Cold Caps Users Past and Present, to Save Hair
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I just started Taxotere/Carboplatin/Herceptin and did Penquin Cold Caps at my first infusion. It is a bear of a process but I am hopeful that I can reduce hair loss over the long term. My oncologist said hair will start falling out within 1-2 weeks after my 2nd infusion so we shall see! Best of luck to those giving it a go!
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Meow0369 - I take a B complex vitamin and I wash my hair with Avalon Organics Biotin B Complex shampoo. It’s supposed to be a hair thickening and hair growth stimulating shampoo. I think age is a factor so after all that has happened and declining estrogen, I think my hair is okay.
For a while after chemo and everything, I took Evening Primrose Oil supplements and I think that helped my hair regrow. Not sure if it would interfere with anything else you take.
Also, even after all this time, I don’t wash my hair eve
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Hello All!
I just discovered this thread and I'm so glad I did. I'm on day 15 of my first round of 4 TC. I'm doing Penguin Cold Caps too. Yesterday and today I shed SO much hair, I was sure the caps didn't work. Like many of you, I have long, thick, dark hair. When I initially had the caps on I didn't think they were that cold (even though the laser temp reading was correct). As the day progressed they felt cooler. Someone said that maybe my scalp didn't get that cool since I have such thick hair. Who knows?
Washing my hair today was a mess...so much hair came out and it got matted and tangled. I'm using slightly cool water and very little pressure on the shower head.
Please share your other tips for hair washing, best way to wear hair during the day (I thought we weren't supposed to wear it in ponytails or clips) and best thing to do with it while sleeping (I am using a satin pillow case), should I put in a cap or braid or something? Also, I'm wondering if I should go get a couple inches cut off to reduce the tangling?
Thanks Ladies for your support!!!
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hello faith.
I found I lost a lot due to tangling as well.
In hindsight I think wearing it in plaits could be the best. You can wash it in plaits then and after carefully unbraid and brush and rebraid.
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Hello HaveFaith - I finished 4 rounds of Taxotere and Cytoxan on Dec 4th. Like you, I had really, really thick hair and I also used the Penguin cold caps. During my first chemo, I actually had a similar experience. I didn’t find the caps to be cold at all. They did actually get colder by the 4th and final chemo cause my hair was so much thinner. I shed a LOT of hair around day 16 - 21. (I admit I was a bit panicked and posted on this thread looking for similar experiences/reassurance). My hair continued to shed like crazy for about 13 days post my second chemo and then the shedding really tapered off. For some reason, post my 4th and last chemo, my hair has been shedding quite a bit again.
I washed my hair once a week and used a solo cup for rinsing. I’d fill the cup with cool water, and very gently pour it throughout my scalp - trying to be careful not to “dump” it on one area. I didn’t let water from the shower head touch my scalp. (I tried washing in the sink and that made a mess. After trying a couple of other kitchen bowls, etc., I found the solo cup worked best for me.). I let my hair air dry a bit before combing as I read somewhere that combing wet hair stresses the hair. I bought some thin hair bands (the kind WITHOUT “teeth”), and wore (and still wear) them when I’m going out. I comb my hair once a day. I bought a silk pillowcase before I started treatment, but around my 3rd treatment I actually started sleeping sitting up with pillows behind and beside me. I did this because I toss and turn a lot while sleeping and I thought that couldn’t be good for my hair. I’m about 5 weeks post final chemo, and I’m still following the same regimen.
Good luck in your journey! Everyone has a different experience and I’m sure you’ll get lots of tips from the awesome people on this site!
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SarahSmiles, thanks so much for all that info. Congratulations on finishing chemo! How are you feeling now?
I just can not believe how much shedding I'm having. Between me and my Dog there is hair everywhere...lol.
I will try the solo cup. That's a great idea. I think one of the mistakes I made was putting too much shampoo on yesterday and it took forever to rinse out. Someone else mentioned watering it down, so I'll give that a try and just use less.
Also, I am wondering if it would be better to wear it in a braid at night so it doesn't pull and rub so much (I toss and turn a lot too)? I wasn't sure if the braid would be too much tension.
