Cold Caps Users Past and Present, to Save Hair
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Camama2, how much hair did you lose using the Penguin cold caps? I'm about to start 12 weeks (4 cycles) of TC chemo and hair loss is the thing I'm most anxious about since I really don't want people to notice I am losing my hair! Just wondering if I'm going to need a wig even though I am cold capping, or whether it works well enough that you can get away with a baseball cap or even nothing at all.
Would love to hear or see pics about how much hair people still lose with cold caps. Does anyone retain all or almost all of their hair?!?
Thank you everyone for sharing your stories. it helps so much.
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CDub,
I used Penguin and retained most of my hair. I have thin hair to begin with, and I personally noticed that I was shedding much more than usual. But I worked throughout chemo and none of my clients noticed. Towards the end, I used Toppik hair fibers to keep my scalp from showing and give the illusion of fullness. The Penguin rep advised against it, but I feel almost certain that it didn't have any ill effect on the process and REALLY helped the thinning be less noticeable.
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what are ear bags
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Earbags: You can get them on Amazon. The brand is Sprigs. My ears suffer the most with the cold cap....the top of my head is fine. I spend a lot of time shifting around the earbags and clearing the little ice pebbles off of them.
I don't actually put them ON my ears...I just put them between the ear and the cold cap so I can adjust them a bit. 0 -
hi there- I used Penguin caps during 4 rounds of Tc and saved 80-yes 80 percent of my long wavy hair and lost some more during 5 months of continuing shedding so in total kept 75 percent- I was thrilled to be able to look normal thruout-I highly recommend going for it- My daughter was my partner and yes sticking with it was exhausting- 7 hours total changing caps every 25 minutes--but we hung in there and so glad I did! you can pull up my posts from that time- lots of good support-tips etc.. Tc has a better track record for success than a regimen involving adriamycin- I knew this going in plus 4 treatment vs. 6 of the other helped me go with TC only- I will be 4 years out this June and doing ok- fingers crossed- I am at high risk for recurrence- 2 /2 nodes, grade 3 and high onc score- but made the right choice for me and am at peace with it- so far so good . I was 68 at the time- if I had been 15/20 years younger I might have gone with the more aggressive chemo--I just past 3 years on Letrozole with only minor muscular skeletal aches and pains-I can deal with that--stick with this forum- lots of us out there have come thru and have resumed living life-- you will too, hugs Kaylie
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hi if you go with Penguin you can ask to rent previously used caps - they are totally fine and have been cleaned and sanitized- it was a couple hundred dollars a month cheaper- they do not offer up front- it is a business after all - you have to ask--best of luck - you can do this - many of us have and been so glad we did,,Kaylie
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Yes, kaylie57410, you’re right about the discounted caps. The rep actually brought it up to me which was huge bc it is saving me quite a bit of money on the caps. Don’t forget if you choose to go with the capping method that the dry ice is an additional expense every time you go... expect it to be about $100 additional cost each time.
Question... I had my first treatment on 3/12 and have been babying my hair since then, as directed. Prior to chemo, I have always normally shed a lot of hair daily, and I’ve always been told I have a lot of hair to begin with. It feels like I’m shedding even less now (since my first tx) than I was prior to chemo, but I could just not be noticing it bc it used to happen when I washed and blew out my hair, so I would see the hair on the bathroom floor. I’m only about 13 days out, and I’m just wondering what I can expect after round 2, which is next week (I go every 3 weeks). Day 21 is the day before my 2nd chemo appointment and I’ve seen that day 21 is a significant milestone in the world of chemo cold capping. Can anyone explain what the significance of it is? I’m concerned that my day 21 is the day before round 2... does that matter? Also, while I’m hoping to keep a good amount of the hair on my head, I know better than to expect to keep the rest of it. When does that start happening typically? What about eyebrows and lashes? Do they always fall out or just shed? If so, when has that happened for you guys? I’m sorry I have so many questions... even though everything feels like it’s going well so far, I guess I just have an overwhelming fear of the unknown.
I hope everyone is feeling strong and enjoying the sunshine and spring air. Sending love and light to all of my warrior sisters...
🌺🦋🌈❤️🙏
Dawn
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Hi Dawn,
My hair was also doing the normal shedding, but there has been no new re-growth, yet. I did 12 weeks of weekly Taxol and has my final one yesterday! My 'other' hair (leg, arm, under arm and pubic) fully fell out at about 28 days past the first treatment. My eyebrows and eyelashes are still there kinda but pretty thin. I think maybe 25% is left. Those fell out after about my 6th treatment...so...like 42 days post start. I just bought Latisse and am hoping for the best for my eye lashes.
