Cold Caps Users Past and Present, to Save Hair
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Clair1973 - I used the ear bags as well while using the Penguin cold caps. They worked well for me!
Good Luck!0 -
thanks for the tip
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Hi, Taxotere cold cappers!
Finished my (4) TC treatments Jan 21st, 2021. Hooray! Used Paxman cold cap and have about 30-40% of my hair left.
Still shedding but it seems to have slowed down now that I’m 2 weeks out. But I still lose many strands every time I “wash” my hair.
For the past three months, I’ve not scrubbed my scalp when I wash my hair... I’ve simply been mixing a bit of mild shampoo with warm water, poured that gently over my head, and rinsed.
Question: Is annoying else out there afraid of washing your hair as you once did? I worked so hard to keep what I have, and every time is traumatic. But I’m getting so impatient and my scalp is getting itchy and flakey.
Anyone know when it’s safe to wash more normally?
Thanks, -Renbird
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I'm 8 months out and, still afraid to wash my hair. I still use my palms and, instead of fingers and, wash 2x week instead of every other day (before Chemo).
My shedding returned to normal about 3-4 months after finishing Chemo but, I'm still afraid 😁
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I’m four months out, roughly, and have finally returned to normal washing. I hate showers though now. Used to love a nice, long hot shower. Now it’s a chore that I force myself to do.
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Morrigan and Kmom - are you seeing any regrowth yet? When did it start?
I'm about 1 month out from last TC infusion and I lost a lot of hair even though I used the Dignicap.
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marie914, yes I have regrowth to the point I no longer have to camoflauge bald spots. A spot in front where it fell out is now about an inch long, long enough it doesn’t stand straight up anymore. I looked back over my messages, and the first time I mentioned having hair standing up in that spot (I called it my Heat Miser look) was Dec 29, so 2 1/2 months maybe. It had started filling in before, but looked very sparse. I also have regrown my full eyebrows and eyelashes. I finished chemo first week of October I believe.
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@marie914 - my hair I growing like crazy. It started about 3 months post final chemo. I have 2-4 inches of new hair growth. Some places seemed to start earlier or are just growing faster. I've also dyed my hair twice at this point. I waited 5.5 months to dye it the first time and about 9 weeks for the 2nd dye.
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I just finished Taxol infusion 6 of 12. I haven't noticed unusual hair loss on my head yet--I'm hoping this trend continues of course. My downstairs hair is leaving me quickly--leg hair not growing and my eyebrows and lashes appear to be thinning.
I was wondering yesterday during my ONE shampoo a week--when will I go back to normal with my hair? I'm so happy to have this thread. So it sounds like AT LEAST 3 months before the hair program is back to normal? Did anyone lose hair on your head AFTER your chemo and cold cap was finished? or were you losing the hair during the cold cap use? Just curious. Or can you settle down once you notice regrowth?
After treatment I will have surgery in Mid April and continue Herceptin for 9 months. I guess at some point during that time it will be more clear on when I can treat my hair like hair and not a fragile baby bird.
The regular Medical Assistant wasn't there yesterday so someone else put my cap on. I realized about 2 hours in that on my right side it seemed to be more hiked up and NOT covering my hair line around my right ear and right side. ugh. I wonder if that will make a difference this one time and I will start to lose hair there. I started to try to adjust it downward. I think I was successful, but it was only there for the last hour.
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Did anyone have crazy neck clicking after starting Cold Cap? My neck is crazy with the clicking--luckily it's not painful, YET!
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Hi all! Thought you might be interested to read this new BCO research news story about how scalp cooling systems work:
Scalp Cooling Reduces Hair Loss by Lessening Chemotherapy Absorbed by Hair Follicles
February 16, 2021
A study offers a first peek at the biology behind scalp cooling by finding that scalp cooling dramatically reduces the amount of chemotherapy medicine absorbed by the hair follicles. Read more...0 -
Claire1973,
I finished my chemo (Carboplatin & Taxotere) on Sept 16, 2020. I'm not sure what system you are using but I used Penguin Cold Caps. My instructions were to wash my hair only twice a week for 6 months after my last chemo. Also no coloring my hair until 6 months after. I'm now five months out and I'm still following these instructions. I didn't go through all that pain and expense to take any chances on messing things up by not following everything exact. (I have an appointment to have my hair colored on March 16!) I did lose some hair during my chemo treatments and some more after. I think the hair loss has slowed down now, if not completely stopped. I definitely have some growth going on and hope it will continue. And no, no clicking! Good luck!
