Can anyone shed some light

[SandraL]

on why I am still losing my flipping hair!

Now don't get me wrong. I am happy for the hair I do have on my head as this time last year I was completely bald. I wasn't terribly fond of bald but I did learn that people treated me the same with or without hair. And I thought it was because I was so good looking! Ha ha!

My hair started growing back fairly quickly after first line chemo of etoposide and cisplatin. I even got a little (very little..no charge) bit of a trim in the summer. And it kept growing through Alimta. Then I went on that nasty gemzar and after 2 treatments of that it started to fall out again. I have been off Gemzar for many months now and am currently on Tarceva.

I have fairly thick hair thank goodness and I have a fairly nice bunch of short curly low maintenance hair. But...it is still falling out...and I suppose some must be growing at the same time. I baby it big time with gentle shampoo and try not to fuss with it too much. But, I don't understand why it is still falling out? I just do not seem to be making any forward progress and it would be mildly put to say that I am kind of results driven.

I am wondering if anyone else has experienced similar and if there are any tips out there to encourage hair growth!

Thanks for your help

Sandra

ps Joy to the World anyhow...with or without hair!

[twodogs]

I'm sorry that I can NOT tell you what is causing the irritating and persistent hair loss. I can only share that my situation in that regard is nearly the same as you are experiencing.

I went from my absolutely white, Buffalo Bill/Wild Bill Hickok, long locks and curls to bald as a cue ball, right after PCI. In less than a month my hair started coming back in and six months later was thicker and darker than it had ever been. Since then it has gradually worked its way back to "mostly white" and it's not thick or long or curly. I'm currently back on chemo , once every six weeks and still have hair but it is gradually diminishing in the fashion you describe.

One of my Oncologists did tell me I could try those miracle lotions you see on TV but she wouldn't really say that they work.

No matter how we turn out, hair or not, Have a Merry Christmas and happy holidays.

John

[Wendy]

Hi Sandra,

I have had weird hair loss while on Tarceva. Mine hasn't fallen our in a regular overall pattern, I had my hair thin really bad just around my hair line on my face and forhead. The loss went back around an inch all the way around. I didn't lose all of the hair there, just enough to be a nuisance and noticeable. The weird thing is that it happened about a year and a half after I started on Tarceva.

Never did figure out why my hair was weird and my doctor just shrugged her shoulders. My hair is back to being pretty full again, but grows super course, curly and slowly.

One other thought, sometimes people lose hair when their thyroid is not working right. Could that be a possible issue?

Hang in there Sandra, I know its frustrating. Your beautiful with or without hair!

Wendy

[Janet B]

Sandra

I have had hair issues since being on Tarceva - and even my Oncologist was surprised. I had very thick straight hair which soon after I started on the Tarceva started thinning out - not in clumps but more like shedding. I think it thinned by about 3/4. Then - the new hair started coming in - short and wirey and curly - well that looked very silly under this thin straight long hair so I had my hairdresser cut off all the old and leave me with a very short head of curls. That was a year ago in October and I just went back to the hairdresser for the first time just to even it up - I would say it is no more than an inch long. So you can see - it grows sloooooooowly! On top of that I get terrible sores on my head that cause bald spots - so it is kindy of "patchy"! Now, in just the last month, I have started with what Wendy described - kind of like a receding hairline - but not completely because the hair is there - just really really short all along my face.

I have been having much better luck controlling the sores with Dove shampoo (my oncologist suggested that) and I use a leave in conditioner to kind of get some control over the curls.

Sometimes i see people staring at me in public and I laugh to myself because I tend to forget how weird my head looks!

Anyway - it is all worth it - in 3 days I will be a two year survivor and I will take that over nice hair any day!

Peace!

Janet

[recce101]

Ditto on most of the above. Long, curly, out-of-control eyelashes are just one feature. There are also those thinning, will-it-ever-grow-again spots, certainly not helped by occasional scalp sores. Sandra, I think it's time for your next organizational project, the Tarceva Weird Hair Club.

Ned

[Snowflake]

I took Iressa, a "before Tarceva" drug. I lost hair in the same pattern my dad grew his, I could see my shiny scalp through the strands of the top and sides. What I found interesting was that all the blonde hair fell out first, followed by the red. The mousy light-brown/dishwater blonde was all that remained. My eyelashes straightened out and would curl into my eye (they still do on my left eye, five years later!). Fay A. had PM'd me to see if I lost hair while on the drug, as she did, too.

My hair grew back on my head, but my body hair is still much thinner than it ever was. I don't have to shave my legs a lot in the summer....and everything that was curly is now straight, except for the hair on my head. It came back as curly as it was when it fell out.

[AnneM]

My hair has grown sooooo slowly. It really frustrates me. This is the current length of my hair on my avatar picture and it has been a little more than a year after chemo. I guess it's the Tarceva like others have said.

[alexan]

Same thing.... very wierd loosing hair & my eye lashes loooooong.

But the important thing is that we still here

have a good sunday bucky