Cold Caps Users Past and Present, to Save Hair
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Hi all,
I started my chemo, TC for 2 cycles in May 2017. I used digicap and my chemo nurse placed my cap on my head. Then my chemo was changed to TCHP for 4 cycles, so all 6 of them with taxotere. The 1st 5 treatments were no problem at all. I did not have hardly any loss, But the final treatment, I got a different nurse who did not place the cap on tight enough or set it cold enough and I lost 90% of my hair because of that final treatment. I complained and tried to get her to do it right, to no avail. It is now starting to grow back very kinky and curly and very hard to control. It is about 2-3 inches long now. If I brush it it is very frizzy. I look like Einstein, very bad. I used to have very long, wavy, and very thick hair all my life, so this is very hard for me besides the fact I paid $2700 to pay for these treatments. Blue Cross Blue Shield PPO of Michigan does not cover this dignicap or to purchase a wig.... Please, if your nurse doesn't do it right, don't believe them if they say it is good enough to be 38 degrees it is not. My other nurse set it as cold as she could get it. I had ice crystals on my hair when I took it off the 1st 5 times.. but the last time there was no ice, it wasn't even very cold...
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Hi mobscene, glad to hear your hair is doing great! I am on Day 15 and today was a wash day and I can say it was pretty traumatizing since I saw significant shedding for the first time. Here's hoping that it'll slow down and future wash days won't be like this. I think I found a work around with the oily-ness, not perfect but does the trick without using dry shampoo, as I'm trying to avoid build up. I use those oil blotting sheets for the face and gently pat where the grease party is and it helps make me feel more presentable.
Sherryowang, your post is what I needed today!!! You saying that you felt like you lost a lot during chemo but no one noticed gave me some kick. I'm using Penguin Cold Caps and today was the first day I washed my hair with noticeable shedding and I'm only on Day 15. I'm on 4 rounds of TC and June 28th, I'll be getting my second infusion. Your words are exactly what I needed today and I want to thank you for coming back to this forum and giving those of us who are still going through the process the much needed encouragement! P.S. Your hair is absolutely gorgeous!!
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Hi all, I’m a few days past last round 4 of TC...easiest round side effects wise, mostly fatigue. Domzie-I’ve been using penguin caps, and have definitely had my share of shedding, with more to come I know. But, as of now, with strategic parting and pinning, no one would know how much I’ve lost. It’s shocking how much hair can come out and still have decent coverage!
carmstr835-So sorry about your bad ending to the capping...you really are at someone else’s mercy when you’re going through that whole process.
Now, on to radiation. Wishing everyone minimal SEs and great capping success!!
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Hi Ladies, I'm now on Day 17 and I am terrified. I thought that Day 15 (shampoo day) was going to be the worst of it. Yesterday there was some shedding but today my hair is shedding A TON. I am afraid to touch it. Is this normal? My MO told me that with TC, hair loss occurs on Day 17 +/- 24 hours, so I guess she was right. I guess I was hoping that with PCC, it wouldn't be so bad. Does it ever slow down? Any ladies that have cold capped through TC and can give me insights on when the major sheds are? I thought I had mentally prepared for this but man this is tough.
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hi- I went thru 4 tc infusions from August to Oct 2017-you can read how I and my hair did above--had big shed day 21 and continued shedding thru all 4 and for 5 months afterward-no one could tell except me.All you can do is follow the instructions as best you can--the correct temp, completing the entire capping time-not easy ,and cap must be -tight-realy tight to your head- the crown is the trickiest section to tighten-I had the company brochure too which gave good photo of how the top and back needed to look when properly tight-it should look squared off-push back top down really well before tightening side pieces and use all the straps to pull it all in around your head and under your chin--then you cross your fingers and hope for the best results you can achieve...have a back up plan-ie toppers or a wig you like and can order/receive quickly should you need/want one
Remember everyone's resuls vary- this awful time is temporary-you will get thru it one infusion at a time and your hair will grow back.am grateful only had to get 4--so many need anywhere up to 12 infusions-yikes!!
Hang in there-it will be worth it-hugs to you-
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Domzie30218, I can relate to your anxiety. I am also doing Penguin Cold Caps. My final TC is this week, Thursday the 28th. So many of the women have said that they had very little shedding during chemo or that they didn't start really shedding until after their final round. Unfortunately, that isn't my experience. I had a major shed on Day 18 after the first chemo. It continued shedding a lot each day, though the amount eventually slowed down a bit until the day of my third chemo. I had another major shed that day. I am still following the PCC instructions to the letter. I even called Penguin to ask about the amount of shed. They told me that everyone sheds on a different schedule and some have better success with the caps than others. They also said that as long as it is general overall thinning and not specific patches of baldness, then my caps are working.
