Hair Loss - 1253353

With my husband he lost most of his hair with chemo then started tarceva. On tarceva for 10 months it grew very little and very curly. It has since grown at it's normal rate and texture but still has about 2 inches of "tarceva curls" at the ends. It seemed tarceva didn't cause hair lose but other things like slow growth, wild hairs, and curls.
Here are a couple of forum post on the subject of cyberknife and tarceva and hair loss.
http://cancergrace.org/forums/index.php?topic=8806.0
http://cancergrace.org/forums/index.php?topic=4604.0

This is what a treatment facility says in their FAQ,

"Will my hair fall out or burn my skin after CyberKnife treatment?
The radiation being delivered by the CyberKnife is so focused on a specific target that it is highly unlikely that hair loss or skin burn will occur. Typically, the radiation dose administered is not sufficient to cause permanent damage to the
skin or hair follicles. In the event that an intracranial lesion being treated is close to the scalp a patch of hair may be effected. The hair will grow back. Patients receive instruction before and after treatment and have an opportunity to dialogue with members of the medical team so that they are aware of possible events specific to their case." http://www.morsecyberknife.com/FAQ-Cyberknife.htm#15

Hmm, I know this is at odds with what Janine quoted, but I'd be inclined to blame it on the radiation. Sherry you have all my sympathy as it is horrible having no hair - I absolutely hated it - but it started growing back within three months of the radiation. In between I got a wig and got a haircut (makes the wig look more natural). Hang on in there. Make your friends go shopping with you. Get a Cossack hat (see Keira Knightley in Anna Karenina, Julie Christie in Dr Zhivago).
I agree about Tarceva making your hair go crazy - uncontrollable and bushy.

After looking around online it appears cyberknife isn't as bad as wbr with an almost certainty of losing your hair. It's more like possible patchy spots of baldness. Then on top of that tarceva does wacky things to hair. D lost most of his hair with etoposide then started tarceva and didn't really start growing much hair until after stopping tarceva. So while he didn't continue to lose hair on tarceva he didn't grow much either. But the curls he did grow are adorable.

I think being at odds just proves that with so much going on it's hard to tease apart and pinpoint the culprit.

Losing hair from cyberknife would be very uncommon. Losing hair from whole brain radiation or prophylactic brain radiation is expected, and losing much hair from Tarceva (erlotinib) is unusual but certainly happens from time to time -- more commonly than major hair loss from cyberknife, which really would be hard to envision.

-Dr. West

Then I'm wrong. But my Cossack hat advice still holds good!
Could it be stress-related? You have been through so much - with the brain surgery, and then the loss of your father.

It wasn't fun when I lost my hair but I acquired a love for Hats! My Favorit was a Fadora. It was Winter when I lost the majority of my hair, actually when I knew it was going to fall out I went to my Stylist to have it cut to 1/4 in. But I still was seeing it fall out right in front of my eyes. Like leaves from a tree. So I had my husband shave it all off. In the cold weather I would wear a wide headband under a Fadora! Was kind of cute! I maybe 67 in age but I am very Young at heart so a bandana was not my cup of tea. I became obsessed with Hats. I must have almost two dozen. I still wear them. Walmarts has some cute Fadoras and very inexpensive. Have fun with them I do! I even got so used to the Short hair I now have trouble letting it grow. I get it colored tomorrow and I think I'm going real short again. I had a lot of curl at first and I really miss the curl! Lorrie.

I think you'll love a new trimmed look. My husband never lost all his hair and I loved his super short thin look, I styled his hair for a couple of months. It's grown back now and he just looks like a hippie with tarceva curls on the ends.

Hi Sherry. . .

My Mom also had some hair loss while on Tarceva. . .but, she had A LOT of hair loss each time she went under general anesthesia (for about 2-4 weeks). I don't know what the correlation is (of if there even is one - - maybe it was just coincidental)...but her hair used to come out in clumps every time she went under...

Just a thought. . .

Laya

Sherry you may feel if fervent now! I was never a Hat person either! But rather than go around bare headed or with a bandana I tried the Fadora! They are fun! At any rate whatever makes you feel comfortable is what counts!

I went on tarceva in August 2009 as part of a clinical trial and lost all my hair in the October. Drs were surprised but not astounded. Hair has come and gone since then, mostly gone, so I am now over 3 years without a full head of hair. It's starting to grow again now as I am off tarceva and tarceva type drugs, and one day I may have to shave my legs again. I didn't like the idea of a wig so wore caps most of the time, but sometimes I dared to bare. I was never too sure whose sensitivities I was protecting.

Am on carbo/alimta at the moment. Have done two cycles, and noticed stray hairs on my pillow slip this morning!

Oh, and hair that has grown back is softer, darker and curlier that before.

Gail

I am on Tarceva 50mg daily and notice lack of hair growth on my legs and underarm so I hardly have to shave. the little hair I have in these areas are thin/wimpy. I don't notice a lot of hair loss, but just lack of healthy growth of hair - I think that's partly due to my scalp rash - can't have much hair growth since my scalp is frequently red/inflammed!! Another thing I found is that my hair is now very, very dry, just like my skin. I used to have very healthy, soft, full hair. Now, my hair is frizzy - feels like the bristles of the broom!!! It feels prickly when I run my hand through my hair. I have just discovered an oil - camilla oil, that moisturizes my hair very well. Believe me, I have used different types of hair conditioner, and even conditiioner that you leave on after shampoo. None of them moisturize as well as this oil. Where I have hair growth on my scalp - it's more like peach fuzz.

ssflxl

Interesting comment from Gail: "I was never too sure whose sensitivities I was protecting."
I lost all my hair after whole brain radiation. The really bad moment - among a lot of bad moments - came when a small child in the changing rooms at the swimming pool said "Mummy, is that a man?" After that I was very reluctant to go out without a wig or (when it got to winter) a Cossack hat, to which I am still devoted.
I think it stirs up a lot of fears: loss of identity, loss of femininity, the sense of being labelled as a cancer patient - you name it. My husband was very good about it, and that helped.
Sherry, I thought this might be useful, as it covers some other possible reasons for your hair loss:
http://www.bbc.co.uk/health/physical_health/conditions/hair_loss_women…
I think stress - and hormonal changes - can play a big role.

My 'out of the mouths of children' story was a young boy, with long hair, in the supermarket. He looked at me then said to his mum 'see, she's allowed to have short hair. Why cant I?'

Gail

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Forum moderator