Hair loss...

DarleneM · 06-02-2009, 07:25 AM

Hi everyone,
Well, its been two weeks since my first TCH and today I can say the hair loss has definately started. I was wondering for those of you who were on this regimen, how long was it in between the start of the hair loss until it was pretty much a goner?
I have been feeling really good the last few days, almost back to normal. The first week I was tired, had that burnt tongue feeling,(which I can live with but is very annoying), and my stomach and intestines were off. But I really didn't get miserably sick.
Anyway, I would appreciate if any of you could share your experience with me on the hair loss. I think I would feel a little better just knowing what to expect, although I'm sure its different for eveyone.
Thanks,
Darlene

Ellie F · 06-02-2009, 08:27 AM

Hi Darlene
I started TH on 6th May and had my second dose on 27th May. I started losing my hair 14 days after my first dose and it has continued to fall out daily. I estimate that today I have about 25% left.
I have had very similar side effects to you except that I have had a rash on my neck and a two red patches on my cheeks which I'm told is common on taxanes.
I have been wondering how many of the side effects have been due to the dexamethasone..
Hope this is some help
Thinking of you
Ellie

chrisy · 06-02-2009, 10:20 AM

Hi Darlene,
I had TCH and although it was a while ago, I remember that once it started going, it was pretty quick. Some would (and did) hang on, but not enough to have it look "normal". For me it was easier emotionally to just surrender the hair rather than prolong the stress of having it fall out anyway!

It's tough emotionally - a reminder every time you look in the mirror. Even though we KNOW it's only hair, and in the grand scheme of things, not all that important...it IS important. You will find your best way of dealing with it.

Some people are able to really embrace the bald thing; it was not that way for me. I ended up mostly just wearing hats (I work in a place where actually a lot of people wear ballcaps!) and for special occasions I would "wear hair". That was most comfortable for me. I also had a bunch of cheapy wigs of various styles and colors - that was actually kind of fun cuz I felt like a spy in disguise - and one really expensive one for REALLY special occasions.

About the best thing was, in the summer I could just slather my whole head with sunscreen without worrying about getting it in my hair...

Good luck - TCH is a great combo and I'm glad you are tolerating it well. I was never sick the whole time on chemo, but i did feel burnt as you say.

Chris

CindyE · 06-02-2009, 11:44 AM

Darlene,
My hair started falling out abut 21 days after my first chemo. I shaved my head at about the 4 week point as it was falling out so bad. I had my dear husband cut off my hair when I knew that it had to go. It gives us control and a feeling of being in charge of something with this cancer battle. So when it feels right, do what you need to do to feel that you are in control and not the cancer.

I too had that burnt tongue and mouth issue for a few days after chemo but then it would go away. Take care and I will pray for you to have peace as you continue with this fight.

Chelee · 06-02-2009, 01:20 PM

Hi Darlene, I did TCH also & I believe it was around day 17 my hair started falling out. Once it started it slowly continued to fall out for the next 4 or 5 days. Came out in small clumps. (I was stuck in the hospital so I didn't have the option of shaving it off or I would have.)

Best advice would be to shave it off before it starts falling out. I really believe that is the easiest way to deal with it emotionally as Chrisy said.

If you continue to have problems with your stomach mention it to your oncologist. I had severe indigestion & stomach problems. My onc wrote me a script for Protonix then I was good as gold. I'm glad TCH hasn't been to hard on you...its a great combo. Hang in there...before you know it this will all be behind you.

Chelee

Bill · 06-02-2009, 02:31 PM

Hi Darlene! Cindy read my mind and stole my post! My wife, Nicola, had really long, red hair and had it cut off and donated it to "Locks of Love" and then when it began to fall out, we cut it close and then shaved it. Like Cindy said, it gives you control over the situation. I know, as a man, I probably shouldn't comment too much on the hair issue, but maybe it would be a little easier to do it this way than to wake up every morning for weeks and find more hair on your pillow. I know Nikki was saddened by the day or two when she kept finding hairs on her pillow and the sink, etc., but after she decided to cut her hair really close, she didn't have to deal with that aspect. My prayers and best wishes are with you. By the way, you have a beautiful family. Love, Bill

Gerri · 06-02-2009, 03:41 PM

Hi Darlene,

I did not have TCH, but lost my hair to AC/TH. Like Chris said, even though we KNOW that it just hair, as a woman, it is a huge part of who we are. I too shaved my hair off as soon as it started falling out. I remember shedding a few tears on the way home from work that night thinking about what I would be doing, but once it was done I felt so much better. It was a bit startling every day to look in the mirror and see the new bald me; I can't say that I ever got used to it, but I certainly learned to put it into perspective. I had a wig, much like my hairstyle and wore it to work everyday. For me, that was my way of feeling as normal as I could while going through treatment - you will find what feels best for you.

Best of luck as you continue with your treatment. I am happy to hear that you are tolerating it well.

