Cold Caps Users Past and Present, to Save Hair
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tripper so sorry to hear
Is there anyone else you can get to help you? Possibly call geralyn and see if there's anyone in your area that you can ask?So my caps are on their way to me and I saw in the instructions that you need to it then in the regular freezer when you're not capping. Ummmmmm my freezer is realllllly tiny and full. Do I need to keep them that cold? When do I need to put them on dry ice to get them cold enough for the capping
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StefLove,
We have a second refrigerator/freezer so placed them in there between chemo sessions. The night before chemo, my husband would get the dry ice and pack the coolers. You don't want to use the dry ice too far in advance because the caps will be too cold when you're ready to start capping.
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Oh Tripper, I am so sorry to hear about your situation. You are so close to being finished.... Yes, is there anyone else you could reach out to for help or checking with a rep for direction on finding someone else to help.
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Steflove, we bought the dry ice the morning of the treatment and put them on ice two to three hours beforehand. The night before they were in the freezer. Even then the caps were too cold and had to be warmed up a bit. We ended up having a lot of dry ice left too, even though we bough the recommended 45 pounds. It depends on how long your infusion lasts - mine was about 2.5 hours then I wore the caps for 3 hours post and 50 minutes pre.
Tripper, so sorry to hear about your situation too. That really sucks. Perhaps as someone else suggested you could get a friend to help for the last few treatments?
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Tripper - is there anyone else you can ask? Let us know where you are...maybe someone can help you.0 -
I have a question that I hope someone can help me with. I finished my chemo last month. Taxol/ herceptin once weekly for 12 weeks. I sent my cold caps back. They worked really well for me and I did not lose any hair. However, I haven't had my hair colored since December as I didn't know when or if (docs were divided) I'd be starting chemo and the penguin guys said not to color your hair for a month before chemo. So that was the first week of December. Ok, so now I'm starting to look like Meryl Streep in Into the Woods.
I am washing my hair as I always have done and started using my dryer with a diffuser ( I have curly hair now shoulder length) on low. No problems. No shedding, nothing. I really need to get my hair colored as we have a big event we're going to, also I can't stand looking at all the big grey streaks among the red.
The penguin people say not to color your hair for 6 mos after chemo, but if I go that long I'm going to look like a yeti. Has anyone out there had any experience with this? I feel 6 mo is way too long to wait to look presentable.
I know someone here mentioned they got their hair straightened just a few weeks after finishing chemo and everything was ok. So I'm wondering if the 6 mo thing is just an abundance of caution on Penguins part. My colorist is very good, and has found an ammonia free product, but it does have some peroxide. The only other thing she suggested is henna (no ammonia, no peroxide) which she's never worked with, which scares me.
In light of the fact that I didn't lose any hair does anyone who's done Taxol /Herceptin have any suggestions and or advice? Practical experience? I'd be most grateful. I have lots of hair but I'm looking like a wild woman and really need to be presentable and professional looking again.
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Suladog, I also had 12 weekly taxol/herceptin and no or minimal shedding. I had my salon color person color my hair at 7 weeks PFC with no ill effects. We used a no ammonia, no peroxide product which didn't cover very well but was definitely better than my long white roots. Four weeks later used the same product and sat under the dryer that time which made for better color and coverage. Four weeks after that we went back to the regular salon color. I think as long as you're not shedding you'd be fine to color. DaniellaD had some good recommendations for hair products - I haven't seen her around much lately but you could try sending her a personal message.
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Hi ladies. Can I get recommendations for your favorite shampoo during cold cap therapy Treatment? I am able to find a lot of general information about using organic shampoo without sulfates, parabens, or phytalates, but I would like a little more specific suggestion of a brand that any of you have actually used & loved. Any tips/advice on product would be greatly appreciated. Thanks! Be well!
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I have been using the Oribe and Unite product lines and really like them. I had been using Unite prior to my diagnosis.
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DaniellaD - Did you use Color Wow or Rita Hazan during chemo or just after? Did you think using those products caused any further loss or thinning? I've already used Rita Hazaan spray before chemo in between hair color appointments and its great, but worried about the propellant. Anyone have experience with Color Wow and effect on thinning DURING chemo?
Thanks!
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Scarlett152, I used Color Wow during treatment and it didn't affect shedding at all. It also covers very well and stays in pretty well between shampoos with just some touchup. Good luck!
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what do you do for sn itchy scalp?
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Alibeth, I mixed apple cider vinegar & water in a spray bottle and used it on my scalp when it was itchy in the beginning. Others have used it mixed with their shampoo. The acv also helps when your scalp becomes flaky. I used it when I had some frost bite after one of my capping sessions, too.
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my greys are RIDICULOUS right now and I haven't even started chemo.
I stopped dying my hair about 6 weeks ago knowing that I'd be capping and didnt know when chemo would start. I have REALLY dark brown hair, almost black, which is my natural color. but thanks to genetics, I've been VERY VERY grey (about 75% my hair dresser says) since I was 25 (I'm 34 now). I'm pretty sure I get a comment on my greys daily from friends and coworkers since this all started. Color Wow has officially been purchased.
