Cold Caps Users Past and Present, to Save Hair
Comments
-
I’m having a moment (hour, day?) of anxiety. I just completed my 2nd treatment (4 total) of Taxotere and Cytoxan. Day 23 to be exact; and even though I’m using the Penguin cold caps, my hair is shedding like crazy! I have really thick hair, but would estimate I’ve lost about 40% so far and I have 2 more treatments. Any advice, experience, and encouragement would be welcome! Thank you so much
0 -
hi to you-I also used Penguin thru 4 tc txs and saved 80% thru the infusions and continued to shed for 5 more months losing other 5% or so, so ended up with 75% left- no one could tell at all and made my emotional well being much stronger .
thinking back -I think what helped was my partner- my daughter who championed me not to quit when I reach the 6/7 hours of capping--the caps have to be really ,really tight against your head-especially the crown-i would always use the straps and pushed down on the crown part to maintain ongoing contact with my crown- I didnt realize how much I lost along my side hairlines and over ears till it started growing back but never had any bald spots anywhere -lost my eyelashes but not my eyebrows
everyone has different results-remember-without the caps you well might be bald at this point-so do persist in the remaining 2 infusions--dont giv up!!! continuing will also help the lost hair start to regrow sooner..you will get thru this- you will--you are halfway there--hang in there -you will be so glad you did--hugs,Kaylie{Candace}
0 -
SarahSmiles - I used cold caps with 4 rounds of TC. I’m chiming in to say that my hair was thin to begin with and I lost way more than half before it was all done. At the exact same point where you are currently, I experienced a ton of shedding and wondered if it was worth cold capping anymore. I continued though.
After the 3rd and 4th rounds I shed more but not the great quantity of the 2nd round. The surprise was that I continued to shed a little bit a couple months after the 4th round.
But the important thing was that I still had hair all over my head (very thin though). It started to regrow before the shedding was done. I had a good head of hair within 3 months PFC which continued to improve each month.
Wishing you the best
0 -
SarahSmilesatMe I'm chiming in with more support. EXACTLY like you and these other experiences above my post, I also thought WHAT'S THE POINT when a lot of shedding happened after #2. Yes, keep everything super tight---I used plenty of conditioner next to my scalp to make the contact of the cold cap really good, and I slicked down my hair.
Losing a lot of hair is still not being bald. People couldn't tell that I had thin hair. I babied my hair completely---I hardly ever washed it (1 time, 3 days after treatment, to wash out any excreted chemo residue), and otherwise, just completely treated it gently. I wore a snood in bed, and used a hair band or scarf a lot to style so the slightly-greasy-not-washed hair didn't look so weird, and just made that my look during those months.
There's a super small percentage of people who never re-grow their hair after TC---I think it's Taxotere that's to blame. That's why I persevered, thinking that whatever hair I could keep, I'd be ahead in case that were to happen. My hair DID regrow, just fine, when I was all done with chemo. As thick as ever.
My eyelashes and eyebrows did fall out, a few weeks after final, #4 treatment. For about a month, I needed to use an eyebrow pencil to fill in. 2 months after chemo ended, new hair was growing everywhere on my head. Eyebrows and eyelashes were normal looking in 2 months, and pretty good about 4-6 weeks after they shed.
I'm a year past that now, and sending you tons of support and warm wishes. Hang in there.
0 -
sarahsmilesatme:
I used Chemo Cold Caps during my 6 rounds of TCHP chemo. I started out with a head full of long, thick hair. My heaviest shedding was after round 2 as well. I shed a LOT! It’s hard to not focus on the hair you’re losing, but, if you think about how much hair you still have on your head! Even though I shed a lot, only I could tell. I ended up with a thin spot on my crown b/c on that first chemo I don’t think I got the caps tight enough. I started applying steady pressure on my crown for each new cap—because they were so frozen I couldn’t get them tight enough to my scalp.
You will keep your hair. A majority of it. Focus on the hair still on your head. You can do this! You’re halfway there!!! Hang in there.....
Angie
0 -
Thanks for the encouragement.... i needed it! I feel I’m vested in capping now, so I guess I’ll push on with the Penguin caps! This is probably one of those ridiculous questions, but would a couple of you chime in with suggestions for how you washed your hair. I read to avoid shower head sprays and consider washing it in the sink. Did you just use a slow drip from the faucet, fill a cup with water and pour over it, etc? Thanks again for your tips and tricks!
