Hair Loss-Ain't It Grand!

[SandraL]

I was fully prepared for losing my hair from first line treatment. I knew I was going to lose it at least 2 months before it happened. I was prepared for it and knew that I would get through it.

Two weekends ago now I noticed that my hair was starting to fall out again! I never even saw it coming. Of course I then looked up possible side effects of Gemzar and there it was. Apparently there is about a 15% chance of hair loss from Gemzar. I was very very upset and I cried. I haven't cried much over this cancer but I sure did cry about my darn hair. It took me awhile to figure out why I was so upset. To begin with it was a shock. And then I thought well I must be very vain. And then I realized that it is about being normal and not looking like a cancer patient. My hair was growing back nicely (nice and curly) and I actually wasn't minding it and nobody would have thought that I was recovering from baldness. And I am going on a few trips that I am very excited about and just want to look nice, be normal and have a good time.

I am very hopeful that now that I am off the gemzar after one round of treatment that the trend will reverse. Is there anybody else out there who has had hair loss from gemzar that can share their experience?

Anybody else want to vent about their hair loss as a result of treatment? Men too please.

I would love to hear of others experiences with hair loss and how it grew back. Mine was poker straight before (the curls in my picture are fake) and came back very curly and salt and peppery. I made a color correction very early on.

Thanks in advance for sharing and venting about your hair loss experience!

Sandra

[Snowflake]

Sandra,

I lost 70% of the hair on my crown (think "male pattern baldness") with Iressa. When it started to come back, it was SUCH a yucky mousy color. My mother, an old-time hair dresser, suggested I not color it for a full year so as to not damage the tender newness. One year to the day, I went back to blonde! Mine came in curly, but when it fell out, it was curly. I was happy to not lose my natural curl.

Good luck on the return of the follicles!

Becky

[Reynsie48]

This is about Ron and his hair loss of course, but actually he was reversed from you.

Ron had curly hair as a young guy and wavy as he aged, but always very thick and course. He also does not have a vain bone in his body but the day he realized he would be best to go and have his head shaved seemed to be a difficult day for him.

I think, and I am only guessing as it is still not something he talks or dwells a lot about, but it was one more thing to deal with, over and above the constant skin problems, crashing after steroids, not smoking, being off of work, the weight gain and so on and so on.

We bought a Chevy cap and he wore it until the first time that he took it off in a restaurant and no one even glanced his way as for many, this is a chosen hair style. After that, he rarely wore the hat.

I thought it emphasized his big beautiful blue eyes but hey, that's just me.

When his hair started to grow in, his hair came in pure white, very staight, very thin and so soft and fine and I really liked it, a very gentle look.

I think he actually enjoyed having to go and get it trimmed the first time, not so much for the look as what it meant. The more time passed, the thicker and wavier it got, the more dark ash blond and grey mixture it became. For years because of the "ash" blonde, you couldn't even see grey except in natural light, so the pure white was very different. Now he is back to having to go and get it trimmed and thinned on a regular basis.....I am jealous.

On the other hand, I was blessed with parents who both passed on baby fine, thin, lifeless hair, and since I was treated for graves disease and had the radio active cocktails etc, my hair tends to thin out regularly and I don't have much to start with, and add any stress whatsoever to that and it falls out in the sink. When we stayed at the lodge during Ron's treatments, he took a picture of me outside where the sun glared off of my head, blindingly so! I looked more like I was in treatment that Ron did as men can also choose to be bald.

At first, many people encouraged him to keep his head shaved as it "suited" him but now I know I would not want to see him that way again as to me it would mean he is in the fighting mode again and I would not wish that on any one regardless of the outcome.

And......yes it does wonders for my heart and soul to see him look "normal" for however how long. Unfortunately with the hair and the skin issues continuing, the dry skin and dandruff although not life threatening, is a constant issue and resistant to much of what used to work.

So I have not been where you are but I can feel for you oh so much and wish so badly that this disease finally lets up and lets you get back to having that normal life again with your young family. As so many say, NO ONE deserves this!