All my best,

DanaRT · 06-02-2009, 04:09 PM

Hi Darlene, Like you I wanted to know others experiences. My hair was gone by day 20 (I had the TCH regime too). It began to come out faster everyday. My neighbor had just shaved her mother's head (a BC survivor) a month or two prior so she felt uneffected by it and I had her shave my head. Once it was over, it was a relief. Later in the day I felt like my friend did not get a close enough shave so I walked in to my salon. I think they were a bit stunned but then I got a really close shave. I put a hat on with really cool earrings and went to help run my 16 year old daughter's high school swim meet. I just "put it out there". It felt good and I kept reminding myself I was on my way to being healthy.
I choose to go bald or wear a ball cap, wigs never felt quite right.
After every TCH I was "down" on day 3 and 4 then began to feel better.
You will do well, allow some down time.

Take care,
Dana

Darlene Denise · 06-02-2009, 06:25 PM

Hi Darlene: I did TCH last Jan thru May and the hair started shedding about two weeks in and I got tired of hair all over my bed plus it made my scalp very tender, so, my husband buzzed it off and it felt much better.

My husband owns a hair salon "Flair for Hair" and I sure didn't like being Flairless and Hairless at the same time!

If your scalp is tender, I found a satin pillowcase (or you can put an old slip on the pillow) helped a lot.

I hope you are on an acid reducer daily ie Protonx, Nexum. I found taking Lactabacillius to replace the good bacteria lost from chemo in the GI tract helped as well.

My hair came back slowly due to the continued Herceptin, but it came in thicker and now it is wavy instead of stick straight.

Good luck with your treatments.

Take care...Darlene too!

Laurel · 06-02-2009, 07:25 PM

Darlene,

I echo what most have suggested, shave when you cannot tolerate the shedding! I felt like my dog shedding his winter coat. It was itchy and awful, so I took the dog clippers and went upstairs to the bathroom and shaved my pate!

Funny thing was how many men would tell me how "hot" a look it was! I'm serious, Darlene! They were serious, too! I wore my pink Green Bay Packers baseball cap unless I was out in public, then I did the wig thing. It was a good wig, so no one ever suspected it was not my hair. What was most fun was swimming in the pool without anything on my head. It felt wonderful! Like skinny dipping!

Hang in there! It seems like it will never be over when you first start, but before you know it you are finished! May the time fly for you, and may you be able to find some zany way to smile through the indignation of chemo!

alicem · 06-02-2009, 08:11 PM

I started my TCH on Jan. 20th of this year. I never had clumps of hair on my pillow when I woke up even though I kept looking every morning thinking this would be the day. Finally on day 17 as I ran my fingers through my hair, about 50 hairs came out instead of the usual 5. It soon became my "new trick" to impress (or gross out) my friends! By about the 4th week after chemo, I had less than 25% of the hair on my head and was tired of the way it made me look. Besides there was too much hair on my head to make wearing my wig comfortable. So, off it came. A friend who is a hairdresser came to my house and shaved it off and I never looked back. I like to think of all the money and time I have saved. Haven't spent one dime at the hairdressers, or on hair color or shampoo and conditioner. I can go for a last minute workout, shower afterwards and be ready to go in less than 10 minutes because I don't have to do my hair. I took pictures of that day and was even brave enought to post them with this reply. I got a message saying they needed to be resized. If I can figure out how to do that, I will post them at a later time!

My hair never did all fall out, and I never lost my eyebrows or eyelashes. About 10% of my hair kept growing back even though I shaved 2 more times after the initial time. Finally I gave up and let it do its thing. I had my last chemo almost one month ago and you can now see color on my head other than pink. I think what bothered me more than anything was losing my nose hairs. The herceptin seemed to make my nose run and there was nothing standing in the way of the drips!

I'm thinking of you Darlene as you go through this. You will be stronger because of it.

donna77 · 06-03-2009, 06:35 AM

I was on a different chemo regime-AC. I found after 3 weeks of chemo it was hopeless to try to keep my hair without clogging my bathtub drains.... so I had a beautician shave my head. I mostly wore hats at home and wigs when I went out. A useful hint- if your scalp hurts take a sticky lint roller and roll it on your head! All the loose nubs will come out and your head will feel sooooo much better!

WomanofSteel · 06-03-2009, 09:19 AM

I echo what the other gals have said, shaving is the thing to do. It feels odd at first, but after a while it feels quite normal.

Jean · 06-03-2009, 09:20 PM

Darlene,
First ....your daughters are beautiful.
Like many of the others my hair started falling out in clumps around day 21....I just felt that was annoying,
showering watching the hair dropping and besides it hurt like heck at the roots.

So off I went to the salon and had my head shaved.
It felt good and yes there is a sense of power being
brought back into our lives. I remember saying to myself, "Well cancer may take away my hair for a little while but I am going to kick it to the curb" and you will too.

For some the hair is a major emotional loss. It was not for me...because at the end of the day....it will grow back ..I viewed it as a limited set back.

Best wishes during your treatment.
Jean

harrie · 06-03-2009, 11:53 PM

Darlene, I believe mine started falling out significantly on day 11. I decided it would be a good idea for me to buzz it really short so the loss of hair would be be so dramatic. It was rather traumatizing for me to see the hair falling out even if I expected it to do so. By buzzing it, I felt more in control of the situation AND I was surprised that I didn't really all that bad at all with super buzzed short hair.
I ended up getting a really good wig which I LOVED too!!
It looked identical to my real hair. In fact no one could tell.
Take care.

