Cold Caps Users Past and Present, to Save Hair
Comments
-
Welcome April! I used Penguin through AC x 2 and Taxol x12. The hair routine was/is hard. I finished 3 weeks ago, and I’m gonna stick with the hair routine for at least another few weeks. I have hair, maybe 60% or so, but my regime was really strong. I have thin spots/bald spots but I’m able to cover it up. Didn’t need my wigs.
Good luck! This video was super helpful for us
0 -
Welcome April. These forums are so helpful to share ideas & tips. Good Luck with your treatment and the capping. We’ll all get through this
0 -
Thank you for the warm welcome. I have thick pretty long hair (about down to my nipple), should I cut it shorter before chemo?
What is the most gentle way to put it up or in a pony tail. I am a nurse and need to go in the OR and wear a cap while in there, so my hair needs to go up to do that. I know I need to mess with it as little as possible.
And if I should cut it (so I don't need to put it up etc) what does my hairdresser need to know to do the cut as gently as possible after my first treatment. My daughter is graduating this coming weekend and I'm hoping to not cut it till after that. My first treatment is 2 days later.
I just want to increase my odds as much as possible
0 -
I would say no, don’t cut your hair. I’ve seen many photos of long hair that still looked great throughout chemo with cold-capping. Success during cold-capping is connected to the contact right at the scalp, so ha length shouldn’t matter. And, keeping your length gives you options if you get thin places; more hair to do creative cover-up techniques and move your part, etc.
I got a couple of Snoods. Wore one to bed to avoid shedding on pillowcase. Would work under a scrubs cap. I almost never washed my hair during chemo. Decided that it would perhaps maximize my cold-capping success, so I used scarves a lot to hide slightly flat hair.
0 -
I agree with HikingLady about not cutting your hair. In all the reading & research I did about the cold capping process, everything said do not cut your hair shorter before cold capping.
With the Chemo Cold Caps I have to dampen my roots with a spray bottle. I think that it ensures the roots get really cold.
As far as working in the OR, I would think a loose scrunchie, like one that’s kinda stretched out, could hold your hair loosely enough if you make a loose knot or similar on the back or top of your head. I also have long thick hair & for showering, to keep my hair out of the way I’ll make a loose ponytail, then pull only half of the ‘tail’ back through so that all my hair is off my neck & shoulders.
0 -
i had read not to cut it as well. I will just leave everything alone and see what happens. Thank so so much. Fingers crossed this works for me
0 -
getting nervous about doing this and wonder if I made the right choice. How painful is it? I'm not seeing great results with those going thru AC and getting discouraged before I even start.
0 -
PAINFUL: I found it to be very uncomfortable each time, for exactly 10-15 minutes and no longer. Knowing that ahead of time helped me manage it. The pain was like a brain freeze from eating ice cream really fast. I did the following to manage this: deep breathing like meditation, focusing on a word or counting in my head. Medications can be a solution. Pre-medicate yourself with Ibuprofen or Tylenol. Even maybe one Vicodin. Or, an Ativan. I did take a Vicodin one time, and that was smart; the other times, I forgot, and managed that discomfort time by just mind over matter. It wasn't screaming pain, just felt extremely cold. My brain completely got used to it after about 12 minutes, and I then had zero discomfort the entire rest of each session.
0 -
HikingLady.. Thank you. So it's just the first 15 minutes? Not the first 15 of every cap?
0 -
First 15 minutes of each time/infusion, for me. It was the same each time. Very uncomfortable, but ONLY for first 10-15 minutes, not at all uncomfortable after that initial time period. I didn't have cap-switching, because I was using Paxman. Others who had cap switching can advise you, but I suspect that once the scalp capillaries have gotten used to the chill, the change of caps shouldn't affect your comfort. I'm just guessing, since I didn't do that type.
0 -
Hi, Itook a percocet prior to chemo and the cold didn't bother me much, not sure how much the Percocet helped either, it wasn’t bad. Having chemo tomorrow and hair is now very thin which is good and bad, scalp will get much colder but might be more uncomfortable.