I used the Dignicap. Their recommendation is to continue with the gentle hair care for another 4-8 weeks. I have no idea what signal will tell me that enough is enough. I have my surgery in one month, so that is an easy timeline.....stay the course until at least after surgery. I guess when my other hair starts growing back I will have a better idea of if my head hair is stronger and starting to grow back, too. I think I lose about 25-35%% of my hair but my MO thinks even less. I have fiarly think hair to begin with, too.
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everybody is different in how much hair they lose-the 21 day mark is when a big shed typically happens- just the timing of how the hair reacts-continue to baby your hair and do not pull on it- I used a wide toothed wooden comb and gently combed in sections. also slept on silk pillow case and used a soft loose scrunchie at nite
I also lost all pubic hair-felt like an 10 year old for a while- lol- also eyelashes thinned a lot but not totally- leg,axilla hair fell out but is so light colored anyway, didnt really notice- -eyebrows too but I wear bangs so again not noticeable
I continued to shed for 5 months post capping- but hair was starting to grow back along that timeline- I hated losing hair but consoled myself with knowing that hairs are fast growing cells as are cancer cells so I figured the chemo was working- if I recall taxol may not cause a lot of hair lost- you can look that up--not certain on that..
do hang in there- how many treatments do you have to have?? you will be glad you did- I am 4 years out in June and doing fine--fingers crossed--Hugs to you- you can do this!
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Thank you all so much for the feedback, wisdom, and encouragement. I’m pretty sure I had my first major “shedding” yesterday which also correlated with a washing. I was super gentle but still lost about three times the amount I would normally have lost prior to chemo, and that was in the shower alone. I continued to shed throughout the day and am still shedding today. I’m guilty of gently running my hands through my hair which I think has been aggravating it a bit but I’m forcing myself to stop bc the amount of hair that is coming out is freaking me out. It’s not noticeable yet but I’m wondering if it continues to shed at this rate after the first big shed (hopefully this was mine bc if it wasn’t, I’m pretty much screwed lol) or of it slows down a bit. My day 21 is the day before my next chemo treatment and I’m so nervous about all of it. I felt like I woke up this morning covered in a blanket of dread that I just can’t shake off. I think chemo, the diagnosis, my mastectomy, the whole process of this, had tested my issues of control to their limits. There is definitely a lesson for me in this, and it is that I obviously do not have control over so many things in my life, this being one of them, and I have to let go with grace and faith. My new mantra is “amor fati,” which simply means to love and accept your fate, no matter what it brings.
Hope you are all enjoying this Sunday and able to do whatever it is that makes you feel whole, healthy, and at peace today.Much love to you all,
Dawn
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I so understand that blanket of dread that descends with out warning- it is suffocating and frightening -it is partially from a loss of control over what the future may dump on me--for me those moments occasionally occur when i first go to bed and am unwinding from the day-maybe my daytime business keeps it at bay most of the time- also when I am approaching a scheduled lab draw I notice it more--last year my alk phos was a bit up for a few months--can be due to something happening in either bone or liver or normal variations- had to have a liver us--found out xmas eve it was fine--havent been that scared since my bone scan at dx almost 4 years ago-particulary when the radiologist wanted more films of my spine-turned out to be my age related arthritis--but that fear is all consuming while it is happening=I am due for labs again next week- the ones in dec again short a mild increase--fingers crossed- toes too next weeks is back down-- I am 4 years out in June and doing fine----as far as I know................
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kaylie57410... Im so sorry that you have been experiencing that fear of the unknown all over again... I haven’t even gotten so far as to think about how the fear will rear its ugly head in the future whenever I need to go for tests or scans...I cant even think about it. Congratulations on being four years out... and healthy! I look forward to celebrating the day when I can look back on this time of my life as a distant memory. Sending you prayers for continued health and strength, and most of all, courage. They say you never know how strong you are until you have no other choice but to be strong... I think we are all proof of that. It’s funny bc after my mastectomy when people referred to me as a survivor, I kept saying that I had no right to claim that title because I did nothing to fight my cancer... it was removed by the doctors. I felt like I would be an imposter if I called myself a survivor. Well, now that I’m in chemo and facing the next three months of this and a lifetime ahead of me of being on guard, I’m getting the word SURVIVOR tattooed across my forehead.
Getting ready for infusion #2 on Friday... if there can even be such a thing as being “ready.”
Praying for continued health, strength and courage for all my warrior sisters,Dawn
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hello!
im hoping someone on here can give me some advice. I am halfway through chemo (6 rounds of TCHP) and so far the cold capping has been great. Just a couple bald spots on the back of my head that can be covered.I am getting mixed information about perjeta and hair loss and the need for cold capping.
