Cold Caps Users Past and Present, to Save Hair
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Red, CONGRATULATIONS!!!!! I am so happy for you!
Willow
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Congrats Red! Yippeee!! I cannot wait to join you and Lizabeth across the finish line! My #6/6 TC will be one week from today! I'm so ready!
I met with my MO today and I mentioned how I believe God's hands are with every drip of TC that runs through my veins, and my MO said, "If God's hands handle the chemo drugs as well as He is working those caps on that hair of yours, then there ain't a bloody cancer cell remaining anywhere!" Ha ha! šš»
My MO was such a skeptic of capping-- said it would not work and not to waste my $$$. He is dumbfounded by the fact that I still have hair on my head! Here is a pic of me letting my hair air dry while sitting outside today enjoying the 60 degree temps! If you look back on earlier pics you can def see how it has thinned, but still hangin in there. I do have a bald spot near my ear. I reported it to my head capper (aka my hubby), to watch out for these sneaky areas. š¤£
I just can't imagine not brushing, styling, cutting, coloring, etc my hair for another 6 months!! Do we really have to wait that long? And what is the norm amount of time that shedding continues for? What about when does new growth come in? Willow and Angiepie-- are you seeing a layer of new growth coming in underneath? Can I assume when other body hair is growing that head hair is too? I have nada on my legs and hoo hoo, and my arms have thinned as well as my brows and lashes. I think capping is such a blessing! 7 more days until final chemo!! āŗļø
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MamaFelice -- I am three months PFC this thur and I have visible new growth (very gray - a little hair spray paint helps with that) -- it will start growing about 3-4 weeks PFC -- 1 week,and counting down! Look at link attached at week 13, that is what mine looks like now -
so happy for you - love the smile!!! Cold capping rocks - there is no doubt about it.
In terms of color - madison reed or other low chemical solutions -- applied strategically can do the trick -- stay away from scalp and do small test areas over a couple of weeks washes, it isn't perfect, it helps.
this is a good post to give you an idea of the new growth, mine is pretty close to this one -- I can tell cause I have a bald spot, this should help you know what is going on underneath and growing thanks to ann credible ...
http://www.anncredible.com/2014/08/hair-growth-aft...
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so Iām ready to do my first round of chemo on Tuesday and Iām using penguin cold caps. I think I have everything but shampoo and conditioner. I was hoping someone could give me a recommendation for a shampoo and maybe a spray leave in conditioner. My hair is wavy and gets tangled easy. Thanks for any feedback!!
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SarahSC - the nurse used paxman conditioner on my mums hair before her cold cap, she wet her hair and applied a conditioner and told my mum to wash her hair after for two days - hair didn't tangle too much.
Good luck tuesday ! I hope it goes well for you
xx
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All bundled up ! 15 mins into her cold capping and is waving hello to all you wonderful ladies ! Sending you our love x
Mumma getting her hair conditioned before her cold cap!!
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loveandlight88-Thank u so much!
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SarahSC, I start the 1st of 4 rounds tomorrow.Ā From reading recommendations on the Rapunzel Project web site (http://www.rapunzelproject.org/ColdCaps.aspx#HelpfulTips), I ordered the "Alra" brand shampoo and Kenra Classic spray-on leave-in conditioner. Both are available online via Amazon Prime, at least that's how I ordered them.Ā I also ordered, and have started using Brian Joseph's Lash and Brow Conditioning Gel (https://brian-josephs.myshopify.com/products/brian-josephs-lash-brow-conditioning-gel) which was recommended to help preserve my eyebrows and eye lashes; will have to report back later on how well that's working.
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Hello cold capers,
Is there someone in the community who knows how many hours of cold caping are needed for FEC100 and Taxotere ?
I read different times :
- FEC 100 / during infusion + 2 or 4 hours post infusion
- Taxotere / during infusion + 3 hours post infusionThanks for help!
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SarahSC - I really liked Kenra's daily clarifying shampoo and their spray/leave-in conditioner (will attach a photo in a few minutes). so happy with both products that I plan to continue with them after the 6 months after capping period is over.
