Cold Caps Users Past and Present, to Save Hair
Comments
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Maggie-Yes, I too have had rediculous amounts of flaking that has finally let up 1 month PFC. I wouldn’t wear dark clothes at all as it was so bad, and definitely worse after shampoo. I didn’t use dandruff shampoo...it just stopped on it’s own.
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Thank you all for your input on dry scalp post chemo. Rwns, it’s good to hear that maybe another week or so for me may cure the problem. HikingLady, I hope you continue to have good success with cold capping
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twocats- i felt like I was reading my own thoughts with your Stages of Shedding!!!! It is all so very true!
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ok ladies - I am 5 weeks since my first TCH (my 2nd round has been postponed twice due to low neutrophils) so my 2nd round will be tomorrow - I am using paxman scalp cooling machine - I do still have my hair although I’ve been shedding pretty consistently the last 2 weeks - of course today was hair wash day which is always stressful - scares Me there were wont be any hair left after 5 more infusions - did u find the shedding slowed or will this be continuous?? My oncologist thinks it’s a waste of time- I would love to prove her wrong! But I’m starting to worry
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I'm halfway through and thin enough up top that it appears to make some people uncomfortable.
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Hello, Ladies! Good news: Mass general hospital in Boston and Danvers Lications is using Paxman cooling caps. I would like to try, posssible for chemo starting August or September, 2018, regime n4 times everyb3 weeks . I believe but not sure it’s eill be taxotere, have appointment with oncologist next week.
My question for someone kind sbout Paxman coolibg caps :
1.I dyed my hair blond in April 2018- still in July I have darker roots and blond dyed hair- is it ok to use it Paxman coolibg caps?
2. What to use to protect forehead and ears from burning and where to buy Moleskin?
3. Did any of you developed sinus infection because of cold ? I will go for treatment from August to November if feel well!
Thsnk you for tremendous job, girls!!!❤️❤️❤️Hugs to all
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Bostoniangal25 - I am using Paxman as well - I’ve only done one chemo session so far - my rep for paxman said as long as I don’t colour my hair during treatment or 6 months after it’s fine to use - I honestly did not find it unbearably cold - I did not use moleskin or anything on my forhead or ears - if you need something some cotton pads would do the trick - It goes down to -4 Celsius and I found It fine.
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bheg79- I hope you do prove your doctor wrong! Be gentle with your hair and you will! We apparently have major hair than we think. I was scared the whole process, but I had great results. I had 4 tch, but I had enough hair that I would have been ok with 6 treatments. I’m just waiting until September so I can color my hair again.
I found that shedding would get worse every 3 weeks and when I would wash it. Even after it was over I still shed, I think I’m back to normal finally.
I hate hate hate when oncologists aren’t supportive of our choices of trying to keep our hair. I wish they realized chemo, radiation and hormonal treatments is only one facet of cancer care. They need to treat the whole person and not just the microscopic cells, and it’s not a vanity issue, it’s quality of life. End rant, for now...
Good luck to all who are cold capping!!! You got this!!!
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bheg79- I hope you do prove your doctor wrong! Be gentle with your hair and you will! We apparently have major hair than we think. I was scared the whole process, but I had great results. I had 4 tch, but I had enough hair that I would have been ok with 6 treatments. I’m just waiting until September so I can color my hair again.
I found that shedding would get worse every 3 weeks and when I would wash it. Even after it was over I still shed, I think I’m back to normal finally.
I hate hate hate when oncologists aren’t supportive of our choices of trying to keep our hair. I wish they realized chemo, radiation and hormonal treatments is only one facet of cancer care. They need to treat the whole person and not just the microscopic cells, and it’s not a vanity issue, it’s quality of life. End rant, for now...
Good luck to all who are cold capping!!! You got this!!!
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Bheg79, ❤️❤️❤️To you !!! Thank you for input !!! I wish you the best and get over soon with chemo!!!!
I believe other brand using more cold , they freeze to -24 c I believe!
Are you using cryo mittens and socks as well for neuropathy? Thanks
Ps. Ypu must be European, right? You using Celsius not Fahrenheit. I m from Latvia but live in USA!!!
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Hi, I’ve decided to use cold caps, but am having trouble deciding which company to rent from (I don’t have the option of Dignicap or Paxman). Can anyone give me a recommendation, including why you like the company you chose? Thanks so much
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Appyfan, I also didn't have Paxman or Dignacap as an option. I went with Penguin for several reasons. The most compelling reason for me was that Penguin could get the caps shipped out in time for chemo starting. They also were very responsive to both my email and phone messages.
