Cold Caps Users Past and Present, to Save Hair
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Hello Ladies - I’ve posted before about losing hair post chemo - 7 weeks since my last treatment. I’ve probably lost an additional 20% or more since Christmas. (I used the Penguin cold caps). Well, I finally visited the dermatologist this week, and after examining my hair follicles, my diagnosis is Anagen And Telogen Effluvium. This seems to mean that I’m losing my hair due to both chemo and stress. Derm suggested that I may lose almost all my hair (it will get worse before it gets better) and to use Rogaine. Anyone have any experience with this diagnosis (or is this the medical term for shedding) and treatment?
It’s an unknown road out there sometimes... appreciate the help I’ve already received and would appreciate any help navigating!
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SarahSmiles- I don’t have experience with the dermatologist’s diagnosis. But I would be reluctant to use rogaine at this point. I know that when I was 7 weeks past my last infusion, my hair was super thin (and it was thin to begin with). It was still shedding at this time, too. I kept treating it gently (washed sparingly, wide tooth comb, satin pillowcase) My hair didn’t really start looking better until 4 months pfc. And I didn’t have it trimmed until 6 months pfc to even it up. At 8 months I had it highlighted with a gentle non-permanent hair dye.
So my point is, I would not do rogaine now. I would eat foods with B vitamins. And maybe consider a hair topper to make myself feel better about my hair. I didn’t do this but others on this board did and shared pics. They looked great.
If you want to use rogaine, research it like crazy. I have heard mixed reviews
Best wishes to you
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Sarahsmiles, I am so sorry to hear this. Did the Dermatologist say it's permanent? Gosh, as if the whole hair thing isn't stressful to begin with, now you have to worry about that. I'm sending prayers right now that this is just a temporary thing for you.
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Thx GoKale for your thoughts! I’m going to hold off on the Rogaine. “Seawell” told me it took about 4 months post chemo for her hair to stop shedding as well. I’ve been anxious cause this is more than just a little shedding. My hair is noticeably thinner in the past 2/3 weeks. Fortunately, I had very thick hair, so while it may have limited the efficiency of the Penguin caps, I still have hair. (I saw a group of folks last night that I hadn’t seen since my diagnosis. They have no idea that I had BC. Only one commented that my hair looked thinner than she remembered. Maybe the others were just being polite?!?!)
There is a site on these boards dedicated to “Rogaine, Nioxin, & Biotin.” I’ll look in on that and also do my own research. Once I’m finished with radiation, I’ll be on an aromatase inhibitor for 10 years. Since a side effect can be thinning hair, I want to be armed with info.!
HaveFaith - my Derm didn’t know if it will be permanent or not; but my husband swears that he sees a few new hairs in the crown of my head. The small possibility of permanent hair loss was the deciding factor in my decision to cold cap. I also understand the cost and stress too; so I know you’ll make the best decision for your treatments going forward. Keep us posted !
It’s Friday ! Always a good day.... Thank you again!
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SarahSmiles - I have no experience with these diagnosis. I think I did lose a little more hair after chemo ended. But it came back. Thinking maybe 60% at very end, used ChemoCold Caps. But everyone's experience is unique, because we are unique. For stress, I found acupuncture and yoga helpful, as well as staying active. Diet/nutrition/hydration also important. Acupuncture may or may not be covered by insurance. You might see if community acupuncture is available and/or scaled rates. Community acupuncture, several other people are in room, there may or may not be curtains between people.
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?
6/18/2019 Swelling in R-arm, opposite side from where lymph nodes removed. . 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 . Oncologist suspected cancer or other disorder. 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. Ibrance is causing some hair thinning, just finished cycle 4.
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Sarahsmiles ...hello friend..... and everyone here. I shed heavily for 4 months PFC....every day I asked “how much more can I lose?". (Last chemo was Aug 28) The reality was that I was sprouting new hair 2 months PFC and during....just hard to see as the hair is fine. Today I can tell you my hair is growing like mad. 😁 I'm certain that Biotin and lots of hair healthy nutrition helps. (Eggs,avocado, etc)
I definitely think the stress I was feeling was adding to the shedding; my friends even said so ...as I was obsessed and it was my daily main focus. A mild benzo can help you relax if you are ok with taking meds. I took one daily and it helped me. I didn't see a dermatologist except to help my skin issues (as I work with them as well as oncologists) but I can totally relate to what you're experiencing. Only my close friends noticed my hair was thinner. No one else noticed.Hang in there! I bet you'll notice some real positive changes in February as it will have been 3 months since your last chemo.
