Cold Caps Users Past and Present, to Save Hair
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Hi there
Ycats2007, I would say stick with the cold capping, no point throwing in the towel once you've started with it. I did 4 sessions of TC and am now 9 weeks post final chemo and have about 30% of hair left and continue to shed BUT for the last 3 weeks hair is growing back. Once shedding stops I will get a pixie cut as can not wait to run my fingers through my hair without it falling out!
I agree that it is a stressful journey though. It certainly takes your mind of the cancer!
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I just had my hair trimmed after my first 4 infusions of AC, couldn't stand the fuzzy condition. Feels great, even though I have lost at least 50% of my hair. My hairdresser said that even though we are losing hair it's better than chemo taking it. With cold capping the follicles are not fried like chemo and hair will come in better. She showed me the ends of my hair coming out of my scalp and they were smooth, like they just released rather than burned off. Made sense
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I agree with Jane75 and I'm in the same boat as she. I had six rounds of Taxotere, Carboplatin, Herceptin and Perjeta. Almost all hair fall happened post chemo. 11 weeks post final chemo now and have 30% hair left. Got a pixie cut this past Sat and no one can tell I've been through chemo. Hopefully I won't lose anymore hair.
It's an extremely stressful process but I can't imagine the alternative (bald head and starting from scratch)
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I went through the T/AC protocol and now about 8 weeks PFC, I have very little hair (and began with very thick hair.) Penguin Cold Caps worked very well for me through THP and worked pretty well through AC, but I have had a lot of shedding since my final treatment. Still, I am glad I did the AC because it was extremely effective on my cancer. I did my chemo before surgery and was able to use scans and of course my pathology to see how I was responding and my response to AC was definitely better than THP (although I did have some response to both.) I am sad that I didn't keep more of my hair, but still glad I cold capped to retain what I did. And now I think I am starting to see some regrowth, so the transition has been much easier than if I had been bald through most of this. At the moment, I feel better with a hat or scarf, but still can go out without one. And, ultimately, the chemo I did worked on the cancer I had. So no regrets!
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I would tend to agree with Meg , even though I did T/AC and after chemo was over in a mamo they still found a cluster of cancer cells which had survived chemo. My chemo was done post lumpectomy so I had to have a second surgery. AC did a number on my hair and I had a lot more shedding after the surgery as I also had a viral with high fever, but the cancer cells were all out.
One does not know what the real results of the chemo were but I still think we focus on the real goal which is to get rid of the cancer. The choice of chemo should be with the oncologist.
Despite all this wisdom which I espouse and truly believe in , I have to say that I obsess about my hair way more than I ever thought I would and googling hair growth timelines, keeps me busy during radiation.
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Just washed my hair after 10 days. My hair was so dirty that as soon as I combed it, it would knot up again like Brillo. I'm still in my first shed so I was super nervous. I had a ton of shedding when I combed it out, and for the first time I can see thinning around the sideburns and hairline. So stressful. A couple of questions:
1) how does everyone estimate what percentage of hair they've lost?
2) would there be a reason I shed way more on the left side than the right?
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Myraclaire: I have shedding in that same pattern - sides burns and hairline, also a bit above the ears. I think it's very common.
Are you using the extra ice strap that goes around the cap? Sorry, I can't recall if you're using Penquin. I think maybe the difference in loss between sides just happens because of the placement of the caps and straps and how tight everything is throughout the process. It's not precise each time, at least for me.
Somebody (I think Phaila) had suggested measuring ponytail at start of this (ad)venture to compare thickness from beginning to end. I did that. I haven't lost a lot of hair yet based on that measurement but when I look at my hair it looks like hell. Flat and thin and seemingly much less - visually. . I'm not sure what the best way to measure is - hopefully someone has a better idea. I know it's really difficult not to stress - and I should look in the mirror (frightening) when I say this -but as you know whatever you CAN do to not stress is best for your hair and your body and soul. Our bodies are under so much stress as it is. Maybe better to look in the mirror and say all those affirmations - I'm beautiful, wonderful, perfectly healthy and I have a shitload of hair. Ha. I will do this after my medical marijuana, which btw is not working.lol.
Sending good vibes that you and everyone here can try to relax about this process because it's just crazy unpredictable.
Jiffrig - I like what your hairdresser said.. thanks.
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Even though I kept my hair, I noticed they thinned and still shed a bit...not really a lot but compare to great hair I had before chemo with no shedding at all, I can notice it. My MO doesn't let to take anything but vitamin D.Any recommendations for natural thikenning products for hair? something that can be applied to hair. I read somewhere coconut oil. But how do you do it?Also, eyelashes, they grew but still short. I am using revitalash . I don't want to use latisse since I read of some side effects and I also prone to infections.
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Hi!! All-
kshorten- I think my capper told me not to cut because it weakens the hair follicle..