Laurie
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Moderators,
You have no idea how timely this is! Thanks so much for sharing! My chemo center doesn't offer cold cap but we were able to bring in the Penguin system. It worked for me. I finished chemo last Sept and still have hair. My oncologist said if I hadn't done cold cap I would be bald. I only found out about the cold cap through this site. I told my oncologist that she and all the others should tell their patients about it. She is resistant because she said it's not proven to work. I have been trying to put together information to convince her that she is wrong. I will be using this article to support my beliefs. I am going to volunteer to be a contact person for anyone from my chemo center that has questions about it. So as you can see your article has perfect timing!!!
Laurie
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Hi Laurie,
Here is another article. This is my oncologist. She told me about the cold cap:
https://www.ucsf.edu/news/2017/02/405826/scalp-coo...
I know it's a good thing that I am reading that people are waiting the full 6 months. Good to know. I am sure that was VERY hard to do. I have a system down with my shampooing that is working well, so I will continue, too. The hair color part will be harder but will wait. My hair started coming in all silver right when chemo started, so I have quite the skunk stripe. 4 more weekly treatments left. Then my surgery is April 21st. I know when I heal from the surgery I will be antsy to go back to "normal," but I will wait.
Hope everyone is having a good day. xoxo
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Waiting 6 months to color my hair was awful, so much Grey/white hair. 😂0
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Hello , newbie here😢 Have to do just 4 TC and trying to decide if using cold caps is worth it or not, Does it work? Have shoulder length thick hair , just so scared go the other route but scared of disappointment if cold cap is a flop too? Anyone have advice please? Starting in March, Also did anyone keep eyebrows and eyelashes with TC, read using growth serums on both day one helps? Thsnk
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Hi Corals, welcome, and sorry you had to join the club.
In case it's helpful, here is an article on Cold Caps and Scalp Cooling Systems.
Also, a podcast we did on this topic is on the bottom of that page.
We hope this is helpful.
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hi corals - cold capping works well with TC
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HI Morragin_2575 Did you use cold capping ? Your treatment was not TC ?had just one part listed being the Taxotere, thank
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Hi Corals, I am using the Dignicap cold cap. I have had 8 weekly treatments. I think I've lost about 50% of my hair (maybe less) and am not shedding anymore. I don't think anyone but me would realize that I lost hair. It looks "normal". I'm receiving Taxol.
Just my perspective---I think the people this has helped the most are my kids. They can look at me and not see cancer. I hope that has made it all less scary for them. Also, when I run into people I know at the store (this has happened twice), I can choose whether or not I feel like telling them/talking about it in the parking lot! Both times I emailed them after, but I'm happy I didn't have to go into all then....
I'm also hoping that the regrowth will be easier....I'm told it will be. It's such a personal choice. It is very cold and in my case I have to sit in the chair for 2 hours after the treatment is over, so I'm there for 5-6 hours. There's no turning back now, but I'm glad I didi it....I'll be more glad when it's over!.
My eyebrows and eyelashes are DEFINITELY thinner, but they are still there for now. My leg hair has been gone for about a month. My nails don't grow either...so the Taxol is definitely killing the fast growing cells, but if you looked at me my hair would look normal....except that it looks wild from not being able to style it.
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Hi Corals - I used Penguin cold caps with 4 rounds of TC in 2019. I also had really, really thick hair that was a bit below shoulder length. Before my BC diagnosis, I actually had my hair thinned every 4 weeks. Once diagnosed, anticipating hair loss, I stopped having it thinned. In retrospect, I would have continued with the hair thinning regimen and had the length shortened a bit. My hair was so thick, I believe it insulated my scalp as I never felt the “cold” that others have experienced. I lost a great deal of hair, but I also kept a lot of hair. While the risk is very minimal, I was worried that the Taxotere would result in some permanent hair loss. That was my primary reason for cold capping. I would definitely cold cap again and don’t regret the decision one bit!
My eyelashes fell out and my eyebrows significantly thinned. I didn’t use any products on either. My eyebrows grew back very quickly. About the timethey were really becoming noticeable, they started growing back! And truthfully, I never noticed when my eyelashes fell out or when they started growing back. I think I was too focused on my hair - lol!
Not related to hair or cold-capping, but FYI, I also iced my hands and feet during treatment.
You can do this and you will make the right decisions for you! Good luck !!!
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@Corals - I did Dignicap and had 6 cycles of TCHP (Taxotere, Carboplatin, Herceptin, Perjeta). It worked, I kept about 70% of my hair. I probably would have kept more if I started using leave in conditioner earlier.
I had very thick, long hair. On the nurse's advice I cut it to shoulder length. It was actually growing during Chemo, while other hair fell out.
My hair went from thick to thin but, I don't think people noticed except my and my family.
I mostly lost hair up front (looked like receding hairline) and down my middle part.
