Cold Caps Users Past and Present, to Save Hair
Comments
-
I am going to start 4 rounds of TC in September and would like to know others experience with Penguin cold caps.
Also what products did you use on your hair and would you cold cap again? i have been trying to get into the Cold Cappers Facebook page so far with no luck. I am not sure if anyone is monitoring it.
Thanks in advance for your input.
0 -
Hi Pabl48, I used a different cold cap company, Wish Caps, when I did 4 rounds of TC. I think Penguin is a popular choice and many people have had good results. My hair was thin to begin with so I struggled with not being able to wash it frequently so it looked dirty. Since I worked in an office and didn't take much time off, I worried about my appearance. I tried to use corn starch (rather than dry shampoo) to make my hair look better, BUT the corn starch built up on my scalp and was difficult to remove which took some of my hair off with it. So my most important advice is not to put cornstarch on your hair!
Anyway, it was a difficult time, but now my hair is back to pre-chemo condition. If you have thick hair, I think you will have an easier time with less bald-ish spots and dealing with less washing.
I used Acure (I think) shampoo which doesn't have any bad ingredients and rinses out easier. Avalon Organic shampoo is another good option that I still use. Topix is a bald spot cover up which you may never need or at least you won't until the end.
Take care, and wishing you the best!
0 -
Hi pabl48- I've been helping women with the cold caps since 2009, and now I'm using them for my chemo treatment! I have experience with both Penguin and Elastogel caps. I'm heading out the door now for another chemo, I will write more later. you can check out my website for now. It has some info. about the differences in caps https://penguincoldcap.wixsite.com/help/cap-manufacturers
What area do you live? I'm looking to share my caps to reduce expenses.0 -
I used Chemo Cold Cap in 2016. When I contacted DigniCaps, I found out that they were not in use where I lived, and they suggest Chemo Cold Caps. (Chemo Cold Caps started DigniCaps). Fit is really important. I have a large head. When I contacted ChemoColdCaps with my concerns and showed them pictures of me wearing one, they rushed the largest ones they could find to me, they arrived before chemo started. Since they were hand made, there was some slight variation in size. I lost maybe 50-60% of my hair and was very disappointed. My surgeon and oncologist were very impressed with how much I still had. I was their first patient who had tried this and told me I would have been completely bald if I had not used them. When my oncologist moved to a different clinic she got them to have cold capping as an option. It wasn't DigniCap, can't remember the name. I think most people have better success than I did. One change I would suggest is the use of panti-liners to protect the ears. A friend suggested using the same type of foam provided for protecting the forhead. She rushed to a Walmart and got some craft foam. We used a panti-liner as a template and designed foam versions. Also check out Tiffany's tips for getting through chemo. Her post is where I found out about Cold Capping. https://community.breastcancer.org/forum/69/topics/839070?page=3#post_5461076
0 -
Hello!
I'm new, so apologies if this topic has been covered. I used Penguin Cold Caps for 12 weekly rounds of Taxol and Herceptin. I had a little bit of shedding through treatment, and it increased as treatment progressed, but it seemed like I was having great success. However, now I'm 4 weeks post treatment, and each week since my last infusion I have had more and more shedding, with significant loss. I didn't lose my body hair until the very end of treatment either, and at this point I still don't see any regrowth yet anywhere. Has anyone else had this experience?
Thank you!
0 -
I did Dignicap on TCHP (6 cycles every 3 weeks). I had my biggest loss between cycle 2-4, it slowed up between 5-6 and then I started losing again for a few weeks after I ended treatment in May. This may have been due to lack of nutrients/oils in my hair. I started using a leave-in conditioner and, that helped a lot.
I would say it took 2-3 months before shedding returned to normal (pre-chemo) levels, my hair started growing in about 2 months. I'm almost 4 months PFC and, my hair is growing like crazy.
I also started taking biotin in June, which may have helped.0 -
Pabl48- I used Penguin and I'd use it again. I did 4 rounds of TC and kept 80ish% of my hair.