MamaFelice - you look so happy in the sun! There's no way anyone could guess you are going thru chemo with that great head of hair! I'm going to email penguin about blow-drying, and will ask about styling and other products too - will let you all know. I'm guessing they'll say it's very individual, and you need to go by how your own hair is responding.
Hair regrowth - I lost body hair way (legs and hoo hoo) before head hair, but eyebrows and eyelashes after head hair, and for me, growing it back has been different too. I've been growing new hair on my head since my first chemo session, because it was about 1/4" long (about 1 month growth) when I had my bangs trimmed after chemo #2. My leg/groin hair either didn't grow back or kept falling out as tiny hairs during chemo - nothing really noticeable till maybe 1 month or so PFC, so that isn't a good gauge of what your head hair is doing. Have your hubby gently part your hair and look at your scalp - I bet you already have 1/2" or more new growth hidden under your long hair!
Love&Light - beautiful photos of you and your Mum! Sending hugs to everyone capping & going through chemo this week!
Willow
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Dry ice is all packed 'n loaded. Tomorrow is the 1st of 4. Ā
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Schlomit - best of luck to you with chemo and capping
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Great pictures of Mum!! Hoping she didn't have too much brain freeze! She looks beautiful!
Thank you as always Willow for your kind words and for seeking answers to some of my random questions. I look forward to hearing what you learn. Thanks bunches!
Good luck with #1 Shlomit! You got this! You will love how quick chemo will go by because you will be focused on capping! Take a couple of ibuprofen an hour before and an Ativan of you have it. I never had a problem with brain freeze, but I did get chilly by the time Taxotere was over from cooling head, hands, feet and mouth....warm blankets a must! Good lucj
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Thanks, MamaFelice! I don't have Ativan (maybe I should have taken it when offered, but I can still have it called into the pharmacy for the next cycle) and I don't usually take Ibuprofin. I was going to take two extra-strength Tylenol before leaving home.Ā I've got the gel packs for the hands/feet in the freezer and they're on my list with the lidocaine I have to put on my port before leaving home. My new electric micro-fleece throw-size blanket is packed in the gym bag along with the inflatable airline neck pillow. My incredibly-organized capping buddy has made up a series of Excel cold cap monitoring forms to track time and temperature!Ā Haven't wet-washed my hair since Tuesday morning, but I will take a hot shower in the morning using the hand-held shower head (and wearing a shower cap). Getting ready to go to my office in the morning is easier!Ā
I'm incredibly grateful for having found this chat group without which I don't know how I would have been able to prepare so well. Thank you, everyone!0 -
Shlomit - you are going to do great! If you feel you would like something as you start to cap - don't hesitate to ask your infusion nurse. Your MO may have "standing orders" for as needed medications, or they can easily call the office to have something ordered for you. Sending positive vibes your way!
Willow
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Here is a pic of my hair products. The 2 deva curl products are all natural/organic sprays for curly hair-- a detangler and curl revitalized-- fantastic! The alba leave in conditioner I mix with water and spray on if my ends get frizzy. I have liked the Dessert Essence shampoo for the lemon scent, but mostly use the Andalou shampoo....but it is the Earth Science conditioner that has been my fave. It adds a lovely softness to my hair. I sure do miss washing my hair more frequently, but making it work! Good lucj
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Misstic,
What capping system are using? I do arctic, which is the same time regardless of chemo regimen, but I don't know that the protocols are for other systems.
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Shay76,
for the moment, I haven't decided. I think i will order Penguin Cold Caps. I'm sure, there is differences in the duration between chemos to keep your hair. I know for sure that the optimum time after infusion for Taxol is 2 hours and a half (but you can do only 1 hour and keep enough hair). This duration of the cold caping should be the half life of the drug in your body...
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I just found a clinical study about cold capind and duration needed. Copy of the important text below...
A study comparing the effect of a shorter postinfusion time in patients treated with docetaxel (90 vs. 45 minutes) showed no difference in results on hair preservation (95% vs. 79% of patients did not need head covering) [39]. Therefore, a new docetaxel study has started in which patients are randomized between 45 or 20 minutes of postinfusion cooling time. In contrast, for patients with breast cancer who are treated with adjuvant FEC chemotherapy for which scalp cooling is less effective (about 50% with no head covering), it is investigated whether prolonging the postinfusion cooling time to 150 minutes is favorable over 90 minutes.
