This is a place to discuss concerns, tips and strategies for all types of side effects from all types of medications and treatments, (chemo/rads/hormonal/targeted/pain meds/etc.
Posted on: Jun 14, 2009 06:04PM
Hi all, I wanted to start a forum for all us that are using the cold caps to try to save our hair. I am on FEC100 X3 followed by Taxotere X3. My dosage unfortunately is not a guaranteed success. I am 40 days out from my first treatment and will have my third June 17. So far I have thinned but have not required a wig. I have no bald spots; however, around my right ear is the thinnest..I think because the cap wasn't tight there. All in all, I am pleased to still have a good covering. If you are using or have used the Cold Caps, I would love to hear your experience. Take care, Candy
Posts 21211 - 21240 (21,291 total)
Jul 13, 2020 04:59PM kaylie57410 wrote:
hi- any frostbite areas which are a form of burn, flaked off over a couple weeks like a sunburn does-cant say that will be the case with you- I then started to put an unfolded 4x4 gauze on the top of my head for future capping sessions-plus was careful not to have the cold cap too cold- colder is not better if you end up with frostbite--hugs,kaylie
Jul 15, 2020 08:21PM Maribellaz wrote:
I’m doing 8 DDACT regimen - I started June 23rd, so I have had two treatments already -well I just began shedding but I have noticed I’m developing some flakiness or could it be more like cradle cap? Any suggestions ? I was told by penguin to do apple cider rinse - I did that but not sure it worked. Should I just leave this stuff alone and just use a loosely fitted cap to cover up..
I’m using penguin cold caps and they have been rather tolerable, no complaints.
Does the shedding slow down at any point ?
Thank you :)
Jul 17, 2020 04:20PM Paisley20 wrote:
Can anyone tell me, is the Penguin cold cap system better than the Artic, Polar of Chemocold capping systems? They all say they are better than the other products and I have no idea which caps fit the best and have the least amount of issues and problems and the best support system, etc. Can anyone tell me why they chose a particular brand over the other? I am trying to decide which cold capping system to go with and want to try and pick one that people have had success using along with minimal problems and issues.
Jul 18, 2020 02:24PM - edited Jul 18, 2020 02:27PM by makingway
Hi Paisley20 - I have helped many women with both the Penguin Cold Caps and the Elastogel caps. The Elastogel caps are what Artic uses. The Polar Cold Caps are new to me. I just looked at their website and it looks like they recently started their company in 2016. I'm not sure why they are suggesting to cool their caps to -32°C to -38°C. But that is extremely cold. I would worry about getting frostbite. When using the Penguin Cold Caps anything lower than -30°C is too cold. I would be hesitant to use the Polar Cold Caps because of this and also because they haven't been around long. It looks to me that the Polar Cold Cap company has copied much of the same information that the Penguin Cold Cap company has provided, but designed a similar cap using a different gel mixture.
Now there are 3 caps on the market that the public can rent or buy (Penguin, Elastogel, Polar) And two cap machines with a cap that recirculates a cooling mixture (Digitana, Paxman). Each has its pro's and its con's.
I don't believe the cap machines get cold enough, they only cool to @10.0°C. Whereas, the Penguin Cold Cap and Elastogel cap are used at @ -30.0°C. Mind you they don't stay at that temperature after wearing on head for half an hour. But the Penguin Cold Caps do hold the cold well.
The Elastogel caps lose the cold faster than the Penguin caps. But, they do work, you just have to change the caps more frequently. Another plus in favor of the Elastogel caps is that you don't rent them, you purchase them directly and get to keep them when you're done using them. You can resell them, donate them or pass them onto a friend. For a set of 8, which is the number I'd recommend it costs @ $750.00.
Artic Cold Caps offers the convenience of providing all the necessary items that you will need to do the cold cap treatment but you don't get to keep them. They are rented like the Penguin Cold Caps.
Not many clinics have a Digitana/Dignicap machine or Paxman machine. I'm not sure of the costs at various clinics but the local clinic offering Dignicaps charge an initial cost of $250.00 for the cap you will use and $450.00 for each treatment. That cost can be prohibitive for someone having to do weekly Taxol treatments or for an extended amount of time.