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StefLove, I feel you. I had 6 weeks of grey roots when I started last week. Going to be very scary 3 months after I finish on July 9th. I have been a bit confused. Can we use a peroxide free color like Herbatint one month after the last chemo session, or three months after? How long until full peroxide color? 6 months PFC? I'm using the Penguin Cold Caps.
Medium brown Color Wow is very dark. Will have to reorder the golden brown.
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pch ,
Where is that group???? I don't know where to find it on the site
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Suladog - pch is right ... you need to move over to the other boards ... they are wonderful. Try this link ... hope it works:
https://community.breastcancer.org/forum/69/topic/...
If not, just search for life after cold caps .... hopefully you'll find it. I'm just over two months out now from my last treatment and have an appointment this Thursday to get my hair colored. Salon is using no peroxide/ammonia. Like pch said, read the posts. You'll find a lot of girls had their hair colored way before the 6 months. I can't take it any longer. No highlights for me yet ... just base color to get rid of the ombre look. No, it doesn't look good on me!
Let me know if you find it. Glad to hear you were another success with the caps. Thank God for them!! Good luck! Kim0 -
Thanks Goldenpaws,
I got the link and asked my questions there!
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Does anyone have information regarding Penguin Cold Caps vs Chemo Cold Caps? I will be having AC and then 12 weeks of Taxol
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Did you use Penguin cold caps or Elastogels?0 -
Penguin Cold Caps is a manufacturer of cold caps. You rent the caps directly from the company. It's the brand most of us have used.
Chemo Cold Caps also rents caps but they are not a manufacturer. They are a service company that provides ElastoGel caps. That's a different brand of cold cap. They also provide services related to cold capping- supplies, dry ice etc. It's important to note that you can buy ElastoGel caps yourself without using Chemo Cold Caps. I believe you can get them on Amazon. It may or may not be worth it to pay extra and have Chemo cold Cap coordinate the service and delivery for you. That's a personal decision.
I hope this helps.
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got my caps in the mail and was able to play an amazing game of Tetris to fit them all in the teeny tiny freezer after transferring them to zip loc bags. Whew!! Will try them out for a test run tomorrow.
When should I put them on dry ice? The morning of? The night before? Thanks ladies!
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Sorry Stef, i don't use the dry ice....I am 19 days post chemo #1 and i haven't lost much at all. KNOCK WOOD! While it SUCKS so bad, the caps WORK!!!!!! Good luck tomorrow...DId you practice?
Also, did any ladies put their hair up at all???
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wore my hair pulled back a lot in a loose ponytail or loose bun all through chemo
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StefLove - I don't remember which caps you're using. I have Penguin Cold Caps and they came with quite detailed instructions. I put them on dry ice 3 hours prior to my appointment time. I have 8 caps and 2 coolers. I buy dry ice the afternoon before, I get 8 slabs of 10 pounds each and it has been working fine for me.
Alibeths - I leave my hair just hanging during cold capping.
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StefLove, if they're Penguin Caps, put them on dry ice three to four hours before your first capping. If you put them on ice the night before they will be too cold. I think we averaged around four hours before.
Also, the day of your first (and pretty much every) infusion, take one out at least fifteen minutes before you need it and check the temp. If it's up in the high -30s, have your capper knead it and then keep checking the temp to see how long it takes to get to the correct temperature and use that as a guide for the timing of pulling them out. If it's the right temp, then put it back in the cooler till you need it. Toward the end of the day you may find that the caps are not as cold as in the beginning or as cold as you need them. So don't quit checking. If it's not cold enough, then check another, as you won't need to go through the whole rotation again. (It sounds complicated, but you'll get into a rhythm.)
Another thing, don't forget to wipe the condensation off of the interior surface! (Otherwise you will get frostbite.) And some people don't, but most of us try to change our parts or comb hair straight back between caps. Otherwise, again, you risk frostbite.
Last bit of advice, if the fit feels off and you don't feel good contact somewhere, quickly rearrange the fit so contact feels consistent. You will get more pronounced thinning in those spots if you don't stay on top of the fit/contact. Only you can feel it, so even if your capper gets frustrated, it's worth a moment to get the fit right.
Good luck!
(I also had eight caps, two coolers and got ice late the afternoon before. I got 80-90 lbs. each time, cut the same way. If you mention to your ice dealer that you're doing it for capping, he may give you a break on price. Mine did. He was a sweetheart.)
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well day one is done! And woah it was a long day. I think and hope we were successful though. The temp gun I think had a crappy battery the first two caps so I honestly don't know if they were the right temp. Swapped out the battery after and it was fine. Towards the end of the 4.5 hours post chemo though it was hard to keep the caps as cold as they should be. Hopefully all went well.
Started to get nauseous towards the last 4 caps though so I just wanted those damn things off my head
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yay!!!!!! Have them give you something for the pain! It helps. Off to treatment 2
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isnthis ok?
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