Cold Caps Users Past and Present, to Save Hair
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Ladies, I've got a question about hair products while using the cold cap. My chemo does not start until March 19th, so I've got a little time to think about all these questions.
My hair is curly and slightly wild and I've read that I should not put on hair products such as mousse during chemo because it weighs down the hair. Have any of you tried it with success? I would only put it on the two days a week that I would be washing my hair and not a lot of it, just enough to not look like a crazy woman. What are your thoughts on this? 0 -
tld2017 - My stylist recommended using aloe vera gel as the "styling product" for my wavy hair. It is natural, water-soluable and won't build up on the hair.
yvonnasf - You will definitely need a helper to change your cold caps. Most of us don't find the actual coldness too difficult to deal with; taking an Ativan and some Tylenol before each infusion helps. Is is indeed expensive and a lot of work, and results vary greatly. Only you can decide if it is "worth it" for you. Read several pages of this thread so you can make the most informed decision.
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Hey Girls,
thought I would pop in and give my experience 6 weeks PFC. I had thinning directly on top of my head after using Dignicap for 4 cycles of TC. About a month PFC, I was shedding-nothing like the first big shed I experienced just before my second infusion. But, I was picking hairs off my jacket with some frequency. Then, about 5 days ago, I started having all these tiny baby hairs coming in on top where it had thinned. I'm still doing my "comb over" as I lovingly call it but in another couple of weeks, I won't have to. So, hang in there, girls! 5-6 weeks PFC seems to be the "growth time!" :-) Oh, and the shedding has now slowed down.
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For me cold capping has been worth the trouble. Even though it didn't preserve as much of my hair as I would have liked I felt it gave me a better chance of keeping my hair follicles undamaged. I was on the Cytoxan/Taxotere regime and I was paranoid about permanent hair loss. I hate to admit this but I still have an irrational fear that my hair won't grow back. I distract myself from it otherwise it's like watching paint dry, lol. Nice to hear LizabethM that your hair growth is revving up.
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For me cold capping has been worth the trouble. Even though it didn't preserve as much of my hair as I would have liked I felt it gave me a better chance of keeping my hair follicles undamaged. I was on the Cytoxan/Taxotere regime and I was paranoid about permanent hair loss. I hate to admit this but I still have an irrational fear that my hair won't grow back. I distract myself from it otherwise it's like watching paint dry, lol. Nice to hear LizabethM that your hair growth is revving up.
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Cali58--Thanks for sharing your update and posting it on the before/after thread. My "before" looked so similar to yours. I, too, lost about 80% in the end, same regime. Mine didn't fall out during chemo, most has fallen out slowly all year. So slow, I didn't even know without looking back at pics. I am still WAY ahead of the other women who didn't cap so it was worth every penny. No one could tell at any point that I was going through chemo. The hair made me feel normal when nothing else did. Don't get me wrong, I still get a sick feeling in my stomach now and then when I see a pic from pre BC. I LOVED my hair. but it WILL come back. Just a matter of time. My bangs finally hit my eyebrows this month, like they are intentional. Baby steps!!
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Good evening capping friends!
Thanks for celebrating with me and my picture from the festival! I had such a blast! But life has been a whirlwind since, and I will be quick to share..... flew from Florida to Houston texas to visit MDAnderson to discuss proton therapy. A full day of docs, scans and tests and I flew home to charlotte arriving Tuesday evening at 12:45am. Wednesday I met with my oncological gynecologist and she managed to pull together all the details for me to have my oopherectomy along with port removal tomorrow! So I'll be up at 5:00am to head in for surgery! Please pray for a safe and simple surgery. 🙏🏻🙏🏻
I will return home in the afternoon and take time to read all the recent entries you all had posted. Have a blessed day and thank you for prayers! ☺️🙏🏻
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I made it thru my BMX Tuesday!!! I stayed 2 nights in the hospital for pain management. And pathology is all Negative! No cancer in right breast. Left breast had Atypical Lobular Hyperplasia, which I knew about from a previous MRI biopsy. It's has a high chance of devolpinig into cancer down the road and it also means the right breast could develop too. It's reason I decided on BMX.