0 -
I am using Penguin also. I was told to first dilute my shampoo with water and pour it over my head. I do this in the shower and then I use pitchers of water and use them to rinse out the shampoo.(I don't let my head go under the shower head) When the shampoo is rinsed out I put conditioner on the bottom part of my hair and rinse with the pitchers of water. I just did my 5/12 of weekly Taxol treatments and have barely shed any hair.
0 -
sarah--when you contact Penguin- ask for the previously used caps-they are fine -have been cleaned and sanitized and cost 300/month as oppose to 500/month-the front office will not offer this up- you have to ask----when the system comes it is overwhelming at first to try and grasp the process-take it a step at a time and reread and reread--once you do it once it will become routine you will be ok with--
also is a help to write out the schedule for your premeds and the timing for when to start the capping before the chemo starts and for each cap change--usually every 25 minutes. You must have a partner as changing the caps cannot be done without help . also using pelleted ice is much easier than slab ice--start checking around for suppliers-some give a discount for those in treatment.
get a digital thermometer u point at the cap and get an instant reading-try not to put on a cap colder than necessary-I did that the first time and got frostbite on top of my head--lots of help for you from those here as you start your journey--hugs
0 -
I used DigniCap for 4 rounds of TC. I was fortunate to start off with tons of hair...I've been told that I have 3 times the amount of hair of the average person. I shed throughout my chemo....I'd say at the final chemo I had lost about 40-50% of my hair. The problem now is that I'm 8 weeks post final chemo and I'm still shedding quite a bit especially when I wash my hair once a week. I'm still being gentle with my hair as I was during cold capping. Not sure when the shedding will stop....I can't afford to lose much more hair. It thinned evenly ...I have no bald patches. But I really didn't think it would keep falling out this far after the final dose. Now it also looks like my eyelashes are falling out but eyebrows are sprouting little hairs.
0 -
morning--I also had 4 rounds tc ,but used Penguin--kept 80% thru chemo and lost another 5% from onoing shedding over the ensuing 5 months before finally stopping-was not expecting to shed for so long--but remember-you are shedding out old hairs which we do normally -just not as much as post chemo---but--new hairs are growing back in even as the old are falling out, so take heart--is all part of this journey--you are on the upswing now--congrats on that-am 2 years post and my hair has been back to normal for well over a year now-yours will too--K
0 -
Morning to all..I still have the laser digital infrared thermometer I used to track the temperature of the Penguin Caps I used thru 4 rounds of chemo-very important to have caps in correct range--I have no further use of it and would like to send to one of you who could use it- it runs on a 9 volt battery which I would include . I live in Vermont-If anyone would like it- do private message me with your name and address and I will sent it out---thanks,Kaylie-Candace
0 -
Hi everyone,
I thought, despite what I've been told, that I would be able to save my hair cold capping while going through dd AC/T. I know, I know. It doesn't work well. BUT, I've seen a few people have great success! Why not me?
My center uses the Dignicap Deltawhich is supposed to be better than the older version. Well, I'm on day 25 and the past 4 days I probably shed about 50-65% of my long, dark thick hair. I can't stop crying. I look in the mirror and I don't recognize myself. I see some really bad snapchat filter. I've always been known for my hair. It's been my thing, my security blanket, my biggest source of self-confidence and now it is just being gripped in my hands as I sob. So, my questions are:
- Is it normal to shed THIS much day 21-25?
- Can I expect it to taper off? I had thick hair so I presume that there was a lot of insulation and my scalp wasn't getting cold enough.
- Or, do I give up and stop torturing myself?
Help!
xx0 -
@vmb,
I was you in June and July 2018. 56, thick, long auburn hair, never dyed. I also used the DigniCap system. By the time I finished all chemo in October, I’d lost probably 80% of my hair. I stuck with cold capping throughout and I can honestly say that I’m so glad I did! You can look back on this thread and see the collage of my photos to see how bad it was. But, I believe cold capping really helped protect my hair follicles so that when everything started growing back in, which was while I was still receiving Taxol, my hair was real hair, not the fluffy bird feather hair that often first comes in. I did start wearing my hair in very loose braids the last 1.5 - 2 months. I had a bad habit of running my hands through my hair to remove the stragglers that were driving me crazy, and I think the braids helped. I shed throughout, but the heaviest started about day 21 and that lasted for a couple of weeks.
