21 replies to this topic

[luvmybees24]

I've been on Tasigna for 4 months and the past month or so I've noticed lots of strands falling out. Now all I have to do is run my hand through my hair and like 6 strands come out. My hair was thin to begin with! Does anyone else experience this? Am I gonna get bald spots?!?!? I'm 35 and I don't think it's due to age.

Laura.

[CMLSurvivor]

This unfortunately is very common. The good news is, that like all the other side effects this one comes and goes. Your hair will grow back. My hair was really long and I had to cut it into a short bob cut so it wasn't so noticeable that my hair was coming out. After what I think was about 2 years my hair stopped falling out as much and I have my hair long again. Of course it grew back curly and a different texture.

[luvmybees24]

Did you lose yours in patches or just random strands? Right now I THINK I see it thinning near my bangs but my friends say I'm just panicking and imagining things. My hair is shoulder length right now and I wear it in a pony tail a lot. I'm not gonna start losing big clumps am I? I'm started to panic....

[luvmybees24]

Also I dye it every 3 months or so because I have a lot of grays in the last couple years. I wonder if the dye is gonna make it fall out more? I don't know if my hair stylist would know. I always dye it myself. This sucks. I'm scared to dye it now.

[CMLSurvivor]

Mine came/comes out in random strands all over. It was alot at first then it started to slow down.  I have my hair highlighted every three months to hide the grey. My hair when it did grow back was alot darker. It was orginally bone straight, baby fine, mousy brown hair. It grew back dark brown, course and very wavy. It is crazy, because some of it is wavy and some is still straight. When I blow dry it, I have little hairs (new growth) that like to stick up all over the place.

[luvmybees24]

I have heard that it grows back different. Well, I always wanted some hair with texture (mine is bone straight too). Maybe it's not all that bad. lol. The part I LOVE is the leg hair is almost totally gone! Bonus!

[hannibellemo]

Hi, Laura,

This may or may not make you feel better but we normally lose approx. 100 strands of hair a day anyway. When my hair was really short I noticed no hair loss but now that it is more chin loss I freak out when I see it on the counter top, etc. when I am blow drying it. And stuck to my fingers when I drag my hands through my hair.

It may not be as bad as you think!

Pat

[jrsboo]

I'm with you Bees, very tiny amount of body hair left.  Head hair fell out like crazy.  It is much thinner at the bang area, but it stopped falling out after about 6 months.  Was always long and thick and curly.  Stills seems to be.  I also color it for what the lovely colorist calls "unpigmenteds".  Doesn't change the coloring process. 

Caroline

[Susan61]

Hi:  I keep my hair short, and years ago when I first started on Gleevec I was losing some.  Then it tapered off. I do feel that my hair never got thick again.  I have gone through highlighting, back to Gray, then to brown.  Now I am letting it fade to a lighter shade.  Its some kind of new way to do your hair so your not killing it with bleach. Everytime I get my roots done, she uses a lighter color.  Its taking longer, but I like it.  My biggest thing is my big wad of curls on one side of my  head.  I get these tight curls where my hair as always been poker straight.  I have such a hard time styling it.

I think everyone has a hair complaint with whatever TKI they are on.

[branditroxel]

Hi!  My hair started thinning around the forehead 6 months after being on Tasigna, which was this June.  I have noticed the hair breaks off and is very weak.  I'm using Nioxin and also have extensions clamped to my hair with little beads.  This may not be helping with the thinning, but for now, my hair still looks ok as long as the extensions are in.  If I take them out, I'm afraid my scalp would show and I wouldn't have much hair left.  I'm seeing hair in my fingers and in my shower.  I'm on 750mg/day, so this is a high dosage.  I have had long medium thin hair until now.  very sad.

[OhRose]

Hello all. I must admit I was very worried about hair loss, and texture. I started losing hair before dx this past Dec. and it continued after being on Sprycel 100mg, and then down to 70mg. I was not eating well due to loss of appetite before dx, but did start drinking 2 ensure a day after dx so as not to lose any more weight. My hair has thickened and ceased to be falling out and the texture is very nice now. My fingernails have strengthened as well..small items but noticable. I also have curly hair where I did not before. I do think the hair loss was in part due to bad nutrition. It might be worth a try to drink one of those "wonderful" nutrition drinks daily to be sure you are getting the right stuff, and lots of water. See if there is a difference. I feel it has had an impact on my hair loss.

Have a good day everyone. Stay positive. ..it is the best medicine.  We finally are getting some rain  in very warm  Ohio.