Thank you Red, Margari & Mama for your good wishes. Margari how did the dentist go? Mama hope surgery goes well, keep us posted.
So I'm 3.5 weeks PFC and my hair has shedded the most it has during any infusion! I got home from 3 days in a hospital bed with a hugh matted clump of hair! I had to cut it out...ugg! No new hair growth yet.
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Ack! The hair shedding began today. It was post chemo 2 wash day. I guess it was due. It's still hard to accept. It was fine for the prewash comb through and then I hit the shower and as soon as I put shampoo in my hair, it just kept coming out. Just sat there crying about how all of this just sucks. I'm not looking forward to next wash at all.
MamaFelice-I hope all went well with your surgery and you are comfortable.
ItsStillMe-glad your BMX and chemo is all behind you. Hope your hair fills in fast.
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rockcity- hugs xox💓, I'm due to wash my hair tomorrow and I'm just waiting for it.. I will also be in the shower sobbing .. hopefully it just looks more than it is!
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Hello,
I just joined. I have been researching cold caps because at Mayo Clinic they can offer it for free of charge. I am a candidate because I only need four TC sessions. I'm scared about the possibility of not killing some cancer cells in my scalp. When I search, all sites state that as a risk, but how much is it a risk? I need to talk more to my oncologist since he didn't mention any risks. I also want to wear a wig since I can't style my hair when I have business meetings and special events. Does anyone else wear wigs on top? Does it cause more hair to fall out? Thanks so much for sharing your experiences. I have enjoyed reading so many.
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mamafelice- good luck on your surgery! Hope it goes well!
Itsstillme- so happy to hear your bmx went well and the results are so positive! Congrats!
Cali58, klvans - thanks for your positive posts. It's reassuring to see your great results!
So my big shed started on Thursday and it's freeking me out! So much hair has fallen and so fast. It hasn't stopped yet and I worry at this rate I won't have any hair left by Monday. I washed it on Friday and so much came out on my comb afterwards. I merely touch my hair and it falls. Will this shedding slow down?
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For me the first shed was the worst. Wash as little as possible. Take mats out gently with hair shine before washing and knead the cap frequently while it's on your head to get a close fit. Those are my tips FWIW. GL to all cold cappers.
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Other posters have recommended using cornstarch to remove any tangles/matting. (Also serves as a natural dry shampoo!)
Mamaloves - I do occasionally wear a wig when I need to look more presentable than my currently thin, graying, unstyled hair will allow. I use a wig cap to protect my hair from any friction, as well as to keep the wig cleaner. My understanding is that there is virtually no risk of breast cancer cells metastasizing to the scalp, which is why cold capping is safe. But this is definitely a question to discuss with your oncologist. I think it is great that your clinic is offering cold capping at no cost!
ItsStilMe - So glad to hear your surgery went well!
MamaFelice - Sending good thoughts your way. Please check in to let us know how you are doing when you can.
My dentist found nothing wrong with my tooth. Said he thought it was likely irritation from gritting/grinding at night (I wear a nightguard) and/or inflammation from the chemo. It was not even bothering me on the day of my appointment, but flared up again the following day. He will recheck if it's not completely resolved in a couple of weeks.
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Happy Sunday CC friends!
My ovary & port removal surgery Friday went well Just been resting and recovering all weekend. Mainly sore with a giant bloated belly, but no major pain. Now I can check that off my list! I will begin proton therapy in 2 weeks at MD Anderson , and start Arimidex as soon as I feel surgery issues have worn off. My hair keeps on shedding but still passing in public...like ItsStillMe, when I reached the 3.5 week PFC mark, I shredded a ton, but has definitely slowed down since.
Rockcity & Pbello-- Congrats on getting through your big shed! That is the one where the most falls out....that's why everyone on this thread warns new cappers about it. Can be shocking, but you won't have another shed like that one. Imagine if you were not capping, you would have lost all of your hair from that shed. Hang in there and keep going strong!
