Cold Caps Users Past and Present, to Save Hair
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Hello All,
I hope this finds you all well.. I've been mostly a lurker on her for the last several months... Diagnosed with BC 5/19/2016.. Started chemo and cold capping June 13 - I am almost to the end (in fact my last chemo is this week).. I did 4 AC + 3 Taxol (4th due this week).. I wasn't allowed to cut my hair prior, so while I still have hair to my bra strap it was fine, but had a lot of it- and now it's super, super thin... Has anyone ever made it this far and then decided to not do the last treatment? I just keep reading about the post chemo shed and feel like I've just flushed my money down the toilet (580 per treatment, as I hired a consultant)...
Is it normal to feel like this? I have a lot of thinning on top and even toppix looks ridiculous.. Any thoughts? tips?I know everyone says I'm lucky to have hair with AC/T regiment.. I've read a lot of people are happy about cold capping once treatment is over and hair grows in quicker.. ?? Will skipping one cold capping make that much of a difference since my hair is falling out anyway?
Thanks in advance for you help!
Diana
I don't know all of my BC specifics-
Stage 2a- 2 tumors in left breast, one ER+/PR+ HER 2 neg, 2nd tumor ER -/PR+ HER 2 Negative
Chemo- 4AC/4Taxol
Surgery- double mascetomy/reconstructive surgery to be scheduled soon
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Diana, I am on AC/T also and cold capping. I just finished my last AC and keep shedding more and more. I think I have lost 50% of my hair. I had very thick hair too and now I wonder if I will have any left. Hopefully it will slow down with taxol and start growing again. I have wondered too if I should stop but then for sure will lose it all. Very frustrating. At least we have had hair longer than than others
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Thank you,Jiffrig ! So frustrating. I followed everything perfectly too.. Good luck I'm sure you will do well I think it starts to slow down, let me know how it goes.. I'm losing more on the top of my head now and despise going out of the house (especially since you're not supposed to wear anything hat, scarf, etc..
Dumb question but where do i go to create my history signature (I thought I changed on my settings, but it's still not showing up..
Diana0 -
You probably forgot to "save" your info, I did that at first and then you have to make sure you make info public
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Hi Everyone! I haven't posted since February but I read your posts every day and feel like I know all of you! I felt so awful during chemo (Feb-May) that I didn't feel like posting and since then it's been a whirlwind of surgery, radiation & moving across the country and I haven't had time to sit down and formulate my thoughts about my cold capping experience. It's been an interesting one though and I thought I would share . . .
January 18 - 2 weeks before chemo
I used Penguin Cold Caps and my husband was my capper. After a lot of anxiety the first round, we felt like we had it down to a science the remaining 5 times and I found it perfectly tolerable after the first few minutes. No frostbite, no peeling/flaking scalp, no headaches, etc. I didn't follow protocol exactly but I was very gentle with my hair. I washed in the shower with a low flow handheld and cool water, used no sulfate shampoo, combed gently with wide tooth comb and slept on a satin pillowcase. I only washed my hair every 7 - 10 days and I used Edit root spray as my gray started to show. These are the things I did right! However, on occasion I would blow dry my hair on cool (stayed away from my scalp) and very gently used a curved brush to style. My hairdresser told me that if hair is loose enough to be dislodged by that then it was going to come out anyway!
Just before 3rd chemo - March
My chemo was TCHP and my first big shed was at 14 days. I then shed pretty evenly throughout chemo with the only bare spots being just above my ears where the cap couldn't reach but I could hide those spots with the rest of my hair. My pre-chemo hair was fine but very thick and shiny. As chemo went on, I definitely got the dry, frizzy troll hair but not so much that anyone noticed. The naysayers at my infusion center were surprised and impressed by the looks of my hair at my last infusion. And I couldn't have been happier with the success of the cold caps - I was feeling pretty cocky until . . .
