› Forums › General Melanoma Community › BRAF Inhibitors and hair loss
- This topic has 15 replies, 5 voices, and was last updated 11 years, 8 months ago by
Tina D.
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- July 31, 2012 at 12:58 am
Hi everyone,
I was just wondering what others taking either the GSK or Roche BRAF inhibitor are finding in relation to hair loss – I am in week 14 of taking Dabrafenib, and in the last couple of weeks I have really started shedding a lot of hair, luckily I started with very thick hair but I am wondering where this might end up. Talking with a friend yesterday, she suggested that if I had some idea I was going to have complete or near complete hair loss I could start getting a wig made now, I hadn't thought about that.
Hi everyone,
I was just wondering what others taking either the GSK or Roche BRAF inhibitor are finding in relation to hair loss – I am in week 14 of taking Dabrafenib, and in the last couple of weeks I have really started shedding a lot of hair, luckily I started with very thick hair but I am wondering where this might end up. Talking with a friend yesterday, she suggested that if I had some idea I was going to have complete or near complete hair loss I could start getting a wig made now, I hadn't thought about that.
I know this might seem like a pretty superficical concern in the context of what everyone here is going through, but if you have any experiences you are prepared to share I would be grateful.
Best wishes to everyone
Ally
- Replies
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- July 31, 2012 at 3:13 am
Hi Ally,
My dad's full head of hair went to very thin on Vemurafenib a BRAF inhibitor. Honestly I would say that it sounds like you are going to loose a lot too. It's an all over even loss if that makes sense.
I'm speaking from my father's experience and I thought it made him look sicker than he really was.
He did loose all his eyebrows and body hair which didn't help.
That's really the only bonus for a female….no more shaving needed.
Hope that gives you some insight Ally,
Take care
Nahmi from Melbourne
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- July 31, 2012 at 3:13 am
Hi Ally,
My dad's full head of hair went to very thin on Vemurafenib a BRAF inhibitor. Honestly I would say that it sounds like you are going to loose a lot too. It's an all over even loss if that makes sense.
I'm speaking from my father's experience and I thought it made him look sicker than he really was.
He did loose all his eyebrows and body hair which didn't help.
That's really the only bonus for a female….no more shaving needed.
Hope that gives you some insight Ally,
Take care
Nahmi from Melbourne
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- July 31, 2012 at 3:13 am
Hi Ally,
My dad's full head of hair went to very thin on Vemurafenib a BRAF inhibitor. Honestly I would say that it sounds like you are going to loose a lot too. It's an all over even loss if that makes sense.
I'm speaking from my father's experience and I thought it made him look sicker than he really was.
He did loose all his eyebrows and body hair which didn't help.
That's really the only bonus for a female….no more shaving needed.
Hope that gives you some insight Ally,
Take care
Nahmi from Melbourne
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- July 31, 2012 at 3:22 am
Ally,I’ve been on Zel since April and starting losing hair all over in June. Eyebrow hairs are in the single digits and gobs come out when I shampoo. I had a ton of thick, long hair (am only 42), but it STILL just doesn’t seem to be slowing down or stopping thinning. It has receded quite a bit and looks so thin, so that when I looked in the mirror last week I saw a cancer patient – hated that. Last 2 mos I have washed it less, and even got a powder shampoo to try to eke more time out. I did some research here and talked to folks and found a charity where I could get a wig for free. My kids and hubby say I look younger in it and I’m getting used to it. Also getting good with the eyebrow makeup. I feel better knowing I look better and had SOMETHING I could take control of!! Also got a couple of hats & scarves. Take care.
Amy
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- July 31, 2012 at 3:22 am
Ally,I’ve been on Zel since April and starting losing hair all over in June. Eyebrow hairs are in the single digits and gobs come out when I shampoo. I had a ton of thick, long hair (am only 42), but it STILL just doesn’t seem to be slowing down or stopping thinning. It has receded quite a bit and looks so thin, so that when I looked in the mirror last week I saw a cancer patient – hated that. Last 2 mos I have washed it less, and even got a powder shampoo to try to eke more time out. I did some research here and talked to folks and found a charity where I could get a wig for free. My kids and hubby say I look younger in it and I’m getting used to it. Also getting good with the eyebrow makeup. I feel better knowing I look better and had SOMETHING I could take control of!! Also got a couple of hats & scarves. Take care.