My friend did a bunch of rounds of the ones for HER2+ (4 drugs, 1 was Taxol) and you absolutely can't tell she had chemo. She used Penguin and had to self administer them (!) because of COVID. Amazing!
Both if us were told we'd lose all of our hair by the nurses, and they were wrong!
0 -
Hello Rivergirl50 ! I used Penguin caps during 4 rounds of TC. I had really thick hair, and at my last infusion in early December, I had lost maybe 60%. Looking back at pictures of me on Christmas, I still had a lot of hair! However, about 5 weeks post my infusion, around the New Year, my hair started shedding and coming out like crazy! It continued to shed from New Years until Valentine’s Day, probably shedding another 20-25% or so on top of the 60% already lost. I contacted multiple people - Penguin, folks who provide capping assistance. & my dermatologist - and received lots of good advice. I finally decided the post-chemo shedding was caused by not washing my hair frequently or thoroughly, and simply, stress. (I had a fever each time I had chemo, and kept a fever the entire month of December. For others who may read that statement, my doctors were aware and my counts were good ). Even with continued hair loss, I still kept a full head of hair - just a lot thinner. It’snow 6 months since I stopped shedding, and 8 months since my last chemo, and my hair is growing and thickening up nicely. I would cold cap again - I wanted to mitigate any risk of permanent hair loss, and for that reason, I feel my capping was successful.
0 -
Thank you for your responses! I'm so glad so many have been successful and happy with their experiences. I had hoped that by cold capping I could avoid the stress of the trauma of hair loss, but I have stressed way too much over the gradual hair loss, so I sometimes wonder if it was worth it. This delayed shedding is particularly disconcerting to me, leaving me always wondering, how much more is going to go.
0 -
Rivergirl, today I am 11 weeks out from chemo and have just recently started to feel like the shedding has officially slowed. I'm not sure if I see any new growth or not. I didn't have any one concentrated area of hair loss. It was more just an overall thinning, so whatever growth might be happening, doesn't really stand out and my hair still seems very thin. I have been using Toppik hair fibers to disguise my scalp when I'm at work, but try to leave my scalp clean on the weekends. Though I'm glad that I cold capped, and consider it a success, I MANY times wondered if my preoccupation with the uncertainty of how much hair I would lose was worth it. Only now, looking back, do I feel convinced that it was.
Sarahsmiles, it's interesting that you mention the post-chemo shedding possibly being related to not washing the hair frequently or thoroughly enough. I have been suspecting that too. Just this past week I got up the courage to wash it every 3 days and scrub a little more thoroughly. Those every-3-day washes seem to result in a lot less hair lost per wash (and cumulatively per week), as well as a lot less shedding in between. But then again, it's been 11 weeks so maybe it was planning to slow down anyhow. The amount of hair that was coming out with each wash was pretty stressful, so I couldn't help being scared to do it more often.
0 -
rivergirl....I totally agree! The slow shed for me was over a period of 6 months. Washing my hair during those 6 months was a traumatic event requiring Xanax. Every day was stressful with the constant shedding day and night. I look at my friends who didn't cold cap ...their hair all fell out all at once and that was it. Done. They dealt with cover ups. I feel like I had slow torture. Now I'm dealing with 2 lengths of hair...my old hair and the new hair which is approximately 5-6" long.... I'm grateful for everything but there are definitely some down sides to cold capping.