That being said, if money is no object I believe that the Penguin Cold Caps have the best product.
Keep in mind whichever cap you choose that you will need someone to help with making cap changes or when using a machine someone to monitor it. The costs for that can vary quite a bit. You can have a friend or relative volunteer to help you, or, you can hire a helper from one of the companies. I know Penguin Cold Caps offers this but their costs are outrageous! Artic offers this service also but the cost is even higher than Penguin!
Best of luck whatever you decide! Feel free to private message me here on on my website: https://penguincoldcap.wixsite.com/help
Jul 18, 2020 02:29PM BlueGirlRedState wrote:
Paisley20 - I did cold capping aug 2017 - oct 2017 , with AT chemo, bilateral nov 2017. I went with chemocold caps. I have no idea which is the best or has the best support. How the cap fits is important. I have a large head ( have a hard time finding hats), and I think they did not fit well, and cold capping was only a moderate success. (Even though the oncologist and surgeon were really impressed with how well it worked. I contacted ChemoColdCaps concerned about the fit and sent pictures. They immediately went through their supply and found the largest (even though they were basically the same), and sent them to me. I went with chemocoldcaps because when I first called about Dignicaps (not available were I live), Dignicaps told me they were founded by ChemoColdsCaps. I do not know if that is a good reason. They also seemed to offer a lot of support with training and supplies. Everyone seems to use pantiliners to protect the ears. UGH. A friend suggested modifying that, went out and bought craft foam (same as forhead protection). we used a pantiliner as a template, and made a foam version. Good luck.
Jul 19, 2020 05:07AM kaylie57410 wrote:
Hi there- I used Penguin thru 4 rounds of TC and saved 80% of my long strawberry blonde hair--lost another 5 percent thru 5 more months of mild shedding-so happy I went for it- my daughter was my partner and kept me going at the end of each 7 hour capping session..3 years ago Penguin cost 500/month--however -not realized at the time--you can rent used caps for 300/month- are fine-have been cleaned and sanitized--you have to ask-this is not volunteered up front--it is expensive but made all the difference for me emotionally on this unwelcomed journey--I would have taken out a small mortgage to pay for it if I didnt have the funds-LOL-was that important to me to keep my privacy,identity,and feel normal--Kaylie
ps- anecdotally-it seems that a protocol involving adriamycin--like ACT -is harder on hair than TC-and some lose more hair with ACT=-another reason to go with Penguin as caps are colder on the follicles---but--the machines are much easier to use and navigate....
there are also groups that will help financially if needed- check with your coordinator/social worker at your breast center
Jul 19, 2020 11:29AM Smichaels11 wrote:
Does anyone have any experience saving their brows and lashes? I am about to have round 2 of 6 of TCHP on Wednesday and didnt cold cap (although I have moments of regret). My hair is falling out like crazy and I will be shaving my head later today. But I am wondering if there is any way I can prevent my eyebrows and eyelashes from suffering the same fate. Thanks!
Jul 19, 2020 12:34PM morrigan_2575 wrote:
I didn't do anything and kept my eyebrows and eyelashes. My Nurse said TCHP wouldn't take them.
Jul 19, 2020 12:47PM Smichaels11 wrote:
Really? Wow! How interesting that body and head hair go but face hair stays? I hope I'm as lucky as you (fingers and toes crossed)!
Jul 19, 2020 01:31PM makingway wrote:
Smichaels11- Not everybody loses their eyelashes/eyebrows but if they do it usually happens after they've completed their chemo regimen. Good news is they start to grow back fast! Mine eyebrows began thinning after my 12 Taxol treatments. I ordered a serum on Amazon and used on my brows and eyelashes. Within a week or two I could see the shadow of my brows. And they filled in pretty quick. I don't know if the serum made that happen or if it was just nature taking its course but I still use the serum. I also now use the gel-filled band on my eyebrows when getting chemo, hoping that will prevent them from falling out again. I got a prescription for Latisse but hesitate using it because it affects the rate of growth for eyelashes and I'm afraid it might cause my lashes to fall out again.
