Cold Caps Users Past and Present, to Save Hair
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I used the dignicap for 6 treatments, 2 TC and 4 TCHP. The nurse that applied the last dignicap (my final chemo) did not do as well a job as my regular chemo nurse. My head was not as cold and there were air bubbles on the top of my head. I tried to hold my head with a towel stretched over the cap and pulled tightly, but after an hour or so my arms were very tired. I eventually gave up. I was so upset it was a most difficult 9 hours. My nurse refused to make it colder or to use a wash cloth over my hair before the cap like my regular chemo nurse did to snug the cap up. I did lose more hair this final time but I still have hair, it is thinned by 2/3rds but no bald spots yet, just quite thin. My hair was very thick before. I wash it once a week-to every 10 days. The shampoo and conditioner I use is Moroccan oil. They suggest no parabens, no sulfates and no silicones. That was very hard for me to find. Any chemical with cone at the end is a silicone. I do shower with just cool water when my head gets sweaty. My head is more itchy now that is ever was, and it has been 3 weeks since my last TCHP. I am still shedding. Very worried, but I still have hair. If I lose my hair now, I will definitely go back and talk to that nurse because this cost me $2700 to have 6 dignicap treatments. My insurance didn't cover it. One mess up will undo all these treatment. Good luck everyone!
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Fastgirl - thank you -- yes, important to keep it all in perspective. Some moments and days are easier - I will solve it by just washing less (mostly to help my mental state!) -- I think the minimum i can do is chemo day to remove grime and 3 days later to rinse out the chemo.
Any washing tips from others on frequency of washing?
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soxfan I was on tamoxifen for 5 years, no noticeable hair loss!
Brightness: I asked the nurses to give me the lorazepam before the infusion. Lorazepam is given to chemo PTs for anxiety and help sleep so it would get me a touch more comfortable. Either way is hard! I didn't get great success but I am not wearing a wig! I have the hope that will grow faster also! I am 3 weeks PFC so just waiting to be able to dye!
I also started using latisse for one week!
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Hi all,
I am trying to figure out if I should use caps again. I am doing AC for 8 weeks (every 2 weeks infusion 4 times total) Then 12 weeks of Taxol (once every week).
Last time I used the caps I was on TC 4 times (every three weeks) I kept most of my hair.
My question is, could I use the caps for the AC, and not for the taxol? Last time the caps were SUCH a pain, and I can definitely do it for 4 times, but not 16. What are your thoughts? Anyone on the same regimine?
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Icandoallthings--so sorry to hear that you are going thru this again. I think you must use the caps thru the taxol, or you run a high risk of losing your hair. You can do this! Hopefully your cap times with the taxol won't be so bad
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I'm only doing taxol and I'm capping each time. My MO has told me my SEs will be minimal, but even she said I will lose my hair on taxol (hoping the cold caps prove her wrong). I'm sorry you're going through this.
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Brightness456 - I'm 3 months pfc. I did most of my shedding since I finished chemo the end of June, very light shedding during. The cold caps protects the young to medium old hair follicle bulbs from chemotherapy forcing the old bulbs to shed early, plus your normal shedding. Everyone sheds differently.so far I have been very successful with cold capping but I am still shedding, no bald spots just thinner hair.
I first used the Acure clarifying shampoo (lime green and white tube) which is at most stores like Target, Walmart, and Fresh Thyme. I also mixed it in a squirt bottle with tepid water, squirting it over the top of my scalp. Rinse with tepid, not freezing, water with a light rain shower on the head. I actually shower first with warm water to wash my body, then cool the water down and reduced the pressure of the shower head to wash my hair. I shampoo a 2nd time with Acure. It suds up better the 2nd time and I gently massage my scalp with flat hands, no nails or fingers. This helped to loosen up dirt on a scalp and rinse it away with tepid light pressure water. Sometimes I wash a third or last time with Pureology Hydrate Shampoo and conditioner on the ends of my hair. I felt I could get my scalp very clean by washing 3 times gently.
I have very long hair so I alsoused a leave in spray conditioner by Pureology Colour Fanatic with 21 benefits. It helped with tangles, tames frizzes from new hair growth, and I love it. It is more expensive but well worth it.
I will say I remember having an itching and tingling scalp during treatment months which scared me to death. I could not wait to wash my hair on the 3rd day after chemo day. Hang in there and hope it goes well!
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For the dry itchy scalp, I rinsed my scalp with diluted apple cider vinegar, which helped.
I used Kenra spray-on detangler. And I dried my hair with a tee shirt, which seemed to work better than a towel.