Day of last chemo
I finished chemo May 23 and had a lumpectomy on June 22. About 8 weeks PFC (in late July), I started shedding like crazy - almost as much as the first big shed at the beginning of chemo. Within a couple of weeks, my hair was SUPER thin and with the gray that had grown out, I went from feeling pretty confident to feeling pretty awful. I honestly thought that it was all going to come out at once and where I had previously been able to keep the gray covered up with root spray, I could no longer get it to look decent enough to go out without a hat. I ordered Toppik in Dark Brown and this is what it looked like compared to my hair:
July 22 - Toppik was GREEN next to my hair!
Surely this was a bad batch since no one has hair that color! But it really didn't matter because suddenly I noticed that at some point I'd lost a LOT of hair at my hairline (I had NOT noticed) and it was starting to grow back and looked ridiculous and no amount of Toppik was going to help!
I look like a mad scientist!
By the first week of August - when my hair looked like this - I resigned myself to the fact that I was going to need to wear a wig. Fortunately, I just happened to have one that I got on my first visit to the Breast Health Center after my diagnosis. The Nurse Navigator had shown me the "wig room" and told me I could pick one out but I told her no thanks - that I was doing cold caps and wouldn't need one :-)) Besides, all of the ones on display were solid color and very "old lady" looking to me. However, she proceeded to open a drawer to show me that they had more wigs still in their packages and lo and behold, the first one she pulled out looked EXACTLY like my real hair so I took it - just in case!
So for a month and a half now, I've been wearing my wig whenever I go out and to be honest - I LOVE it! Even with my hair looking like it does, I can put the wig on and go from looking like a hag to pretty normal in 30 seconds. I can see keeping it around even after my hair grows out for those days when I don't feel like messin' with my hair.
So the good news is that my self esteem is decent because I have the ability to look pretty normal (except for no eyelashes) but the bad news is that cold capping didn't work and I am SO disappointed that we spent so much time and effort and money on it - almost $4,000. However, someone else on here mentioned something about a month ago that I think may have affected my outcome - poor nutrition!
Starting after my 2nd chemo, I couldn't eat or drink ANYTHING! Everything I put in my mouth gagged me and it wasn't a taste issue but more of a sensation (or lack thereof) on my tongue. It's hard to explain but I had this sort of whole body numbness throughout chemo and my mouth/teeth/tongue felt like I'd just come out of dental surgery. I was almost afraid I would choke and everything I put in my mouth triggered my gag reflex so I had nothing but Carnation Instant Breakfast - my husband would force me to choke down 2 a day through a straw - throughout the rest of chemo and for about 1.5 months afterwards & I lost 30 lbs. in about 3 months! So I asked my MO & she agreed that the lack of nutrition + the fact that I wasn't drinking water to help flush the chemo out of my system is perhaps why I kept most of my hair during chemo but then lost so much afterwards.
But this is just a theory and since others on here are having similar loses 8 - 12 weeks PFC just like me, maybe there's another explanation? I don't really know but obviously I thought I was home free and I wasn't so my advice to those still capping would be "Hope for the best but plan for the worst". I'm SOOO glad I had a wig on standby and I would recommend that if you have access to a free one - get it - "just in case"!
Sorry this was so long but I didn't know how else to explain my experience and I hope this might help others manage their expectations. I'm still thankful I didn't have to start from "bald" and I have hair growing like crazy all over my head. I'm hoping that maybe in 2 - 3 months when the wee little hair in front gets long enough, I'll be able to ditch the wig.
Many thanks to all of you on here for sharing what is, in all of our cases, a ridiculously stressful journey!
Leigh Ann
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Willa- Thank you, and hope you're doing well. It's nice to be able to go out and run errands without anyone giving you asecond look. However, ppl who know me and haven't seen me for months when they see me for the first time will probably think "what the hell, what was she thinking chopping off perfectly nice and healthy hair to such a short do". For now I just hope for fast re-growth daily.
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Ruddycat: Wow, thanks for taking the time to share your story. Yikes. On the positive side, you and your wig look fantastic. Beautiful! Hope you're feeling good too.
I've been having a lot of anxiety - what a waste of time - about what is going to happen to hair PFC. I'm in that TCHP boat (only just about halfway through) where I feel like I'm doing well (fingers crossed and knocking on everything wood) and sometimes feel remotely optimistic. Ha. That would clearly be a mistake... Thank you for the excellent reminder about managing expectations.