After my 6 rounds of TCHP, I will continue HP for the remainder of the year. Does anyone know if I will need to cold cap while on HP alone? Since perjeta can cause hair loss? I am so stressed about having to do this for an entire year 😔
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You shouldn't need to cold cap for HP. My understanding is the kind of hair loss from HP is similar to Kadcyla or Hormone Blockers. It's not like Chemo, it may thin or growth might slow down hurt, nothing drastic.
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Cold capping is not necessary for HP. It does not kill off the follicular cells like the chemotherapy.
I lost most of my hair during chemotherapy despite cold capping but the interesting thing is, when it started to grow back in I did not shed a single hair until it got to just above shoulder length. I'm on anti hormone therapy now and shedding like crazy but it doesn't seem to be getting thinner.
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Thanks so much for the responses ! hope my progress is consistent for the remaining 3 treatments
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Somehow I deleted my last post which was a long one ... I guess the universe did us all a favor...lol... I hope this finds all of you enjoying a beautiful day and able to feel the warm sunshine on your faces. I had my second treatment on Friday, 4/2, and I just washed yesterday... I am shedding so much it's scary. Between day 16 and now (around day 26) I feel like I have lost 75%... I still have hair, but I definitely have some bald and receding spots, and I am simply terrified of touching my hair or doing anything at all to it. Does the shedding continue at this rate? If so, I honestly can't see how I will have any hair left when this is all said and done. I know I should be grateful to have any hair at all, but I'm overwhelmed and afraid. I guess part of me feels like the unknown is still lurking around every corner. Is there anything I can do to slow the shedding process? I feel like I have read every post on this thread multiple times but I'm still clueless.
Did anyone on here use a wig even though they were cold capping? I am afraid that, with the onset of spring, a wig might make my scalp too hot and cause even more hair shedding. 😕 Any insights would be greatly appreciated.
Thank you all for sharing your wisdom and strength. I am truly grateful.
Dawn
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the Shedding slows down as you go on. However, I was terrified of touching my hair. I only washed it once per week but, make sure you comb it daily, or else you get knots and that just makes it worse.
Dignicap cautioned against using wigs they didn't want the scalp to get hot and, cause more hair loss. I believe you can use Topix to fill in the thin hair area.
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morrigan_2575 thank you for that response. I figured as much about the wigs. Hopefully the shedding slows down because I know my anxiety about it is only going to make it worse. Does regrowth start during chemo or not until after all of your rounds have finished? I know I should know the answer to these questions but I think I'm just too overwhelmed to remember anything I learned until now.
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Hi,
I finished my 12 rounds of chemo on March 25th. I'm still only shampooing twice a week and not styling it. I have always lost hair in the shower and used to shower almost every day. I feel like the amount of hair in the drain with only 2 showers is equal to the amount of hair if I were to add up 7 showers....does that make sense? I still don't have regrowth. I'm kind of gauging it on my eye brows and pubic hair....nothing new there yet, so I'm guessing there is nothing new on my head yet. My MO sees hair loss all the time--I told her I though I'd lost about 50% of my hair. She says it looks more like 25%.
It's hard to be specific. I do remember being told many times that even if you lose a lot of hair with the cold cap it still helps with the regrowth being healthier and faster. It's hard that it's not an exact science.
xoxo
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claire1973 CONGRATULATIONS!!!! I'm so happy for you! Thank you so much for your response and for taking the time out of your "finished-chemotherapy-celebration-party" to share. How are you feeling now that you're done? Please keep us posted on your journey back to new and improved health!
Much love to you-
Dawn
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Thanks so much Dawn!
I feel good! I was doing weekly Taxol which is not as aggressive, so I almost feel like a sham posting that I feel good given what so many others are going through.
I went weekly on Thursdays, so this past Friday was my first Friday not pumped full of meds. I was still having ALL of the side effects until about 3 days ago. I still have several, but the nose bleeds and diarrhea have stopped (as off 3 days ago). I stopped taking the daily Prilosec after a week. I get heart burn some afternoons but it's manageable with Tums. I still cannot taste much. I still get tired if I do too much. My face still feels very very dry even though it's not....it's a weird feeling around my mouth....like I need to moisturize but it's not dry. I still have that. I still have minor neuropathy in my two pinky and ring fingers....and the hair drama continues, but not having to wear that cold cap for 4+ hours every week has been the thing I feel like celebrating the most. I'm glad I did it...but glad it's done. and the other two 'worst things' (the nose bleeds and diarrhea) are gone too which is celebratory. My surgery is on the 21st....I'm braced and anxious about that.