Now I'm just waiting for brows and lashes to fill out. 😁
(Got hilights a few days ago and feeling great)
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So the last 2 nights I have had dreams that my regular full head of hair is back. I still have 2 cycles of TC left, so I know I'm a long way til a full head of hair returns, but I'll keep dreaming:)
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havefaith.....that’s awesome....positive visuals of where you’ll be soon. 👍🏻
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I'm starting TC/HP on Wednesday and signed up for the dignicap/coldcap to help save my hair. I'm hoping it works (50%-60%) so that I will have one less thing to stress over. I'm Stage 1 but, doing NeoAdjuvant Chemo because i'm HER2+ :-( .
I'll check back in to let you know how the dignicap works out. I have thick hair so i was told to expect a lot of shedding up front but, that it would settle down after a few weeks to normal level (cold cap shedding). They also said that having thick/healthy hair will help in the end with the healing/growing back portion (fingers crossed).
ETA: I know i can only wash my hair 1-2 times per week but, i can't find information on showcaps? Can/should i wear them to prevent the hair getting wet during my other showers or is it OK to wet the hair just not wash it?
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I would not wet it full stop. It would become more tangled if was wet and dry I guess.
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thanks! That's what i figured, i bought shower caps already but, wanted to ask
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Hi Morrigan2575,
I'm doing Penguin cold caps so can't speak for Dignicap. But I have had a significant hair loss. I too have very thick long hair, so not sure what influence that had on things. But I am continuing to cold cap to protect the hair follicle and encourage quicker regrowth. When I shower I do put on a shower cap so the hair doesn't get wet. Good luck with everything. Give an update on your progress. And remember YOU GOT THIS:)
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hi Morrigan
I wore a cheapo (Dollar Store) showercap on the days I didn't wash my hair. I loosely put my hair in a velvet scrunchie underneath shower cap. I wet my hair once between shampoos to see if it wouldfreshen my hair up, and it was a tangled mess so never again.
Good luck with your treatment. I used dignicap as well and had good success. I did take a Ativan and a norco 45 minutes before each treatment to relieve discomfort.0 -
well I had cycle 3 of 4 yesterday and even with 85% hair loss I'm sticking it out and cold capping. I figure I made it this far. We'll see what happens.
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Just had my first treatment today. Cold capping went fine. The doctor gave me a sedative to get over the initial discomfort and the head pain/brain freeze, I was able to handle it. Between the Sedative and the Benadry I ended up sleeping for most of the infusion.
I also used cold mittens and cold socks during the Taxotere those (mittens especially) were very uncomfortable.
I have thick hair but, I did cut it short (to shoulders), was able to donate my chopped hair to make a wig.
I will let you know how I make out with the dignicap over the 6 cycles. 🤞🏻
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am so glad to hear you are sticking with the caps--you are almost done! and even with the not good results on your hair-you are giving the follicles a jump start on regrowing.I had the same drugs as you and kept most of my hair-go figure- dont know why the difference- I did continue mild shedding for 5 months post but along with that new hairs were growing in-faster and faster- hugs to you-
I read you will be starting radiation in April- I had 33 with a boost--did ok with that-my skin reacted some but used the cremes recommended and only took about 2 weeks post for skin to come back to my baseline pre rads condition--am 2.5 years out from dx now and life is 95% back to "normal" You will get there too=!
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I am starting chemo next week, and have booked my Penguin Cold Caps. I have so many questions. My hair goes down to my bra strap. It is mostly straight, sort of frizzy if I don't flat iron it (which I know I can't do for a while) but I have a TON of it. My hairdresser has said I have enough hair for 2 people.
I am trying to make a shopping list and packing list for the day of chemo. I will try to find a shopping and packing list elsewhere for general chemo stuff, but would really appreciate help with what I need for my hair both for chemo day and for at home.