0 -
I just finished 6 rounds of Taxotere and Carboplatin and used the Penguin Cold Cap. This is my second time with TNBC, fifteen years ago I was treated with TAC but had my lifetime amount of Adriamycin back then. I did lose all my hair 15 years ago and my hairdresser (who has been in the business 35+ years) has had dozens of clients whose hair always comes back. Not mine, 15 years ago I had extremely thick hair (10 on a 1 to 10 scale), after chemo I'm a 1 or 2. My hairdresser was shocked and never had a client whose hair didn't come back. With my new diagnosis in April of 2020 I discovered on these message boards (thank God for all the info you can learn here) that Taxotere can sometimes cause permanent hair loss. The light bulb went off, I had partial permanent hair loss 15 years ago. Although being bald for 6 months or so 15 years ago wasn't fun I knew I could manage it. But since I already had partial permanent hair loss from Taxotere 15 years ago I couldn't face the idea of being completely bald for life (in doing research it's totally true for a small percentage of women). So I ended up going with Penguin Cold caps. So happy I did. My hair was thin to start with and it's thinner now but I still have hair. My chemo center doesn't allow anyone to accompany patients during chemo because of Covid but they made an exception for my husband to do the cold cap for me. We came up with a checklist of what to take with us to the chemo room that was a lifesaver because the 1st time we took way too much stuff. I'm actually going to talk to the breast cancer coordinator at my center and tell them they need to let women know about cold-capping. Had I not been on these boards I would never have known. It's not cheap or painless but to prevent permanent hair loss most women would try anything, me included! I'm hoping to advocate for knowledge for others in the future and will offer to be a contact person for questions.
Funny thing is that before I read about the need for cold caps I had resigned myself that I was going to be bald and this time I was going to have fun going bald. I'm a 5'6" blond and ever since my hubby of 32 years and I met he always said his ideal woman was a 6'5" redhead. So one day before chemo (and after a BMX) when I was sad I decided to color my hair. My daughter did it for me and I found a stool to stand on so when he walked in I was a 6'5" redhead. He loved it and I thought I'd be shaving it off within a week. A few days later (5 days before starting chemo) I discovered cold caps but now I have red hair instead of blond. Then I find out from the hair care instructions with Penguin that you can't color treat your hair for 6 months after chemo stops. My hair actually grew some during chemo (shocking!), so now I'm a faded out semi-redhead with dishwater blond roots and will be for the next 6 months, lol! This is a little easier since Covid and not going anywhere! Oh well, I have some hair!
0 -
Laurie, thanks for telling your story. I discovered cold caps accidentally back in 2012–a friend’s sister had seen something on TV about saving hair With “ice caps” during chemo. My facility even had the medical freezer for cold caps, but my oncologist was not on board. He was ok with me using them but he didn’t volunteer any information to his patients. Anyway, I used Penguin caps very successfully, and had a lovely skunk appearance (dark brown hair with white roots) until I was able to color. I did not wait the full suggested time—I think it was only a couple months after finishing chemo that I colored my hair, with no ill effects.
0 -
I had my first infusion of TC 2 weeks ago and used the Paxman cold cap. On day 11/12 I starting losing my hair. In just a couple days I’ve lost about 50%. I am feeling really discouraged and am wondering if it’s worth it to continue. Because of my head shape, the cold cap was excruciating and left my forehead bruised and swollen. I am going to cut my hair with clippers tonight, but am still willing to try the cap if it might help prevent permanent hair loss (as I think it’s safe to say I have lost the hair maintenance battle at this point). Any feedback would be really appreciated.
0 -
Sarabeara - cutting or even trimming your hair isn’t recommended at this point. Also, the shedding after the first round is supposed to be the biggest. I, too was discouraged with cold capping, and my results weren’t very good at all. However, my hair started regrowing a couple months after chemo was all done. So I think cold capping helped with regrowth starting sooner after chemo.
0 -
Sarabeara - I used the Penguin cold cap, so sorry, I cant speak to the issues you’re having with the Paxman cap. Before starting TC, I had really, really thick hair. I lost 60% or so during chemo, and another 20-25% post chemo. I attribute my hair loss to my thick hair, not washing my hair enough post chemo, and a near constant fever (apparently, my body’s reaction to the drugs). Even losing so much hair, I’m glad I continued with the Penguin cold cap. (I received encouragement from folks on this board to continue!). I felt it was my way to try to avoid permanent hair loss, and I was lucky to finish chemo in December (before Covid). My hair stopped shedding approx 7 months ago, and it is growing and filling in. I have no regrets with capping, even with an overall hair loss of approx 80%. I still had hair during and after treatment, and most importantly for me, it’s growing back nicely.
