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Losing my hair

SusieP123
Posts: 5
Joined: Dec 2011

Well, I lost about half my hair today. It came out as I brushed it. My hair is three feet long so it left quite a pile on the floor. I asked my daughter to come tomorrow and shave my head. O my God. That's if any more comes out tomorrow. I know, denial, right? My head feels strange, like it's sunburned. I don't think I will get a wig, it's not really my thing. I may change my mind. My daughter had the idea to sew hair extensions to a do-rag so I can wear that under a hat. I think this is hilarious. If you could see me, you would know why. Most people think I am Amish, as my faith is very similar. So that's why I am traumatized about losing my hair.

MAJW
Posts: 2515
Joined: May 2009

Two and a half years ago, I had the same chemo drugs..I was told to expect my hair to start falling out 14 days after the first infusion...day 14 exactly it came out....but beforehand, I had my hair buzzed to the scalp...the next day I shaved my head ....I had bought mt wig before I had it buzzed so they could see what my real hair looked like....it was awesome! As recommended by my hairdresser of 20 years, and where I bought the wig to buy a synthetic wig..wash and wear as opposed to a human hair wig, which has to be styled the same as your own hair, to much work when not feeling your best...from my understanding, it is very expensive to have a human hair wig made and takes weeks! You could, as long as it's not colored, donate your hair to Locks of Love...they make wigs for children who are undergoing chemo...

With your hair as long as it is, waist length, I, personally, would cut it before it starts falling out, otherwise, you'll have hair EVERYWHERE!
and remember, it will grow back once treatment stops....

I wish you the very best as you start treatment....

SusieP123
Posts: 5
Joined: Dec 2011

Hi thanks for replying. I haven't cut my hair is thirty years and I am horrified at the thought. But does is all fall out at once? Will it come out in the shower? I can't bring myself to cut my hair..I have been joking with my family that I will keep it in a Ziplock bag for future use. But inside I feel like crying.

MAJW
Posts: 2515
Joined: May 2009

And I am so sorry you have to deal with all of this...as I said, on day 14 when I was in the shower, I was washing my " buzzed" hair with baby shampoo.(..easier on the scalp...) I had my eyes closed and couldn't understand why the water was pooling around my feet...opened my eyes and was horrified when I looked...buzzed hair was clogging up the drain and my hands looked like a gorilla!!!! When I got out, my buzzed hair was completely gone on the left side of my head...I won't lie, I sobbed into my husband's shoulder...then shaved it all off the next morning...it is traumatic but shaving what was left gave me a sense of control over what was happening to my body..as I had no control of getting bc...I am now dealing with a recurrence...I was surprised how quickly I became use to being bald....also, sadly you'll lose most of all body hair...I hated losing my eyelashes, I didn't lose my eyebrows, but they did thin....one good thing, didn't have to shave my legs or underarms for months!!!!

As traumatic as it is to lose your hair, try to look at it as a small price to pay in saving your life....by all means, save your hair! But I still say, it's best to at least cut it short before day 10 as some start sooner...(don't be surprised if your scalp is tingly and sore at first but that goes away quickly) As I said, otherwise you'll have hair everywhere!

Wishing you well...and sending hugs!

Rague
Posts: 3305
Joined: Aug 2009

My hair was almost to my waist when I was DX. I cut it into a gypsy shag almost immediately (I had 17 days between DX and TX) - why I'm not sure. Looking back I should have just cut it real short so I could send it to Locks of Love (wigs for children) but I didn't.

Day 13 hair was coming out in clumps and day 14 we had a shaving party at the barn - Son ran the horse clippers on me and then he and hour 'other sons' (his friends who call me Mom) all clipped their heads in support of me.

Synthetics are the way to go. The modern ones are great and you can get them in long styles - one of mine is fairly long the other very short. Real hair wigs are a lot of work - more than your 'natural' hair and while going through chemo more work is not your friend. I don't know what today's prices are but back in the 1970's one of my customers had a wig made from her hair and it was several thousand dollars then.

Susan

grams2jc's picture
grams2jc
Posts: 756
Joined: May 2011

My hair lasted until approx. day 23. I had cut it 2 times prior to then and had gone VERY blonde because I knew it was going to come out so what the heck. I went for a human hair wig, had my stylist "do" it every couple of weeks and that was all it took. She cut and colored it so it looked very much like my hair did prior to dx, I actually found it on line on sale and was satisfied with it. I bought some "bangs on a bra strap" from the TLC catalog to wear under stocking hats and Santa hats so It looked like I still had some hair. Glad my hair is back now 6 months after last chemo, but it did come back in really dark and very curly.