Jul 19, 2020 06:53PM IsMe wrote:
I am at day 12 after second infusion. I use Paxman cap, I have lost a lot and bald at crown as well as my front head. Basically leave leave maybe 30% of my hair at the back and some side...
Jul 20, 2020 08:48AM HikingLady wrote:
RE: hair loss---I used Paxman, and I found that most people didn't notice that my hair was thinner.
RE: eyebrows and eyelashes. This definitely happened in the weeks after chemo ended, more than during my course of infusions. For maybe a month, I used eyebrow pencil and some eyeliner, and since I wear glasses, it was not too weird looking. They started coming back in just a few weeks, and they were back to normal for sure by maybe 6 weeks after chemo ended. The 'coming back in' stage was quick and maybe took just 3 weeks or so. On the whole, I kind of thought of the eyebrow pencil phase as a weird time, but it was definitely FINITE, and that helped me accept it and manage it, emotionally.
Jul 25, 2020 10:16AM ysw63 wrote:
There is a wonderful Facebook group: Chemo Cold Cappers Support Group that has helped me tremendously with cold capping tips, tricks and general support for when I had questions related to anything about cold capping.
I would highly recommend joining this group for anyone cold capping during chemo or even considering cold capping and not sure if you should do it or what system to use
Jul 26, 2020 04:14PM KMom57 wrote:
Can anyone tell me how long post-Infusion you keep the cooling going with Dignicap? I know the person at the infusion center should know, but I want to have the info myself in case I need to advocate for myself. The scheduler told me it could be an extra 1-3 hours. That’s a big range andI want to know what it’s supposed to be before I get there. I am doing TC (taxotere and cytoxin).
Jul 26, 2020 06:17PM morrigan_2575 wrote:
90 minutes for Taxotere.
Then another 15-20 minutes for the cap to warm up to room temp.
Jul 26, 2020 07:01PM KMom57 wrote:
Morrigan, Thank you.
Jul 26, 2020 07:03PM KMom57 wrote:
Sorry another question. Am I supposed to start 30 mins before the taxotere starts?
Jul 26, 2020 08:54PM - edited Jul 27, 2020 09:47AM by morrigan_2575
they turn the system on during premeds and it runs for 30 minutes before Chemo starts. Make sure to ask for a sedative, it helps get you over the 20 minutes of discomfort.
Also you can only unhook from the machine for 8 minutes (to use the bathroom). It's a pain in the ass because you're dragging 2 cables plus your IV stand with you...
Jul 26, 2020 09:15PM makingway wrote:
From the Dignicap website: "Depending on drug and dose, the post-infusion cooling time will last from 60-180 minutes."
Jul 31, 2020 10:33PM - edited Jul 31, 2020 10:35PM by KMom57
First infusion with Dignicap in the books. Wow. What a process. Had a great nurse though who knew what she was doing so that was good as I don't think I'd have been able to get that thing on properly by myself. They soaked my hair quite throughly before they put on the cap and turned it on, which made it colder I think. My hair actually froze and got crunchy. It was uncomfortable, yes, but doable. Not so bad that I thought why did I do this. Had headache around my forehead area for most of the infusion. Tylenol did not fix it. And COLD. Not enough warm blankets in the place to keep me from shivering. My Lips were actually purple. Next time I'll take an electric blanket. But even given all that, I didn't find it so uncomfortable as to be unmanageable. The post infusion time seems to be managed by the Delta unit as it has a countdown timer. It was 120 minutes post infusion for TC.
Useful info: the regional rep called me the night before to make sure I knew what I was doing, talked me through the process, gave me her cell number if there were problems. She said there are now two different machines. The results on the newer model, Delta, seem to be better she says, though they explicitly warn that it does not keep hair for everyone. She also says a mistake many people make is being afraid to comb their hair daily for fear it will fall out. She says that will have the opposite effect as it mats, and then it takes more force to comb so you lose more. She said very important to comb it every day.
Oh and you are so right Morrigan. Going to the bathroom is a real PITA.