Bostoniangal, I used cryo mittens and socks during my infusions. I just saw both my breast surgeon and dermatologist this past week. Both were very impressed with the fact that I didn't experience any neuropathy nor discoloration or loss of nails. The BS said that there aren't formal studies on icing hands and feet during chemo. She relies on the results of her patients that have iced with good success.
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Thank you Maggie2! I talked to Penguin, but the rep seemed a bit disinterested, and they only provide 4 caps. I am also planning on icing my hands and feet (same chemo as you had). How long did you continue to ice hands and feet after the infusion was over? Thanks again
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I started icing during the premeds before the actual taxatere infusion, so maybe about 15 minutes prior to chemo. I iced during the taxatere, the 30 minutes or so for the cytoxin, and then the 10 minutes while the onc nurse flushed out my port and finished up with me. Supposedly, it's only the taxatere that causes neuropathy and nail issues, but I just didn't want to take any chances.
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Maggie-how’s your hair these days...I’m still shedding!! 4 1/2 weeks out!!!
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Rwns, I was just thinking of you! My shedding hasn't slowed down at all. Thursday will be 4 weeks PFC. I just can't imagine having any hair left if the shed continues at this rate and for how much longer!? Tomorrow, I see the hair stylist for the first time since prior to chemo. I'm having him trim about an inch off the ends. He will be shocked at how much gray is growing in now, but at least I do have new growth around my hairline and eyebrows are starting to come back.
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Maggie-yeah, I’m thinking of doing a little trim as well, might make it look a bit fuller. It does seem as though my current shedding is more around my neck line, as opposed to the top/crown area. The shedding on top might be tapering off 🙏. Maybe different areas shed at different times? Or maybe the caps on my last round protected in different places? I have lots of gray too, but I kind of like it. In fact I’m going to ask my gal to use high/low lights to just blend in with the gray instead of covering it.
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Hi appyfan,
I am heading into week 10 of 12 using Penguin caps. So far, so good, although I am noticing more shedding this week for some reason.
My Penguin rep was pretty disinterested too but it didn't really matter to me. I'm curious why you are concerned that they only send 4 caps? This hasn't been an issue for me - rotating through them works fine. In fact, once we got a couple of weeks in, we kind of came up with our own system and sometimes only need three caps, since they freeze much quicker after the first round in the dry ice.
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Thanks mobscene207. My worry was that the caps wouldn’t be cold enough throughout the rotation with only 4, so I’m glad,to hear that.I thought I had seen some information that a few years ago, Penguin did provide 6. That coupled with the attitude of the rep (especially considering Penguin is the most expensive) is what turned me off. I’m glad to hear they are working so well for you. I will be on TC, and am nervous as h*** . At least the research on cold caps is keeping me from reading about the othe SEs! Thanks again for your help
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Appyfan, Maggie2, RWNS- I think I will have the same chemo protocol as you!!!
Maggie2, thsnk you for advice, I didn’t know patients can loose nails ?!
We have Paxman caps at our hospital so will use it. I think it’s 1,300$ for 4 sessions, and insurance May cover or some patients eligible for financial assistance.
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Bostoniangal, according to the Chemocare printout from my MO, one of the listed SE's of taxatere is "Nail changes (color changes to your fingernails or toenails may occur. In extreme, but rare cases nails may fall off...)". The ladies that use Paxman seem to have success, though they emphasize making sure to get a good, tight fit with the cap.
Appyfan, I was also concerned at first about getting just the 4 caps. Others on here assured me that 4 are enough. As Mobscene said, the caps refreeze with the dry ice in plenty of time to keep up the rotation schedule. Maybe someone that used one of the other capping companies will offer their experience.
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Maggie 2, thsnk ypu
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Hi Ladies! I started the same journey 1 year ago - 4 rounds of TC, 3 weeks apart. My MO is the one who encouraged me to try cold-capping - she had seen wonderful results for her patients with the dry ice caps, and she pushed the hospital to get 1 Paxman machine (although that was after I had already started treatment). Don't let a doctor's opinion sway you - while the results do vary, I haven't seen many/any women here saying they regret having cold-capped. I lost about 60-70% of my hair - sounds scary right?!!!! However, it was an even loss all over my head without any bald spots or widening part, so I never "had" to wear a hat or head covering in order to hide baldness. It wasn't great hair, but I had hair, and for that I was very grateful!