I am hoping that I will have a "white glove" treatment through Penguin the first day of chemo. It still needs to be confirmed since they changed the day of my first chemo. Hopefully it works out so the Penguin person brings the towels and thermometer and maxi pads and cotton for the ears, and things I don't even know about. We are hoping that my husband and daughter can learn enough on that first day that they can do it for the other 5 chemo's.
All of my knowledge is based on a youtube video of a husband helping with his wife's Penguin cold caps.
I keep hearing about all these criteria for shampoo, and am overwhelmed trying to figure out a shampoo that meets all the criteria. Can somebody recommend a shampoo that meets all the cold cap rules? I was just going to use my own conditioner, thinned down, since I only use it on my ends anyway.
I bought a detangling brush and hair nets and satin pillowcases. What else do I need?
Can I use any dry shampoo? Can I use spray on hair color occasionally to cover the grey? How do I put my hair up when I take a shower since I can't use the clip I have always used?
I read something someone wrote about using a round outdoor plastic tablecloth and using it as a cape when washing their hair so they didn't freeze their body while using cool water to wash their hair. So, how does that work? Do you wash your hair first? Then get rid of the cape, turn up the water pressure and temperature and wash your body?
Some of the details I know seem so complicated, and I feel so overwhelmed by what I don't know.
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Good questions---I don't have all the answers. I almost never washed my hair, and I was probably the only person who thought it looked a little flat--it mostly was just fine to just have it be kind of flat for a bunch of months. Spray to cover gray shouldn't harm anything. I wore a hairband around my ears and head sometimes, which looked like a stylish thing and hopefully distracted people from noticing that my hair was NOT WASHED VERY OFTEN, ha ha... I thought it was SO FREEZING COLD for just 10 minutes each time, and then I always got used to it. Have something to watch, like a downloaded movie or two, and distract yourself! Have some snacks if they don't provide them, and food you know you'll enjoy, because you have to be there for awhile. My infusion place did not have much WiFi, so I had to plan ahead with something to watch on my iPad, and headphones.
I slept with a "snood" on throughout chemo months. It was a little turban cap which kept hair from falling out all over the pillow, and it held my hair stable all night. For me, the satin pillowcases (which I did try) made no sense. I didn't like the feel of them on my face, and I just decided that to keep my hair from shedding I'd wear a snood each night.
https://www.headcovers.com/mod-slouchy-snood-bamboo-cancer-hat/
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Hi TaraMom22,
I’m sorry that you’re here, but also glad that you found these forums. So much information & support here.
I went thru the same chemo as you; I used Chemo Cold Caps & they included lots of directions/instructions about what type of shampoo & conditioner. All the info was in my shipment. They recommended a shampoo with a similar pH as our body, so I went to good ol’ Amazon & got Sojourn moisture shampoo. For conditioner, they recommended Kenra Daily Provision, it’s a spray in conditioner and I used it mainly on the ends. My hair pre-chemo was long, thick & heavy.I kept about 70-75% I’d say through 6 rounds of chemo. Post chemo, I continued to shed for about 2 months, not too bad.
You can use dry shampoo. I bought some but never used it. I found that even with weekly washing I didn’t need the dry shampoo in between. Chemo dried out my hair, thank goodness, b/c it would’ve normally been really oily.
I would get in the shower with hot water for my body first, then turn it to cool & wet my hair, turn the water to warm again while I shampooed—keeping my head out of the water, then back to cool for gentle rinsing. The shampoo isn’t very bubbly so rinsing was easy. To dry the hair I used a big towel and just patted my head very gently. Then sprayed the Kenra, used my wide tooth comb & let it air dry.
I know that all this hair care, chemo, Cold Caps sounds really overwhelming, but it’s not bad after you get through the first one. Then you realize you can and will do this, get through it, and on to the next “thing”. Hang in there, I’m sending prayers up for you & all of us in this ‘club’.