So :
- Taxol and Docetaxel : 90 minutes post infusion
- FEC : 150 minutes post infusionFor those who wants to read the entire study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3720643/
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Hello Everyone, I am new to this board and I've been reading through and see comments about Brain Freeze. That scared me because I get brain freeze really easily when drinking cold thinks like smoothies and shakes....to the point I sometimes feel like I could pass out but thankfully I don't. Needless to say I drink these things really slow and let them warm up a little first. So is this the same brain freeze the cap gives you?
Best capping system to order? as the hospital doesn't provide.
I have thick, long curly/wavy hair, is it best to cut it some to get a good fitting on the cap or does it matter? It's past my shoulders with some long layers.
I will get 4 chemo treatments which will include Cytoxan and Taxotere. Once I complete the 4th session, am I done with the capping or do you have to do more sessions of the cap itself?
I mostly use Diva Curl products for shampoo, conditioner and styling and only wash and diffuse my hair once, maybe twice a week. Highlight my roots usually every 6 weeks.......but guess that's out the door for a while as is the diffuser. I'll just have to be ok with blonde hair and dark roots.
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Misstic,
Usually the cap company will tell you how long to keep the caps on. For example Arctic is 45 minutes pre infusion, during and 4 hours after. Those are universal regardless of medication. I think most caps follow that or something similar.
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Jsan11-- I am a thick, curly haired gal taking TC.....except I am taking 6 cycles vs 4. If you go back to page 660 (back) & 661(front) you will see pics of my hair just before cycle 5....so potentially where you would be after 4 cycles. If you continue to go back pages you will see pics I posted before each infusion cycle, as well as my hair at the beginning to see if similar to yours from the start. I have used Penguin Cold caps and have found them manageable with my super capper parter (hubby) that ensures the caps are well-fitted. I follow all the rules to a T, and continue capping for 5 hours post chemo. Please let me know if you have any questions! Also, Pambc010417 also has thick hair and used PCC with 4 cycles of TC and had great success..... among many others. It is all soooo worth it! Good luck! šš¼š
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misstic, sorry you are facing chrmo, but glad you found this capping thread! Are you going to be having chemo for the 2nd time? If so, you may want to talk with one or more company rep for your exact situation. They can give you their recommended post infusion times for your meds (and remember, they run concurrently, so if you can have the drug with the longer post capping tome given first, most lif not all of your 2nd drugs post capping time will fall within that window). They should also be able to give you sucess rates for your chemo regimen, and any considerations if this will be your 2nd time having chemo. My MO said that can lower the sucess rate a bit, but I dont know any specifics.
Willow
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misstic, sorry you are facing chrmo, but glad you found this capping thread! Are you going to be having chemo for the 2nd time? If so, you may want to talk with one or more company rep for your exact situation. They can give you their recommended post infusion times for your meds (and remember, they run concurrently, so if you can have the drug with the longer post capping tome given first, most lif not all of your 2nd drugs post capping time will fall within that window). They should also be able to give you sucess rates for your chemo regimen, and any considerations if this will be your 2nd time having chemo. My MO said that can lower the sucess rate a bit, but I dont know any specifics.
Willow
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Hi I used penguin cold caps, 6 cycles FEC regimen and they advised to wear the caps 9 hours in total. They will tell you.
It is hard but doable. And it is worth it. This week is 17 after chemo and finally I stop shedding and my hair is growing back.
I am taking Biotin 10 000 mg. I hope it helps, Keep going.
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When you do the cold capping is it necessary to leave it on for several hours after the end of the chemo treatment? For those of us who go to work right after chemo is there anything else to use
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Exercise is recommended during chemo, and I'm hoping to keep up as much as possible with my personal trainer. In the course of today's 1st round of chemo, which included orientation/training with a fabulous registered nurse, she strongly recommended that I take appropriate steps to, quite literally, to find a cap or similar headwear that will serve to keep my head/hair from heating up; e.g., something in which I might use or insert a cold pack. Any ideas?
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