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What has been your experience with hair loss?

llhgrey
Posts: 16
Joined: Nov 2017

I am on day 13 after my first taxol/carbo chemo and I have not lost any of my hair yet.  All I have noticed so far is that my underarm hair growth has slowed down, and I have slight soreness in specific areas of my head.  What has your experience with hair loss been?  When did it occur, was it fast/gradual, etc? Thanks!

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

My hair began coming out just about two weeks after my first infusion.  That soreness you feel is the precursor.  I had that for a couple of days before I began shedding.  My infusions were on Fridays, and by day 15 I was shedding.  I shaved it down to about a 1/2 inch the following Monday because I didn't want to end up shedding more than the cat.    I don't remember how long it took for the rest of my body hair to go, but I know that my eyelashes and eyebrows were the last to go and they really didn't begin falling out til almost the end of chemo.

dgrdalton's picture
dgrdalton
Posts: 58
Joined: Jun 2017

My hair started coming out on day 16. I now have about 5% left. I did have my hip length hair cut and donated before it started coming out and shaved to 1/2”. I could not bear the thought of throwing it all in the trash. The spots on my head get very sore and tender a day or so before I start shedding in that area. I’m ready for it all to be gone and not have to pick little hairs out of my caps! lol

So 26 days for about 95% to come out. I have thin patches and lots of bald spots.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2564
Joined: Mar 2013

llhgrey, I clearly remember a pain on my scalp.  All I can equate it to was when I was young and would use a curling iron on my head and I was pulling the hair too tight and it would hurt my scalp.  For the 'pulling'  I felt during chem, and for quite awhile after it, I would just press on my scalp /head on those areas.  

It does seem we all seem to lose it differently.  I was just looking at the pictures last night from 5 years ago, and thinking about it, will add that you are going to amaze yourself.  What you didn't think you can do - you will, and we are here for you. 

Violet123
Posts: 26
Joined: Nov 2017

It was pretty traumatic for me. On day  17,  The day after my 51st birthday I started the shed. The scalp pain others are describing.  An hour after brushing my hair, it would feel matted as another bunch of hair was being expelled from my scalp.  i had been preparing, watching you tube videos on head scarf tying.  But nothing really prepares you for the massive hair loss.  The cancer center I go to gives out a wig, but I found out about that after the shed.  Then my scalp was covered with the bumps of folliculitis for a week and a half.

We do whatever we have to to survive this disease.  Hang in there.

Jairoldi's picture
Jairoldi
Posts: 202
Joined: May 2017

I began losing my hair on day 14. In anticipation I had my hair buzzed with a #3 guard on the clippers on day 10. I only experienced some tickling of my scalp. The length was just enough that I could give a slight tug at the tickly site and remove the hair along with the tickling. This went on for weeks. It was slow and not very traumatic. I actually went from long, to a bob, then the buzz so that my family and I could get used to it. Now 8 weeks out of chemo it is beginning to grow back. Patchy just like I lost it.

derMaus's picture
derMaus
Posts: 555
Joined: Nov 2016

Love the new picture!

Donna Faye's picture
Donna Faye
Posts: 229
Joined: Jan 2017

I had chemo 20 yrs. ago as well, so knew the drill. The first time I took a bunch of hair out of the towel after shower, went to Great Clips as  they give cancer patients free shave and cuts, and had it shaved. However, this time the hair came back much faster than before - and much more hair everywhere!!! Not sure I like that!  Several say the steriods they give now is what makes the hair return faster. Also have stronger nails than ever in my life.

llhgrey
Posts: 16
Joined: Nov 2017

Thanks for the info!  I have pretty much resigned myself to future hair loss.  I am not sure if I want to wear a wig, but I have bought a few cute chemo caps for when the day arrives.  I found Headcovers Unlimited (I found them to be a bit expensive) and a couple of stores on Etsy - does anyone have any recommendations for inexpensive chemo hat stores?  Also, what are your thoughts on wearing a wig?