Update: My scalp wasn’t uncomfortable until the end, some spots hurt. I did get cold all over the last hour or so even with a heating pad and long sleeve light weight hoody. Be prepared.
0 -
I’m doing Paxman cold cap. The first 15 minutes are uncomfortable but I try to get my friends to distract me. After that it’s ok. I’ll do round 3 of 12 taxol/herceptin tomorrow. I haven’t noticed any hair loss so far, but have read day 14-28 it starts. I wash my hair after chemo and then on Friday’s. I really don’t do anything else to my hair...sleep with silk case. Trying to be gentle.
0 -
I did do Cap changing, and I agree with hiking lately...after the first 10-15 minutes, it is uncomfortable but not painful.
0 -
With my capping I change caps every 15 minutes for the first 4 Caps, then it’s every 25 minutes. The first four caps are my toughest. It’s really the first 2-3 minutes with each new cap that’s hard. It’s just like you ate a half gallon of ice cram in 2 seconds....not awful, just uncomfortable to me. I close my eyes, breathe slowly & wait for the “freeze” to pass.
I don’t know much about the AC chemo, but I know that everyone’s results can vary. I would say try the cold capping & see what happens.
0 -
AC is rough, there’s a reason they call it the Red Devil. I lost the most hair about 2-3 weeks after my first infusion. I had complications and ended up only doing two rounds and moving on to weekly Taxol. My shedding continues, even 3 weeks PFC, but it is so much less. I went with Penguin specifically because they had the best results with AC.
0 -
Thank you so much for answering. I am actually trying to find out information for my 41 year old daughter. Just found out she will be doing chem and is researching the cap to see if it is a option for her. I also have been fighting breast cancer but just did radiation. Any information would be greatly appreciated. Thank you
0 -
Pull up my posts under my user name
I used Penguin and saved 75-80 percent of my hair.so worth all tbe effort..kaylie
0 -
8929 You might want to look up posts on this thread under my user name, as well- I also had good success. I used the Paxman system, which was in place at my infusion clinic. I think I also saved about the same; enough so that people didn't know I was going through chemo. Good heavens, how awful--you and your daughter are in treatment at the same time---I'm so sorry!!!
0 -
This video was still helpful to us in using the Penguin Cold Caps. It’s a commitment for sure, and the hair care is just as important as the capping process.
I shared a link in another thread that showed my post shampoo shedding. I’m a month out and I think it’s finally starting to level off. I’m trying to go 3 days between shampoos and still doing cold water and no heat styling.
When did y’all get your hair colored? I can’t stand the thought of waiting 5 more months
0 -
Hi everyone, I'm new here and wish I had found this thread earlier! I've read through many of these posts and found them to be very helpful. I am doing 4 rounds of TC, and completed the 3rd round last week. I'm using Paxman since that's what is available at my infusion clinic. So far, I've had a lot of shedding/thinning but others say its not noticeable to them. I seem to shed the most 21-28 days after an infusion. The most noticeable thing (at least for now) are my ever-lenthening grey roots! I've highlighted my brown hair for years and had no idea how very grey I was at the crown. I'm trying to appear somewhat presentable/professional at work even with the very limited hair washing. I am wondering, is it possible to use some kind of root cover-up (like powder, or spray or anything like that) while I'm still getting Chemo? Or how how about after chemo? I realize that I will need to wait several months before actually dying/highlighting it again but wondering if anyone has experience using a temporary root cover up during or after chemo. Thank you! And best of luck to everyone on this "journey".
0 -
The root-coloring spray that is in a small aerosol can worked very well when I tried all these products about 2 years ago while traveling and between hair appointments. I had terrible luck using the paintbrush-powder type--it just didn't stay on. I have no idea whether it's "safe" to do this during chemo, but my logic says Why Not---it's just a topical thing, and I can't imagine that it would have an adverse effect on your treatment.