My daughter got married this past June. The wedding was one of my main motivations for cold capping. So 8 months PFC in this photo and I’ve already cut my hair twice. It’s healthy and growing well!
Only you can decide if you want to continue to cold cap. For me, it wasn’t pleasant but I would do it again because I think it was worth it.
Feel free to reach out if you have questions. Good luck with whatever you decide!
Kim
0 -
Thank you so much for your reply Kim. You are just beautiful.
Did you have a significant amount of shedding after the second round as well? I'm guessing I've already lost 60% and while the matting has tamed down a bit, every time I touch it, more and more hair comes out.
How often do you brush it? How did you wear your hair during treatment? I currently have it in two braids.
Thank you again! xx
0 -
@vmb,
You're welcome! I would say that I never had another "huge" shed like the first starting at day 21. But I did shed consistently throughout. I never used a brush, only a wide tooth comb and only once a day, usually in the morning. I think wearing the braids helped a lot, especially with the matting, and wish I had started much earlier. I wore the braids 24/7 except on infusion days. I'd unbraid, wet down my scalp for treatment. Then I'd let it dry after treatment and then rebraid. One other thing that I think helped was sleeping with a satin pillow case.
I have a friend who also did the same AC+T treatment who has hair down to her waist, long and blond. She did DigniCap and lost only about 20%. She was a real success! My sister is a hair dresser and said that the hair matrix for different color hair is very different and that may affect why some are very successful and others not so much.
For photo evidence, here's the collage. June 17 was day 18, just before the big shed. Sept 16 was the week after Taxol #8. You can see in the Oct 20 photo I already had some regrowth showing, that was just before my last Tx. I chose to cut off the length on Dec 13 because the regrowth was looking really weird with the long hair left.
Good luck with the rest of your treatment! I'm not on the boards daily anymore, but try to check in at least once a week.
Kim
0 -
I used Penguin for 4 rounds of TC, and I kept most of my hair. It is thinner up front and I got some bald areas near both temples, but it isn't obvious if you don't know me.
I started with thick, long hair. I got it cut short and thinned after my first round. I felt like I could get it colder with shorter hair.
I shed a lot, but I look pretty good. I'm a little over a month out, and a stranger complimented me on my hair style over the weekend, so it can't look too weird.
0 -
kdrake...your hair looks fabulous at your daughters wedding. Better than ever! The shorter tousled look is very becoming on you. Thanks for sharing your experience as it gives us all hope.💕0
-
Has anyone used a cold cap while on CMF? I was told that i would thin but not loose all my hair, but my hair is already thin. So i decided to go with the cold cap hoping i will shed less. I have been searching for experience with CMF and cold cap but no luck so far.
Thanks
0 -
Ihatethis2019, I don't think that there is a simple answer to the question "How well does cold capping work with CMF (or any other chemo regimen)?" You may have a better experience, or a worse experience, than another person who is on the same chemo regimen, just because one person may be more, or less, sensitive to a particular chemo than a second person receiving exactly the same chemo. And, for that matter, one person may have a better or worse experience with cold capping than another because the fit of the cold cap is better or worse. In other words, there are a lot of factors to consider. I used the Dignicap system while on Taxol and Carboplatin, and I kept enough of my hair so that even at the point of maximum loss I was able to arrange my hair so that I could go out in public without worrying about whether my hair loss was noticeable. And like you, I had thin hair to start with. Many cold cappers report good experiences, and I think that most are happy they did it. I hope that your experience will be a good one too. Good luck!
0 -
Not sure whether it has been said already - take painkillers about an hour before starting. It helps a lot with discomfort of the first 10 minutes. As well new paxman caps are better fit than the old ones - I never managed to have good fit on the crown of my head with old ones.
With new it is better if you put on the cooling part of the cap first , then turn the elastic part inside out and slide it over your head and other part from that position.
Hope it will be helpful to someone one day ..
0 -
I am receiving 4 treatments of TC and I have been using the Paxman cold cap. I lost about 30% of my hair 17-20 days after my first treatment. I had my 2nd treatment 8 days ago. I’ve had shedding, but nothing like the past loss. I’m wondering if I should expect another big loss or just the shedding from here on out? I do have a very thin area on the back of my head. I’m thinking the cap doesn’t fit well there. My hair is longer so it can be covered if the wind doesn’t blow. 😳
0 -
I had only one big loss. Mine came a lot from matting- had to basically pull the matts out. Not careful enough I guess with how I kept the hair ( in a scrunched bun- probably would have better used plaits) and washed it - the big loss came after it got all tangled during the wash one day. Once I lost like 70% of it it stopped tangling because there is so little of it ! 😡😁. I noticed I have a re-growth now ( 3 months into abraxane). It is good to have but it is completely white 😱 so I spray it with a colour spray otherwise it looks like I am bald since it gets list on the background if my scalp.