Another thing I am wondering is about all these loose hairs just hanging...I can't not pull them out. I know someone else mentioned it earlier. They are basically already loose and falling out, right? So gently removing them would seem ok? But then I feel like I am pulling them out. Yikes! What to do...what to do. I know we are all just trying so hard to preserve whatever amount of hair we can and treat it as gently as possible.
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HaveFaith - hello again from the East Coast...I’m feeling pretty good 5 weeks PFC. I have some slight numbness in some of my toes, some nail damage on two fingers, and as mentioned, still shedding hair like crazy. My eyes are also watering, which like the hair, is driving me nuts. I really didn’t struggle too much while going thru chemo. After around the 3rd treatment, I started getting really tired and would nap. In truth, I told my husband and friends, the fatigue was more like drinking a few tequila shots - one minute I was fine and the next I felt like I could barely get one foot in front of the other! Sudden. Onset. Exhaustion!
My motto is “hair, hair everywhere!” I sympathize that you are shedding! I had to Swifter a lot to get the hair up... I didn’t braid my hair... it’s a bit past shoulder length, so a little short for that. I did wear my hair in pigtails for a short while, but felt I was losing as much hair with the pigtails as without. Perhaps a braid will be better.
We’re on a similar path... I started whole breast radiation (left) today; no lymph node radiation though. Keep me and us posted on your treatments! Sending you warm thoughts and best wishes!
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4 months before Chemo above photo (Feb 2019)
I had 4 doses of TC. End of June to end of August.
And below is about 4 months post final chemo.(end December) Shedding has finally stopped. I cut my hair to shoulder length a few days before chemo because I knew it would be easier to manage, comb, wash etc. I used dignicap and lost about 70% of my hair. Even thinning and no bald spots. I started taking Biotin every day once my oncologist said it was ok. (I was taking it before diagnosis for years) My hair stopped shedding about 3 1/2 months pfc. I just kept trimming it blunt so it would look thicker and healthier. My hairdresser cut it dry and she was very gentle. I washed it once a week and took a xanax beforehand and cried each time due to large hair loss. I dreaded hair wash day even though my hair looked flat and stringy. I used a big toothed comb and detangler conditioner in the shower and that keep tangling to a minimum. I combed from the ends up. After getting out of the shower, I’d go outside to gently comb my hair again to avoid shedding all over my bathroom. Such a heartbreaking time in my life. Throughout the day, I’d run my fingers thru my hair so all loose hairs would come out. I did not tie up my hair or use clips. Towards the end of each week when my hair looked awful, I started tying a long oblong scarf as a headband and tied it by my ear. It looked nice. I used a soft headband and a scrunchie when I washed my face at night. I used Silk pillowcases but the first combing in the morning was heartbreaking. Tossing and turning caused lots of hair to come out. No ponytails or braids. No hair dryer or chemicals aside from a natural shampoo and conditioner.
Now that the shedding is over, I’m shampooing more often and slowly introducing the hair dryer.
There’s a lot of new growth so I will just keep trimming my hair until it all catches up. I figure it will take a year. I might go back to some highlights soon.Best of luck to all of you. It does get better and everything will be back to normal soon.
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Thank you ladies for the encouragement, it's like those of you who are finished with chemo and cold capping are shining a little light in our tunnel. The glimpses of light keep us hopeful!!!
Sarahsmiles, thanks for all those tips and encouragement. How have your first few radiations been?
Seawell, you look fantastic. Thank you for the encouraging post and pics. How are you feeling these days?
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havefaith...
I really feel really good, thank you. Just spent a week in Palm Springs with my girlfriends (who by the way have all gone thru breast cancer) and we had big fun. I had a bad radiation skin reaction which healed by mid November so all is good now. (My Rad Oncologist said it’s to be expected for women with large breasts)
Started Letrozole @ the end of November .... maybe a couple minor side effects only. But nothing that I can’t handle so far. Just need to start exercising and cleaning up my diet. 😁
I am slowly feeling like my old self again and the sadness is lifting. So grateful for the support and encouragement from everyone here.0 -
It's day 18 of my first cycle of TC. I have lost at least 50% of my hair...maybe more. It's mostly underneath and on the sides, but it looks awful. Cycle 2 is next Tuesday. Do I stick it out and continue with the cold caps?