0 -
Hello! New here as well. I am supposed to start chemo (Taxol and Herceptin and something else). I was recommended cold capping- but I already have fine thin hair. One reason I am strongly considering is that I have a 4yr old son and I think he's going to be most upset to see me bald (and I am not sure I am ready for that either). I've read through the past few pages/ seems that Penguin caps are the most popular? Any other words of advice or wisdom? Thanks!
0 -
ask your place of they allow care givers/companions during covid to help with the caps.
0 -
I think how successful the cold cap is may be dependent on what chemo you're getting. I had TAC 15 years ago and lost all my hair within 2 weeks. My purpose for doing the cold cap this time was to prevent permanent hair loss as I had partial permanent hair loss from 15 years ago. I finished chemo on Sept 16th and I still have hair. It's even thinner now than when I started but it's hair. I have no regrets for having done the cold cap.
Eucalyptia - When I lost my hair 15 years ago I had a 9 year old daughter and 10 year old son. My son told me he didn't want to look at me bald and would I please wear my wig. I live in San Diego and it was one of the hottest months of the year. Within 15 minutes of wearing it I was dripping sweat so I took it off and told him I wouldn't wear it in the house and if he didn't want to look at me it was okay. Within 10 minutes he could care less. Your 4 year old will adjust and take cues from you. Regarding your concern about seeing yourself, I will admit it was really difficult at first and I never let anyone see me bald but within a few weeks I got used to it and eventually would go out in public bald because I just didn't care. I have really fine thin hair and the Penguin cold cap did work for me, but again I think it depends on what kind of chemo you're getting. Was it the doctor who recommended you do cold cap?If you decide not to do cold capping I would recommend that you go wig shopping before you lose your hair and actually wear it out in public before you need to. I used to have very thick hair and had to have it cut to wear it under the wig. I felt like everyone was looking at me because they knew I had a wig on (no one noticed) so it felt good to get over that while I still had hair. Good luck with whatever decision you make. Hang in there!
Laurie
0 -
Eucalyptia- 3rd drug is probably Cytoxan, or another target drug for testing HER2+. The only drug that I'm aware of that has a 50% success rate of retaining hair is Adriamycin, though I've seen a woman who had all her hair after doing 4 treatments of that followed by Taxol. Those with thinner hair seem to fair better at keeping more hair than those with thicker hair. The thicker hair can insulate the scalp, causing the cold to be less effective. Penguin is still the most effective cold cap available. After my first chemo all others that followed seemed way easier. I always take 400mg ibuprofen to take the edge off. It helps immensely!
Also be sure to do what morrigan_2575 said. I am allowed at my clinic. In fact I wouldn't be doing chemo if I weren't, but that's just me.
I've been a cold cap helper for years and a few of the Dr's weren't willing to accommodate the women who wanted to do cold caps. They ended up switching Dr's. Those Dr's have since had a change of heart.
0 -
Hello - newbie here. I start chemo November 4 - taxotere and cytoxan. I just turned 60 and still work fulltime for a professional service firm - HR healthcare consulting. I used to travel several times throughout the years and do presentations to groups of hospitals. However with COVID no traveling in the near future so that made it a bit better.
If I want to cold cap, which I had thought I would, I have to go to the other chemo place which is 35 minutes away instead of 20 minutes. Also I have to get there 1 hour early and stay an extra hour. They use Digni caps. My hair is kind of thin anyhow but it would be nice to not lose it all.
They told me that I probably would need to wear something when I went out after chemo even if I cold capped since it will be thin and patchy and not look great.
Thoughts?