-Angie
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Hello TaraMom22...just jumping in to say that “yes,” the cold capping process can seem overwhelming, but for me, the peace of mind in knowing that I tried to reduce the risk of permanent hair loss was worth it. I used the Penguin cold caps as well; had Taxotere & Cytoxan; and sounds like I had the same, really thick hair as you. (I had my hair thinned every month for at least the past 20 years).
I used the same shower strategy as AdHoney; except that I used a solo cup to rinse my hair with cool water while nice, warm water was hitting my feet. I just let my hair air dry and used a wide tooth comb for combing when it was almost dry.
I used Moroccan Oil, patting it on my hair (never letting it touch my scalp) to calm the frizzies. I didn’t use dry shampoo, still haven’t used any color, and I’m 9 weeks out from my last chemo. Thinking I’ll wait a bit longer till I stop shedding.
I found the first chemo and cold-capping experience to be a bit like the “man behind the curtain” in Oz. It’s a long day, but once the curtain is pulled back, you’ll realize you can and will get thru this!
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The dignicap website didn't mention anything about a satin pillow case, this is good to know. I will buy a set today (thanks Amazon!)
For Shampoo and Conditioner dignicap says sulfate and parabin free.
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Hi all,
I’m 3 months out from TC chemo and dignicap. I had pretty good results but I did lose a large portion on top (It’s already filled in!).
I am currently experiencing dry flaky patches on my scalp. Does anyone have a solution for this? I’ve tried the apple cider vinegar solution 3 times but it doesn’t seem to work. I can go to my derm, but I’m trying to avoid yet another appointment.
I realize this may already be discussed somewhere but I wasn’t able to find it.
Thank you!
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hello smiling brenda....
My scalp was a major mess during chemo. To add to chemo, I have Dermatomyositis (auto immune thing) that affects my skin only. My scalp has always been itchy and flaky. So I went thru a bad scalp experience using Dignicap and not washing my hair but once a week. I wondered how is any hair gonna grow thru all these scabby scaley flakes clogging up the follicles??
I read that some essential oils can help with scalp problems as well as promote hair growth, such as rosemary oil, tea tree, peppermint oil etc. You could read up on that and try applying some of those oils ...maybe castor oil? ....on your scalp.
I found a wonderful anti thinning shampoo on Amazon that has all of these oils, plus some, (see pic below) and my hair has been growing like mad and my scalp is totally healthy and happy the day after I used it. My hairdresser, who has been trimming my hair every 7 weeks, even commented.
It’s called Pura d’or and it’s the original gold label. $30 . It smells great and is refreshing and lathers up. I’m on my 2nd bottle
Wishing you the best....
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Looking beautiful Seawell! I even see a difference in the pics from January to today. Congrats!!
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i really like that style, hair looks great
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I finished 12 rounds of taxol 3 weeks ago, nd just finished my 4th tx of radiation. i did cold capping during chemo using the migraine caps ice pack caps and kept about half my hair but it is continuing to fall out, has anyone else experienced this and if how long did it last?
Also my head in spots has be come very tender and hurts often, is this a normal process in hair regrowth?
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TJF - my chemo was different from yours but I did experience continued shedding for a couple months after my last chemo. Also my scalp felt tender for a while, but I’m not sure what the reason for it was. I think all this is very common.
Congratulations, you have survived the worst of it. Here’s to a smooth recovery.
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Hi TJF.....I was on TC for 4 does and used Dignicap for cold capping. I lost probably 60-70% of my hair. I had a lot of hair to start with. I continued to shed for 4 months. I felt tender spots on my scalp during shedding. But hair was growing while old hair was falling out. Shedding totally stopped at 4 months and is growing like crazy now. I’m back to shampooing every other day, using the hair dryer, hi lights etc.
You’re on the road to recovery now and soon can put this all behind you. 💕0 -
I started shedding when I hit day 15, it's more than I normally would but, nothing drastic.
I did notice that most of the hair seems to be coming from the back of my head. I watched some YouTube videos of ladies that went through the Dignicap and they said the same, most of their hair loss was in the back.
That works for me since out of sight out of mind. So far, I'm very happy with the dignicap. I go for my 2nd treatment on Wednesday and hope it goes as smoothly
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morrigan.....glad to hearround 1 went well. Good luck on Wednesday. Let us know how you do.
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