After my first bout of cancer, I took tamoxifen for five years and didn't have any thinning. I'm on Aromasin now and my hair is pretty thick! It really rebounded from the cold capping. So hang in there, ladies!!
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I was diagnosed with DCIS on August 2, 2017, had a mastectomy with lymph node removal, and TE placement, on August 17, and started Taxol on September 22. I get 12 weeks of weekly Taxol, followed by 8 weeks of bi-weekly AC. (Then, I head to radiation.) I am cold-capping with the Elastogel system. We have a local company who will bring me 6 caps, already packed on dry ice, the night before chemo, then pick everything up the day after. And, my insurance, Aetna, will cover the cost! It all sounds great, right? Well, I had a really hard time and would love some help. The first round of caps were really cold since they had been on dry ice all night. We used the IR Thermometer, and they looked around -30 to -25 when they went on, when measured on the outside of the cap. I felt so sick when they went on. I thought I was going to faint - light headed, nauseous, sweaty. I didn't get a headache (fortunately) but felt really sick. It went on for 3-5 minutes, then I still didn't feel great. Just when I was feeling human again, the next cap came out of the freezer. After the first round through the hats, it wasn't as intense, but still wasn't pleasant. I honestly felt like giving up but felt like so many other women were able to do it, what was my problem. I felt bad - the nurses were telling me all the possible side effects of the chemo and I was about on the floor with the caps. Does anyone have any suggestions? I have children who are 13 and 16 and it will be so much easier on them if I don't lose my hair. I never considered my self a wimp, but this was really hard. Hoping there is something I can do to make it easier. I just feel like everything is so hard. Thanks.
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carolmom- I asked the nurses to start me on lorazepam. Either way lorazepam is part of the meds they gave me yo help with anxiety and to sleep. So they gave me a small dose before the capping! It helped! Also Make sure you are in the right range for the temperature! I read somewhere that the elastogel caps warm faster than PCC so change them More frequently
Hope this helps
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Carolmom I am also using elastogel caps and I take a Klonopin before I start. I would not get through it without it. I am also cold capping for the same reason you are my children are ages 11 and 13. My 11 year old was very concerned about my hair. I have lost 10 % percent of my hair have done three TCHP's so far nothing noticeable, but I have three more to go, so I am holding my breath. SoxFan told me she lost her most between 4-5 so we shall see. You do have to change your caps more often than penguin. We do every 20 minutes and my husband wraps them up with ace bandages three of them that I bought at my local dollar store so there are no gaps, I really think that helps. I did post pictures going back so everyone could see me cold capping with ace bandages over the Elasto Gel Caps. The Klonopin or Lorazepam or anything your doctor suggests will take the edge off. You can do this! I just got back from vacation to Jamaica and no one stared at me or knew anything was wrong with me. It is nice to be able to keep your privacy during all of this. Good Luck! One more thing I dress really warm and also use an electric blanket that might help too.
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Carolemom, Good luck! I started TCH and cold capping on September 8, so you are right behind me. The first cap was the worst, it actually made me squirm in my seat because of how cold it was. By the second cap I was numb. I took Ativan before the treatment. I also tried to ice my fingers and toes during the Taxotere, but that was even more uncomfortable than the cap.
KCMC, Good to hear that you are having success with the Elastogel caps! I'm also using Elastogel through Chemo Cold Caps. I had an appointment with my oncologist today and the first thing he said to me is, "You still have hair!" I've started losing it everywhere else, so I'm hoping that it's a good indication that the hair on my head is holding strong. I have a whole slew of other side effects, but I still have hair on my head
My second treatment is tomorrow... dreading that first cap!
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Less than two months ago I jumped on this forum in an absolute panic. I was scheduled for TCHP & wanted to keep my hair. I just finished round #3 of 6 and have the majority of my hair. I feel like each round gets more tolerable overall. I know what to expect & how to handle things better. One thing I've been doing as needed, is using the Clairol semi-permanent hair color. I use it near the front & not in the back & do NOT think I am losing hair due to coloring my gray away.
Wanted to give hope to others out there with lots of gray who colored their hair before treatment started.Question - has anyone used anything other than an Elastogel cap or Penguin for their cold-capping experience?
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Hello to all of my fellow cold cappers! I started 12 weekly taxol, with Herceptin every 3 weeks on August 17. So far I have had no noticeable hair loss. I wash only once per week, and really don't do much else to my hair. I went from long and straight to short and curly when I started my treatments. I can honestly say that after 6 treatments I have gotten used to the cold capping, but the first time I did it I was ready to quit about 10 times. I also take a klondepin before my chemo, for general anxiety about the whole thing. I'm not sure when hair loss normally starts, I guess it's different for everyone, but I am really encouraged by my results so far. Does anyone know if it is ok to use tea tree or coconut oil on the scalp during treatment? I have a really dry, flaky spot on my scalp, similar to cradle cap, and someone told me that the dryness can affect the hair follicle and cause hair loss. Has anyone else experienced this?