Good luck, the falling out stage is a pain, and at first your head is cold...but you get used to it.

Jennifer

shinning_like_me's picture
shinning_like_me
Posts: 23
Joined: May 2013

I too got a wig for my mum in law who was getting all her hair ioff after the treatment. I ordered from

Indian Remy hair

They are so natural lookinh human hair wigs, sHE REALLY LOVED IT AND WAS SO HAPPY TO HAVE THEM AND LOOK EVEN MORE PREtiert than before she was so happy and we  all were even more happy that she is all delighted once again in life.

Imadandy's picture
Imadandy
Posts: 12
Joined: Nov 2011

I was on a different combination of chemo to start with but I began losing my hair about 12 days after my first treatment.

I had just finally grown my hair long, so I was pretty upset at the thought of losing it. However, all the advice I read said to cut your hair short before losing it to kind of get yourself used to having shorter hair, so the loss of it would not be as shocking. I had my beautician cut it into a short shag like in the picture I'm using on here. I'm really glad I did. I also used and still use Baby Shampoo because it is easier on the scalp. When my hair started coming out, it began coming out in clumps in my hands as I washed my hair. At first it was a few strands here and there. The second day, the clumps were bigger and in a larger number. By the third day, the clumps just kept coming out as I tried to rinse the shampoo out. I cried every single one of those days in the shower. On the fourth day, my drain was clogged, I couldn't untangle the hair from my fingers and it was sticking to the shower walls. That was it for me. I couldn't start my day every single day crying over something that was totally out of my control. I asked my husband to shave my head that night, which he did.

I have not regretted that decision for a moment. To start your day every day upset when you are already dealing with so much emotionally and physically is just horrible and unnecessary I felt.

I am now on the 2nd chemo regimen, Taxol, and have begun losing my eyelashes. My eyebrows are thinning out also. It is upsetting, especially since I opted to not get a wig. I wear scarves. I wanted a wig in the worst way at first but then decided with the hot flashes I now get, I was afraid I would spend money on something that would be too hot to wear.

I had a really hard time with the hair loss. I cried a lot over it. I already lost both of my breasts and now I have no hair or eyelashes. I feel like I lost my identity. However, I agree with the statement in the reply above that it is a small price to pay to save your life. That's how i try to look at it.

I'm sorry for writing a novel, but I really feel that if you can get yourself to do it, it would be in your best interest to get a shorter haircut. It really is hard and with long hair, I really think it will make it that much harder for you when it happens. Like mentioned above, Locks of Love is an awesome organization and you would be helping children have hair. I tried to do that with mine, but mine was not quite long enough.

Good luck with your treatments. One day at a time, one treatment at a time...and we will get through with this journey. I look forward to that day!

Take Care and best of luck to you!

Tracie

chenheart's picture
chenheart
Posts: 5182
Joined: Apr 2003

((((((hugs)))))) to you! I think the "hair thing" is so very traumatic~ it was for me, anyway. This is my 2nd time at the chemo party~ I knew what to expect, but I admit I don't like it this time any better than I did they first time! NO one seems to care but me~ but we are the ones who live in our skins, aren't we? My husband doesn't care, my daughters don't, and the 2 year old grandbaby thinks I am a rock star come to life...well, if your idea of a rock star is Calliou on the Sprout network~ he is 4 and also has no hair, though it is NOT cancer/chemo related! Aliyah loves to rub my head, and I lean forward while bathing her and she puts bubbles on my head and laughs delightedly. That having been said, I don't live in my house 24 hours a day~ I do have to leave every now and again and I HATE the "You Have Cancer" beacon which shines on my bandana'd head!
You have gotten good advice from the Kindred Spirits here on the boards~ as the hair loss is an internal reaction to the chemo, no amount of TLC will keep it from coming loose~ I too suggest you ( yikes) go ahead and cut it off now. In about 2 weeks , you may notice your scalp is extremely tender~ rather like a ponytail too tight and left in too long. That is for many of us the sure-fire give away that we are about to lose hair Big Time. If you give it a slight tug, without any pain your hair will come out in hunks in your hands~ and it will be everywhere~ pillow, clothes, bathtub, kitchen...everywhere. Not a good thing at all.
Feel free, if it happens to you, to mourn your hair loss~ no shame in that at all. And then well, move forward~ scarves, hats, wigs..and include in that cap to sleep in~ it is COLD sleeping bare-headed.
I won't tell you "It's only hair, it'll grow back"~ it will indeed grow back, but it isn't "only" hair. As others have mentioned, anyplace you have hair, eventually you won't~ and yes, I mean everywhere. It is the oddest thing ever!
Just know there is no right or wrong about the reaction to hair loss~ some embrace it as no big deal and proudly go as GI Jane or Sinead O'Connor! Others hibernate, or wrap up in protective covering, as it were!
And, the ACS has a FREE program called Look Good Feel Better~ it teaches us baldies how to use make up and wigs, scarves to our advantage. I am going to a class in a few weeks~ REAL cosmetic companies such as Clinique ( as opposed to RiteAide brand) donate between $200-$300 worth of cosmetic to each woman participating! It's a great deal!
Hang in there, Kindred..and know that the chemo is doing battle with the beast and hair loss is one of the prices we pay. Abeit temporarilly.