 - Laura

derMaus's picture
derMaus
Posts: 555
Joined: Nov 2016

I never even considered a wig; I knew I wouldn't be able to tolerate it. I did check out a few specialty 'chemo' caps but found that ordering random hats online from Amazon Prime (boy did they lose money on me) worked better. I'm relatively tall (5'7") and have a big head/face, so I needed some volume to balance that out. I wound up with a bunch of slouchy beanies - think Zig Zag man - and found that having some extra fabric helped fill in the space where hair used to be. I also explored tichel ideas, specifically the volumizer from Wrapunzel, and got inspiration from hajib how-to videos on YouTube. I used stretchy headbands under the beanies to make sure they stayed in place, and bought (but never wore) the bangs on a headband from Headcovers Unlimited. I expected the hair loss to be bad but it wasn't afterall, probably because it was winter and I could pile on scarves and beanies so I could fake going for a specific look, rather than just piling on stuff so I wouldn't look as bald and moon-faced. I don't know if I fooled anyone else but I fooled myself, and that's what counted :)

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2564
Joined: Mar 2013

Laura, I was lucky that my company insurance would cover the cost of a wig.  I realize not everyone has that and after I could accept I won't need them anymore, and it took me awhile, I donated them to the local American Cancer Society.  I hope some woman, who couldn't afford one or whose insurance wouldn't cover it, enjoyed them.  With all that I wore them for work so people didn't focus on me having cancer and would listen to what I was saying.

On casual Friday I would do the t-shirt head wrap because I wanted to be comfortable.  (Tip for t-shirts:  Goodwill and look for the designer t-shirts - the color and feel is better)  The wig was hot and I never wore it on the weekends or at home.  

As I said, for me, it was looking 'normal' at work.  I do have a funny story though, I was on a flight going somewhere and a woman behind me said, "I love your hair!"  I thanked her and I told her it was a wig.  So I guess that kind of proved for me I looked 'normal' although I didn't feel the 'old' normal self.  

My two cents.  

llhgrey
Posts: 16
Joined: Nov 2017

I tried to psych myslf up for it - had my hair cut short, bought cute beanies, but I was still shocked and sad to see hair on my pillow this morning.  After my shower, I was so afraid to look in the mirror - it seemed that so much hair was coming out.  I am thinking of going to best cuts and getting it buzzed. I want to move on from this and focus on chemo and recovery, so I thought this might be a good way to do so.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2564
Joined: Mar 2013

Losing my hair was very hard for me.  I am sorry.  

A good friend asked me about the t-shirts I used to wrap around my head when I was bald and I found a good (short) video.  I will add you just need to smooth the fabric over the back of your head and twist the band before bringing it over the front of your head.  I would suggest looking for "designer" t-shirts at a goodwill as they have good colors.  Just measure 15" up from the bottom of the t-shirt and cut there.  A little practice and you will rock it.

https://www.youtube.com/watch?v=CP2JyDgql_0

CheeseQueen57's picture
CheeseQueen57
Posts: 791
Joined: Feb 2016

Last Thanksgiving my hair was just growing back. I was thankful for my hair this year. There are some advantages, it doesn’t take as long to get ready in the morning; you save money on hair products; you don’t have to shave your legs or pits. But my heart breaks for you. We’ve all been there and know how traumatic this is. All I can say is for me, it got a little easier every day. 

henhill's picture
henhill
Posts: 123
Joined: Aug 2016

I hated that... especially at the end when my eyeleshes and brows were gone Cry  I felt like a little mole.  My scalp always tingled and was cold.  I have lost a lot of hair, and it it nearly bald on top, but I did not lose it all with this weekly Taxol.

I hope you will weather it as best you can and be fine after, because my hair was the best its ever been when it grew back.

pinky104
Posts: 574
Joined: Feb 2013

The first time I had cancer, with carboplatin and taxol for chemo, I lost almost all of it on days 12 and 13.  It fell out in the shower, my pillowcase ended up covered with it, and the rest landed on my clothing.  I was very itchy from it.  The second time I had cancer, with carboplatin and gemzar for chemo, it was a much slower loss.  I never lost it all like I did the first time, but my hair was very thin.  It still hasn't come back as it should have, two months from my last chemo visit, but I've taken my wig off because I can't tolerate the way it rides up in the back.  I've found that some of the hair on top broke off this time, so maybe my wig pulled on it too much.  It's definitely more fly-away than it was before chemo.  I have to use my Perfecter to tame it down. 