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SJane - I was on TCHP as well and kept most of my hair through round 4, but don't be surprised if you start shedding after round 5 and continue for several weeks PFC. I thought I was going to get through with only 10 or 15% hair loss, but most of my hair loss happened after #5 and #6 and I would say I lost 40-50% overall. It sounds like a lot and I suppose it is, but most people can't tell. There was someone else on here that gave me a head's up that it might happen later on TCHP and I'm so glad she did. It helped to lessen the shock. Hopefully you'll fare better than I did and continue to retain most of your hair.
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Newgammy, I've got the dry skin like cradle cap too. It's yucky, but I'm not sure putting oil on it would help since it feels like dead skin so it's got to flake off. Still, I'll be watching for what others suggest.
I'm about a month behind you in treatment. Are you using penguin or a different cold cap? I was instructed to wash 2 days before so it's clean during capping and 3 days after to remove the chemo gunk that apparently builds up on the scalp. Unfortunately, washing isn't the same now as prior to this ordeal since it has to be so gentle, so my scalp doesn't feelclean like it used to.
Lately I notice other women's hair a lot, the way the breeze moves it, the length, the styling. I really don't want to lose my hair...
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hello girls i am in he hospital i just finished my last chemo i am going to ring the bell literally. I hope i can leave this behind. I am glad to get over after all this sad journey. I did the cold caps so i keep some hair, enough to maintain my privacy and continue working all this time.
The next radiation is in November. Thank you very much for your support and for your experiences.i hope all of you finish with this very soon. Keep going. God Bless you!
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hello girls i am in he hospital i just finished my last chemo i am going to ring the bell literally. I hope i can leave this behind. I am glad to get over after all this sad journey. I did the cold caps so i keep some hair, enough to maintain my privacy and continue working all this time.
The next radiation is in November. Thank you very much for your support and for your experiences.i hope all of you finish with this very soon. Keep going. God Bless you!
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This is my hair a few weeks ago.
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This is my hairstyle for my everyday going to work.
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This is with the halo extensions that i am going to use for special occasions or if i continue loosing more hair after the last chemo. So my advice for the new girls is keep going is hard but it is worth it. !
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I want to tell you also that i lost my eyebrows but i put make up there. And i wear eyelashes extension every 3 weeks and they look awesome. No noticeable. I mean, i did all those things because in my job nobody knows so i have to be like someone normal. And feel good for myself in order to continue working without people see me sick and with pitty. But every person feels the different. So i read all the tips of the women here and took what i think worked for me.
Thank you again ! Keep in touch.
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Soxfan - thanks for the heads up on possibly losing my hair later. Makes me a little sick to my stomach, but I will freak out less cuz you let me know. If it happens.
Vivian - Congrats on being done!! You look beautiful! Great tip on the eyelash extensions.
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vivian -- can you clarify -- you get eyelash extensions that last 3 weeks? Not the single put on kind? I haven't lost my eyelashes yet (#2 of #4) -- just know that I am interested in what you used, as I will get something -- the not doing it every day will make me happy - let me know
And congrats! On being done and for posting your progress - at present I am trying to embrace saving any hair is worth it -- toppikk is my friend
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travelgirl the 5th chemo of docetaxel i had barely eyelashes my eyes looked very weird, and some of myfriends wear them only for vanity me why not. So the next day after chemo that i dont work i google some places and the y put me one by one mink eyelashes. And 3 weeks after i still have them but tomorow i will go for the refill. Like that until my own growth. Here are the pictures with and without, you will see the difference i feel better.
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Brightness, I use Arctic Cold Caps. I actually contacted them about the cradle cap issue and they recommended using organic coconut oil. I also talked to my friend who has been coloring and cutting my hair for years and she said oil would help. So I tried it today. I'll let you know if it works. Your diagnosis looks a lot like mine--my tumor was 7mm, er and pr negatiive and her 2 positive. How are you feeling on taxol and herceptin? I feel pretty well for the most part but have recently been having stomach issues. I get my third herceptin and 7th taxol tomorrow and I'm a little nervous about how I will feel this weekend. Hope you are feeling good!
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This is before, it is a big difference. And check my eyebrows almost gone. So tomorrow I Will go again. They look very nice. Finally with the end of the chemo today. I will return the penguin cold caps right away so they will not continue charging more money and return my deposit.
Good luck!
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