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Ladies thank you for the replies, it’s helping me to get courage up to try cold capping. Has anyone use the caps system from Polarcoldcaps? Pricing is better than penguin and I would assume a quality cold cap should be ok if not penguin?
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Hi, Cold Cappers and Cold Cap Consider-ers!
It's simultaneously comforting and disturbing to hear that many of you could not return to "normal" shampoo-ing until 6 months (!) after cold capping. Paxon told me it would likely be 8 weeks (!) until I could wash/color again when I called one of their way too chipper consultants.
It's been 5 weeks after my last of (4) TC treatments, I am still shedding and YES showering is upsetting when I wash my hair (Friday only). I feel your pain! Ugh!
That said, I am fairly certain that I would be 100% bald without capping, so I'm glad I did it.
I think now the only thing to do is to reconcile the fact that I may lose most of my hair before it stops shedding (perhaps in June if the 6 month mark is accurate?) Ugh!
Also, I hear Tamoxifen makes your hair thin too. Anyone have experience with that? Does AI too?
Thanks and love to all.
-Renbird
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hi Renbird,
I waited to return to normal washing out of abundance of caution. While I continued to shed for 2-3 months post chemo, the shedding rate slowed down during the last few weeks. Simultaneously, my hair started growing back in. I badly needed a haircut to even out the lengths, but I waited 6 months. In the meantime I pinned it up with very tiny butterfly clips.
So I did shed a lot at the end of chemo and the following couple months after, and I did have bare spots ( partly my fault but also because my hair is thin to begin with). By 6 months I had a filled-in head of hair. I probably would have not cold-capped if it had been a different chemo that had the chance of permanent hair loss.
You have survived the worst of this process. Hope you feel better every day (focus on that) and soon your hair will be back in full.
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Baile112. Hi, how did you do with the 4 TC? I am about to start that and doing cold capping als
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Hi Corals & my wonderful BC.org gal pals-
Renbird here. I'm 6 weeks out from my last TC/cold cop treatment (I used Paxson machine, not Penguin or DigniCap) and although I am so grateful for the hair I have (about 1/3 left) I am still losing hair everyday. (Maybe 100 strands a day of what's left?)
From all I'm reading on this site, I may have another month and a half (or longer) of hair loss before it stops, so I might end up with little to nothing left, but I know it will grow back eventually and so far I have no regrets! Having some hair makes recovery during the toughest part a bit easier... even though the shedding is a constant reminder of chemo.
Next up... another decision: 5 years of Tamoxifen or Lupron + AI hormone treatment for me. Need to make a decision this month.
**Has anyone experienced additional hair loss on Tamoxifen or Lupron + AI?**
Corals: Do you have any remaining questions re: TC (I had 4 treatments) or cold capping? Happy to help if you reply to this message.
XO and best to all.
-Renbird
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Hi Corals, I successfully cold capped with 4 cycles of TC (although after an allergic reaction to taxotere during cycle 1, the taxotere was switched to abraxane). I did shed a lot, but overall, kept enough hair that people who I didn't tell had no idea. Washing so infrequently and not being able to dye or style my hair probably left them wondering what WAS going on, but I doubt anyone suspected chemo. I continued to shed for about 4 months after my last infusion, but my hair also started growing back during this time so it didn't seem to look any worse or more noticeable. And now, less than a year later, but hair looks about the same as it did before I ever started.
Renbird, I had the same decision regarding Tam vs Lupron/AI. Actually, my oncologist wanted me on Lupron either way since chemo didn't stop my cycle, so my choice was between adding Tam or AI. Lupron has been very tolerable for me and I'm 9 months in. Everyone responds so differently to these medications which makes the decision difficult. I was open to either but started with Tamoxifen. I'm only speaking to my own experience, but tamoxifen gave me incredible anxiety almost instantly. I had never experienced anything like it before. I mean, yes, the whole process of being diagnosed with breast cancer came with a lot of anxiety, but this was different. Again, definitely not something that happens to everyone. I was on Tamoxifen for 2 full months and decided to switch. I started Arimidex in the beginning of january, and so far so good. I'm starting to notice the aches and pains but I have my mental health back (THANK GOD) and I feel like there are things I can do to offset the side effects. I eat really healthy, exercise, drink lots of water, prioritize sleep, minimize stress, etc. and can see myself staying on this combo for the long haul. I know I haven't been on this regimen super long, but so far, my hair has filled in completely and I barely shed at all.
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Hello Seawell,
You and your hair look fantastic! I'm happy for you! Quick question about that Pura d'Or shampoo...when (how long after chemo ended) did you start using it? Or did you use it during chemo?
Thanks,
CDub
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