Sincerely

Sandy

[jaminkw]

Sandra, While visiting here I talked to an old friend about going off Avastin maintenance. I told her my daughter said what's the worst that can happen, it comes back and they zap you again. Her response was that it would mean starting all over again and losing my hair again. I'd thought about that before and can understand how you must feel. Losing it once was one thing but doing it again is not something I look forward to!

My hair was thick with some "bend" but no real curl. I kept hoping it would come in curly. It didn't. It covered my head and continued to grow pretty quickly as it always had. But it seems more baby fine than I remember. As it grew I almost missed being bald and the first new growth. At least people knew I was a cancer patient. Recently I felt like I just looked like a little old lady with a bad haircut! I just went and got it trimmed and shaped. That was really hard. I was afraid she would cut off too much. She didn't. My one vanity is I'm not grey yet at age 64. I was scared to death it would come in grey. It didn't--yeah!

I'll keep watching to see if anyone who did Gemzar responds here. Girl, you do fall into that small percentage side effect group evey time, don't you.

Judy in PA

[AnneM]

I just want to vent with you. My hair is still very short from first line treatment and that ended almost a year ago (Nov). I'm not sure why it's growing in so slow, but it is curly and it wasn't before. I am so ready to have my hair back. I also realized that it wasn't so much about the hair, but about not looking sick. Good luck Sandra, I imagine that after one 1 round it would start to grow quicker.

Anne

[Kasey]

I always had quite a full head of hair ~ thick and wavy. I decided on a wig vs. hats/ scarves/bald. I have some 'friends' who haven't yet fully acknowledged my dx and tx. My guess is that they think I am quite the drama queen ever even mentioning being dx with IIIa or IIIb LC. At any rate, I was accused of being too VAIN! Losing my hair was a small price to pay for survival, so it really had nothing to do with that.

What it DID have to do with was not being looked at with that 'look' from strangers. At the end of the day when I took that wig off, I KNEW I was different and sick. But out and about with 'hair' I felt like I was fitting right in the 'normal' world of everybody else.

It's easy for non-cncer folks to say that it is ONLY hair because they HAVE theirs, ya know? We all just gotta do what feels right for us. I did cry when my husband cut off my hair. I SO understand.

Kasey

[Barbb]

Kasey,

My bratty side asks, "did you ask your 'friends' to shave their heads so you would all look alike?" or were they "to vain" to do that to support you?

When Rod's hair started falling out, it began with his ears so we thought that was fine. It didn't stop there, his beard was salt and pepper and the dark fell out and the light stayed. I thought that was strange. What would be the difference?

Barb

[Patti B]

Sandra-

I hear ya!!! When I first lost my hair, I cried for days!!! Never been the prettiest girl on the block or anything but I did have good hair!!! Since it has come back in, its just not the same and the Tarceva has already changed the texture of it.

I guess you could call it vanity that upset me so much but then I wonder if people really think anything the way we feel about it. I opted to wear long scarves instead of a wig. I had bought a wig and even tho people said they couldn't believe it was a wig, to me it looked like one!! So my girlfriend who is a breast cancer survivor started a website/company making long scarves for cancer survivors that are long enough you can tie them in a bow......just beautiful. When we went on our memory trip to Arizona in June 2007, I was walking the streets of Sedonna wearing one that matched the shirt I was wearing. This lady walked up to me and said "well, let at you - that scarf looks beautiful on you". After talking for a few minutes, I realized she had no clue why I was wearing it. When I told her, she was shocked - told me she thought I was a trend setter.

Now that I am on Tarceva and awaiting the rash, my husband asked me would I rather have the rash on my face or lose my hair again............what a question. Guess I just want to be "normal" again!!!

Hugs, Sandra and hope your hair starts to grow back soon!!!