0 -
Hi Anotherone,
I also had matting during my biggest lose. It was like my hair that was falling out got stuck in my other hair. I hope I only have one big loss like you did. My 3rd Chemo round is on January 3rd. Fingers crossed 🤞. I was actually thinking about spraying my bald spot on the back of my head. Hope you have a great day
0 -
yes I think it is usual to have one big loss. Spray on one hand and rearrange the hair on another ? Would been good to have a plan B with some hair pieces that people use to cover the bald areas but I am so busy ( maintaining household with a 15 yo and 90 yo as well as doing a lot of research and complementary treatments and working) that I could not be bothered with arranging it and just hope to wing it.
0 -
Hello Fellow Cappers ! Hope all have had a wonderful and restful holiday. Friends in this forum provided encouragement earlier in my capping and chemo experience, and I’m thankful. Once again, I’m hoping to gain some perspective from others. I finished my 4th treatment of Taxotere and Cytoxan on Dec 4th. I used the Penguin cold caps during my treatment. About a week ago, my scalp began itching and I had a marked increase in shedding (even some small clumps of hair began falling out). My hair is continuing to shed - more than during my 2nd, 3rd, and immediately after my 4th and final treatment. (FYI - I’ve probably lost 50-60% of my hair to-date).
Have others experienced an itchy scalp and increased shedding post treatment? Any recommendations ? Thanks so much everyone for sharing!
0 -
SarahSmilesatMe yes, the same thing happened to me. It eventually stopped falling out. Somewhere around 6-10 weeks later, new hair was coming in. Sorry about this---I remember feeling discouraged at this point, and I send you warm wishes of support. Hang in there, and your hair will recover.
0 -
Hello all, hope today is a good day for you! I used cold caps three years ago and need some advice from knowledgeable cappers. My cold cap experience wasn't the best as I went to my chemo treatments by myself (husband is the only source of income) and it was very difficult.. On one occasion I lost a significant amount of hair while taking off the caps from my crown area (over 70%) most likely due to cap being too cold. My hair did return to normal but scalp was sensitive. I also had my ovaries removed and this most likely has taken a toll on my hair as well. My question is: is anyone experiencing hair loss in areas that got too cold from the caps? I'm losing hair along my temples and crown area and are in desperate need of help. I showed my Dermatologist and she didn't see any problems. I have a bald spot growing and now have to change my part so I don't know what she is talking about! MY scalp is starting to show and if I don't do anything now I won't have much left.
Is anyone using something that helps the hair follicles from dying? My scalp is also numb, sensitive and feels really dry.
Any suggestions? Thank you!
0 -
Meow, biotin is supposed to help stop hair from falling out. I’ve been using it for years; don’t know if it does anything, but you could try it. I take 5,000 mcg per day. I’m older and 10 years past menopause and my hair is thinning, but not visible to anyone but me
0 -
Meow, I lost hair at my temples most of all. We weren't sure if it was a colder area, or an area that wasn't as cold. We assumed that the areas were not as cold, at least it seemed that we may not have covered it as well.
I'm 2.5 months out from chemo, and the bald spots have grown back.
I'm sorry I don't have any suggestions other than what I've read about Minoxodil.
0 -
Hello all and sorry if this finds you here in 2020 researching this topic.
I did cold cap thru chemo (AGAIN) for recurrence...4 rounds of taxoterrible and while the caps were elastogel cheapees and husband did not get enough dry ice first round =( ...I lost 80%+ but it came back! I think would have kept much more if we'd done it right or if the Cleve Clinic would have had the Pacmans 4 yrs ago ( they do now so hauling all the coolers is a non issue). Get some pain killers if your Onc will prescribe them even just for the day...(opiod over regulation is a bitch when you are going thru cancer! ) and cap away. Cool those feet and hands too. Never had neuropathy in hands but did in feet. 2 yrs of exercise and its 90 % gone in my feet 4 yrs later. You don't want to...but you CAN do this. Hugs and sunshine from the other side. 0