Seeing the amount of hair loss each day is scary, but as my husband keeps reminding me, I still have hair and without cold caps, I most definitely would be completely bald long before now. Good luck as you continue with your capping. As so many of the posted pictures have shown, many, many women have had tremendous success with cold capping.
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Sherry - Thank you so much for checking back in! It is great to see/hear that you're doing so well 11 months PFC. Congratulations!
Few of us had your gorgeous hair pre-chemo and can't expect to have the fantastic results you did. But even so, I can't think of anyone who's posted to say that they regretted having cold capped.
Newbies - Hang in there. You *will* shed. But you will also very likely hang onto at least 50% of your hair. Which is 50% more than you would otherwise have. Remember: a bad hair day is better than a no hair day! Even if you end up needing to use Toppik/wear a scarf/hat/topper/wig for a few months, that is far less than what you would otherwise have had to do. Best wishes to all.
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Hi Domzie, my experience was similar to Maggie-I shed throughout with heavier shedding right before each infusion, and then it slowed. You might want to take pics of yourself just to help give some objective perspective. The amount of shedding and the thinning you feel with your hands might make it seem worse than reality. I’m 5 days past final TC and bracing myself for the next big shed. I also bought some colored brush-on powder that helps cover the widening part. The hair drama is definitely the worst...feelin for you!
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Hi Kaylie, thanks for the encouragement, yes definitely trying to hang in there. Luckily, I also only need 4 TC and my second infusion is on Thursday, 6/28. I thought I was doing everything right but now have a bald spot above my right ear, but not the left. Weird. I guess the caps weren't tight enough on that end. Luckily I can easily cover with hair.
Maggie, thank for sharing your experience. I also contacted my cold cap rep because I was so freaked out. Granted, I started off with a ton of long thick hair, so when I ball it up, it looks like SO MUCH HAIR. She said that if I have hair on Day 21 (Friday, June 29th) then you know that the cold caps are working.
Magari, Indeed! I'd take this greasy mess of thinning hair over no hair any day!
Rwns, I think that's a good idea. I saw one of my best friends at work today (only she and my manager know about my cancer diagnosis) and she said I look the same, until of course I showed her the bald spot above my right ear. I'm hoping with all the thinning going on that nobody will really notice but me. You are absolutely right, the hair drama is the worst. I didn't even feel this much anxiety over my BMX.
I'll update on the saga.
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Hey ladies, so update, I had another major shed yesterday (Day 18) after shampooing. I've probably lost about 50% of my hair right now and I still have 3 more TC infusions to go. I am surprised that I still have enough hair on my head to look ok when I look at the quart size filled bags full of my hair. I hope enough of the hair stays put through the end of chemo and beyond.
Looking for some tips for you ladies who have been through this, what did you do with the matting? I have some on the back of my head, I'm assuming from the hairs at the nape of my neck falling off and getting stuck but I'm too afraid to touch it right now. Would a detangler do the trick?
Also, what did you guys do with the random strands hanging off the ends, did you just leave it? I'm working through chemo and would like to look semi-presentable and with this big shed, it's been so hard to get ready in the morning looking and feeling like this.
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hi everyone...I’m on day 11 and have been having all of these tingling sensations all over my scalp for the past week. I saw my doctor this morning and he said it’s because my hair is going to fall out (he’s not a fan of the cold caps). Did anyone else have this? :
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Lulabella, yes, tingling scalp is common. I had it and hardly lost any hair at all. (I had the much easier weekly taxol and herceptin regimen.). I don’t know what causes the tingling - maybe delayed reaction to the extreme cold. Anyway, keep the faith
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thanks for the encouragement PatinMN
)hi Domzie30218...still sending you strong hair follicle good vibes. Has the shedding slowed or stopped yet?
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lulabella- I am one month PFC. I was on the same regimen you are on. I had scalp tingling and soreness throughout my entire chemo, although it was the worst very early on. I still have sporadic tingling. It does NOT mean your hair is about to fall out or I would have been bald months ago. That said, expect to shed at some point. Some people start a few weeks after chemo begins, others have most of their shedding after they finish. It's upsetting and scary to see hair come out, but the coldcaps should help you keep a lot of hair. It might be thin and brittle at the end of chemo, but it's better than starting over. Hang in there. There are a lot of doctors that don’t believe in coldcaps. I don’t know why. They really can make a huge difference in keeping your hair.
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I too had and still have sore, tingling scalp...did not seem related to sheds. Also lots of peeling.
Domzie-I used my regular John Frieda conditioner to keep from having to deal with tangles. The special/approved conditioner just didn’t cut it. Did you take pics?