JLove-- how did your big shed wash go?
Magari--how is your scalp doing?
Amelia-- have you started to lose your body hair? Mine had a shed after first 2 infusions, but when I had 3rd she'd right after infusion 4, my body went bald. Still no sign of it growing back yet.
So how are some of the other capping newbies doing? Love&Light's mom, Schlomit, Cathy Book, Teacher of, tld2017.... hope you all are feeling well, and would love to hear from you all with updates.
Off to rest and try to flatulate out some of this air in my tummy cavity! 😜
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I'm day 17 post 1st chemo now, scalp is tingly, have had more a headache/soreness and almost like chills from it at times .. I keep finding random hairs now on jacket/shirts now and when I washed yesterday , after a combed there was a little more than usual. I think im in the middle of the big shed. Did everyone's scalps get uncomfortable?, I keep thinking it might be a bad sign it might all just fall out!😣
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jlove1821- I’m on day 6 of round 2 and have been having scalp tingling quite a bit since early after round one. It’s been a bit better recently, kind of off and on. My first post chemo wash Friday is when my hair started to shed. The past two days I’ve had little shedding, but I’m due to wash my hair again tomorrow. I don’t think the tingling necessarily indicates the hair is about to drop or mine would have been falling out weeks ago.
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Good morning all. MamaFelice, glad to hear of your progress and thank you for asking for us. I'm so looking forward to the day I can schedule my port removal as signifying my reaching another milestone on this unwanted journey.
My first big shed, which pretty much started on schedule on day 19 following my 1st chemo, has slowed down, but of course there's still some daily shedding. I'm wondering whether there's another big shed coming this week as I reach day 19 after the 2nd chemo. I've tried to limit hair combing and wet washes, but the itchy scalp is challenging. Having read from those of you who are PFC, I know there's that last big shed, so I want to make sure there's enough left to shed and still leave something behind.
This morning I meet with my surgeon. I developed a strep infection in a very small, pinhole size, spot along the scar line from my lumpectomy re-excision (she didn't get 100% clean margins from the original lumpectomy and had to go back and address three areas). I've been dutifully taking the prescribed antibiotics, and am hoping she (the surgeon) will clear me for my 3rd chemo this Friday. I never thought I'd actually be hoping for the chemo, but at this point I don't want anything getting in the way of finishing by the end of this month. I also have to admit that having scheduled my capping team, I didn't want to deal with the stress of having to worry about whether and when these kind folks would be able to accommodate the change. Just hoping for the thumbs up.
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Hi! So my hair is still falling! I believe I’ve lost about 50% of it at this point. I have a bald spot on the right side right on the bangs and top part. The good thing is that I can do a combover as my left side seems to have been less affected. I knew that i was probably going to loose a good amount as I’m doing the AC treatment. But nothing prepares you emotionally for going through the big shed. I hope it will slow down today/tomorrow. Keeping fingers crossed! By the way, I’m doing Dignicap
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Rockcity-I have had the same scalp issue as you and Magari. I’ve had really good success with Avalon Organics Tea Tree Scalp Treatment shampoo. Then I used the L’Anza Scalp Healing conditioner I had been using all along. My scalp is completely healed and no more oily goo or giant flakes. I totally sympathize with you-it was so not pleasant.