NYSunshine · 06-04-2009, 06:26 PM

I applaud everyone on this site as it seems we have all traveled the same road and we are the stronger for it! Yes, I too lost my hair around day 11 as it was coming out in clumps and I was not happy thinking of that poor drain being clogged so off to the salon I went. My long-time hair dresser and I had fun with the the 'shearing' of the hair and my wig was placed on my head before I walked out of the door. Same hair style, same color as my own! No one would have guessed what had happened in that salon! I'm glad Darlene that you are not having severe side effects - just remember to keep up the protein for healing and strength. You are so fortunate to have this community beside you as these voices are of experience not just medical knowledge. I wished that I had been more stronger mentally to come to the computer earlier in my chemo days so that I wouldn't have been traveling the journey alone. We are with you all the way! Our prayers for you are said o
ften!

harrie · 06-04-2009, 11:59 PM

I was so lucky. My wig arrive within days of when my hair started falling out. As luck would also have it, I had a hair apt for the next day. So I also took my wig in on the day I had her cut my hair SUPER short and she also styled my wig. so I, like you NYSUNSHINE, ended up walking out with the same style I had (but better) before it all got chopped off! I really wasn't such a bad experience. Not like I would have imagined before it all happened.
I also wish I knew of this site earlier in my bc journey. Sure would have helped a lot. would have reduced a lot of stress....

DarleneM · 06-07-2009, 05:06 PM

(Trulan here) Thanks so much for all your caring responses. I thought I would update you a little on how Darlene is doing. She still has enough hair to look fine but we doubt it will stay that way for long. She washed and combed it this morning, getting ready for church, and thought about taking the wad along to show one of her friends "just to make her freak out" - She's got a pretty spunky attitude about it. But the idea of shaving it hasn't quite sunk in just yet.

I think the idea of her losing her hair is actually harder on our family and friends than it is on us. For one thing, Darlene's 'little' sister is getting married in July and everybody wants her to have her hair for the wedding. People have told us that they are praying she will not loose her hair, and of course there are the ever-present third-hand stories of someone who had chemo "the whole works" (whatever is meant by that, they don't know) and kept their hair throughout, either by drinking something, doing something, or just having faith. I'm thinking, "Forget the hair, let's smash this cancer! Pray that the cancer will be completely obliterated!" But somehow it seems hard for those around us to see it that way.

I know we are going to let down some loving, well-meaning people and I hate that. (It's not really fair to have to try to keep the hair to avoid letting people down, but that's the way it is.) I know that it would be easier and more manageable to shave off Darlene's hair and be done with it. I guess we're just not quite okay with that just yet.

Laurel · 06-07-2009, 05:45 PM

Trulan & Darlene,

Hair is a woman's crown of glory and we certainly do fuss on about it, don't we? Still, in the broad scheme of things it's only hair. I do not think you should feel that you must shave your head to be taking controll of your situation as so many of us have suggested. It is what worked for us, but I know many men and women who did not shave their heads during chemo. They were content to allow things to run their natural course and that was perfectly fine for them.

I do recall during my infusions I would see a young woman whose hair was noticeably thin, but she did not wear a wig or scarf. I happened to be placed next to her one infusion and was goofing around by pulling off my wig to reveal my ultra ball head. I saw her watching and laughing along with the nurses. We chatted quite often thereafter. I did notice that from that time on she wore a wig. I think seeing how good a wig can look as well as seeing how good a bald head can look on a woman encouraged her.

As for feeling as though you will disappoint all us well-meaning but sometimes insensitive Christians, I say do not wrestle with that! As hard as it is to accept, I believe the Lord uses chemo to heal us of cancer, and you are correct in focusing on the battle of cancer killing. The hair grows back. Cancer is a humbling experience, but one that everyone who has made the journey will tell you has changed them for the better. We didn't ask for cancer, but there is life in abundance after you get through to the other side.

I purchased a wig from a quality wig manufacturer. It cost around $250 which was covered by my insurance company. I chose a style that was similar to mine and the color was matched perfectly. No one new it was a wig. No one. I liked being without it at home and among friends and family, but was always glad to have it for public appearances!

Hang in there. This too share pass.

harrie · 06-07-2009, 06:08 PM

Trulan, please keep in mind that there are some amazing wigs out there, synthetic or real hair that can look as good if not better then her real hair! And they are very comfortable to wear.
When I went to look for my wig, the first step was deciding on the color and texture. They had all these swatches on display. Then I had my head measured and it was sent off to be made. when I got it back, I just took it to my beautician and she styled my wig to exacly how I wanted it. The wig is made of virgin hair which means it was never dyed or permed. You can do whatever you want to the wig once you get it: cut it, color it, highlight, flat iron, etc....
Also, this may not sound like a big difference, but she can just cut her hair really short, not necessarily shave her head. If it is just cut REALLY short, when it comes off, it isn't as dramatic then when it is long.
HOpe this helps.
Maryanne