If I were you, I'd phone up the onco clinic and ask this question of the triage nurse, or message your MO to be sure.
I'm 61 now. I retired at age 60 after 38 years of high school teaching. Went "natural" immediately. Took awhile! I had the whole caramel + gold highlights gorgeous colored look, but I was done spending the time and money on it, and done worrying about grow-out showing, etc. My husband called it the Tyranny of Hair Dyeing. The first thing my stylist did was turn me into a platinum blonde. That was startlingly close to my real silver, so as the platinum grew out, I went "natural." This took 6 months, and right about when I became my new silver color all over, here came chemo into my life. I was distraught! I'd worked so hard to get to this new silver look, and I didn't want to lose my hair.
Here's a photo of me after 2x TC at my daughter's wedding--it thinned a bit more over next 2 treatments, eyebrows fell out 1 month after PFC, but I got clever with eyebrow pencil, and eyeliner kind of hid the fact that eyelashes thinned for awhile. Paxman did a good job for me. My most hated stage was 1 month after chemo when I was down to almost no eyebrows--my face felt erased! Ha ha, pretending here that I feel just great, ha ha, but NOT TRUE, I was at the end of a chemo cycle + a few extra days (MO worked that small extra recovery time in so that I could be at my best for daughter's wedding) and of course was feeling fairly tired and weird, but I was happy, because the wedding was full of joy and love.
2nd photo is 6 months post chemo at a concert I sang in last weekend--full and thick hair for sure, even whiter now, but of course, I've been through a lot in the past year!
Also, now I'm officially invisible. Old Lady Joke---kind of not funny, kind of true, and Oh Well, I am who I am....
0 -
Thank you Hiking Lady. You look amazing! I can only hope Paxman works that well for me. Remains to be seen. That's a good idea to ask the onc/ triage nurse. I will call them. I'm also wondering if a root touch up spray/powder up would interfere with the hair roots that I"m so desperately trying to protect? All the Paxman literature I've read says only use gentle, paraben-free hair products during and at least for a few months after chemo... and I don't know if root touch up products are "gentle" enough on the hair roots.
0 -
I too am using Paxman. I purchased a touch up pen that I lightly comb on basically for root touch ups. I have a few events that I need to prepare for and I am getting grey quick. I am on rd 4/12 Taxol treatments. So far, I haven't noticed much shedding at all. I wash twice a week. Once after chemo then again on Friday or Saturday. I rarely comb my hair...it's shoulder length. I have 8 more to go so not sure how the hair will hold up til the end, but I will continue to post updates as I know this is new for folks and we all need help in educating ourselves.
0 -
HikingLady...you’re gorgeous! Thank you for talking about how hard the eyebrows are one month PFC. I was NOT prepared for that and ended up getting microblading done last week. Being an ER nurse, there was just too many ways that my makeup smeared off and the thought of drawing them on every day was too much.
Today was the first tepid water wash for my hair since December! Anyone else would probably freeze, but it felt glorious to me!
0 -
HikingLady: you look beautiful! I really like your natural color hair. Speaking of eyebrows, mine have thinned by about half, I noticed after round 3, I just finished round 4 and I swore I wasn't gonna draw my eyebrows on! I'm 46 & still working full-time with occasional time off to recuperate from the severe fatigue I get from chemo. I think I may have to get an eyebrow pencil & practice while I still have some eyebrows to guide me. On a more positive note, the hair on my head is doing great, I have a small thin spot on my crown but with hair just past my shoulders I'm getting creative in rearranging my part.
Angie
0 -
Hi, I wanted to update how my hair journey has gone PFC 6 weeks, and also to make a note on insurance & cold capping.
I had 12 rds of Taxol+Herceptin (and now will have 9 more mos of H to go) and did Penguin cold caps. It worked great! I probably have 70-80% of my long hair, and while it’s thinner (and I now know how much grey I actually have!) it is not at all noticeable to anyone else. I am still sticking with limited washing, cold water, and no heat styling or products. PFC shedding has noticeably declined in the past week or 2 (it was scary in the 2 weeks immediately PFC, if only psychologically!).