Do you mind if I ask you a question about your wig? I got one upfront. It looks very much like my own hair but I'm afraid to wear it even if I need to because it feels like it will come right off. I sense that if I were to be surprised by something or throw my head back in some big guffaw (not that chemo inspires good humor) it would sail 4 feet through the air and land at someone's feet. Are you constantly aware of it or do you forget? I got a cap and had someone help me fit it but I feel so insecure.
Again, thank you for taking the time to share your experience and photos.
Wishing you all good things and much health and happiness. Take care.
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Willa - since I never planned on needing it, I've never had anyone show me how to wear the wig so it's really just been trial & error! Before I had my hair trimmed (I forgot to mention that I had the back cut off at 8 weeks PFC because I had a mullet going on, I wore the hair net thingy that came with the wig to keep that longer hair up under the wig. But once I got it trimmed I stopped wearing that thing because it was hot and uncomfortable. It feels so much better without it! My wig has little Velcro straps on each side that can be used to loosen or tighten the fit but I'v only adjusted them once. Overall it's really comfortable & I hardly know I have it on but I did feel like you described in the beginning - like it might just fly off at any time! I also almost always wear my sunglasses on my head too - whether I need them or not - because I think it makes it feel more secure & maybe not look so wig-like!
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hey everyone, wanted to post an update on my Penguin CC experience for the benefit of others.
I did 6 rounds of TC, followed protocol thoroughly, and hired a pro capper.
I lost 85-90 percent of my thick long blonde wavy hair - most of it during the big shed between days 16-31 or so, but I do shed everyday a little bit. I am only 2.5 weeks PFC now so I pretty much expect to lose the rest of it over the next several weeks.
I have to use wigs, hats, and scarves each day as I have large bald spots.
I know I am in the minority, and that caps do work for so many women. I've met three girls in person in my cancer support group who kept pretty much all of their hair. Two were on AC with Taxol, one just did Taxol - so not sure if the regimen is the reason or what. Most people I've met on TC had moderate to significant thinning, but not nearly as extreme as me.
The experience was deeply traumatizing, but like getting breast cancer itself, there's nobody to "blame" really. I know if I hadn't tried capping I would have regretted it and wondered "what if."
Moving forward, my big stress is if the hair comes back - I am only 31yo, so I sure hope it does. I don't even care if it comes in grey or curly or whatever, I just want to have hair again.
So as of now I don't count this as a major tragedy provided it all grows back (I've wanted to try out a pixie cut and a short bob anyway) - but if I end up suffering permanent hair loss, I sure will!
My big question to those who ended up with actual bald spots - when did the hair return??? I wonder at this point if my regrowth timing will be similar to a patient who didn't cap, which seems to be about 6-8 weeks to see any new stubble.
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Hi everyone,
Seems like there are varied experiences with the cold caps. Can I ask what PFC means I am guessing post chemo? I am 25 days post first TC chemo and I have had my 2nd one. Shedding continues. Seems all over but there are definitely major thinning areas. Wanting to continue with the process to see if I can maintain what I have. I do have a wig as back up so we will see. Not sure why but this has seemed like the hardest part of the whole process. Thank you ladies.
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Hi all:
Thanks, Ruddycat.
To Elise, CR77, dlk617, Revnet, Jiffrig and everyone else who is stressed or depressed about hair - so sorry. Everything about this is mother hard. For me, the capping situation, with so much uncertainty, drives home the random nature of everything about cancer.
CR77 - PFC is post final chemo.
Hugs.
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Nothing easy about the whole process and it is hard not to be in control (even thought I know we are not in control). I can't wait to be PFC my last is scheduled for October 27! You ladies are all amazing and I am learning so much from you
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Aimless - man did it feel good to actually rinse my hair out under that shower, lol. Hope it was a welcome change for you too! No repercussions so far and I am planning to wash tonight and do the same. I have been using conditioner as well and it is making my hair a lot more manageable.
