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Hair finally starting to change/fall out

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#1 Taylor



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Posted 27 September 2011 - 01:26 PM

Hi all,

Just venting a bit.  After being on Tasigna for about 8 months, my hair has finally started to be effected.  For three or four months I've had something like folliculitis and an itch, but nothing too bad.  Just within the last three weeks or so though I've noticed increasingly thinning hair, to the point now where I can be looking at some papers at work and see two or three fall, more if I move my hand through my hair.  It's pretty easy to see my scalp in places.  My fiancee also has noticed that the hair on the back of my head closer to my neck have changed, they're a bit more fuzzy.

It's interesting, because my hairline started receding very slowly at about 21 (I'm 25 now), but it hasn't receded very far (mainly just on my temples).  But I'm fairly convinced this is due to the medicine since the thinning now is rapidly increased and doesn't follow the typical pattern.

I thought it was maybe due to stress and anxiety, except for the fact that the last few weeks have actually been the least stresful and anxious to me since my diagnosis.  The wedding is 6 weeks away.  I wish it would have waited until after the wedding!

#2 Happycat


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Posted 29 September 2011 - 07:13 PM

What timing, Taylor!  Not to be indelicate, but how do you think you'd look in wedding pics with a shaved head? 

You might want to talk to your fiancee about how you want to handle it, depending on how it goes over the next few weeks.  If you are patchy bald  by then, shaving might be a good idea.  With a shaved head, you just look like a cool, hip guy.  But if your hair is patchy bald, you will look sick and generate a lot of comments among the guests.  (I know my eagle-eye aunts would have been all over it in the same situation.  They'd probably have had you figured as likely dead by spring.  But then when you miraculously survived, they'd tell everyone it was due to the prayer chain they set up for you.  They were sweet - just a bit alarmist and gossipy!)

I feel for you.  My dh lost his hair, quite a bit of it, during the year before we got married.  He used to have a thick head of hair, very thick, but it just washed down the drain over about 6 months or so.  However, since he looked like his dad then, no one was surprised by it.  Especially since his younger brother lost most of his hair, too.


#3 Guest_billronm_*

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Posted 29 September 2011 - 11:48 PM

Dear Taylor,

  I was dx 4 years ago. I was on Gleevac until last Oct. I had long brown hair at dx. I had been coloring my hair for years. After dx I didn't want to put any more chemicals on my hair.I got it cut short and had it lightened so my new growth would blend in. I kept it short for 3 years it grew back in pure white and very very curly. Gleevac takes the pigment out of your hair.Last Sept.I decided to let my hair grow long again and I colored it blond it is still very curly I was growing short fuzzy hair but as it grew it came in curly. I had my sister check my hair all the time. my hair fell out normally just all of ours does.Did you know that everyone sheds hair twice a year? March and September.? The new growth comes in fast in Sept. because we need more hair in the winter It's the same with all animals that have hair or fur. It's just nature. I took a 5 week break last oct, and went on Sprycel around thanksgiving. After 3 mos I noticed my hair thinning on top. I could see my scalp in some places I almost lost it I wanted to throw all these meds out.My hair grows fast so I had the top cut shorter not to short but it's easier to hide the thinning hair I used volumizer moouse and just slightly blow dried it that covered it real well.As I said my hair grows fast it was less than a month before I couldn't see parts of my scalp. Now I have this big mop of hair but I keep it layered just in case. My beautition said to be very gentle with your hair I used baby shampoo, and she told me never to use a brush that suprised me but I guess it makes sense a brush pulls more hair out,just use a wide toothed comb.

Your wedding day is the most important day of your life (one of them) the second one is when you pay your mortgage off!  When my husband and I got married, and for our childrens weddings I went with him for his haircut he's gotten some pretty bad ones. He just says cut it. 4 years ago a barber in Florida gave him a gi cut. I always went to my hairdresser a week before these big events and had my hair done so I wouldn't have any surprises. If I were you I would take your fiancee to a hair stylest a week or so before the wedding and have your hair trimmed and styled. You would be suprised at what they can do nowadays. Don't get a completely different style just something to make it fuller. And please stop looking for every little hair it will drive you nuts.I know it's hard but just think about the wonderful life you're going to have. Now us women we have big problems to worry about like will my wedding dress fit me the day of the wedding? Will my feet swell, will my shoes fit? Dear God please don't let me trip coming down the aisle?

All you guys have to worry about is are my eyes still bloodshot? Or is my Zipper all the way up? Now I'm going to plant a seed Please God let me remember her name! tee heee

                                                                                            Good Luck Every thing will be perfect.  God Bless Billie

#4 Sneezy12


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Posted 30 September 2011 - 05:43 AM

Why did you go on Sprycel? Frank

#5 AliceJane


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Posted 30 September 2011 - 05:23 PM

wow, this is odd, before I was diagnosed I lost half the hair on head and most on body, After on gleevec, it was still falling out and turned almost completly white. then on Sprycel and still thin, but not falling out as much. Since Feb on Tasigna, still white, but not falling out. almost normal.

Does anyone know what the hair/CML med connection is.  It seems to effect us all in differnet ways.

oh and another thing, My nails,

on gleevec, great nails, grow long and strong, with manicure look like fake nails they are so good.

Sprycel, thin, break, gave up on nails.

Now on Tasigna, great, not thick as with gleevec. but fast growing and have to cut them often.

lol, thinking about letting them grow and having great nails for holidays.

I don't get it.

#6 Guest_billronm_*

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Posted 03 October 2011 - 03:14 PM

Dear Frank,

I have had gi issues for quite a while before I got cml. Gleevac worked great as far as getting my counts down. I just couldn't tolerate it any more so I asked my onc to change me to something else he put me on Sprycel and within 3 days all my gi problems went away. I'm sorry it took me so long to get back to you my computer was out of commision for a few days.

                                                             Good Luck Billie

#7 Gene


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Posted 04 October 2011 - 09:33 PM

Hi Taylor,

I can understand your frustration.  I have been on Tasigna for about 15 months.  (I was on Gleevec for 9 months before Tasigna).  I had an itchy scalp after I started Tasigna.  Then I noticed my hair thinnig significantly 4 months later.  I had long thick hair so I really wasn't concerned until one day I pulled my hair in a pony tail.  Usually my ponytails are about the diameter of a quarter.  At my thinnest point, it was diameter of a dime or less.  After that, my hair started to return with a vengence.  Currently, I have just as much hair as I had before I started Tasigna but the texture has changed.    It's frizzy and unruly now.   If I let my hair dry naturally it looks similiar to the picture below (I'm not kidding).  Oh well, there is more to life than great hair.   Hopefully your hair returns (without the changes) in time for your wedding.


#8 CDW


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Posted 06 October 2011 - 10:45 AM


I'm sorry you're having this concern so close to your wedding after all we've been through we all just want thngs to run as smooth as possible. I've been on Tasigna for ~11 months (33yo Male) and I find the majority of the side effects are largely cyclical. I too started to lose my hair on my temples and from my body around the 3 month point and within a few weeks it began to grow back. My head hair was back to normal after a few weeks and my body hair has also recovered.

I will keep my fingers crossed for you that it is one of the cycles and that everything is as normal as possibly can be for your big day.


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