I wish I cut mine before though.. it would have been a heck of a lot more manageable (my hair is bra lengh or longer all one length (well was)
I now refer to myself as Brett Michael's with lots of thinning on the top and thinning party in the back.... I did follow all protocol and rules and still lost about 60% of my hair.. If I had to do over I probably would have cut it prior to starting capping.. I had my port put in and a punctured lung so in the hospital for a full week not really allowing much time to trim before... All in all I still have hair- I'm not happy with it, but people have all different results.. I did have one of the hardest AC- I've also heard the results are based on where you are at in your hair growth process.. I did cold capping for 7 of my 8 treatments.. I decided not to do the last treatment yesterday and while I may regret it.. I thought spending the $600 on a decent wig instead of 1 cold capping treatment was a better choice for me.. Has anyone used the FAST product? My daughter used it through the summer and it really worked - not sure if it's as successful post chemo, but would also be interested in hearing any hair growth products? Also, someone mentioned castor oil for eyelash/eyebrow - does that really work?
Hope everyone is having a good day
Thanks!!! Diana
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Hi all!
For those of you who are curious about cold capping with TC-The top picture is 1 day after 2nd TC infusion (I'm using penguin cold caps). Bottom picture is 2 weeks before first infusion. Had a huge shed this morning.
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Thank you to all who responded! I had very little shedding until after my second TCH treatment- so my first shed was around 25 days- it has kept on going to where I am now. I hadn't thought of it before, but I feel like my nutrition may have impacted my loss also. I spent 5 days in the hospital following my first treatment and with each treatment, I have about 3-4 days were I just have zero appetite and am limited in what foods I can eat. I read that this loss of nutrients can cause hair loss (as it could even with no chemo). I'm going to continue with the cold caps for the remaining 4 treatments.. if I have no hair left in the end hopefully the capping will allow quicker results when regrowing!
Does anyone take Biotin while getting treatment?
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Hello! Ijust finished 6 cycles of Taxotere. I have had what I would call minimal shedding. It did start shedding more after the 3rd treatment. I have pictures of the shedding in my sink, I will post. It did start shedding more after the 5th treatment. Now that I am done we will see how much it continues. I have no balding, just thinning on both sides of my temples. I don't think anyone can tell but me unless I point it out. It was so worth it for me!! This is my second go round with chemo, I didn't cold cap the first time around. I have to say it has made a huge difference in the way I feel:))
Good luck to all,
Kathy
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Hello all, I am 12 weeks PFC and still shedding. It has slowed down but is definitely not back to normal shedding
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Kathy, congratulations on finishing up with Taxotere successfully! I hope the post-chemo shedding is minimal or at least manageable. And I hope that the Taxotere did its job on the cancer!
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Kathy: So sorry that you have to deal with all of this again but very happy for you that you have been able to keep your hair! All the best wishes to you.
Annie : Thanks for the pictures - good luck on your next infusion.
Heidi - sending good vibes for slowed shedding.
Have a good weekend, everyone.
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Heidi - I'm 12 weeks (comes this Tues) PFC also and still sheddin. Igot a very short/pixie cut last Sat, and washed my hair this morning. Used the dryer for on cold setting for the first time since I started chemo to style it a bit and it still sheds. I've been taking Biotin, Viviscal supplements and multi vitamin, and eat well, but nothing seems to stop this shedding😢 So frustrating.
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That sounds great KD2016 - so had the shedding stopped by week 11 to be able to have it cut? They told me to wait until shedding eased off before having a radical cut.
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Jane - the shedding slowed down, from something like at least 100 strands a day to half that amount. I just couldn't take it anymore, and my dermatologist even suggested cutting it short and getting rid of the damaged, cotton candy like hair. So I did. It looks much better and I feel better. Just Can't wait for the shedding to completely stops. It shed a lot this morning when I washed it
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Heidi, hope it slows soon!
I am 17.5 weeks PFC and I am still having pretty strong shedding, def not back to normal, some days are better than others. I dyed my hair at 12 weeks PFC(lots of shedding) with vegetable dye and will likely do it again soon. My regrowth is starting to get pretty long(although i still have some bald spots, which just seems weird, hair cycles i guess), its about 2-3 inches while my remaining hair is just past my shoulders. It's kinda like this stupid and torturous race.
still taking silica and biotin, using fast shampoo as well as some other products to help regrowth.
I haven't heard of many going this long so I am hopeful that it will end very soon *fingers crossed for all of us!
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Heidi and Sarahrae: I don't know what causes some of us to have shedding for such long time vs others. Perhaps our metabolism. It's very frustrating. It slows down one day, and I think I'm out of the woods, then next day back to shedding. I only have something like 30% hair left so very aftaid at this rate I may lose it all. Not noticing much re-growth as much as other ladies have mentioned either
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KD2016 and sarahrae: Thanks, good to hear I am not alone! Since two weeks back or so I mainly notice the abnormal shedding when I wash (every 5 days or so with cold water etc). Saved the hair lost after every wash starting from before chemo started as reference. The extremely heavy shedding, i.e., feeling strands of hair on arms and shoulders constantly has luckily stopped (knock on wood). I have been taking biotin, silica and leftover prenatal vitamins since start of chemo. Did you girls have radiation? I have a theory that in my case the prolonged shedding might have something to do with it...every radiation session causes a small injury and with the frequency it might contribute to similar trauma to the body as surgery or childbirth (also known to cause hairloss). My husband says he cannot really tell I have thinner hair but he was shocked when he emptied the vacuum cleaner today, lol it was enough for a full wig in there (and that is minus the baggies I collect after washing and the shedding when out of the house).