I used Penguin cold caps and found initial contact with the rep to be a bit detached, but service was excellent, including shipping so that caps arrived in plenty of time to allow some practice at home before first chemo session, and she was very fast and thorough in responding to my questions after I received the caps. Billing was accurate and they were quick to refund my deposit and the prorated funds for the days I had paid for but didn't use for the final month.
OOPS - EDIT TO ADD: 4 caps were plenty for rotating! I needed a temp of -28' C, and often the next cap was too cold and needed to sit out for a few minutes to come to the correct temp before I put it on.
****Discounted Penguin Cold Caps - Ask for "used caps" and the rate will be significantly discounted (I think $350 per month). When you order online, they are sending you brand new caps straight from the factory. "used caps" are ones that have been returned, and are cleaned before sending out to someone else. The cap material makes it easy to sanitize with wipes, and I would have been completely comfortable using them. I wish I knew about this prior to ordering, since they don't mention this discount anywhere on their website!
Good luck to all of you and stay strong!
Willow
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Hi All
I used Penguin Cold Caps and thoroughly agree with Willow22 Their service and billing were great. The rep always responded promptly to my questions and I asked a lot of questions. She gave me her personal number and would even call me back at night. The rep I worked was all business, not warm and fuzzy, but she was very helpful. Four caps were plenty. We also could have gotten by with three.
As far as results, I am currently 2 months PFC. I had 6 rounds of TCHP and really did not shed much until after round 5. The shedding accelerated after I was done with chemo and is still going strong. I finished chemo with about 90% of my hair. I estimate that I am at about 60-70% now. It's thin and brittle with a slightly widening part, but I still have enough coverage to go out without feeling self conscious. Without the cold caps I would have been bald 5 months ago. I'm grateful for those caps. I will post before and after pics when the shedding stops.
Good luck to all with your capping and chemo. You got this
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Rockcity-I’m just a few weeks behind you...a little over a month PFC, also used penguin. I’d love to see pics. I think I’m in the same zone, thinning all over, but no bald spots. Flaking has stopped and soreness is almost gone, so I’m hoping shedding will ease up soon.
Bostoniangal-I didn’t ice hands/feet and did not have nail or neuropathy issues...no idea why. Look up Tiffany’s Tips on this sight, great resource.
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Rwns, Thsnks !!! I already marked all great tips!!!! It’s really helpful to read and know that we are not alone and have great army of sisters here!!!❤️❤️
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Thank you for your help
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Hello!
I'm using the penguin caps and have done 2/12 of weekly paclitaxal (to be followed by 4 of AC every other week). No shedding yet, but I think even without the caps I'd be good for another few days until it starts falling out.
4 caps are plenty for dry ice, if you are doing a biomedical freezer I've heard they send 12-14 caps.
my first treatment we used the dry ice and the caps were so cold we almost couldn't get them warm enough to put on my head when it was time to change, I think about 1/2 hour on the dry ice gets it to the correct temp, so one cap on the head, one cooling and one ready to put on. Three is almost easier than 4.
Question: I have long, straight fine blond hair and tend toward the oily side. If I'm not supposed to wear a high ponytail, not supposed to wash my hair for 5 days, what am I supposed to do to not look like I'm taking a hygiene break? I'm still working and am trying to figure out the balance of keeping my hair and having it look like it is worth keeping!
Q2: anyone been successful keeping their hair through the AC part? I've heard that it is the hardest one on hair. I'd love to hear some good news.
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Hi Cria,
I also used Penguin Cold Caps. Your hair might drive you a bit crazy for a few weeks as it gets used to being washed less frequently. Your hair will adapt and the chemo itself will dry out your hair. Prechemo I washed every day. I’m 2 months PFC and I am washing every five days and my hair isn’t even oily, it’s just messy. Hang in there. Some people use a dry shampoo to help out. I’ve heard Bumble and Bumble is a great product.
I had a different chemo regimen than you. Hopefully some ladies who used AC can chime in about their success.
Good luck
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appyfan & other newcomers
I used Warrior Caps out of Dallas (I’m in Phoenix) & I cannot recommend them HIGHLY ENOUGH!! Lisa is the most effective and caring contact you could ask for. They return calls and/or emails very promptly. Six caps, cooler & a host of equipment and goodies provided with the rental. Thank goodness for the electric throw!
Good luck-you’ve got this.
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