Hair Loss During and After Cold Capping (Scalp Cooling)

Before or after you read this post, I highly encourage you to listen to these three episodes of my podcast:

The Scalp Cooling (Cold Capping) Episode [Part 1]

The Scalp Cooling (Cold Capping) Episode [Part 2]

The Rapunzel Project Episode

You can listen here online or in whatever podcast app you usually listen to podcasts. Simply search for This Unmillennial Life.

The following post continues to be updated periodically as I continue to regrow my hair after chemotherapy.

Not long ago I published three new episodes of the podcast detailing my experience with cold capping (scalp cooling).

[Note that the terms scalp cooling and cold capping can IMO be used interchangeably. For whatever reason “cold capping” seems to be the most common term. Technically I did “scalp cooling” as that’s the term the system I had, Dignicap, uses. So you’ll hear me use both.]

And while those three episodes cover a huge portion of what I think is most important for women to know before beginning a cold capping experience, I was prompted to write this more in-depth picture-filled post when I fielded my first call from a local fellow cancer patient who had been referred to me by our Breast Health Center. She was contemplating cold capping and wanted to hear about my experience.

(I could kick myself for not having those episodes ready to share with her.)

We talked at length, and after we hung up, I sent her a recap in pictures of how my hair had fared throughout chemo and in the months following. I’m sharing many of those pictures here (and more, now that it’s been more than a year+ since I finished chemo) in the hopes that somehow my story will help other women in deciding whether or not cold capping is right for them.

Now, before you quickly scroll through to look at the pictures, let’s get on the same page.

What You Should Know About Cold Capping

Cold Capping and Scalp Cooling are NOT simply a vanity issue. I can’t stress this to you enough. You’ll hear more about that in the podcast episodes, but I’m here to tell you that every time I hear someone refer to a woman wanting to keep her hair during chemo as a “vanity issue,” my heart sinks… and then I get a little angry.

What’s vain about wanting to look at yourself in the mirror each morning and recognize yourself?

What’s vain about wanting to shield your children and have them see you as they normally do? (Having had a mother who was twice bald from chemo, I understand this fear.)

What’s vain about wanting to control your health privacy?

None of this is to say that choosing NOT to cold cap or not being able to (cold capping is NOT right for everyone, and we’ll cover that in the podcast) is a sub-par option. I have a friend who I think the world of that didn’t cold cap (we were in chemo at the same time), and I see her beauty irrespective of a head of hair.

But me choosing to cold cap doesn’t singularly make me more vain in wanting to preserve a part of me I’ve known for 40+ years… while so much of me was given over to chemo, surgery and radiation. I just wanted to hold onto a little part of me that felt like me.

That all being said, you’re going to look at these pictures and likely realize very quickly, I lost a lot of me (i.e. I lost A LOT of hair.) And that’s TOTALLY NORMAL with cold capping. The notion that cold capping can somehow miraculously save all of your locks and keep your looks the same is an aspiration I’m sure every woman has going into cold capping. To date, though, I know of none personally who can say “Oh, I didn’t lose any hair!” (I’m sure these women exist. I just don’t know any personally.)

Is Cold Capping Worth It?

Having lost as much hair as I did, the question becomes “Would you do it again?”

ABSOLUTELY. It was worth every penny I paid, all the additional work/stress in between treatments, the extra time in the chemo chair, and the “workarounds” I’ve dealt with since chemo ended (see below for ongoing updates about my hair today). I pray I never have to do it again, but I would.

My goal going into cold capping wasn’t overly ambitious. My primary goal was to keep enough hair that I could get through chemo and the months after it with enough hair to not need to shave it all off.

My secondary goal (and I told myself upfront that I would keep cold capping through every treatment no matter what), was to preserve as much of the integrity of my hair follicles as possible for the future. Permanent hair loss (especially with taxane-based chemotherapy) is sadly a more common occurrence than many people realize or want to admit. Cold capping reduces the risk of long-term hair loss, while also making lost hair grow back faster. (My bald spot started filling in well before chemo was over. You’ll learn more about how it does all of this in the podcast episodes.)

What was NOT my goal was to have a beautiful head of hair throughout chemo. I knew I wouldn’t be able to wash it much, use a hair dryer, flat iron it, or use products on it.