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Heidi - I did not have radiation. My oncologist did not allow me to take any supplements other than vitamin D while going through chemo. I started taking them as soon as chemo was done so now it's been 3 months. Since I cut my hair short, daily shedding has stopped ( at best just few strands), however, my first wash after the cut was yesterday and I had a lot of shedding. I honestly don't know what to think anymore. Just have to go through this stressful period hoping eventually it will stop, and I still have some hair left on my head.
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Yep, went right into radiation. 33 zaps, been done for over a month now. yes, the falling onto my arms has way slowed down, however, I still get SEVERAL hairs, like 10+, every time i run my fingers through my hair.
hoping that it is slowing down, but starting ovary suppression Thursday and AI's in a month.... *fingers crossed
hugs
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Willa and Pat, Thank you!! I plan on following the "rules" for the next 6 months:)
I have a pet scan in 4 weeks and pray everything is gone!!!
Pat thank you for all your advice in the beginning of all this, I am so happy I did it.....was soooo worth it:))
Kathy
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oh I hated that feeling of hair falling on my arms! So glad that's over! I feel like I have a lot less hair this week but I'm not aware of losing any. I guess it's because I got it trimmed last week. I hope my current hair doesn't get to the end of its growth cycle and fall out before my new hair gets longer. I never thought of that until yesterday!
I got an answer to all the post chemo tendon pain I am having. I couldn't figure out why I was still having terrible pain 4 months after finishing while victory, phaila, and some others didn't have this. I saw a rheumatologist this week and the chemo caused a bad flare of an autoimmune disease that I've had my whole life and didn't know. I've had severe back pain since I was 11 and never knew why, the last rheumatologist I saw years ago diagnosed me with osteoarthritis. That's the kind most of us get over the years from wear and tear. This new dr I saw told me arthritis is never normal in an 11 year old and I have inflammatory spondyloarthritis. So that explains my chronic back pain AND the severe tendon pain I have had since my 3rd TC. It's a relief to finally have some answers because I really thought I was going crazy. And it's not uncommon for people with autoimmune diseases to get cancer. Ok so I had my cancer and I don't want any more! So it sucks I have a chronic illness but since I've had it my whole life, it really doesn't change anything.
So now I'm starting on meds that will help put the autoimmune disease in remission and get me off steroids and pain meds. Yay! That was another thing that seemed weird- 4 months PFC and I'm still taking Percocet for severe pain. My oncologist is so awesome. She never treated me like a drug seeker or questioned my pain. She believed me and is the one that sent me to a rheumatologist that she likes. I'm so grateful for her!
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Runner, so glad you have an answer - now I hope you find full relief, you sure deserve it. I guess the good news is you didn't spend all these years worrying about the Autoimmune disease. (Got to make lemonade, right)?
Almost 12 weeks PFC. I just washed my hair under the shower head, warm-ish water again - and virtually no shedding. I remember a post I read here many moons ago that advised those of us who hadn't begun chemo and capping yet to take a long, hot, strong shower - feel the water in your hair one last time. I really missed that feeling. Well, it wasn't QUITE that today - but it was as close as I've been since May. The bald spots are all filled in - the little cowlicks and tufts of hair are weird, but definitely heralding the beginning of the end of this sad chapter.
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Aimless so glad to hear that. Must be a wonderful feeling. I am about 6 weeks behind you.
Couple of questions for you or anyone else with experience,
How Large were the bald spots that have filled in ? ie were they significant?
How long does it take to get some fullness to the hair? do you still have the cotton candy feel or has it thickened a bit? I have some new growth thankfully but it feels very thin and looks thin too.?
When did you really start noticing a difference ie how many weeks PFC in the shedding and growth?
Runner- glad you figured the issues out-hope you have a quick recovery from this too.
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I am nine weeks pfc on Monday. I am still shedding a bit. I guess I have broken rules and started washing under the shower about two weeks ago. I agree aimless....it felt amazing! I turn the temp down a bit....but honestly notice no difference in shedding than when I wash with pitchers full of water. I went back to work and it just took too long and something had to give! I also did another no no yesterday and had my stylist put extensions in my hair to give me more volume. I cried when she finished, I used to have really thick hair. I look so much more like me:) all of my bald spots are filling in and there are no more white scalp spots showing through! Chemo wreaked havoc on my body, but I am grateful for penguin cold caps
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My eyelashes are going again. Crappity crappity crap. Sorry to whine but really, would this chemo effect just F-off already. There, I said it. My hair is now at the awkward many lengths stage. Avoiding mirrors. Care less than I used to anyhow.
Congrats, Runner, on the diagnosis. shitty, but good as there are meds for that?!
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