Aug 1, 2020 07:25AM - edited Aug 1, 2020 07:27AM by morrigan_2575
@kmom57 - my place had the old machines. They new ones were to come in during my 3rd treatment but, COVID put a hold on that.
My place also had a heating pad on the chair, it really helped, if you have one, maybe bring it to #2 and try it out. I had the heating pad and 2 blankets.
I agree on the combing. I would also say get gentle leave in conditioner keeps you hair from getting brittle and helps with the mating issues.
I used to run my hair under the sink to wet it and, they would still go through a whole spray bottle to get it really wet.
9 weeks from final Chemo and my shedding has dropped significantly. I can also see the tiny bits of hair growing in if I look closely (kind of hidden by the longer hair).
Not a fun process but, worth it even if I ahte the grey.😂
Aug 1, 2020 11:51AM - edited Aug 1, 2020 11:52AM by KMom57
Morrigan, did you have success with the Dignicap? My nurse told me her other patient using it with TC just did her second and hasn't lost any hair yet. Made me a bit more hopeful. Oh and the heated pad is a great idea. I’ll try that next time. Thanks
Aug 1, 2020 12:01PM morrigan_2575 wrote:
i had very thick hair, it got thin but I didn't lose much that was noticeable to anyone but me. Mostly it was down my part and a little in the back.
Aug 1, 2020 12:17PM KMom57 wrote:
That gives me hope. Mine, however, is starting out thin and fine. By nature, both, and then it thinned a lot after the surgeries and the letrozole. I’m not starting with much as it is. But maybe I’ll get lucky.
Aug 4, 2020 02:54PM hanawaltl wrote:
This is my second time going through chemotherapy and this time I decided to try out cold capping. I know there are so many rules you have to follow. And I heard one was no saunas. I do Hot Yoga almost everyday and Im not sure what I will do without it. Has anyone continued or done hot yoga throughout cold capping? Not even just hot yoga, any hot exercise. If someone could let me know that would be great because I want my hair and my yoga! Thank you xx.
Aug 9, 2020 09:31AM morrigan_2575 wrote:
I'm 11.5 weeks post final Chemo treatment and my hair is growing in rather nicely. I'm impressed by how quickly it's come back.
I don't use product in my hair (except for leave in conditioner) so I'm having a bit of an issue where the new shorter hair is sticking up (like static shock) but, I just wet it down when it gets too crazy.
When it first started growing in it seemed to be mostly grey or white but, now there's a lot of black (my natural color) coming in.
I'm still sticking to the washing once per week in tepid water with my palms instead of fingers. I want to try and dye it in September that will be 17-18 weeks post final Chemo (depending on when I do it).
Aug 11, 2020 08:55AM rockymountaingirl wrote:
Hanawaltl, since no one has answered your question yet, I will try. I have never done hot yoga, but when I went through chemo two summers ago, I was concerned about wearing my riding helmet when I went horseback riding. (Or, after chemo turned me into a wet noodle with no strength, when I went out to the stable to give my horse some carrots and apples.) Although helmets are advertised as being ventilated and therefore not hot, they are ALWAYS hot when the weather is warm, and I knew that if I wore my helmet I would be breaking the Dignicap rule about not getting my head hot. So I read all the posts I could find about wearing helmets during chemo, and they indicated that people have worn helmets during cold capping and not suffered any bad consequences because of it. That is, if they lost any additional hair because they got their heads hot, it wasn't enough to be noticeable. And that was my experience, too. I may have lost a few additional hairs because I wore my helmet for an hour or two when I went out to the stable several times a week, but I still kept most of my hair and I regard my cold capping experience as a success.
For whatever it's worth, I suspect that if anyone ever does a scientific study of this (and someone should!), they will find that your cold capping results depend primarily on the particular chemo that is given and your response to that chemo. If you sometimes break one of the rules regarding how you should treat your hair during cold capping, but otherwise you follow the practices recommended by your cold capping system, I think you will probably be just fine. You can always try doing your yoga for a week and see if you notice a change. I wish you the best of luck!