Bad Hair Days During Cold Capping

Imagine your worst hair day and being told you can’t do much to it. That’s kinda how cold capping was. (But it was MY HAIR, and I was okay with that since that was the goal I’d set for myself.)

[Note: I did push the envelope a little bit by wearing it either pinned back very loosely or in a low loose pony (to cover my bald spot) when I was going places. I don’t recommend doing this much as it puts a strain on the fragile follicles. Lesson learned as I got a little too reliant on the low pony in the couple of months after chemo and ended up with extra thinning in the back as a result.]

And with that, it’s time to do the big reveal. Here are just a few of the MANY pictures I took throughout chemo and the months after.

(above) This was me just a few months before my diagnosis for reference.

(above) This was me at my first chemo treatment wearing the Dignicap Scalp Cooling system. (Also notice the shirt with easy port access that I mentioned in this post about Gifts for Cancer Patients.)

(above) Part of the “daily” maintenance with cold capping is combing (gently and strategically) your hair to prevent tangling while it’s shedding. This is what it looked like before Days 18-21, when the “big shed” (as I like to call it) happened. It’s steady but manageable. Not super scary. Yet.

(above) I knew going in that Days 18-21 would be the worst days in terms of shedding. This is just a fraction of the Day 20 shed. It was falling out to the point that I had to start combing through my hair and flushing it down the toilet without looking at it. Seeing it piling up in the sink was too scary.

But here’s the key thing to know if you’re reading this in preparation for cold capping or have stumbled on this post and you’re in a big shed: IT DOESN’T LAST like this. It WILL continue to shed. But not to this level. This level of shedding resulted in my bald spot (below):

It was at this point that I freaked out and texted my friend Margaret (who you hear in the 2nd Cold Capping podcast episode.) I was basically ready to give up. I was scared that it was going to keep shedding at that rate and that I would be this monster of a steroid-puffy, chemo-poisoned woman that had just a few long strands of weird hair clinging to her head.

Margaret talked me off the ledge and basically gave me a ONE DAY AT A TIME pep talk. It was at that point that I started walking in a space of looking in the mirror each day and asking myself if I felt like what I had left was doable for THAT DAY. And if the answer was YES, I was going to press on. So I pulled my hair back and pressed on.

And that’s what I’ve been doing every day since.

Here’s how my hair looked through the remainder of chemo and up to the current day. (See below for recent updates about my hair.)

(above) This was my hair on the morning of my last treatment. Note how the bald spot has already started filling in. Also note, though, the receding hairline. Hair loss wasn’t linear. It fell out in different spots at different times… which actually made it simultaneously more manageable but also a constantly moving target to figure out “what works” next.

A VERY important tip that nobody shared with me, but I’m sharing with you — make sure that you put the headband you’re required to wear while cold capping (to prevent frost bite on your forehead) ONLY on your skin and not INTO the hairline. The receding hairline is a direct result of me wearing the headband too far into my hairline.

(above) This was the day after my last treatment. I could easily cover the bald spot at this point.

(above) This was one month after my last treatment (and likely when I started getting a little too comfortable wearing the low pony. You’ll see how it thinned over the next two months)

(above) This was two months after my last treatment. (Too much ponytail wearing here. Sigh.)

(above) This was three months after my last treatment (and a rare “face view”). Here you can see both the continued thinning in the bottom longest layer, while also noticing that the top hair line is beginning to fill back in.

(above) And this is me a little more than four months post-chemo. At this point, the pony had reached its limits. It had to go. I had a full hair of head underneath all that old hair. I was anxious to get the two much closer together and be able to let go of my “pony crutch”… even though it was a BIG change going to short hair.

I’d be lying (and acting like I’m not human) if I said I didn’t have vanity-filled days once I was through the more intense days of being in active treatment where I looked at myself in that first picture and long for the hair I had before. But most days it was just a manageable feeling that comes and goes. Some days were harder than others, but that’s true for everything in the post-cancer diagnosis world.

Rather than getting swallowed up in the grief of what was, I tried to lean into the gratitude of having been able to control a small part of my journey mostly on my own terms. Gratitude is a very powerful emotion to pull me away from the mirror and back to a heart of thanksgiving and desire to serve others.

(p.s. If you’re reading this as a current or future cold capper and want a little virtual hand holding, please contact me. I’m happy to help.)