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lulabella- I am about 15 weeks Pfc, I too would get tingling on my scalp, it would be very tender too if I put it up in a ponytail for even a little bit. I am on the herceptin only part of my treatment, but I had really good cold capping results on carboplatin and taxotere. My hair thinned and I did get a bald spot above my left ear, but it’s growing back quickly. If you’re about day 12 today, you have 5-10 more days with your hair, then you will start to shed. You will freak out, you’ll wonder if it’s really working, or if any hair will be left by the end of chemo, but stick with it! We have way more hair than we think. Take it from us who have been in your shoes, it is worth it! You got this!
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thanks everyone for the tingling scalp advice!
My doctor really bummed me out the other day so I appreciate the encouragement. congrats on being finished with the chemo and keeping your hair, Erob321. Did you do 4 or 6 rounds? I'll being doing the herceptin (and perjeta) for a while after I finish too.
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Domzie, good luck with your TC #2 tomorrow and that the shedding will slow down. I know how upsetting it is, especially on Shampoo Days to see the amount of hair loss.
I’ve been using Kenra Daily Provision Leave in Conditioner spray just on the ends after each shampoo. It’s worked well to de tangle.
I have my final TC tomorrow! I will be curious as to whether I’ll have another major shed about 18 days out again. I’m trying to take all the advice from this wonderful group and stay positive.
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Good for you maggie2! I’m 7 days PFC and I’m bracing myself for the next, and hopefully last??? big shed. Not sure why, but this final chemo had very few SE, except fatigue was quite a bit more and longer lasting. Wishing everyone minimal SEs and shedding!
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thanks lullabella! I had 4 rounds of tch. I’m still shedding some, it seemed to come every 3 weeks, but this last time it was 4 weeks from the last shed, maybe it’s slowing down. I can only hope!
Good luck with your final tc, Maggie! May you have minimal side effects
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Maggie2, thanks for the positive vibes! The shedding has slowed down a lot and have found some incredible support private messaging here from some ladies that have very similar experiences as I. The amount of hair loss after one TC infusion was staggering. I nearly threw in the towel because I probably lost 60% of my hair if not more (granted I had A TON of hair). So luckily, I can still get by with whatever is remaining. Did you have big sheds after each infusion? I had my 2nd round of 4 TC today and I cold capped and hopefully this one won't be as harsh on my follicles as the first. HUGE CONGRATS on finishing your final chemo round!!!! Must be such a wonderful relief!
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Domzie, Rwns, and Erob: Thank you for the congratulations on my final chemo. It sure felt good to ring that bell. The first item on the agenda for tomorrow is to get these Penguin caps shipped back and out of my house!
Now, it will be the waiting game to see how much I continue to shed. My husband says I have about 50% of my hair left. After all these wonderful success stories from so many others, I just assumed that I'd come through with flying colors too. But as everyone says, I still have hair! Yesterday was very humid here and my hair actually looked thicker than it has lately. Maybe I should be glad for these upcoming days of 100+ heat indexes!
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Finished 12 weeks of chemo in May, weekly Taxol and Herceptin. Cold caps did a decent job of keeping my hair. It was dry and frizzy but I had hair. Then, 4 weeks post chemo it started to fall out along with my eyebrows and eyelashes. I freaked and called MO thinking it was the Tamoxifen I just started. She seems sure it is the chemo. This happens to some women although by no means all. I am still glad I cold capped because it helped me feel less like a patient during the chemo, but I was not expecting the gift that keeps on giving one month later. Just hoping that cold capping helps my hair grow back faster as I have read. Others on here also advised biotin.
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Hi All, I am on Day 25 from first TC infusion, just had my 2nd one last Thursday and I'm still shedding non-stop. I had what I thought was my big shed on Days 17-18 but yesterday during wash day, so much hair came out again that I'm probably down to 15% of the hair I used to have. I was so excited to wash my hair finally but when I got out I had two huge matted balls of hair because of all the hair that shedded. I still have more TC infusions to go and not entirely sure if I should continue at this point. I am working through chemo and kept my diagnosis pretty private so need to find a way to look presentable at work. I know head coverings and wigs are a no-no but at this point I'm not entirely sure what other options I have. Pretty disappointed that I lost this much hair as I thought we followed everything to the letter. Somehow losing my hair hit me harder than losing my breasts. Needless to say, it's been a rough last week.
Becca953, sorry to hear about your experience. Did most of your hair fall out post-chemo?
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Hi - I'm on DAY 8 after the first (of 4) TC infusion. I see that a lot of people lose a lot of their hair despite cold capping. I'm using Paxman. I'm committed to doing it for all 4 infusions, because of the small but real incidence of permanent baldness after Taxotere. I'll stay with Cold Capping no matter what, for the chance that AFTER chemo, my hair will have a better chance of coming back.