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havefaith...
I say yes. Not sure what kind of cold cap you’re using but proper fit is crucial. I had to be very assertive on dose 2 that the cap was on tight in all spots. I brought in my own Velcro strap to wrap around my head. If after dose 2 you lose the rest of your hair then I would say stop but give it another chance. Initial shed is heavy.
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HaveFaith: My opinion — YES — keep using the Penguin caps to not only preserve hair during chemo, but to also try to protect your hair follicles for the long-term.
If you look at past posts, you’ll see an almost identical post from me around Mid-October. I panicked. I lost a lot of hair after the first and second chemo - at least 50% as well - but I still had hair! Because my hair was so thick, I didn’t think the Penguin caps were even that cold (I was never uncomfortable as some have described). My hair loss decreased leading up to and after the 3rd chemo. And while I’ve continued to lose hair post chemo, I still have hair.
In the previous posts, you’ll see the wonderful women who encouraged me to stick it out and I did. Try to focus on the hair that you are saving Vs losing, and focus on the goal of doing what you can to preserve the follicle. Now that chemo is in my rear view mirror, and even thoughI’m still losing hair, I would 100% cold cap again.
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Update on Dignicap for ACT (dose dense): I am going into my 6th treatment (2 more to go) on Thursday. I have about 15% of my hair left and for some odd reason, the hair in the back of my head is completely gone and the top of my head and hairline is pretty much non-existent. I would post a photo, but its too embarrassing. I can't even wear it uncovered in front of my husband. Hair is still shedding. I've been tempted to shave it the past few days, but I only have 2 rounds to go. I know there was a slim chance for success on this regimen.
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havefaithtoday - continue with the cold caps, wishing the best for you. I lost the most hair on the day of the 2nd cycle. A lot, Almost quit then..Even though at the end of the last cycle I lost a lot ( at least 50-60%), my oncologist and surgeon were impressed by how much I still had. I was the first patient they had seen using it. Andit might have come back faster as well. I think it might have worked better with a better fit. I used Chemo Cold Caps, but I think the DYIs are siimlar. The oncologist had a second patient who had heard of cold capping and asked if I would be willing to talk to her. I invited her over, talked about it, showed pictures, and gave a demo of the rotation with my ice chest and yogurt containers. It was successful for her. Best wishes to you.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?
Swelling in R-arm, opposite side from where lymph nodes removed. Noticed 6/18/2019. Could have been swelling earlier but wearing long sleeves. Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. Started seeing lymphatic therapist 7/2/2019. Stopped seeing lymphatic therapist early October. She did not think it would help until tumor removed/chemo'd/radiated into oblivion.
8/2019 CT, Breast/chest , neck/thyroid ultra sound
9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)
9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery.
10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.
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Ladies, thank you for the much needed support and encouragement. I had another HUGE hair shedding yesterday. I think I'm at about a 60-70% hair loss and I have SO many bald spots
I just sat and cried for a while mainly at the great loss of hair, but also because I don't know if I'm doing anything right and if I should continue. I decided that unless I am completely bald by Tuesday, I'll give it one more go. But honestly I just don't know what to expect. I'll post some pics soon.
Love and gratitude to you all for your encouragement and support!
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wish I could give you a big hug- totally get how upset you are--everyones results are different-please do keep capping regardless as with the others advice and maybe shift your goal to protecting the follicles going forward so your hair will start growing back faster-and it will grow back--this is a temporary condition-honest---can you pick out a pretty wig so you can feel more normal for now? maybe one that matches your own hair ---- some experiment with a different color,style for the time being .
A day at a time-then a week, then a month-you WILL -get thru this -I promise you that--we all have and you will too-you are already on your way--hugs from Vermont-Candace/Kaylie
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Kaylie57410 / Candace,
Thank you and Thank you for encouraging me to keep going with the caps. Tuesday is cycle 2 of 4. I figure while I still have hair (honestly only about 35% left) I'll still do it. But then you mentioned continuing on capping even with very little hair to try continue to protect the hair follicle. I was wondering about that. That sounds logical. I didn't see any research on the internet about that, but I would think that would make sense. At least we'd be stopping further damage to the follicles again, right? And I'd think that would give them a chance to start their regrowth now, versus having to wait until after cycle 4.