UPDATE #1: After this post was originally first published, I got my first haircut at 4 months post-chemo (below). We had to cut a lot of the old, long leftover hair (i.e. the “pony crutch”) and trim some of the uneven, new growth. At this point, my hair had what you’d consider patchy growth… meaning there were spots that were still normal length and spots that were short. This is the challenge that using a cold cap offers — retaining old hair and having new hair growing in at the same time. But it’s a challenge I’m VERY thankful to have.

The areas that were shortest requiring the longest time to “catch up” with the rest of the hair were right around my hairline and at the crown where my bald spot was. (See above about my tip related to the hairline. I’ve yet to come up with a good plan for the common bald spot on the crown issue.)

I also opted at this 4-month mark to get some semi-permanent color (above). Prior to chemo I had been coloring my grays for years. I waited until the six-month mark to apply permanent color, but early on, the semi-permanent definitely helped. The semi-permanent color wasn’t exactly “my shade” but it was so much better than the washed-out color I walked into the salon with.

Who To Ask About Cold Capping and Who Not To Ask

It’s probably worth sharing at this point the story about my post-chemo encounter with a well-meaning woman who worked in the cancer-wig space. (I wasn’t there for a wig consult. I mostly wanted to see if she had a pony accessory I could clip in to make it a little fuller, before I decided to make the big 4-month trim.) She suggested to me that I should just cut it all off down to the root and start over with a pixie cut. Her input to me (again, said very kindly) was “You really don’t have another choice.”

I left that conversation choking back tears. I got in my car. Had a good cry. And then thought to myself, “No, actually I do have a choice. I have an option to keep doing what I’m doing,” which at the time was wearing my pony and just waiting on the growth to happen in the areas I’d lost.

I have never once since leaving her salon that day ever regretted not taking her advice. In fact, I’m tremendously grateful I didn’t. (And if I could offer a word of advice to future cold cappers, be careful about whose counsel you seek when it comes to cold capping. Wig salespeople, chemo hair loss specialists, and even some doctors and nurses, who have extensive experience with cancer patients [likely] don’t have extensive experience with cold capping or the process of uneven hair growth once it’s all over. Cold capping is disruptive to the way they’ve seen things done for years. It’s not realistic to expect them to be an expert [or even all that well-versed] in this new technology and how to make it successful for you.)

As I told friends and family, getting my first post-chemo, post-cold cap haircut felt like turning a corner. Or maybe something bigger… reaching a major milestone. It was a lot of work, but it was worth it.

Here are the thoughts I jotted down for anyone who is at the 4 – 6 month post-chemo, post-cold capping phase:

Be patient with your hair after chemo is over. You’ve got a few months more of needing to baby it while the hair follicles recover. Don’t rush this process. It’s a small amount of time to wait to ensure you retain as much hair as possible.

Don’t panic over the short stuff coming in. You’re likely going to have enough to do like I did and eventually go short enough to even things up a bit, especially if you had long hair before. (Or maybe you’ll lose so little like my friend Margaret that you won’t have to shorten it at all!)

As always, take it ONE DAY AT A TIME. In the months from active chemo to 4 – 6 months post-chemo, I went through stages of wearing my bangs pulled back to cover my bald spot, to a low pony, to a short bob requiring a headband until the front hair line could grown in. (And later, I added/removed extensions. See below.)

One could argue starting from bald would be easier in terms of maintenance (not necessarily easier emotionally), but I wasn’t looking for easy in all this. I was looking to retain as much of myself in the mirror as possible. And I feel like I succeeded.


Post Cold Capping (Post Chemo) Hair Extensions

UPDATE #2: During the visit with my stylist pictured above where I got my first post-chemo, post-cold cap hair cut (at roughly 4 months out), we discussed hair extensions.

>>Very important note here for anyone considering cold capping or in the process now — Hair extensions are NOT recommended while in active treatment using a cold cap, nor are they recommended in the first 2 – 3 months after.

But after my stylist did an assessment on the strength/health of both my remaining (retained) hair AND my new growth, we discussed me coming back at the 5-month mark and putting in “a few” tape-in extensions at the bottom/back to fill out that thinning area you notice in the picture above.