My question: should I keep my layered, almost shoulder length hair, or should I shave it on about Day 12? Will the Big Shed leave enough hair that I'll want to keep it? If I do shave my head, I'm assuming Cold Capping is still helpful. It's working on the blood supply and follicles, not the hair on my head that shows. If I leave my hair long, and I keep enough of it to disguise thinness, maybe that's the best case scenario? I'm just not sure how horrifying it will be to start the Big Shed, which I expect in a few days--people seem to say Day 12-19 it starts falling out.
Is keeping a small amount of my hair worth it, for the mess? Advice? Experience and perspective to share?
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Hi HikingLady, I'm one of the women who lost so much hair after one infusion after the big shed. I'm on the fence on whether to continue cold capping because as you said, there's the risk of permanent hair loss due to Taxotere as I'm on the TC protocol as well. I continue to shed I'm on Day 25, 4 days post TC#2. I can only tell you from my experience but it has been pretty traumatizing for me. Much more so than losing my breasts after the BMX. I shed so heavily on from Day 17-19, and then again after post-chemo 2 shampoo. HOWEVER, you may be one of the lucky ones that get to keep most of their hair with cold capping. I would suggest to hold off on shaving and see what you have left after. You might be able to get away without having to wear a wig, etc. Just mentally prepare yourself for the possibility of losing a ton, if not most of your hair, and you can go from there. Are you working through chemo? If not, you can wait it out and see how you feel about the hair you have left or wear loose hats etc when you go outside. I had "enough' hair after my big shed to get by without a wig but after my post-chemo #2 shampoo, I lost maybe 60% of the remaining hair I had left which was devastating and I wasn't prepared for it. I thought I'd experience the worst of it. Still, I'd recommend holding off on shaving because you're going to cold cap anyway and you never know how much you'll get to keep.
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Domzie30218: THANKS - this is good to know the reality. Oh, I'm sure I'll feel as traumatized as you describe. It's one more indignity, and one more new thing to accept as our Selves are changed by cancer and by treating it.
You're right---I won't set up my expectations, and then whatever hair doesn't fall out is a bonus. I will cold cap all four times, in case it helps my hair come back AFTER chemo. I'm fine with bald, turbans, scarves and wigs, and I have them all ready. Early August, I'm the Mother of the Bride! I found a wonderful wig that looks good and even glamorous. I didn't think Bald Mom would be good for those family photos people look at over the years.
Irony: I taught high school for 37 years and retired last year. I had cheerful brown & gold streaked hairdo, and had dyed it that way for about 15 years. There's a bit of ageism among teenagers---I kept my hair very cute, fake colors for all those years. In 2017, I excitedly grew out my natural silver hair, and was very happy to have my hair be my REAL hair. Now it's in a great layered look around my face, has interesting variations of white, silver, gray, and it looks terrific! And, now I've known for the past six weeks (since Day 1 of my diagnosis) that chemo would make it all fall out. So, I've had very little time to enjoy my Real Silver Self. Obviously, I hope that in a year or so I'll have some hair back, and hence the Paxman cold capping....I don't mind silver hair a bit, and I don't mind being bald temporarily to potentially save my life. But Permanent Baldness is really pushing it, with all the things we have to accept and live through....I'd like that not to be ahead for me, so I'll keep up with the cold capping.....
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Hiking Lady - although not universal, obviously, many women have good success cold capping with the taxotere regimen - especially with 4 treatments rather than 6. Please don't rush to shave your head - most women don't find that to be necessary. With Penguin Cold Caps (which is what I used) they tell you NOT to cut your hair because your follicles are used to a certain weight of hair and you don't want any changes to that. I don't know if that's really true, but Penguin has been in business for a long time and has a lot of experience. Standard post-chemo cap wearing time with Penguin is 4 hours, and unfortunately you won't have that amount of time with Paxman. Be sure they get a good, tight fit with the Paxman caps - good contact with the scalp is vital to retaining hair. Good luck!
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hugs for you Domzie.
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Domzie - Yes most of the hair fell out but not in patches, pretty uniformly, so I was left with a very thin layer that I can still pass off as hair in a small ponytail under a baseball cap. I had ALOT of hair prior to chemo but each strand was very thin. Around my ears it is growing back from where I lost it during cold capping. I just cannot figure out the rhyme or reason. Guessing it is just different growth cycles per strand. My hair was at about 30% remaining which was enough. Now I am at 10% but it is spread throughout my head. It is bizarre.
Also, I have heard that even if cold capping does not save your hair it does help it recover and grow back quickly. It is a bit of a pain, but if possible, keep trying. The loss may level off. Best wishes!
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