bluesmama
Posts: 124
Joined: Aug 2014

My doctor was surprised I still had most of my hair by treatment 2. My scalp was sore in spots and it was getting difficult to deal with the shedding. I gently clearned my hair and scalp from that point. I also buzzed my hair. My hair growth was definitely slowing down and by cycle 3 it had stopped growing except my grey hairs! My grey hairs were indestructible with chemo! I didn't have many grey hairs going in though. Finally, before cycle 4, I rubbed my hair out. It felt like I had a crust of dandruff holding my hair on my scalp anyway. Very itchy. It took all night to rub it out and I used a lint brush to get rid of the tough ones. I was finally free of the itching and pain by the next morning. It was liberating. So by cycle 4, I was bald except for a few grey hairs that never fell out and I was bald for at least 2 months after my 4th and final cycle. My eyesbrows finally fell out after the 4th  but quickly grew back first. My hair has come back very bushy, more grey but more hair overall, wavy, and very black. I had very dark brown hair most of my life so my friends and family are pretty shocked by what I have now. Interestingly, the growth rate on top of my head is noticeably slower than my back and sides now. It's a struggle to keep it clean cut but I'm not complaining. I'm actually having fun with my wavy hair. It's just easier to style than the stick straight hair I had going into treatment. :)

 

Anne0803's picture
Anne0803
Posts: 15
Joined: Nov 2017

Hi All! I was diagnosed last year October 2016 followed by “Hysterectomy – Bilateral Salpingo-oophorectomy” by Laparoscopic Surgery".  

I started my Chemo treatment on December 20, 2016.  My hair started to fall on the 2nd week after the treatment and also my scalp was terribly burning.  I read that it's better to just get rid of it so I DID!  I wear BALD no wig throughout my treatment.  My friend who was a cancer survivor lent me her caps or soft hats for sleeping.  My hair grows back before the next treatment but of course fall off again on the 2nd week.  So I regularly shave it every shower.  My last Chemo treatment was on April 2017 and decided to grew my hair on June 2017.  My hair grew back evenly not in patches.

BTW I was 41 years old when I was diagnosed.  It never put my faith down and my positivity.  My friends told me they were blessed and uplifted seeing me with great positive attitude.  I owe it all to God... He is the one who gives me strength.

To all who are currently going through the treatment hang in there.  Eat well to give your body enough strength and also hydrate yourself.  Whenever food is not appealing to me.  I take chocolate power drink or I make smoothies and I add different fruits like blueberries.  Chemo drugs makes me constipated, I drink warm Prune juice every morning and that does the magicCool.  

 

llhgrey
Posts: 16
Joined: Nov 2017

Hello, and happy Friday!  I took the plunge and buzzed my hair on Monday, and it was the best decision!  I no longer obsess about losing my hair - I still have hairs on my clothes, etc., but it is far less noticeable.  My chemo nurse warned me about folliculitis, and she recommended rubbing coconut oil into my scalp daily to clear it up if it occurs.  I bought two pashmina scarves and I am practicing the tichel headcovering so I can look good for the holidays :-)

So, thank you all so much for your advice and support!  - Laura

evolo58
Posts: 293
Joined: Dec 2017

Well, now I know what to do with my coconut oil that's getting a little on the old side. Thank you for the tip!

Cherpear
Posts: 14
Joined: Dec 2017

This is day 14 after my 1st chemo. Yesterday when I was combing my hair, there were clumps coming out so I had my husband buzz cut it all off. Ironically, I had an appointment that day for a free wig. It's very nice but it makes me uncomfortable. I'm still in shock. My daughter said I look badass!

jodil
Posts: 42
Joined: Nov 2017

Started chemo om 12/6. In preparation, I got my hair cut short w/ a #3 clipper. I actually really liked it. BUT 3 days ago, I started shedding. Now my hair is coming out in my hand. That made me cry b/c I thought I could get away w/ the short cut. What I am going to do is go to the barber shop and have him cut a design, taking the rest of my hair down w/ a #1 blade and see how that goes. I googled ideas. If THAT doesn't, work, it's bald. for me.  