Hugs
Chen♥

mamolady's picture
mamolady
Posts: 795
Joined: May 2011

Susie, my hair wasn't nearly as long as yours. It was well past my shoulders. When it started coming out in handfuls in the shower I started to cry. As soon as I got out of the shower, I called a very dear friend and asked her to come over and shave my head. I couldn't bear having it falling out like that. She saved a pony tale for me then finished t******** then shaving my head. That was so much easier than it falling out.
Some people just go with a short cut others let it fall out. Everyone is different.
Nothing is weird when it comes to cancer. What ever you decide though, you probably don't have a whole lot of time.
Good luck,
Cindy

Melaniedoingwell
Posts: 80
Joined: Nov 2011

Been there, done that!! Even if your hair were short (mine was)- you will still have hair everywhere when it starts falling out. I had to lint roller my pillow every morning until I went ahead and had my then thin, horrible, made me feel at death's door to look at hair shaved off. I finished my chemo cocktail (Taxotere, Carboplatin, Herceptin) in July and I now have my hair growing back in. I am SOOO excited and happy to have hair growing back in!!

You may, indeed, feel really low about the hair loss. Up side - you won't have to shave your legs! Up side - it WILL grow back.

There are scarves and hats and turbans that can be worn to keep your status mostly hidden. (Not to give them a plug but TLC has a website AND you can even find cute things on clearance there)

You can do this - even when you feel certain you cannot; Yes, you can.

SusieP123
Posts: 5
Joined: Dec 2011

Thanks to everyone who responded to me. It is day thirteen and today I had strands of my hair come out after shampooing my hair. Otherwise, my hair seems pretty snug to my scalp. Does it come out on day 14? This is what I've heard. Also, I have stage IIb cancer, and I have a lump in my right breast that is about 5 cm. Im having chemo, then either a lumpectomy or a mastectomy (depending on whether the chemo reduces the tumor). After that, more chemo, then radiation. I have estrogen negative receptors, so no Tamoxifen for me. Does anyone else have that diagnosis?

carkris's picture
carkris
Posts: 4523
Joined: Aug 2009

there are many others who have estrogen negative cancers.
I did not suffer much trauma from losing my hair. This was also my second time at the party and the first time it thinned and came out in my 8 month old daughters hands and it was a mess. This time it started to come out around day 14. My husband was really anxious about me being upset and wanted me to get it buzzed right away. I did it when I was ready. I went to the salon that made my wig, and they buzzed it in a private room. this reflects how I would be. then I walked out with my wig. It was half hair and half synthetic. Unfortunatley I didnt do that well on chemo and rarely wore it. My eyebrows and eyelashes fell out during taxol I did not like this at all. I did feel a loss of my identity. I lost a great deal of weight so I was straight with no curves, no hair and no boobs. I did not feel feminine. But it was ok, I am me again although I would now like to shed some weight Ugh back to that. My hair grew back curly and dark, was sandy colored and stick straight. two years later it is still wavy. Now I get to see how the other half lives.

SlowRollin's picture
SlowRollin
Posts: 75
Joined: Nov 2011

Hey Susie,

Your dx is similar to my wifes, she's also just a few treatments ahead of you. We just finished our 7th round of Taxol...hating it, but pushing through. Her hair started to thin out on the 14th day and we were at the wig shop cutting it all of on the 17th day. It was coming out in clumps in spots, very strong in others. There's a blog in my profile if you want to see my wife's treatments. She left the wig shop with a few hats and an elastic band with hair below it, so no wig on the top of her head. She doesn't like the way it feels and she only wears the partial with with her hat.

A few eye lashes have fallen and eyebrows have thinned. The weight gain is annoying to her, but the hair loss has been the most traumatic. I kiss her pretty head every day before I go to work and every night before I go to bed. I pray you find your way through all this and know that it will pass and you will thrive.

All my prayers,

T.

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