[Fellasgirl]

OMG finally someone talking about hair loss!! I was diagnosed in January, and was put on Gleevec. My hair started falling out. I had long hair down the middle of my back, and suddenly it was everywhere, all over the floor, clogging the bathroom sink and the tub and it was thinning out so bad. I talked to my doctor who was surprised and said that he didn't think that was a common side effect. After actually looking at the side effects, I found out that it is a common side effect but the doctor hadn't had any patients report any issues with it. So right now, I am down to a small bob, and later this week I am getting it cut even shorter because I can't handle the hair everywhere. I have noticed that it has started to slowly grow back, but I am going onto a higher dosage of gleevec and expect that any regrowth will be halted. I have also noticed that the texture is also different, its almost coarse. At least what hasn't fallen out is, not really sure yet what the status is on the regrowth, its still too short to determine. My diet may be effecting the hair loss and Ive no doubt that stress plays a part as well.

I think the hardest part of loosing my hair is actually seeing clumps of it in my hands when I wash it. I know it is thinning out and it upsets me, but there is nothing I can do about it, so I have been trying to eat better and take care of myself since the diagnosis and figure eventually the hair will grow back, its just a waiting game.

It was nice to see people actually discussing it, Ive found nothing anywhere else on the subject.

[msdrezer]

I started Tacrolimus again in January this year which made a lot of hair fall out.  I guess it is a side effect, but I just didn't notice when I started it with my BMT a year and a half ago because I practically had no hair anyway from all the chemo and radiation!  But I'm on it again now for cGVHD issues.  It wouldn't be so bad if I just had my bangs back.  The front of my hair never really grew back in from all those initial treatments (I always have had thin hair, so maybe that has something to do with it.)  Plus I have a high forehead which just makes it look worse.  So, when I'm going somewhere special or will be around a lot of people who don't know me, I wear my wig.  But it's grown in enough at least on top where I can shop and go to work without the wig, without thinking I look like a wierdo!  And I also found out that would be the LEAST of my problems, so as my husband says, "no one cares!"  I hope he's right.

[Lisal]

That made me feel better Pat!  I thought I was losing alot of hair too.  I didnt know that it is normal to lose up to 100 strands per day!

Thanks!

[nathaliece]

Laura,

I have had the same problem with losing my hair and I take 400 mg Gleevec.  I mentioned it in a post months back and some one recommended 1000 B12.  It seems to be helping but it is not as think as it used to be.

Nat

[Tedsey]

Hair loss (thinning) is commonly a stress response (i.e. being diagnosed with an incurable and deadly blood cancer).  The first few months on Gleevec, my hair fell out in clumps.  It has all grown back now and back to normal.  I also think that since hair loss is one of the first things a person thinks of when he/she hears the word cancer, it is the most noticed.  However, since we are not on a chemotherapy regimen, our hair loss is likely from a completely different source.  I had a drug change 9 months after showing little response to Gleevec.  I did not notice any hair loss at that time.  I think I was over the extreme shock of the dx by that time.

Take care,

Tedsey

[knoppl]

My hair thinned out on Gleevec which I am still on. It did stop and has fully filled in and is actually so thiick it gets thinned when I get a hair cut. I remember being so worried about seeing the hair coming out but it did stop and I was the only one that noticed, nobald spots. It is very stressful when you are newly diagnosed and I still go through periods when I get worried but most days I hardly think about it now.

[kimw]

Hi everyone.  I am new to this board.  I was just diagnosed with CML on 03/08/12 and was started on Tasigna 300mg twice a day.  In June (after being on med for 3 mo) I noticed my hair also started falling out by the handfuls.  My hair was already short and thin anyway so it has really upset me.  My Dr. doesn't have the greatest bedside manner and is not very easy to talk to about things like this.  All he is concerned about is results, which have been great!  Went from WBC of 251k to 26k after 30 days on med.  Now it is down in normal range.  I was excited to find this board, as I have no support group or anyone really to talk to about what feelings I am experiencing.  I am glad to hear that most of you have had a discontinuation of hair loss and had regrowth.  It gives me hope that I will have the same.

Thanks for listening.

Kim

[NotJack?]

My hair was coming out in clumps, Tasigna and stress.  Now, at one year after dx, my hair is back thicker than ever, and wavy instead of straight and flat like it used to be.  I let my hair grow while it was falling out, making the loss less obvious to others,  thereby avoiding the concerned looks that were coming my way.  I have decided to leave my hair long now, it makes me feel like  have beaten back this cancer.  (Thanks TKIs) ,    Jack