Wannabeatit
Posts: 97
Joined: Dec 2017

i will be starting my treatments in the new year. You are not alone. I will be right behind you.

barnyardgal
Posts: 204
Joined: Oct 2017

Had my second treatment two weeks ago and hair has just started to come out. Head itches but doesn't hurt. I'm on doxorubicon. It's just a little coming out so far so I'm hoping I can wait till day after Christmas to shave it but we'll see.

dgrdalton's picture
dgrdalton
Posts: 58
Joined: Jun 2017

It’s day 12 post chemo #3 and I still have about 1% of my 1/2 inch long hair left, mostly on top where it was the thickest. I mostly wear bamboo caps; they are so comfortable. 

Wonder when it will start growing back? That was my last chemo.

 

evolo58
Posts: 293
Joined: Dec 2017

I managed to keep most of it until Christmas ... one day before my second treatment (21 days apart, so that would be around Day 20). Then I tried on some wigs at the free boutique in the infusion station and BOY, did that undercap thing pull at my hair and yanking strands out! I suppose, though, that if my hair was that brittle, not trying on the wigs would have bought me two days more, at best. Still have hair covering most of my head except for a somewhat obvious small comb-over patch in the back. Losing more hair by the day, though, (I'm tending to shed more like a dog ... stray hair all over), so I wouldn't be suprised if I have to get that shaving late this week/early next. At least I got the "prep buzz cut" earlier in the month so I don't have stray longer hair clogging the tub. Unfortunately, losing so much hair while bathing has given me a fear of bathing now.

Never did get a wig there, by the way. Most of them were WAY too small on me. I have a larger head than normal! I guess if I want a wig, I'm going to have to shell out money for a custom one. Am debating on getting a purple-haired one. :)

 

jodil
Posts: 42
Joined: Nov 2017

did get my hair buzzed last weekewnd w/ #2 blade. Had her cut a design on both sides of the head. It was a little shocking but am getting used to it and getting alot of positive feedback @ work. Just don't want my head covered all the time w/ a wig or hat. It is pretty warm in my office and would get pretty uncomfortable. Even this short I am still losing hair so likely will have to go down to #1 blade soon. I just don't want to LOOK sick to my patiens so am putting alot of effort into making this buzzed haircut look intentional-funky jewelry, clothes,etc. Good for my self esteme too.

evolo58
Posts: 293
Joined: Dec 2017

The silky chemo caps, though, are pretty comfy. I wear them now sometimes (really don't want to start wearing them too much yet, though, until I lose more hair, since my hair is so delicate), and I often barely notice them. The bamboo-based ones are really light, though they seem to cost more. And they aren't hot.

After not one, but TWO bad experiences with wig-fitting, I really don't know if I'll go with them, unless I wear them for a dressy occasion. They felt awful to me. I can see why some ladies say they feel heavy and awkward. Maybe a better-quality synthetic wig makes a difference (I DEFINITELY can't afford the human-hair ones). I might want to shell out a few bucks and check out speciality stores in the area.

Kind Les's picture
Kind Les
Posts: 24
Joined: Dec 2017

As a person who never left the house unless her hair is done for years, it was something I was not looking forward to. I had a hard time dealing with people looking at me. I never had thick hair, it was always baby fine hair, wearing a wig felt costuming me and it is not me. I did get one and  wore it a few times, everyone else loved it, it was just a TON of hair for me. I got away with short cuts, pixies, and I never wore a hat before and I like those. It makes a not so great hair day, ok :) I also went to a look good feel pretty class that I found on this site and the volunteers are awesome! They can teach you how to do simple scarf wraps with cutting a t shirt and twisting it in fun ways you would never know what it was but looks cute. Chemo cocktails are different, I have the unfortunate experiencing, to relive losing my hair more than once. this time it is not so drastic. My sister who went through treatment at the same time had lost all of hers fast, but she is beautiful with out with out hair in my opinion. Hers grew back thicker and gorgeous. Mine did come back a little bit thicker but, I have not stopped treatments yet to see, I just know it will get better. 

