Cold Caps Users Past and Present, to Save Hair
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Thanks Jenny and Morrigan for sharing our experiences.
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Hi, all. I will be having my first infusion Thursday and will be using the Dignicap. Just wondered if anyone has used any of the hair products from Chemo Hair and Skin? If so, any reviews? I know they're pricey, but wondered if it's worth it. Thanks!
Swimgal
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Hi Swimgal,
I used a few of the products at the start and then settled on only using the Scalp Cooling Booster Part 1 (not part 2) on chemo days. It's a powder that you dissolve into water and they spray it on your roots before putting on the cap. I kept most of my head hair. There is also a cold cap forum on this site. yOu might have found it. I will try to post a link.
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Hahaha
ignore me. Sorry swimgal--I know we have talked on the Taxol forum and I thought that's where we were talking! funny. I still have chemo brain by the way.
Claire
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Claire1973, LOL. You made me double check where I posted
. Thanks for your quick response. btw, there are days I have chemo brain and I haven't even started my infusions yet!
Blessings
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I am at the point that I need to start making a decision if I'm going to do Cold Capping during my chemo or wear a wig. I'd really like to know if there are others out that have the same diagnosis and chose to do Cold Capping? Also what their experiences have been?
HER-2 positive left breast cancer. It is only 1.5 cm, with no lymph nodes involved. I will be doing limited chemotherapy. 12 weeks of weekly paclitaxel, with trastuzumab given every 3 weeks to complete 1 year of therapy.
I had the following surgeries
Mastectomy and EXPANDER RECONSTRUCTION - 6/24/2021) left breast, estrogen receptor-positive
BIOPSY SENTINEL LYMPH NODE - 6/24/2021)
Performed for Malignant neoplasm of upper-outer quadrant of left breast - estrogen receptor-positive
LEFT NIPPLE SPARING MASTECTOMY - 6/24/2021
Performed for Malignant neoplasm of upper-outer quadrant of left breast - estrogen receptor-positive
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hi, you have a very similar diagnosis to me. I had HER2 positive breast cancer and also did 12 weekly doses of Taxol with Kanjinti every three weeks (1.5 cm tumor on the right and nothing in lymph nodes). I had chemo before surgery. I did Dignicap cold capping and I’m glad I did it.
I kept my hair which was the main reason I wanted to do the cold cqppong but I also wanted my kids to see me as mom when they looked at me and not sick mom. BUT what I realized after getting started is that I live in a small town even though it’s a major metropolitan city, and I ran into acquaintances on the street regularly throughout my treatment, and I did not have to explain to them the whole story was what I’d been going through….my friends knew, but…..you know what I mean
my last chemo was March 25. I lost ALL of my hair except what was on my head (which I kept about 75 percent). Everything grew back in the first 6 weeks (eye brows, etc). The regrow on my head is about 1/2 inch long.
Hope that helps and hope it doesn’t read as insensitive or vain….I’m neither of those things!
Xoxo
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Claire1973, you do not sound vain or insensitive at all. That is one of the reasons I am doing cold capping - to have control over my privacy. I've told my family and the friends I want to tell. I don't want to deal with telling everyone I work with or acquaintances. Yes, of course I want to keep all the hair I can to keep as much of me the same as possible and I'm sure there's some amount of ego involved, but I think that's normal. But whatever happens I know God's got this and He's got me and that will get me through.
Blessings
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Hi all,
My name is Aaron and I'm a researcher (based in NUIG, Ireland) working on the side effects of chemo. I hope it's ok for me to post here. For the past while, I've been working on chemo induced hair loss, and alongside some colleagues, have developed a new, non-cooling based therapy that is more comfortable, portable and effective in preventing hair loss than cold caps (based on pre-clinical results so far). With this new device, patients wouldn't need access to a cooler or a freezer. We're really in the early stages of building this but we're hoping to run a small scale clinical trial next year with some patients here in Ireland.