I'm also wondering about styling right now. There are so many bald spots I can't go out without something. A baseball cap works best, but I know they say not to do that. Last night my head was so cold I had to wear a beanie...another no no they say. I'm going to see if I can make a wide headband out of a silk scarf and see if that might cover enough of the bald areas. What are your thoughts on hats, etc? Around the house I'm ok going without anything.
I know someday soon this particular issue will be behind me. And there are more important things to focus on....but again... you understand.
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HaveFaithToday- I think Penquin and Paxman have different thoughts on what to wear or not. I ride horses and I wore a helmet in the summer (very sweaty), and I don't think it impacted me. If you wear something light I think you'd be ok.
I did have good luck in that I kept about 80% of my hair, so my thoughts may not be useful.
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I used a tinted hairspray to cover boldness. Now I use it to cover white hair - I have regrowth while still on chemo but it is absolutely white
I wear hats etc and it did not affect me - my mass shedding was before I started wearing them.
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I think the warnings about wigs and caps are to not get your scalp real warm-guess follicles fare best is coolness----but---would think as with On Target above - some short term periodic use would be ok--and it would help you emotionally---are you being followed at a cancer center?--the center will have pamphlets of companys that make nice scarfs and soft hats--some are made with hair attached to the bottom that look like your own hair--there are also --toppers--partial wigs for the top of your head that can blend in with your own..
good luck tomorrow with round 2-hopefully you have a partner helping you with the changes-my daughter was mine - we made a good team. I pretty much breezed thru the 4 infusions--never had any nausea or bone pain from the neulasta patch...kept expecting to feel badly,but never did-again - my attitude--I gotta do this and I put my head down and just did it- one infusion at a time and by a few days post -was back to working and normal activities....more hugs from Vermont--wish we would get some snow- I am a skier--Kaylie
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Hi Seawell,just wanted to chime in to say--you look fabulous!!-looks like we had similar results with capping--best of luck moving ahead,Kaylie in Vermont
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Thanks ladies. We just picked up the dry ice. I'm still gonna give it a go tomorrow. I spoke with my rep from PCC and he said it's up to me if I want to continue, he said obviously I did not get the results we had hoped for, but continuing to cap would protect my hair follicle from further damage. He said just because the hair fell out, doesn't necessarily mean the follicle died. What do you all think?
I'm hoping it's not too painfully cold tomorrow. He said to have my hubby (who does the cap changes) check for redness on the scalp each time to make sure I'm not getting burned (yikes...one more thing to have to worry about).
I was completely discouraged again this morning and shed quite a few tears with today's shedding. I've lost about 80% now. I can kinda still get by with a baseball cap or a beanie (both which my rep said they don't recommend because they restrict the air flow to the scalp). But he understood from my pics, that I would need to wear something to go out. Fortunately I own my own business and work from home 90% of the time, so while at home I wear nothing to allow my scalp to stay cool. I'm not gonna lie though, I cringe every time I see myself in the mirror. It's just so hard. I know you ladies totally understand.
I'm with Scripps MD Andersen Cancer center here in San Diego and they have been very helpful. They even gave me a few hand knit beanies today. (Beanies are hard to come by in the stores here...lol). I did see the baseball caps with hair and I think I'll order one on line.
Here's a pic of me before chemo (on my 50th Bday which was a month after I was diagnosed with BC). I think it will only let me post one pic, so I'll post current pics separately.
Again, sending much love and appreciation for you all who have been so supportive.
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you look beautiful on it. So you will again.
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For anyone concerned about wearing a hat (or a helmet) during cold capping: there are scattered reports throughout this thread and others regarding the use of hats or helmets during cold capping, and I read all of them before I decided to cold cap, because I ride horses and wasn't about to ride without a helmet. The consensus was that wearing a hat or helmet occasionally will not do any harm, so, like OnTarget, I wore my helmet when I was around my horse. In the summer, when helmets are maximally sweaty. I also put my hair in a scrunchy to keep it out of my face when I was riding or otherwise active, which is another no-no for cold cappers. And I kept most of my hair. I know this is just anecdotal evidence, not a proper scientific study, but for whatever it is worth, the anecdotal evidence here at Breastcancer.org suggests that wearing something on your head once in a while will not make your hair loss noticeably worse.