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About the shedding-the ‘big shed’ is definitely the worst and it takes a bigger girl than me (who almost never cries about anything, even my diagnosis) to not cry in the shower on that first shower shed day. So I allowed myself that boo hoo moment, determined that it will be what it will be, and moved on. It’s hard to explain, just like it’s hard to explain labor, to someone who hasn’t gone through it, but for me it was a series of diminishing expectations during the six cycles of chemo. First it was “I am going to keep my hair with cold capping”, to “I am going to lose some, but only 10-20% of my hair to chemo”, to the big shed shower sobbing weekend of “Oh God, all of my hair is going to fall out”, to “Well, it’s going to be how it’s going to be-wait and see”, to “OK major bald spot-rock the combover/barrette at crown”, to “Geez, how much hair can a person lose before they look like they have no hair”, to “Made it through, still have hair, now it can start growing back & I don’t have to start from scratch”. There are varying returns on cold capping, but overall I get the sense for most of us it is ultimately worthwhile. Despite the expense, discomfort and personal trauma/drama, for me it has been. I’m still only a week PFC, so I’m sure my story isn’t completely written but I hope it helps you even a little bit. Hang in there.0
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2catsinthey- thank you for your shampoo as conditioner recommendation. I just switched a week ago to Acure clarifying shampoo and conditioner. So far my scalp feels better. I've seen the Avalon products at the grocery and will switch if i don't get complete relief. Also, each of us hope we will be so lucky to keep almost all of our hair despite the varying results we know are realistic. I really appreciate your insight into dealing with hair loss. Losing your hair is tough to deal with when you are really trying to keep it
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Schlomit-- Bummer on the infection, but so happy it was found and being addressed. Infections are taken very serious during chemo no matter how small. And yes, from my experience, there was a heavier shed around 21 days after each infusion including the last one. How many rounds of TC are you taking? I had 6... so if you have the more traditional 4 infusions, your hair should be in great shape when you are finished!
Pbello-- from your pic we can see you have some thinning on top. Def can play around with your part to accommodate sparse spots, and also use a powder or toppix-type product to fill in. I recall others that have used dignicap about needing to place something on top of the cap to push it closer to the scalp, and ensure snug fit. Is there someone that can help you with it at your next treatment?
2cats I think you described the emotional journey we all feel in this process. I am still shedding 5 weeks PFC, and I'm okay with that. I don't know where the hair keeps coming from, and I wonder when new under hair will start to grow back in. I just know that having hair through this process has been a huge blessing for me and my family. Praying for positive results for everyone!
I finally made it to a Look Good Feel Better class yesterday. What a lovely experience! I mostly enjoyed them helping me with drawing in my eyebrows and eye makeup to help my eyes pop with few lashes. If you haven't taken it yet, def do! The swag bag full of makeup was over the top generous as well!
Keep Calm and Cap On! 😍☀️🌈
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this is my Dignicap bald spot. I had the old cap (green - medium) and gauze was placed between silicone layer and neoprene layer. I can do a bit of a comb over from front to back and with a clip (like I had in middle school). The nurse pointed out little stubble hair growth around the bald spot - i don’t see or feel it.
I have a wig. Then again I haven’t left the house in almost two weeks due to a chest infection so haven’t given it a trial run.
I completed my last EC yesterday but still have to contend with the weekly Taxols. I cannot fathom icing head, hands and feet for that.
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Amelia, I've been icing my fingers/toes for the Taxotere part of my chemo. The toes are easier with the special socks I purchased which have pockets for the ice packs. I put two small frozen gel packs (3" x 5") inside a pair of fuzzy socks and then stick my fingers between the gel packs. The Taxotere is a 1-hour infusion (don't know if it's the same for Taxol), and the nurse at my chemo facility recommended keeping my fingers/toes iced for an additional 15 minutes after the Taxotere infusion is finished. It's not fun, but I just keep an eye on the time, bear down, and distract myself with conversation with my capping buddy.
MamaFelice, hmmm.... so if today is Day 18 after my 2d chemo and the 1st big shed has finally slowed down, I can look forward to another big shed to start in a few days? Oh, joy! {insert rolling eyes emoji} Well, this morning was hair wash day which I finished with an apple cider vinegar/water rinse, so for a few hours, my head feels happy. While it's way too early to see any new hair growth, my chemo started about 5 weeks after my last hair color treatment (which I had before I knew I needed chemo), and the fact that I'm seeing what appears to be darker hair (my original color) and gray hair at the roots suggests that what's there is growing out; while not great cosmetically, it's some growth and that's fantastic.