CheeseQueen57's picture
CheeseQueen57
Posts: 791
Joined: Feb 2016

I had about 4 wigs but they were all uncomfortable and rode up in the back. I always thought I was a “bubble head”. I had a hat with hair. That was alright but not all that comfortable either. My favorites were turbins. I had a hat that had a scarf attached that I would wear to the beach and I would rig up something for the boat. But my very favorite was the turbins. They didn’t require any special folding, were not real hot, easy to wash, different colors and stayed in place. One of my friends called it my Joan Crawford look. 

Soup52's picture
Soup52
Posts: 900
Joined: Jan 2016

I believe losingour hair was one of the hardest things, a visible sign of our cancer. I purchased a more expensive wig that looked a lot like my own hair only thicker . Since my hair loss was during cooler months the wig didn’t bother me. When hair started growing back it was summer and I went without anything or just hats. I was surprised mine actually didn’t look bad short. If I should ever have chemo again I don’t think I will try to grow it out beyond a pixie. The growing out has been a pain for me. Unrulely curls and layers. Above all we will survive:)

evolo58
Posts: 293
Joined: Dec 2017

Well, the time came. Kind of. After seeing a huge baldish spot on the side of my head, it was time to get a shaving, I thought. Problem is, I didn't expect the razor to freakin' HURT. My scalp was always really sensitive, and between that, being fuzzy-wuzzy and the chemo, it smarted every time he tried to closer-shave it.

So both the hairdresser and I agreed to cut it just above totally bald and lint-roll the rest off. From what I'm reading here, it might be the best way for me to go anyway. I look like a plucked chicken, but at least I'm shedding less after my daily routine of a few passes with the masking-tape lint brush. It was getting a little annoying losing strands of hair every time I sneezed!

Interestingly, my hair does NOT go total bald for long once it falls out. At least not now (I have one more chemo next week, HOPEFULLY before surgery, will take a break for a few weeks to recover from surgery, then I have to resume chemo for three more sessions). I have a fine downy covering where the initial hair started coming out a week or two ago. The hairdresser didn't want to disturb that, either. So lint-rolling daily it is! 

llhgrey
Posts: 16
Joined: Nov 2017

Thanks to everyone for sharing your stories and advice!  I just finishes chemo #4 of 6, but I have not lost all of my hair, as expected.  I have a thin layer of peach fuzz all over my head.  I have started losing my eyelashes and eyebrows, and my legs and arms are bare.  I decided to forego a wig, and wear beanies and scarves (pashminas and pretied).  I found it quite enjoyable to shop for cute designs to match my outfits - Amazon has a lot of affordable options.  If anyone just beginning their chemo would like links to the products I bought, just DM me.

Anonymous user (not verified)

My husband, on Day 17 today after first RCHOP "hit".  Yesterday was the first day he told me his head felt "sore", circumferentially.  It's starting to thin (obvious to me, not so much to him) . . . but after reading everyone's comments . . . from what I understand, this is the beginning of the end to his headful of hair.  I was searching the site for info on what this scalp sensation meant, so was grateful to find all of your shared comments on the subject.  THANK YOU!  We've been scheduled for a "buzz" cut this coming Tuesday, so I'm thinking the timing of that appointment was spot on, from the sounds of things.

So grateful for everyone's comments on this topic and so many others!  It has helped us prepare for what we'll probably be seeing.

Can anyone tell me if you recall, on your own journey through all of this, whether or not the doses of your chemo initiated more side effects as treatment progressed?  We will be going in for "HIT" #2 this coming Thursday and have read that with each one . . . things tend to surface more.  I'm thinking it may be due to dose increases . . . on our list of questions for the oncologist, but was just curious what others may have found along the way.

THANKS again, everyone!

barnyardgal
Posts: 204
Joined: Oct 2017

Side effects did worsen for me with each chemo. I had a different chemo than many here. I had adriamyacin and carboplatin rather than than the Taxol and carboplatin as I had allergic reactions to the Taxol. I was nauseous and tired the first week or so. Each time it did worsen along with my blood counts diving. After #6 I stayed nauseous and my counts were too low to get chemo. I was really tired and out of breath. So the Dr had me finish radiation first and I just had #7 Friday. First chemo in 3 months and my hair is coming back like crazy.Protocol for the chemo I'm on is 6-8 treatments and the doctor had me expect 8 but #7 may be the last one. In spite of the side effects it is doable. Just be kind to yourself and rest when you can.

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