Cold Caps Users Past and Present, to Save Hair
Comments
-
Elberama-- thanks for sharing your routine, you look great.
Sherry-- you look amazing. Now on to the rest of the healing process.
I'm 5 months PFC. My hair is very slowly starting to grow back in but still very thin.
Now my scalp has become very dry. Has anyone experienced this? Any product suggestions?
Thanks!!!
0 -
Hi Brightness and welcome. I used Penguin cold caps 5 years ago on the weekly taxol/herceptin regimen, and barely lost any hair at all from my head. Cold caps work very well with that regimen. There is a fantastic local Penguin rep here in the Twin Cities, and I hired her to teach my helpers how to do the caps. I also had her come to my first session, and had her fill in one time when my helpers couldn't make it. I think Penguin caps would be extremely difficult to do on your own. I had two helpers, but it works fine with one helper as well. As for additional expense - if your facility doesn't have a medical freezer for cold caps you will have to buy dry ice each week. (I had a medical freezer so I'm not really familiar with the dry ice routine.) Also you'll need one or two wheeled coolers for transporting the caps, and a special thermometer for checking the temperature of the caps. It's not cheap, but it was well worth it for me. I don't know how you go about finding a helper in your area - where are you located?
0 -
Brightness - along with the cold cap rental, there is a charge for dry ice each time you cold cap. Penguin should help you locate places to get the dry ice, but the cost could be about $70 each time. Not sure if they will charge you sales tax on the $500. I think those were the major expenses.
MichCali - what about a little bit of castor oil on your scalp for the dryness? It would even help your hair grow.
0 -
Thanks for the input. I'm in western MD, so not metropolitan. I'd really like to save my hair. If I knew it had a good chance of being successful, I'd definitely be willing to spend the money. I didn't think about themdry ice and portable freezers. It sounds so complicated
0 -
Pamela - Thanks for checking if the halo is human hair. It's pretty expensive to be synthetic. The Adorna kind I posted is not as convenient because you have to wear a hat or cap, but they have quite a bit of human hair. The price is $425 - not much more than the halo.
Gokale - I haven't seen you here lately. How is hair coming along?
I wish everyone GREAT HEALTH AND HOPE THAT YOUR HAIR GROWS BACK BEAUTIFUL SOON!!
0 -
hi Brightness, I have finished 2 of my 4 taxotere/cytoxan treatments, using Penguin cold caps. They have been good to work with - prompt communication and answers to my questions, and considering the hair loss from most of the rest of my body, it is definitely working. I'm shedding much more hair now (starting with the first wash after treatment #2), but I still have very good coverage all over my head and no bald spots.
For me, the only slight negative is their info booklet... I'm pretty compulsive about directions for anything important, and took notes as I read the booklet. There are several inconsistencies that were quickly cleared up by an email to the rep, and several things could be explained more clearly. They reference a timing guide that you can print out and use for each session, but that wasn't in the booklet. Considering the rental price, I think their written materials should be better (they are useable, but could be great with a thoughtful edit).
Additional costs: I found my local grocery store (Fred meyer) has dry ice for $1.59 per pound, which is cheaper than the other nearby supplier and they get deliveries the night before my treatment so they always have a good supply. We only buy 4 slabs the morning of chemo, even if they don't total 40#. Even though we leave the dry ice in cooler outside with the lid completely open after we are done with it, there is still dry ice that has not evaporated the next morning (so it's plenty to last the 1 hour I need for cooling and 7 hours for capping with my meds).
Shipping - postage EACH WAY is not included in rental price, so call the penguin rep to find out when you need to place and pay for your order to be able to use ground shipping and get the caps on time. I missed the ground order date and had to ship fed ex express saver 4 day from Lexington MI to Seattle WA for $101.00. I will return everything by fed ex ground, which will be cheaper. This was for the standard kit without the cooler, which would have increased the shipping price significantly due to added size and weight.
The premier kit includes the right size wheeled cooler, a thermometer, 4 gel caps, 4 gel bands, 2 Velcro straps, and they email you a detailed booklet. The standard kit has everything EXCEPT the cooler. The rental price is the same, but I figured it was going to cost more to ship the cooler both directions than it would be to buy that size and have it to keep (which we would use often). Walmart had them for about $25 but I got the awesome Seattle Seahawks one I was eyeing at Costco for $40.