As someone who has had family experience of cancer treatment, making sure the patient voice is heard in our research is really important to me. At the moment, I'm trying to understand how people interact with the existing services for chemo induced hair loss. Ultimately, I'd like to make our device as widely accessible for patients as possible, so what I'm really trying to understand is what's the best way to make people aware of this kind of device, and what's the easiest way for them to access it. I've made a really short (~3 mins) survey at forms.gle/ZHT5QnM9UzWNX2zo9 if anyone is interested in sharing their experience, and would love to hear people's experiences.
Thank you so much:)
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Good evening. Just wanted to share my experiences with the Dignicap after my first infusion this morning. I will say that the first five minutes of the cap were hard to tolerate, but after that for the duration of the cold capping it was totally tolerable for me. The chair I was in was heated, which was a very pleasant surprise, and I brought an electric blanket with me which I used throughout my time there. I was also doing cold gloves and socks during the Taxol. I'm hoping the discomfort will be for that short of a duration for future infusions. Also for those who are wondering, as I was before today, it is very easy to use the washroom with the cold cap. The nurse paused the machine and I unhooked the hoses and went to the washroom with the rolling rack that holds the infusion bags. No problem at all.
As an aside, everything else went very smoothly. I can't say enough about the staff at my facility. They were awesome! Such a blessing!!
One down, 11 to go!
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Congrats Swimgal for getting through it and having a great attitude about it. Yes--the cold cap was tolerable for me AFTER the initial chill down. The one area that was problematic for me, but I got through it is my ears would gte really cold. They do have these ear muff things to put over your ears...I used those and they helped. I just have really sensitive ears. AND i got through it and my ears are fine!
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For people lacking access to cold caps:
I did a homegrown kind of cold capping. I bought 4 of these freeze-able migraine caps from amazon, used combo ice and dry ice, and rotated them every 20 or so minutes during the infusion, starting on chemo #2 (of 6). I did lose most of my hair due to chemo #1 having no protection (too rushed!). But I did the cold anyhow starting with #2, because Taxotere CAN result in baldness! I thought it was worth it to protect my hair follicles so I would have less chance of that SE.
It worked very well! I wish I would have done it from #1 and not lost so much hair. But do I know it worked because my hair regrew *before* my final chemo. And it all came back, and, weirdly, it came back thicker than before.
So the cheap home-made cold caps are worth a try if real cold caps are not feasable. They re about $25 each (4) and the dry ice was another ~$25 per week. Total $250
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santabarbarian-that is amazing and resourceful…I’m very impressed by this.
Yes- I also heard freezing the hair follicle is good for longer term health.
My hair is coming in thicker than it was and I also don’t shed NEARLY as much hair in the shower as I shed before chemo. I’m assuming it will go back to my typical shedding eventually but maybe not!
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Claire1973, I brought the clip-on ear muffs with me (another tip learned here), but I didn't need them, as the headband they put on for the cold capping kept my ears comfortable. I will have them with me in the future just in case.
Santabarbarian, that is a great suggestion for people who don't have access to the cold cap!
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Two (2) questions for DigniCap users only:
- I have my DigniCap kit and have tried on the cap without the liner. I was planning on using wired earbuds to listen to movies on my iPad (and not disturb the other patients). (Everyone says that Netflix saves the day during their sessions, and I assume that each patient doesn't blast the volume on their personal device or the TV in front of their chair). The buckles on the DigniCap are inconveniently placed over the earholes, and the buckles may put undue pressure on the earbuds (even though my earbuds have very soft cushions). If you are a DigniCap user, how did you listen? (Or did you use closed-caption). I've heard that the refrigeration machine can be loud and annoying, so that's why I'm approaching it this way.
2. Can I use dry shampoo while going thru chemo while using Dignicap? If yes, would the use of dry shampoo count as one of the 2 allowable washings per week (per DigniCap guidelines)?
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hi!