Revnet - I was the same way. I did really well through chemo and about 3 weeks pfc all hell broke loose on my head. I am 13 weeks pfc and I hate to say it but things really didn't slow down until 11 weeks pfc. Of the hair I lost (probably about 50%) at least 90% of that came out pfc. I was definitely not prepared for that. That said, while it did get thin all over, I have still been able to manage without a wig or scarf or anything. I broke the rules and started clipping the front back to help with the bare areas and am just waiting on that to all fill in.
This morning I went so far as to use a curling brush just to tame some of the ends and try and make my wispies look kind of intentional - sort of worked and I lost a little hair to the curling brush but not much at all. Not sure I have filled in enough yet to get a cut but I am going to have a consult with my stylist and see if she can work some magic!
I do think that all over shedding is normal for those ladies that have asked. And I agree with everyone that having so little control over so many things in life at one time is hard to take. I keep telling my husband that while the cancer may be "gone" the aftermath will live on forever. Happy thoughts to all of us that we can keep on keepin on!
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Elise - so very sorry for what you're going through. I lost my hair mostly post chemo, and the stress of trying to save my hair, capping, and not knowing what the end result might be was the hardest part of this ordeal. I'm exactly 11 weeks PFC today, and I have about 30% hair left. Not the result I hoped for, and very disappointed. I never had bald spots but overall heavy shedding. So far, I had a trim in about 4 1/2 post chemo and this past Sat had a real very short pixie cut. My stylist said had I not done cold caps, it would've taken at least a year or so to have this much hair, so hang in there. Every bit of hair you save is a good thing. Take vitamins and eat well. It'll help with the re-growth. I take biotin one day and Viviscal professional hair growth system supplements the next day.
Hugs.
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I went to a ACS seminar at the hospital yesterday (Feel good, look better") and all the other gals were bald. It did put into perspective that I did still have hair and to the general public look "normal" but I am only just finishing AC and have lost half of my hair. PFC does not look good for me. I am actually going to go to my hairdresser tomorrow and every 2 weeks to have her gently wash my hair. I have a hard time getting all shampoo out with pouring water over. I may have her trim up ends a bit. Ugh
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CR77 - we are on the same schedule. Oct 27th is my last treatment as well. I know there are the side effects after to deal with, but I am counting down the days to my last treatment, last cold cap, and getting my PICC line out!
Thanks to those who have shared their experiences beginning to end. It helps to understand what common, best case, and worst case scenarios are. I have not purchased anything aside from a couple headbands, so am ill prepared if things go south.
With all the restrictions from capping, it is hard to look presentable while hair is thinning. My hair still gets so oily and I don't have a clue when it comes to scarves... At some point if mine gets very thin, I will probably ignore the restrictions and cut my hair and cover my head. With the taxotere, I am mostly trying to avoid permanent hair loss so I want to keep focusing on that.
I have heard a lot of success stories as well. My doctors office has had only 1 other woman who has capped and they said she did great and kept most of her hair. Keeping my fingers crossed.
On a related note, I have been icing my hands and feet and taking B6 and so far (knock on wood) no neuropathy symptoms.
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I'm sorry to hear about everyone's bad experience. I'm not sure why it works well for some and not others. I think if I did 6 TC's instead of 4, I'd be wearing a wig. I lost a TON of hair.
Elise- I got a large bald spot on top and about 5 weeks PFC I had baby hairs coming in. Now I'm around 4 months and I think I have more coming in than I lost. And the bald spot totally covered around 8 weeks PFC. Nobody can tell I finished chemo recently.
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Well I started my first big shed at 21 days into chemo. Have been following the regimen beyond beyond. My question is- if I run my fingers through my hair now, am I just pulling out hair that was going to fall out anyway? Or am I causing more shedding? I've been afraid to touch or wash my hair for days and it is brittle and fluffy. I feel like gently finger combing would help bu eveyr time I touch it, I end up with hair everywhere.
Ps my rational self knows it's totally not noticeable but that did not stop me from nearly blacking out the first time I saw it happen.