Incidentals:
- back up battery for thermometer. Keeping it unopened with receipt in ziplock, and will return if not needed
- leather or other thick winter or work gloves for handling the slabs of dry ice as you rotate caps in the cooler (my hubby is using his yardwork ones. Doesn't matter that they are dirty since he does not need them for handling the caps themselves)
- couple old towels to dry caps off, plus a bath or beach towel to use as a work surface at the infusion center
When ordering, allow at least 2 or 3 extra days so you can practice putting the caps on with your helpers. I bought 1 slab of dry ice so I could see what it felt like ahead of time (not as horrible as I thought, but it is an intensely cold first 2 caps), and make sure we were getting the cold to all parts of my scalp, but you could do the same thing by chilling a practice cap in your freezer or on ice cubes in the cooler.
Hope this helps!
Willow
0 -
brightness,
I think the rapunzel project website has a list of chemo meds and how well they respond to cold capping. I think penguin also has info on which meds it works well for, although they are more biased of course. And take a look at what percentage of hair loss they consider "successful" for cold capping and whether that would fit into your criteria for being worthwhile considering time and expense involved.
I'm happy to email you the penguin booklet and/or chat by email or phone phone if you have more questions. The written directions seem overwhelming, but it's really a simple rotation. Once we did the first couple cap changes it went very smoothly without needing to refer to booklet or our notes.
Willow
0 -
Go Kale-- Thanks for the suggestion!!!
0 -
Brightness--Willow22 gave you lots of good advice, as well as PatinMN. I am on the same treatment as you and Pat--12 weekly taxol and a year of Herceptin. I am 19 weeks PFC tomorrow. I also used Penguin and had great results. I lost some hair, but probably less than 10%? Hair loss continues post final chemo, so don't fret. I seemed to turn a corner about 10 weeks PFC and have seen considerably less hair loss with each shampoo since. I heard you say you thought it was complicated--it just requires good organization. Penguin also supplies the suggested time to start capping during premeds and how long to continue after you finish chemo. They also send you an excel spreadsheet so you can enter your estimated start time and it backs up and tells you when to put the first cap in the cooler. You should have a helper. I know one woman on this site did it by herself, but I would have found it difficult. My husband was my helper, but we also had a second person--either my daughter, my niece or my sister--just to help keep everything organized. But one helper can do it all. Keep a checklist of things you need to take with you, and have your cell phone or another timer so that you can track the time to know when the next cap should be taken out of the cooler. Another item I would add to Willow's list of things you need--buy a heated throw, and if your center has them, sit in a heated chair. Lastly, there are numerous YouTube videos you can watch for Penguin to learn technique as to how to apply the caps. Good luck. I think you will be very pleased with the results.
0 -
Ladies, thank you for the clear info. I love having people who explain things in a way I can understand. I'll do some more research today and give it more thought. I really didnt want to ask my sister to accompany me to treatments, but I doubt my friends who offered help could pull this off and most people work during the day. Hiring someone to help would add another cost and I'm not sure who I could use. so many decisions to be made in such a short time.
One more question: My MO mentioned concern that cold capping might prevent chemo from destroying cancer cells in the scalp. Do cancer cells "run" to where they're safest, i.e.: a cold scalp, or do they just go wherever they're going to go regardless of whether they're more likely to be destroyed?
0 -
Brightness, mets to the scalp due to cold capping has been studied, in Europe I think, and there is no correlation with cold capping. they've used cold caps in Europe far longer than in the US so more data is available. Mets to the scalp are very rare anyway, but there is no increase with cold capping. One of our fellow cold cappers did a ton of research on this and pulled it all together a couple years ago. She doesn't post much any more, if at all,but please be reassured!
0 -
brightness-- if keeping your hair is very important to you for whatever the reason, I would still encourage you to give penguin a try. If you found it was too much for you due to coordination of helpers and cost, you could always return the caps. But, if you could find a helper for the first time, it will buy you time to figure out how to manage the rest of the treatments. For your first treatment, you will want someone to go with you anyway. They most likely will give you pre-mads, which will make you drowsy and it would be best for you to have someone to drive you. And I have been told, you must cap the first treatment. I will not sugarcoat it. It does take quite a commitment, and it will add at least two hours to your treatment day as you must continue to cap for two - three hours after the chemo is finished. But it was certainly worth it for me! I wanted to keep my privacy, so it allowed me to continue to work without anyone in my office in knowing except for two partners. Good luck in making your decision!
0 -
I talked with my sister and she will come to my treatments and help me if I decide to do this. I need to spend the weekend researching, then will probably order it next week. I meet with my MO and will get my schedule and port placement next week too.
I looked on the rapunzel project site, but couldn't find the average success rates for cold capping with taxol. Does anyone know where I can get this info? It's a lot of money and effort, so I'd like to know the likelihood of success.