Amy
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- July 31, 2012 at 3:22 am
Ally,I’ve been on Zel since April and starting losing hair all over in June. Eyebrow hairs are in the single digits and gobs come out when I shampoo. I had a ton of thick, long hair (am only 42), but it STILL just doesn’t seem to be slowing down or stopping thinning. It has receded quite a bit and looks so thin, so that when I looked in the mirror last week I saw a cancer patient – hated that. Last 2 mos I have washed it less, and even got a powder shampoo to try to eke more time out. I did some research here and talked to folks and found a charity where I could get a wig for free. My kids and hubby say I look younger in it and I’m getting used to it. Also getting good with the eyebrow makeup. I feel better knowing I look better and had SOMETHING I could take control of!! Also got a couple of hats & scarves. Take care.
Amy
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- July 31, 2012 at 12:48 pm
Thanks Nahmi and Amy.I’m only 42 as well, ans have always been very proud of my hair -I’m just trying to approach it by thinking that if hair loss is the worst side effect that happens to me it is worth it as long as the drug keeps working. I have noticed a reduction in other body hair too, that is at least some upside as you say.
I will talk to our local Cancer Council women’s cancer nurse, I know they provide some support with things like wigs should one be needed.
Nahmi I’ve been following your updates on your dad, so sorry to hear things are not going well, so double thanks for taking time out to reply.
Ally -
- July 31, 2012 at 12:48 pm
Thanks Nahmi and Amy.I’m only 42 as well, ans have always been very proud of my hair -I’m just trying to approach it by thinking that if hair loss is the worst side effect that happens to me it is worth it as long as the drug keeps working. I have noticed a reduction in other body hair too, that is at least some upside as you say.
I will talk to our local Cancer Council women’s cancer nurse, I know they provide some support with things like wigs should one be needed.
Nahmi I’ve been following your updates on your dad, so sorry to hear things are not going well, so double thanks for taking time out to reply.
Ally -
- July 31, 2012 at 12:48 pm
Thanks Nahmi and Amy.I’m only 42 as well, ans have always been very proud of my hair -I’m just trying to approach it by thinking that if hair loss is the worst side effect that happens to me it is worth it as long as the drug keeps working. I have noticed a reduction in other body hair too, that is at least some upside as you say.
I will talk to our local Cancer Council women’s cancer nurse, I know they provide some support with things like wigs should one be needed.
Nahmi I’ve been following your updates on your dad, so sorry to hear things are not going well, so double thanks for taking time out to reply.
Ally -
- August 3, 2012 at 3:50 pm
Ally
I’m afraid I am a bit of an anomaly so my experience may not be all that helpful. I did lose all of my body hair while on Zelboraf. (I might have lost some on my head but it was already thinning and so it’s hard to tell.) Also, I never lost my eyebrows. Today most body parts have hair again except for the arm pits. Hair that did grow back is very thin and the hair on my head did change texture.
Dick
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- August 3, 2012 at 3:50 pm
Ally
I’m afraid I am a bit of an anomaly so my experience may not be all that helpful. I did lose all of my body hair while on Zelboraf. (I might have lost some on my head but it was already thinning and so it’s hard to tell.) Also, I never lost my eyebrows. Today most body parts have hair again except for the arm pits. Hair that did grow back is very thin and the hair on my head did change texture.
Dick
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- August 3, 2012 at 3:50 pm
Ally
I’m afraid I am a bit of an anomaly so my experience may not be all that helpful. I did lose all of my body hair while on Zelboraf. (I might have lost some on my head but it was already thinning and so it’s hard to tell.) Also, I never lost my eyebrows. Today most body parts have hair again except for the arm pits. Hair that did grow back is very thin and the hair on my head did change texture.
Dick
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- August 25, 2012 at 11:21 pm
Aly,
I am on Venurafenib and have lost abt 90% of the hair on my head, and most of my body hair ( the hair on my legs persists in growing, ha). No eyebrows, very thin eyelashes. Went wig shopping and found a very nice one. Here with a prescription, insurance companies will cover at least part. Also some soft caps to wear around the house. The wig has bangs, so I dont draw on eyebrows too often 🙂
Tina
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- August 25, 2012 at 11:21 pm
Aly,
I am on Venurafenib and have lost abt 90% of the hair on my head, and most of my body hair ( the hair on my legs persists in growing, ha). No eyebrows, very thin eyelashes. Went wig shopping and found a very nice one. Here with a prescription, insurance companies will cover at least part. Also some soft caps to wear around the house. The wig has bangs, so I dont draw on eyebrows too often 🙂
Tina
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- August 25, 2012 at 11:21 pm
Aly,
I am on Venurafenib and have lost abt 90% of the hair on my head, and most of my body hair ( the hair on my legs persists in growing, ha). No eyebrows, very thin eyelashes. Went wig shopping and found a very nice one. Here with a prescription, insurance companies will cover at least part. Also some soft caps to wear around the house. The wig has bangs, so I dont draw on eyebrows too often 🙂
Tina
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