Yes-the dignicao makes for some challenging listening. I ended up using my so'ns beats. They sat on the outside of the cap and I could hear them perfectly. It was all too tight in that area for me to use earbuds.
As far as dry shampoo….they really want you using No products I shampooed two times a week. after the second week, my hair acclimated and did not start to feel dirty between washes…was totally fine. But call them at digni and ask. I called them once and a person actually answered the call on the first ring. I also have an email for someone there if you want it.
Here is a pic of my setup!
Claire
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Claire,
Thank you so much! Your response is SO appreciated. Nowhere else have I received a straight answer.
After I saw your note and photo, I ordered the headphones right away and expect them tomorrow! (my first session is this Thursday).
As for the shampooing, thank you for sharing your experience. and I'll try calling them again (I did email last week but nothing yet).
Best regards,
Jane
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Forever_Fitt, as far as using earbuds or headphones, I can't help you because I don't use either. I am in a private cubicle, so if I want to listen to something or watch TV I just play it out loud. But to be honest I am usually groggy from the Benadryl for at least a couple hours, so I'm just kind of relaxing for most of the time. I am at the center for roughly 4 to 4-1/2 hours.
As far as the hair washing I have stuck with the two per week. I haven't needed to use the dry shampoo because your hair does not get nearly as oily. I used to wash my hair probably 4 to 5 times a week and I thought only two times would be impossible, but it's really okay.
I wish you luck with your Dignicap. The first time I used it the first five minutes were the hardest and then after that it was totally tolerable, so don't get scared or nervous about the first use. It definitely gets easier. It is totally worth it. I have had six of twelve Taxol treatments and I have had zero to minimal hair loss.
Blessings
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@forever fit - I didn't use ear buds because of the helmet. My place had the 2 machines in the far corners of the room. There was no one near me and the machines are fairly loud. I just didn't watch anything, I normally read, played games or slept.
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Hi everyone,
I had the Dignicap Delta with my 4 dose dense AC and 4 dose dense Taxol. The AC is particularly brutal on hair loss — I lost about 80% of my hair — but I have enough left to put into a “combover ponytail" (or rather, rat tail). I'm at one week PFC in the photo below. Most of my thinning is at the crown and the under layers (photo below)
The first 5 minutes and the post-cooling portions of the coldcapping were the most difficultparts (I often felt nauseous and headachy during the post-cooling, but I think that was also attributable to the chemo). I learned to manage that with the help of Ativan and anti-nausea meds, so my last infusions of both regimens went smoothly.
I wash my hair twice a week now, with lukewarm / slightly warm water and sulfate-free, paraben-free shampoo and conditioner. I've been told not to use any products on the scalp otherwise (including dry shampoo). My hair was greasy for the first two weeks, but quickly adjusted to once/week washing because AC dried it out considerably. Then washed twice / week on Taxol.
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Ammie, you look great. one nice thing about the hair you still have is that it will help train the regrowth. I have about 2 inches of regrowth right now and it is being trained by my longer hair which is nice.
Another thing, Jane--maybe they suggested you not cut your hair at all. i didn't understand this and asked them when I called. They said cutting your hair interrupts the follicles which you don't want to do.
Yes--i washed hair with water that was barely above body temp. I would stand under the shower with hot water hitting my back, adjust it to cool, wet my hair, get back out of the direct flow and turn it back to hot again while I was shampooing. I might not be explaining this well--bottom line, I was not taking full tepid showers. I would just turn the water to tepid when my head was under the water. My infusions were Thursdays, so I would shampoo every Thursday morning and either Sunday or Monday. I still took hot showers almost every day just didn't put my head under.
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HELP! I am due to have my hair colored tomorrow but will need chemo very soon, like in a week and want to use a cold cap system so my hair won't fall out. Should I not get my hair dyed tomorrow? I need an answer ASAP! Thank you.