Patti

[SandraL]

I fussed and fussed about a wig when I knew I was going to lose my hair from first line treatment. I think I had the lady at the wig store send two back before I finally settled on one. The day I gave in on my hair and got it shaved was the night of my son's science fair. So I decided to don the wig and head on out there. Poor kid! Anyone who knew me clearly knew it was a wig. My son is very tolerant but later that night told me that he preferred me bald...that the wig just wasn't "me". I think I wore it once or twice after that but that was it. I didn't even wear it when I went back to work. I mostly opted for a small cotton cap and a ball cap when I was at home. And a few different hats when I went to work (cause ball caps just don't cut it at board meetings!).

So what a waste of money that wig was! It is still sitting in my closet...I should give it to someone. It is a lovely expensive Raquel Welch one. Please let me know if anyone here is interested in it. I can take a picture of it and see if you like it...and would be happy to send it someone else's way. I was just about to give away all my caps and hats as well. Am hanging on to them for the moment!

I am using the one touch principle for my hair right now. Wash it with baby shampoo (as infrequently as possible), put some goo on it, comb it, fluff it and LEAVE IT. Do not touch for the remainder of the day and pray for reversal and regrowth!

[TMac59]

The day I noticed my hair falling out was on fathers day 2007, a couple of weeks after my first treatment. We had my mother and my in-laws over for diner that day, after everyone left, I told my wife " get the clippers out, shave it all off" I wasn't going to deal with hair falling out all over the place. In some small way, it was my way of dealing with it and cut it on my own terms before it got too noticeable

I was ready for it, being a guy, it didn't bother me in the least. I kept telling people " In the gran scheme of things, hair is highly over rated " I kept telling two of my friends that are balding ( naturally ) and have comb overs' to give it up!

Of coarse I would imagine that with women it is harder to take.

tim

[Patti B]

Sandra-

Please check the ingredients of your "goo" you are putting on your hair - if it has a lot of alcohol in it, its going to dry your hair out more!! And once you start Tarceva, you want to keep your scalp as moisturized as possible!! I only put a non-alcohol gel on my hair if I know I am going out - otherwise I wash it with baby shampoo, use a scalp and hair conditioner and let it dry by itself. Looks bad but if I do have to run out to the store, I stick a baseball cap on my head!!

I did kinda what Tim did only on a grander scale. I had no control over anything in my life, but what day I lost my hair I COULD control. So a good friend of mine organized a hair cutting party with all my closest girlfriends and my sister and sister in law. Everybody brought food and we ate and drank and when it was over, they cut my hair off!!! My husband was the only guy allowed to be there and we really did have fun altho there were tears (some of them mine) when the hair cutting was over. But I am so glad I did that - the thought of being all alone (my husband is gone all week) and waking up with the hair all over my pillow or all falling off in the shower was just too much for me.

I am in your corner, Sandra and hoping and praying for return of you hair ASAP!!

Hugs - Patti

[jaminkw]

I couldn't handle the hair falling out in the sink and shower either so as soon as I saw it, I told my husband to get the clippers and shave it. Patti, I wish I'd had my daughter or girlfriends to call but it was just he and I. I didn't dare cry, he already felt so bad. He told me he just hated doing it because he knew what it meant to me. I really wanted to be brave for him.

Judy in Key West

[Connie B]

I thought for SURE I was ready to handle the hair loss issue. WRONG!

When it started to fall out, I was taking a bath, and I ran my fingers through my hair and my hand was full of hair. So, I sat there and CRIED and CRIED and CRIED! But MIND YOU, I was ready for this.

Well, after sitting there crying and my hubby coming in saying it's no biggy and we'll get through this, I got out of the tub, put on my robe and we went out to the garage and took the (dog clipper) and we buzzed my head. (yes Dog Clipper, it worked!) Then that night I went to bed and I STUCK to my pillow like velcrow. My hubby and I just laughed, and I damn near pissed my pants. TOO TOOO FUNNY!

The ONLY two area's I DIDN'T lose my hair was my eyebrows (HOORAY) and my freakin LEGS!!!!!!! Can you believe it? I STILL had to SHAVE MY FREAKIN LEGS through my treatments. But true!

Hang in there kiddo.