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Myraclaire, I am on AC also and I am just finding out, it is brutal on shedding. I am with you in the reasoning that we are not "pulling" it out but it's loose anyway, but I am done with AC now and have way less than 50% hair left. Hope it stops on taxol. I only wash every 2 weeks, but this is hard to deal with. Getting my wig ready
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Question for all the ladies , I am 6 weeks post AC and Tax, I have had quite a bit of thining. Some regrowth is coming back though and I am encouraged. Has anyone used any regrowth products. Folic acid/ bosley /castor oil ? Basically I have been taking the supplements but am now wondering if a little boost from other products can help. I do know PCC don't recommend it but not sure following their reigime will hurt some completely thin areas.
Reason why I ask is that castor oil / Latisse have helped the eyebrows and eyelashes I know is different but I wonder if anything to stimulate a follicle that has no hair could help.
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Hi everyone, I'm new here and will add my stats but I have a quick question that I hope someone can help with. My question is why can't you cut your hair before starting chemo and using cold caps. I have very thick curly hair that I straighten and I know that I won't be able to do that again for a long time, so the best way for me to manage it without doing more damage would be for me to get it cut shorter and just let it go curly but I can't do that with the length that it is now. I thought I would get about 3 inches cut off and then it would be easier to take care of. Thanks for you help.
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Any updates from people using FAST shampoo?
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Kshorten-
Great question. I WISH I would have trimmed it pre-chemo, but was hesitant to "violate" protocol. The whole texture of my hair has changed and the ends, which were dry before, are breaking off now (day 22 of ac
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hi Kshorten!
I was told to cut my hair at least 1 week before cold capping because the follicles get shocked and need to adjust to the change in weight. I cut 9 inches off 2 weeks before chemo. I'm now at day 20 after my first TC infusion and shedding moderately. I'd say so far so good. We shall see.
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Thanks so much for the responses I just know that if I don't cut some of it off I'm going to be miserable. Have an appointment to get it cut 2 weeks prior to first treatment. Trying to do my Chemo at the clinic that has the DigniCap but may have to use the cold caps. Haven't decided if I'm going to do 4 rounds of TC or the AC/T regime. Leaning towards the TC.
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kshorten, if you want any chance of keeping your hair don't do ADriamycin. I am on AC and wish I had known
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kshorten,
Overall it seems that AC is much tougher on the hair than TC. I remember reading that the chances of keeping your hair with AC is only 50%. The success rate with TC is somewhere around 80%.
Please understand that "success" is defined by the cold cap companies as saving enough hair so that you don't end up needing to wear a wig or other head cover due to hair loss. You will most likely still lose some hair even if you cap. Most people experience thinning, some significantly more than others.
You might want to look at the overall side effects of both chemos when making your decision on the regimen. Taxotere can sometimes result in permanent hair loss. If you cold cap you will hopefully dodge that bullet. I did TC so I don't know much about AC. Maybe others who did AC will join in and share their experiences.
Hugs!
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kshorten & jiffrig
Please remember everyone has various success with cold capping. There are many women, including myself, that DID have success, very good success, with penguin cold caps who did have adriamycin. I did the 6 month A/C + T protocol and was very happy with my results. I am almost 3 weeks PFC and no signs of increased post chemo shedding either. If you really want to try...start off thinking positively. Best of luck.
ILoveArt
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I am getting ready to have my 3rd TCH treatment on Friday. I have been cold capping from the start. Even with the cold capping, I have had extensive shedding/thinning (I had thick hair to start with). I am starting to have places where I am close to bald. Just wondering if anyone has experience with this and maybe photos to share. I'm on the fence of whether I should continue cold capping or just shave it and move on. Not sure how regrowth will go if things are so uneven when I'm finished treatment in 2 months. Help and suggestions welcome!
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kshorten -- I cut my hair about 1 week before cold capping, and I'm so glad I did. I just had my usual trim but probably took off 1-2 inches. It made it so much better as it's grown out over time. I had that cut in January, start chemo in January, finished chemo in April, and I still have not had another cut. It's starting to get scraggly, but it's not growing very fast. I'm so glad I got a good cut and style beforehand, so that I was able to keep that style for months.
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