0 -
marie914,
I'm not familiar with Digni caps because my center didn't have them so I used Penguin. Taxotere can cause permanent hair loss which is why I did the cold caps. I didn't care if I was bald for 6 months but didn't want to potentially be bald for life. I had taxotere 15 years ago (along with Adriamycin & Cytoxan) and definitely had partial permanent hair loss because when my hair grew back in it was much much thinner than before and never recovered. I finished my treatment this second time around on Sept 16th and although my hair is thinner still I do have hair! Good luck in whatever you decide.
Laurie
0 -
if you are getting Taxotere you need to sit for 90-120 minutes after Chemo not 60.
I did DigniCap because it was easier for me. I didn't need a helper or to pay for white gloves service or dry ice. Of those don't concern you but sitting for an extra 2+ hours does you could look at penguin or other cold caps which you bring with you. The only down side is if your place allows for companions. Since civid my place is patients only unless there is a proven need (hearing impaired, language barrier, etc).
For DigniCap you are hooked up to a machine and if you need to go to the bathroom you get 8 minutes to go and get hooked back up or your session is wasted. Also you have to drag 2 cables and your IV stand into the bathroom with you. It's doable but, after the first 2 cycles I just held it until they unhooked me which wasn't easy since I did TCHP.
30 minutes before chemo
2 hours of Chemo
90 minutes post Chemo
20 minutes warm up
0 -
Marie914- I had the same chemo and used Wish Caps because it was the cheapest. But my husband was with me to help me. So I do see the advantage of using Dignicap and not having to buy dry ice and freeze the caps the night before and haul the big and heavy cooler to the chemo place. As far as thin hair goes, mine is thin and I struggled with shedding and not being able to wash my hair except for 1-2 times a week. I looked rough. I worked in an office. People were polite, but there was no doubt that I was going through something.
The upside is that I didn’t lose all of it and my hair grew back quickly. Like someone else said, I was afraid of permanently losing my hair bc of taxotere. Otherwise I would not have done cold caps.
Good luck! Wishing you the best.
0 -
Thank you Laurie, Morrigan and GoKale!
GoKale - I work remotely at home. I used to travel for work several times a year to present at conferences. However because of COVID, I am only doing webcasts and I don't have to turn the camera on. So if I look rough, only my husband will see me.
I am afraid of permanently losing my hair and also I like the idea of it coming back quicker and not being completely bald for a few months.
Can you wear a wig, scarf, hat etc. over your head when you are looking rough or you can't stress the hair that way?
0 -
Marie914 - the cold cap companies say not to allow your head to get hot - either by way of intense exercise or head coverings or hats. However, I sometimes wore a baseball cap (wasn’t tight) or a straw hat because when my hair was so thin, my head felt the sun too much. Also, some women wore a “halo” hair piece to help them cover their hair between end of chemo and the hair regrowth. I think the halo won’t make your head too hot.
0 -
Hi all!
Would you be willing to share your Cold Caps experience in an upcoming Breastcancer.org podcast? If you're willing to be interviewed, please send us a PM with your name, email, and phone number and we'll be in touch!
Thank you!
--The Mods
0 -
Marie,
My experience with DigniCap was very similar to morrigan's, I lost quite a bit during chemo but I did have hair left at the end and it was rather rough looking. I also did occasionally wear a baseball cap and did wear a wig twice for social occasions. I also did one other no-no but I think in the end it helped - I wore my hair in a very loose braid/braids for the last 6 or so weeks. The stragglers as I shed were driving me CRAZY and I think it helped keep me from running my hands through my hair. I would carefully comb out the braids each morning and rebraid.
With all cold cap systems, fit is really essential, so make sure whoever does your initial fitting is experienced and tighten down all straps. I did rig a strap to go through the chin strap so I could breath easier.
Good luck with your treatment and with cold capping!
Kim
0 -
For those that already did cold-capping, how long did it take for the hair you lost to start to grow back
0 -
Another question which I will get an answer Wednesday but just in case someone knows now.
I'm getting taxotere (first infusion) and cytoxan (2nd infusion) and doing cold capping (dignicaps) they told me 2 hours after infusion is done. is that 2 hours after taxotere is finished or 2 hours after both are finished?
0