>>Very important note here for anyone considering cold capping or in the process now — It’s really obvious to me now that the thinning you see was a result of wearing my hair pulled back too much AFTER chemo was over. Learn from my mistake. Wear your hair back as little as possible while you’re cold capping AND for the 2 – 3 months after.

While I was waiting to go back in between months 4 and 5, I also discovered that post-cold cap hair extensions (and even post-chemo hair extensions) are a real thing and LOTS of ladies get them! I was honestly SHOCKED at some of the transformations I saw online and on Instagram. So when I went in for that 5-month visit, I decided to opt for more, not less, in terms of extensions and longer, rather than shorter. Here’s what my extensions looked like initially (below):

I wore these extensions for about a month and then had them re-done. This is a normal part of the maintenance of tape-in extensions. As your hair grows, the extension grows with it until eventually, you have to have them removed and moved up to the base of the hair, right at the root. Here’s what it looks like when the extension is growing out (below):

>>A note about these types of extensions: These are tape-in extensions. There are LOTS of different types of extensions, but tape-in tend to be the least damaging to the hair. I was very pleased with the health and thickness of my hair when we took them out to redo them (at the 6-month mark). I didn’t notice any hair loss where the extensions were. So if you’re considering post-cold cap (or post-chemo) hair extensions, I highly encourage you to go the tape-in extensions route.

I learned in that first month of wearing hair extensions that I didn’t need *quite* as many as I had. (I still had decently thick retained hair in the back of my head thanks to the Dignicap Scalp Cooling system I used). So we put fewer in at 6 months and colored the extensions to match my roots/new hair growth. Here’s how they looked at 6 months post-chemo (below):

And here’s a quick video of the process:

To say I was happy with my extensions is an understatement. As I’ve said repeatedly to anyone who will listen, so much of my cold capping experience has been about control and having at least SOME sort of say in my cancer journey. Waiting on your hair to grow back out to the level YOU want after you’ve either lost it completely from chemo or lost some of it through cold capping is just one more part of the cancer experience you can’t control… or so I thought! Being able to recapture the longer hair I love — even if it didn’t exactly match my old hair and still had some *challenges* with the new hair growing in — was an absolute gift I did NOT take for granted.


Shorter Hair After Cold Capping & Chemo

UPDATE #3

I wore extensions until the 8-month post-chemo mark. While I loved the look of longer hair and the confidence it gave me during the shortest regrowth phase, the weather had started warming here in Georgia, and I could feel the tug to put them aside. Here’s what my hair looked like at the 8-month post cold capping phase (below):

(above) What you see is a combo of retained hair and new hair, with the retained hair being longer than the new hair. I only lasted a month dealing with that. It’s hard to explain why that’s a challenge. But it was for me. Maybe because my new growth was so very curly. It was at this point, I told my stylist to just “even it all up” and this is what I ended up with at the 9-month mark (below):

This was my least favorite phase (other than being in active chemo with major shedding, of course). I got lots of compliments on my short hair, but it wasn’t my personal favorite. I found myself exceedingly thankful to have thick & healthy hair. But I definitely enjoyed seeing it get longer, day by day.

What Hair Looks Like 1 Year After Chemo (with cold capping)

I told a friend yesterday that I’m in that phase now where my hair feels like it’s getting *bigger* faster than it’s getting *longer.*

And I’m okay with that. I’ve settled into a place of contentment and am just doing what I tell women who are at the start of their journey to do — taking it one day at a time and working with what I’ve got. Here’s what my hair looks like now, 13 months after chemo (below):

I’ll continue to update this post with more pics as time goes by. In the meantime, here’s a super helpful video I’d like to share with you that should give you insight (if you’re a chemo patient) into what regrowth looks like over a 3 year period. I loved being able to see what comes next!


Now that I’ve given you all the pics, it’s time for some tips. One of the things I needed most during my cold capping experience was helpful guidance. As I referenced earlier, there are really very few helpful voices in a cold capper’s life. It’s sad, really, how little support there is for women embracing this supportive care. I’ve jotted down these thoughts in the hope they help you or someone you know.

Tips for Cold Capping (Scalp Cooling) Pre-Chemo and During Chemo

Know that cold capping/scalp cooling will add time to your chemo session. That was told me as a caution multiple times, but honestly, I don’t think it’s as big of a deal as it’s made out to be. It’s not like you’re gonna leave chemo and go out partying. You’re gonna be chilling (pun intended) either at chemo or at home, most likely. I didn’t mind the extra time.