Eyebrows and eyelashes really took the hit PFC as well not during, but now at 6 weeks are coming back. I had done microblading for brows and that’s been a win! Sadly the few “benefits” - legs, underarms, bikini - are coming back too - no gain without a cost I guess! 😎
Most importantly we are all so aware how cold capping is a commitment of money that is often hard at the same time as other treatment challenges are ongoing. I’m pleased to report that my insurance covered cold capping!! After the FDA approvals, Aetna (my insurer via work) had come out with a statement recognizing the benefits re alopecia and capping.
I put their statement to the test - and with very little extra work on my part, they covered the cost of the caps. To be fair my employer does have great benefits and our health insurance is one of them, but I still expected a challenge. It’s great news and an upside surprise to fin they will cover it as I was doing it anyway but wanted to push to make this covered as the norm (like it is in Europe).
Do the research on your insurers, find out if they have made any statements on it, and try. It will only become the norm if we all make it happen! If I get more info on how it was processed / codes used etc and it’s helpful, I’m happy to post it if people are interested.
Best of luck to those starting the journey - this thread and this site continues to help me on mine better than any resource ex my great doctors.
0 -
boogirl, awesome news on the insurance coverage!
0 -
Hi everyone -
I just finished my 6th (and hopefully final) round of treatment which consisted of taxol, avastin, and carboplatin. I've been using Penguin caps and wish I had known about this forum earlier! I've kept about 45% of my hair but the majority of hair loss came from high fevers, surgery complications, and being under anesthesia. For the most part, the caps worked really well for me and I have limited bald spots, however my hair has thinned significantly and now that I'm done with treatment I'm wondering what is the best way to make the most of what I have left...I am eager but nervous to restart old hair care routines. Even things as simple as tying up my hair in a towel after a shower (which I was told not to do).
How long have others waited to use heat to style their hair? How about coloring/dying or wearing hats? Any re-growth or styling products that you've loved? I have a friend's wedding coming up in a few weeks and it's the first time I've seen a large group of people since my diagnosis 6 months ago. Any creative solutions you've found for styling during more dressy events is greatly appreciated.
Thanks for your help and establishing the wonderful community here!
0 -
Congrats, Maya, on being done with chemo!
I used Penguin as well and kept between 75-80% of my hair. I followed the haircare guide through 2 bi-weekly rounds of AC and 12 weekly rounds of Taxol. I've had multiple surgeries and complications as well and finished chemo on April 11. I washed two days before and 4 days after with cold water and only used low heat to blow dry my bangs. I've always slept on a silk/satin pillow. I had to mix up my hair care products, as it was hard to strike a balance between moisturizering my curls and too heavy product.
I was blessed to have a hair dresser see me through, and even though I had most of my hair, without my moisturizering treatments and all the things a Curly Girl has to do to, it did not look like my hair usually does. At the two month mark, he felt my hair was ready for a gentle color wash. I know Penguin gives a 3-6 month timeline. I would suggest going to a stylist you trust who can look at your hair and assess its health and strength. Let them know what you've been doing and the haircare guidelines. You could also book an appointment and have them style your hair for the wedding. You deserve a treat anyway for what you've been through!
I'm slowly getting back to my usual routine, and have advanced to tepid water washes. After 16 weeks of cold water, I'm finding I like a cooler shower anyway...theTaxol hot flashes probably have a lot to do with that.
Good luck and post an update with pics of your styled 'do!
Edited: Took some pics today. June 11,2019 will be two months PFC. My worst pics are in another thread but can be found in my thread list.
0 -
Hi maya, and welcome to our community. Congratulations for getting through your chemotherapy, and terrific that the cold caps were effective!
According to our page here cold caps), no coloring until 3 months after chemotherapy is done.Indeed, find a good stylist who can help! Looking forward to other great tips from people!
0