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yogamom, welcome to Breastcancer.org and thank you for posting! We know you'll find great support and information here. Related to cold caps, and besides other members advice, here is an interesting podcast from our main site you may find helpful:
Scalp Cooling: How It Works to Preserve Hair
Hope this helps. Come back to let us know how you're doing!
The Mods
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I had chemo last July (Taxotere and Carboplatin). It was my second time around (15 years ago 1st diagnosis) so I knew I was going to be bald so I dedided to color my hair red (I'm a blond) a week before my 1st chemo. (My husband always said his idea of a perfect woman was a 6'5" redhead, I stood on a stool that made me 6'5", lol.) Then I read about cold capping and used the Penguin Cold Cap. I did lose some hair but not much. I followed all of their instructions which meant no coloring my hair for 6 months after treatment so I was a "red-head" for months. I regretted having colored my hair but I wasn't aware of the cold capping until after I made that decision. Good luck!
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I'm not really sure. I think it's probably fine to color it before, but their main mantra with cold capping is to treat your hair (and hair follicles) with extreme gentleness. That said--you have to have freakin chemo and wear a freakin cold cap, right?!? If it will make you happy to color your hair (and you have a small bit of recovery time for your follicles, go for it. If coloring it will give you anxiety that you shouldn't have colored it...don't color it. With my personality, I would probably beat myself for coloring my hair after the fact.
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Yogamom222, which cold cap system are you going to use? I am using Dignicap and they have all of their dos and don'ts on their web site. I know they didn't want you getting your hair cut prior to capping because it disrupts the follicles, which caused me to miss my hair appointment. I would guess they wouldn't want you coloring it right before either, but check the site of which cap you're going to use. My philosophy was I'm going to do the cold cap, so I wanted to do everything I could to make it successful, so I'm being very rigid about following their guidelines. The only thing I "violate" is I do use a curling iron on the lowest setting to gently curl the ends of my hair under on work days. I had my ninth of twelve Taxol treatments this morning and I have had very minimal hair loss, so I am thrilled!!!
I wish you all the best as you begin your treatments. Hugs.
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Yogamom222, I forgot to say, even though it's a different topic, are you going to do the cold gloves and socks to prevent neuropathy? I highly recommend them. I have had no neuropathy at all. You wear them during the chemo infusion portion of your treatment day, not the premeds or cold cap after-time. You can get them on Amazon.
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I HAVE ALREADY POSTED THIS IN TWO DIFFERENT PLACES, BUT I ONLY RECEIVED TWO REPLIES, SO I'M TRYING IT AGAIN.
Hello! I will be starting chemo about September 28th. I am receiving a second opinion on September 22nd and will need to make a decision within a day regarding which hospital to use AND to use cold caps or not.
I am curious if anyone has done carboplatin and Taxol and used cold caps.
My first opinion said I would be doing 12 weeks of chemo.12 consecutive cycles of: Carboplatin and Taxol.If you have experience with this regiment, what was your success and with what kind of cap? Success meaning how much hair did you keep? Your overall opinion about the process? Were the side effects manageable?
I would appreciate any help in this matter. It's a huge decision!!I have access to Penguin Cold Caps at hospital #1 and Paxman orPenguin at hospital #2.
What is your opinion of using Paxman vs Penguin?
I like the low(er) maintenance of Paxman, but I don't know it's success rate.
I am recovering from a double mastectomy (this is a recurrence for me) and DIEP flap. So, I’m trying to be able to make an informed decision so I can focus on my recovery while starting chemo.
Would love your help!Shannon
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I went through chemo last July. Carboplatin and Taxotere. I used Penguin and it worked great. I did lose some hair but no one could really tell. My oncologist said if I hadn't cold capped I would have been bald. Good luck to you!
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Good morning, ladies. I finished my 12 Taxol infusions yesterday. I used the Dignicap and also used the hair growth spray and shampoo from Chemo Hair and Skin. I'm very happy with the results. Posting a pic from right before I started and one from yesterday. I hope this is helpful.
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