Yesterday w/the surgeon went well. She seemed satisfied with the progress of my recovery from the infection (I still have 2 more days on the ampicillin) and cleared me for chemo #3 on Friday, subject to the final go/no go by my oncologist with whom she spoke before I left the office. (My breast surgeon's office is across the hall from the oncologist's office, so they work together frequently.) So, the plan is to get ready for Friday's chemo, including getting the dry ice Thursday night, and showing up w/all my gear and capping buddy Friday morning. My white cell counts have been recovering well from the first two treatments, so I'm relatively confident we won't be going home early. And, yes, I only have four TC treatments, and my chemo will be finished.
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Hi, all!
2cats - Perfect summary of the acceptance process most of us must go through re what it means to "keep our hair."
What I've got left at this point is thin, frizzy and graying, with a very thin spot on top not much different from PBello's and Amelia's. So it is most certainly not pretty hair. And without the ability to style or color it it won't be for some time. But it is about 50% more hair than I would otherwise have at this point. I have one more infusion to go (!!) and am hoping for no more major sheds. Can I just say how tired I am of finding my hair *everywhere* around the house, on my clothes, etc?
I have not been icing fingers/toes during Taxotere, but have been sucking on ice chips. I've had no neuropathy symptoms thus far, but have had some issues with taste changes and the feeling of a scalded tongue following a couple of my chemo sessions. No full-blown mouth sores, thank goodness.
MamaFelice - Glad you enjoyed the Look Good Feel Better workshop! I did as well and join you in recommending it to those who haven't yet been to one.
Went to Nordstrom yesterday to be fitted for my first "real" bra since my surgery in October. (I've been wearing the stretchy type and have tried at least 5 different brands/models, none of which has been comfortable for more than a few hours.) The young woman who helped me was beyond sweet. I tried on about 25 styles and found 2 that I hope will work. Wearing one today to see if I can keep it on for a full day. Again, this has been a process of diminished expectations. I spent far more for these bras than I have ever done in the past and they are extremely "basic" looking, even though I am fairly small breasted and used to be able to find lots of pretty ones that worked just fine in my size.
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Hi ladies,
popping in to say hello
I still follow the thread and think of you ladies often, but ya'll are rocking the advice and support for each other, so I haven't had much to chime in with until today. Icing for taxotere and taxol - I would highly recommend icing the entire bottom of your feet and hands, not just fingers and toes. From what my MO told me and I've read, peripheral neuropathy is based on the cumulative dose, so that it is more likely to show up towards the end of treatment or be more noticeable/last longer. I had 4 rounds of TC - no problem with feet or hands the first 2 treatments, but pins/needles sensation in toes and fingertips plus a mild burning sensation especially on balls of feet and a little on the heels that started with treatment #3. It went away in about a week, so my MO kept me on the same dose of taxotere for my last treatment and made sure that I was icing during the infusion (the RNs also had me ice 15 min before and after the taxotere, which makes sense when you think about how we do it for capping). My neuropathy was worse after treatment #4 (stronger pins/needles in fingers and burning on soles), and took about 3 weeks to go away. It sounds like a lot to ice along with capping, but considering peripheral neuropathy is a common side effect and can be permanent, I felt it was even more important than my hair.
Will post before and after pics next week.... I'm soooooo excited to be 5.5 months PFC, and GETTING MY HAIR COLORED on Monday!!!!! I have lots of wonderful new hair sprouts, but when I pull my hair back they stick out like Krusty the clown on the Simpsons, so I'm hoping she can work some styling magic
Either way, just covering the grey will be heavenly Hugs to you all,
Willow
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I had the same feeling in my heels after infusion #3 with TC--Like a burning for about 10 days. After #3 I had walked a lot in a boot that didn't have a lot of support so I thought it was from that but I read that the pounding can contribute to the neuropathy so I made sure to wear socks at home (I wore the sport booties with the cushioned heel) and tennis shoes for absorption when I went out of the house for a about a couple weeks after the infusion.
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Losing long strands all day long the last 2 days🙄 slowed down a little today.( day 20)
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hi ladies! This is crazy! I wrote two posts yesterday and it seems neither got added to the thread! I’m testing this one out before I spend time writing a lot. Hope this one gets added.
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