they can be covered with headbands.
Pretty amazing really. While I am still nervous what weeks of shedding may look like, I've had 2 1/2 months of being incognito. So hoping shedding will slow instead of
Eyebrows and lashes are much thinner but I'm getting light growth on my legs which I find strangely encouraging.
Cappers, hang in there! It is amazing how much hair one can lose without it being readily apparent to others.
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thanks for the inspiration Kazzy, and congrats on being nearly done with chemo!!
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