Claire
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A couple of things and I know these posts were done months ago. First, I've had a very positive experience with Penguin Cold Caps. They have been extremely responsive. I have been in chemotherapy that can cause hair loss (Taxol, taxotere, carboplatin) for nearly 2 years and still have my head hair after using them religiously. I also couldn't have anyone assist me for a few months, but the MO office provided an admin to help me.
Secondly, I was able to appeal the insurance company's denial of coverage. They denied my appeal, but I appealed to the state (CA) and their determination was overturned. If anyone would like more info on what kind of documentation I supplied to get it overturned, please reach out. I'm more than happy to share.
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Hi MikeysMom-
So sorry to hear you are facing the trauma of hair loss, on TOP of your treatments. Oy. Just the worst, isn't it? Ugh!
May I ask: What kind of chemo are you receiving and for how long? (I didn't see it listed on your profile.) That makes a big difference.
Here's my story, for what it's worth:
-I finished my chemo January 21st of this year (2021).
-I had a total of four Taxotere/Cytoxan treatments, one every (3) weeks.
-I started with a ton of hair, but Taxotere is well-known for hair loss so I was told to give it a try if I could afford it.
-I used the "machine" cold capping system at Dana Farber in Boston. My RNs say that without it, I'd likely have lost it all during treatment.
-I'm coming up on 11 weeks out from my last treatment (Yay!) and, as I was warned by one of my BC.org elder sisters, I am still losing hair each morning when I gently brush it, and definitely when I shower (still washing my hair only once a week.) (Boo!)
-I have baldish spots on top and in the back, but a "friar's fringe" as I like to call it all the way around, so when I wear a hat, NO ONE knows I'm a big baldie on top. I've actually had people ask where I got my hats! Hah! : )
ADVICE to consider:
1. Gently brush your hair once a day with a wide tooth flexible brush, starting at the ends to pull any loose strands though.
2. Washing with gentle shampoo and only warm water no more than once a week. I mix mild shampoo in a bowl and pour it gently over my head in the shower, gently "pushing" it through the strands I have left.
3. Do not style or blow dry it. Thank goodness the days are getting warmer.
4. Drink tons of water (I aim for 3 liters/day) This is just generally super good for you and your recovery! : )
5. You 'may' want to sleep with a satin/silky hair covering, like a satin shower cap.
If you do all this, rest assured you are doing everything right. (At least I've not found or heard of any other "miracle cures".)
Bonus: You may decide to add Vitamin B (Biotin) to your regimen with your doc's permission, of course.
My key advice: Try to just accept and relax about it as best you can. Learn to be "okay" with the hair loss and just say "This is happening now, and I may lose more/all of my hair, but this is TEMPORARY and it will grow back." Because IT WILL. Fighting it gets you absolutely nowhere and only causes more stress, and possibly more hair loss. I even imagined reinventing myself: punk rock bald Renbird? (I'm almost 50, but who cares?) Sari-wearing sage advice giving Renbird?
Also, take picture of the worst of it now, so you can track your progress when things get better. It helps! I'm so glad I did.
Status: Although my hair is still falling out, new "baby fuzz" is now rapidly taking it's place. On Jan 28th I took a photo of my bald spots, which were white. Now, they look "spray painted in" with dark baby fuzz. I am told that that will gradually be replaced by my new hair. Excited for that.
In other news, I started losing my eyebrows "right on time" at 6 weeks POST treatment, (UGH!) but now, just 4 weeks later, they are growing in FAST. You can't even tell they were almost all gone last month. This is what my lady elders on this site also told me, but I didn't believe them. Anyway, easy for me to tell you all this too, but I hope hope hope you can let go for now and have hope in the future. You might be lucky and it will stop (have definitely heard of that happening) but just in case, it might be best to just accept each day and know that this will be behind you one day, and you will be ME writing to a future YOU! : )
I'm still wearing hats out in public, (here's one I love!) but starting to not care now that the weather is nice. My family and friends love me and are so proud of me and that's enough to get me through. Hope you have lots of love around you–– I can tell you that I am VERY proud of you. Reaching out for help is so smart!
Be well and XO -Renbird
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Hi GoKale4320-
Sorry it took me so long to reply...
Allllmost 11 weeks out from my last chemo treatment, I think I am following in your shoes. Shedding is still a thing, but yes, new baby fuzz is growing in. Hoping that by May my hair loss may slow/stop. I've come to accept it all much better with time.
Be well! : ) XO -Renbird
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claire1973... how are you doing? I'm sorry I didn't respond sooner. I feel like keeping up with "normal life" is so much harder now than ever before (even though my treatments are only once every three weeks). I know you said you still had some side effects even though you finished in March. Have they started to clear up? If you don't mind my asking, what surgery are you having on the 21st? I will say a prayer that, whatever it is, it goes smoothly and that you heal and recover soon!