Thanks
0 -
Brightness - with weekly taxol you WILL be successful, as long as you fit the caps properly to your head (make sure there is good contact with the cap and scalp). I have kept up with this thread since my own treatment 5 years ago (and I was the first poster here who had weekly taxol/herceptin). There hasn't been anyone on that regimen who didn't save all or almost all of her hair!
0 -
Brightness -- i emailed the repunzel project and the manufacture - they will give the info on the percent. For me, I would have done anything -- with any percentage - it all comes down to your priorities. In the end there is no guarantee, so whatever you decide you have to be ok with the decision that it might not work for you.
Look for utubes of penguin caps -- there are many to review -- you can do this. And it is ok to ask for help -- you will pay it forward for someone else when you are well to even the balance.
0 -
I think I spent too much time thinking about it today so I decided to focus on other things this evening. Tomorrow I'll research further. Someone on another thread said she did taxol and lost her eyebrows and lashes. That nearly pushed me over the edge and back into panic again. The thought of all this effort to save my hair, then to lose my brows and lashes? Really
0 -
Brightness - I did Taxotere, which is worse than Taxol for hair. My eyebrows just thinned thanks to EES - Essential Eyebrow Solution - twice a day. It was easy to make them look fuller with eyebrow pencil. I used castor oil for my eyelashes every night and they thinned, but never lost all of them. My eyelashes are growing back and I still haven't lost all of them. Cancer diagnosis and treatment are so overwhelming. I understand what you are going through. Too many decisions to make and not enough time to research.
0 -
Brightness--I had the same treatment as you will have, and I did not lose my eyebrows. I also used the EES solution based on a recommendation from someone on this site throughout chemo. I did nothing to my eyelashes during chemo, but did lose most right after I completed the 12 weeks of taxol. My MO wrote a prescription for Latisse, my insurance paid for it even though most won't, and I was surprised as to how quickly they grew back, and much fuller and longer than they ever were before. If insurance won't pay for it, I think a 5 ml bottle is about $150--not a lot when you consider how quickly it helps the lashes regrow. If you lose your lashes, using eye liner pencil helps disguise the loss
0 -
I meet with my MO in a few days. I'll ask her if latisse is okay while on taxol. I thought I readthat some people were told they couldn't use it during chemo, but maybe they were using a different type of chemo?
I'll look into EES. I've never heard of that.
0 -
Brightness, try not to be too anxious about it -- yes, I know it is harder said than done, I have had panic attacks myself. What has helped me in this area, is that my therapist (who specializes in oncology related stress) told me that you have to find a way to calm your anxiety, to give your immune system a way to heal/repair.). Knowing that calming down helps me heal, helps me to find a way to not be so anxious.
Now, similar to you I would guess - I have this desire for everyone to see me as a healthy as possible - cause I feel I like I am. So, here are two tips for you. After many hours of my own searching.
Human Hair Eyebrows -- https://www.headcovers.com/womens-human-hair-eyebr... *they come in a few different shapes and may boards on my a cancer sites - especially young survivors coalition -- give them high reviews
Thrive Eyelashes -- they donate a pair to for every pair you buy -- https://thrivecausemetics.com/products/kristy-lash...
I am not affiliated with either of these products in anyway - I just like to look my best and have done research. I have ordered both and have on hand depending on my hair loss. I am on Day #10 post first Chemo and I am using the Dignicap - so I have zero idea what will happen. I am just going to be prepared to look my best - and heck false eye lashes had always been on my list of things to try - so now I will.
Brightness, this does stink - so much - we all hate it. I hope this helps you find some options to find ways to get through this.
0 -
Also, I had to share this - Inspired by Pamela's Halo Crown (it looked so fantastic!) -- and knowing that I have really thin hair to begin with and that the halo's are probably too heavy for me even on a good day, I started doing some research.
You can make your own halo type of crowns, brilliant! I can play with different lengths and cuts (most importantly for me weight/thickness, most commercial things are way too thick for me to conceal - kind of like the women in this video). I have a great hair person than can help me with color.
For those that might want a halo or other, and have any craft sense (i am going to do the craft with my niece and make one for her too). You can make your own!! You can buy hair at sally or my favorite on line and then get crafty to form your own style. I suspect you could do it for hats as well, etc.
Check out this utube, this is just one of the many videos that shows you how to make your own --
I as I am in the midst of cold capping and I have no idea how it will work (Day 10 post first...waiting with my breath held and making a plan B just in case).