Be sure to have your chemo nurse or whoever is helping you (especially if you’re doing Dignicap like I did) ONLY place the protective headband on your forehead. Every hair that’s covered up by the headband is going to fall out, leaving you with a really receded hairline and some funky hair growing back in eventually. As I detail above, headbands hid this regrowth for me for months. But had I known then what I know now, I would’ve made this a top priority at every chemo session.

Not all cold caps require wet hair during treatment, but Dignicap did. Take this seriously, especially if you have thick hair like I did/do. That first treatment is the hardest to get your scalp cold when you have so much thick hair. The wet hair helps in this process.

If you have a significant amount of ice form between the cap and your hair, don’t freak out and worry that you’re going to pull your hair out by removing the cap. You can always simply leave chemo (once the cold capping is over) with your cap still on and wait for the ice to thaw.

Don’t fear the pain of cold capping too much. Pain killers are recommended and available if you need them. I didn’t need them. The pain of cold capping isn’t the worst of cancer treatment IMO by far. And most importantly, there are meds to help get you through it if it’s painful. (Again, mine wasn’t too bad.)

Tips for Cold Capping (Scalp Cooling) In Between Chemo Treatments

Use the horse tail method when brushing your hair. This will become especially important when you start your big shed (likely around Days 18-21). It helps to put less pressure on the root.

Keep your hair “untangled” but don’t obsess over the brushing. Some cold cap companies make a huge deal about tangling, but I never really found that to be an issue. You may, but don’t obsess to the point that you’re constantly brushing. Twice a day is enough.

Don’t save your hair to see how much you’re losing. BAD Idea. Throw it away or flush it as it’s coming out. This is a mental thing. Trust me.

Don’t pull your hair back. A low loose pony or very loose headband is fine occasionally but rely on it as little as possible. My hair fared pretty well during chemo (minus the bald spot on the crown, which seems to be fairly common). But I got a little too aggressive pulling it back once chemo was over and as a result, lost a lot of fullness in the sides and bottom, where the pony was pulling on the root.

Wash with the purest shampoo you can find. I used Native shampoo. (You can find it and a lot of the products I used during chemo in this Amazon Affiliate Oncology Aesthetics & Cold Capping Essentials list.)

In general, avoid products on your hair. Some companies say coconut or olive oil is okay if it gets really dry, but I found they just made it look greasy. I just went with the dried-out hair look. Remember, I warned you about bad hair days. You’re not given the choice to have good hair days in all of this.

Wash as little as possible and don’t scrub your scalp. Massage (in cold or lukewarm water) with the palms of your hands. Be very gentle. You’ll definitely see more shed when you wash. And remember, greasy hair days aren’t the worst thing in the world. 

Don’t use any heat tools on your hair. Air dry only. No curling iron or flat iron.

Keep the sweating to a minimum. Sweating = shedding. It’s unavoidable to a certain degree. But just be mindful of it. No hour-long walks in the blazing heat (although usually, chemo doesn’t exactly leave you wanting to do anything like that anyway, in my experience.)

Sleep on a satin pillowcase. It helps reduce friction on the scalp while you sleep.

If you’ve read this far, I’m assuming you or someone you care a lot about is either in a chemo journey or about to be. I wish you weren’t. But I do hope you know that I’m happy to help you if I can. Contact me here if you have questions. ~Regan

3 Comments

  1. Rosita Harder on August 3, 2022 at 4:40 pm

    Hi,

    What did you apply in your bald spot. Did you just leave it without any treatment?

    • thisunmillenniallife on August 3, 2022 at 5:05 pm

      I didn’t apply anything while I was actively in treatment and still losing hair. Once I stopped shedding, I used a little bit of root tough up spray on the short hair that had grown back in to just “buff” away the shine/scalp look. Does that answer? ~Regan

  2. Liz on June 27, 2022 at 10:50 am

    Thank you soooo much for posting about your experience! I’m about to start chemo and cold capping next week. It’s scary and emotional. I think I’ll be able to handle it better having a more realistic picture of what it can and can’t do. Thank you!

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