Renbird, congratulations on being done with chemo, and thank you so much for that very informative response. I, too, am on Taxotere and Cytoxan. I am two treatments in and have four more rounds to go. I should be done at the end of June. I think (fingers crossed) that my shedding slowed a bit because today was a "wash" day and the amount of hair in the drain was considerably less than it has been for the past few weeks. Is it possible that it would have slowed already or is this just an aberration?
I have actually done most of the things you suggested... when I wash (once or twice a week) I do so very gently and don't scrub my head or use my fingers at all. No hair drying or styling, and I try to only comb it once a day. Even though I have hair, I do have a lot of bald spots so I have been choosing to wear loose scarves and soft, wide headbands to cover them and to make sure I keep my hands off of my hair (I tended to push it back a lot prior to chemo). I found some wonderful scarf and headband shops on etsy if anyone needs... one of the shops in particular sells scarves that literally feel like a warm, soft hug on my head which is comforting during this time. Most importantly, I am really trying to practice giving up control and expectations. I realize that this is about my long-term health and not about the superficial stuff like my hair, eyebrows, skin or lashes. Luckily, I started meditating during Covid and I am finding that to be a huge help in my accepting what is happening.
Ok ... I have to get back to work, but I want to send all of my women warrior friends much love and strength for the upcoming week. In the words of Glennon Doyle, "We can do hard things."
Love,
Dawn
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Dawn,
I wanted to reply to your concern about Dignicap and continued shedding. I'm not sure what your chemo regimen is, but I had ACT (4 rounds Adriamycin & Cytoxan every other week and 12 rounds weekly of Taxol). I used Dignicap and lost LOTS of hair (see below).
First chemo was May 31, 2018 and my "baldest point" was mid September. Started seeing regrowth in late September and last chemo was October 24. I followed all of the instructions from Dignicap, EXCEPT I did eventually put my hair in a really loose braid because I also have a bad habit of running my hands through my hair. I wish I had done it sooner, because it helped keep the "ticklers" from driving me crazy - the loose hairs that hang down and tickle your arm.
I did wear a wig twice in August for social functions, but I didn't notice any extra shedding afterwards. It was just too hot to wear it on a regular basis.
Good luck with your treatment and have hope! Once the regrowth starts, it fills in so quickly!
Kim
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Kim,
I love your short hair and love the photos. what a great idea to take one each month.
Dawn,
i have a bilateral mastectomy and reconstruction on Wednesday. I'm a ball of nerves around the post op pain management, but I think I will settle down once I'm there. I am almost a month from last chemo and still feeling a few side effects like fatigue and dryness. My mouth is slowly getting back to how it was although still going on that, too. the middle of my tongue is still numb and some foods still taste weird but mostly getting back to normal. My eye sight is going off a cliff but it could just be age related. I'm 47. I didn't need readrs until about 3 years ago, but in the past 3 months....off a cliff. I will go to the eye doctor after I'm healed.
xoxoxoxo
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claire1973- I had my bilateral mastectomy with reconstruction in December... before they knew I would need chemo. Please do not hesitate to lmk if you have any questions. The night of the surgery I was very nauseous and felt like I got hit by a truck, but I woke up the next day and felt pretty good. I never needed to take anything for the pain, and the only thing that bothered me were the drains, but they weren’t terrible. I don’t know how to message someone privately on here, but if you would like, I would be happy to continue the conversation in private message or give you my phone number just in case you need anything. You will do great... you have already been through the worst of it, and this will be a breeze for you! You’ve got this mama!
Kim, thank you so much for sharing! Your hair looks beautiful short! I am almost halfway through my chemo (Taxotere and Cytoxan) and I think the worst of my shedding might be behind me bc it seems to have slowed down significantly, but my eyelashes are starting to go... it’s like once you get used to one side effect, another one kicks in as an added plot twist. I definitely have some bald spots around my ears and in my part, but I have been able to cover them up and when that’s too much work, I just throw a head scarf on for the day. I know the process lasts far beyond the actual last treatment, but being halfway through this week makes me feel hopeful for the end.
Wishing everyone a week filled with strength and health ...
Love,
Dawn
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Thank you Dawn. That's very kind of you.
Funny--I feel much better today knowing it's tomorrow...I think it was the lengthy anticipation that was feeding the anxiety. Now it's tomorrow, and I'm a little more calm. I think getting into a yelling match with my 17 year old son about electronics with it ending in a tearful long hug was therapeutic!
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