I might even try attaching hair to a really soft headband. I can get creative when I need a distraction
Here is one of the many videos i found --
0 -
Travel girl, thank you for understanding. I'm usually a "have a plan A and a plan B" kind of girl so your suggestions are helpful.
0 -
Brightness--only use Latisse once you start to lose lashes which would be post taxol
0 -
Brightness---I was on a different chemomtherapy than you but also used EES - essential eyebrow solution
essentialeyebrowsolution.com
Very helpful and informative company if you call them.
My daughter bought me from Maybelline--Brow define & fill duo, which helped fill in.
My eyelashes thinned and when I finished chemo, I started using a product :
GrandeLash-MD - lash enhancing Serum
grande cosmetics.com
I also purchased the lash boosting mascara and I am seeing results.
I hope this information helps you! Good luck!!
0 -
Hopefull2----Hope your day back to work went well
Pamela23---I'm with you...would love to have my hair back the way it was....am very thankful that I have hair and for the cold capping!
Wishing everyone wellness always!
0 -
Brightness--I had used Latisse for almost 2 yrs prior to chemo, all during chemo and BAM--eyelashes STILL fell out. The were gone 2 months after chemo, grew back and fell out again (this time with a small row of lashes underneath so not bald lids) 2 months after they had grown back. Now they are longer than ever before, thanks to Latisse.
0 -
Younique sells a lash growth serum too. its like 42 dollars and its worked great for me.
My sister sells it if you want to check it out. Lashesandlight.com
0 -
I read on the rapunzel project site about someone who wrapped something around her eyes to ice them during chemo too, but she was an actress and probably had a private space for chemo. I would imagine I could use false lashes if needed, although I've never used them before, but brows would be hard to fake. I've seen the press on kind with hairs, but what are the chances of getting them on straight and would they really look real etc? I'm not good with makeup as it is. My normal routine is pretty basic and natural.
There is a dignicap facility about an hour and a half to two hours from me. I don't know the doctors there. My local facility is only about 15 minutes away, but I'd have to use the penguin cold caps there. Still, I'm familiar with everything there. Well, much more so anyway. Does anyone know how dignicap and penguin compare to one another? It looks like dignicap would be easier, but driving in the city where I'm out of my elementwould be more stressful.
And thank you again for all the help. I'm not very good with technology and finding the right info around the internet, so the info I get here really helps.
0 -
One more question... is it okay to wear hats or wraps when out and about if I'm cold capping? My hair without styling and root touch ups (especially with limited washing) is just not so pretty, but my concern is that the hair might already be prone to falling out and if I wear a cute hat over it, the hat will encourage the hair to fall out.
Sorry for the tons of questions. I look forward to the day when I'm past all this and can repay the favors to others
0 -
hi brightness, long commute time to factor in along with pre-med administration time, infusion time and then also needing to stay forthe additional capping time once chemo is over, and then you will need to drive back home. For me, I'm happy to leave after my 3 hours of premeds & 2 infusions, and drive 15 minutes to finish capping in the comfort of my own home.
For me, having a medical oncologist that I know and trust is the most important part of the equation... someone who listens to my needs and concerns and responds with caring, great information and effective solutions. The other drs who've covered for mine on the weekend (1am - yikes!) and while she was on vacation are equally good. Im lucky that they are so close by and would drive further to get the level of care needed, but personally would not choose such a long commute just for the capping system.
Do you know how often you will have appts to check labs and possible white blood cell stimulating injections? I'm on taxotere/cytoxan every 3 weeks, but go to the clinic for labs on day 6, get a neupogen shot that day and day 7, repeat blood count on day 8 with a possible shot of needed. I think that would suck to commute 3 to 4 hours round trip for each of those!
Different meds, but I've finished 2 of the 4 chemos (5 1/2 weeks aftwr the first and 2 1/2 after the 2nd) and i havent lost any of my eyebrows so far. Eyelashes have thinned a bit, but its not noticeable with a little dark brown mascara and eyeliner. Considering my mousy brown + grey roots hair color with lots of grown out highlights and my medium skin tone, i figure black mascara would call attention to the missing lashes more than conceal them.
I have bangs which don't seem to have thinned at all, so i figure i'll wear them a little longer than normal if my eyebrows disappear.
No idea if wearing hats occasionally would lower your capping success.... penguin is very specific about not heating your head and stressing the hair follicles, so I haven't tried it (and there's no need to since my capping has been successful so far). They tell you to wash hair with tepid water (less than body temp), don't wear hats, try not to overheat when working out, etc. We've put so much time, effort and money into preserving my hair, I'd rather not risk it.... but I'm not a hat lover anyway.
0