Havefaithtoday, I notice from your photo that when your scalp is not under assault from toxic chemicals, you have lovely abundant hair. Anecdotal evidence also suggests that people who have abundant hair lose more hair when cold capping, at least at first. That's probably because thick hair insulates the scalp better than thin hair, making it harder to cool the scalp enough to get the best results from cold capping. Although heavy hair loss is very discouraging, if continued cold capping will protect your hair follicles, which seems logical, you will likely still benefit from cold capping by getting your hair back sooner and/or in better condition than if you had not cold capped. Good luck!
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Thanks ladies. Just got home from cycle 2. We did the cold caps and holy smoke....they were so much colder this time. I think that goes with the theory that many of you have said about having thick hair and it insulating the scalp a lot. That was probably the case. I can barely stand the cold right now...got 1 more hour to go of this 7 hour COLD day. I even had my hands and feet on ice packs for the Taxotere to prevent neuropathy and I chewed ice. So it has indeed been a cold day...lol
I'll see what the results look like over the next few weeks and then decide whether to continue for session 3 & 4. I figure if I'm not completely bald and there's some hair growth it might be worth it. I hate to give up and lose all the effort put in for the last 2 cycles.
Love and hugs to you all.
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havefaithtoday RE: the extreme cold/frozen brain pain....I found that taking 2 Tylenol 30 min before putting on cold caps helped a bit. Or, taking an Ativan, or something that made me less tuned in to that brain freeze. I also remember that for me, the extreme chill-pain disappeared after about 30 minutes each time. That helped, to know that it was not going to last the whole time. I guess I got numb?
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havefaithtoday - I did find "bufffs" or similar products helpful, and something I felt I could wear anywhere. Lots of styles/colors to choose. A lot of women wear scarves very nicely. I also felt shy about hair loss, but found these more comfortable than hats. Probably lost 50% maybe more duriing chemo. Looked at wigs before chemo, but they were not for me. I do not know if wearing something increases hair loss, but tend to doubt it,unless it is irrititating. Buffs I tried were essentially tubes that could be worn on head, around neck, around face. There was another product buff like, but not a tube, more like a stretchy hat. You might search the forums on breastcancer.org. Good tips,ideas are there, but it can be a little frustrating to find, since they can be posted almost anywhere. Good luck
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Thanks Kaylie.
Have no fear cold capping ladies. The hair comes back and when it does....it’s wild and wooly! 😁 And it’s growing during chemo. I finally stopped shedding about 3 weeks ago. Hair is growing like crazy now. I’m going to highlight this weekend for the first time since mydiagnosis.
Headcovers.com is a great place to buy head scarves, beanies etc. A wonderful company.
Love to all of you. Hang in there.0 -
Thanks again ladies for the support. I got one tiny little slight burn and red area on my scalp near my forehead where the cap must've been too cold. It's healing up now though. I'm gonna wash my hair today and I'm scared but honestly there is so little left, I can't imagine much more falling out.
It turns out my insurance will not cover a wig even with an RX for cranial prosthesis due to chemo hair loss. That was disappointing. But Scripps referred me to the American Cancer Society yesterday and they gave me a beautiful wig that matched my hair well. They also gave me some cute hats and caps. Then I ordered some baseball caps with hair attached on Amazon and the first one came in yesterday. It was comfortable and looked decent. So, I've got some options to wear now when going out. But I'll try to keep it to a minimum so that my scalp can stay cool and breath.
I'd really like to continue capping for the last 2 cycles, but I'll have to see what happens over the next few weeks. Also, it would cost about another $1,000 to continue til the end and I'm kinda having a hard time justifying it with this drastic of a hair loss. But this was my 50th birthday present to myself, so we'll see.
Hoping everyone is feeling good on their journey and healing well.
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