› Forums › General Melanoma Community › Zelboraf and hair loss
- This topic has 15 replies, 5 voices, and was last updated 13 years, 2 months ago by
Richard_K.
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- April 9, 2012 at 10:42 pm
Hi! I started Zelboraf in late February for a Stage IV diagnosis with mets in my lungs. Before that, I was on the ipi trial and was non-responsive to that treatment. I've had just about every side effect listed for Zelboraf and have had to reduce my dosage to 480 mg twice a day but the most worrisome for me right now is hair loss. See, I'm also engaged to be married in September and I realize that of all things to worry about with my diagnosis, the vanity involved with losing my hair is kind of a ridiculous concern right now, But I am human and hoping t
Hi! I started Zelboraf in late February for a Stage IV diagnosis with mets in my lungs. Before that, I was on the ipi trial and was non-responsive to that treatment. I've had just about every side effect listed for Zelboraf and have had to reduce my dosage to 480 mg twice a day but the most worrisome for me right now is hair loss. See, I'm also engaged to be married in September and I realize that of all things to worry about with my diagnosis, the vanity involved with losing my hair is kind of a ridiculous concern right now, But I am human and hoping that I can have my own hair for my big day. I have lost quite a bit of my hair so far and just wondering if anyone out there has completely lost their hair because of Zelboraf. Is there an end in sight or should I just start looking for a wig?
I check the message board often and am uplifted by all the good news of people who are on this treatment.
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- April 9, 2012 at 11:11 pm
Sorry you've had so many issues with Zelboraf but hopefully it will do the trick for you. I have noticed listening to this board that there are some long term responders presently on this drug who started with a low tumor burden. For some reason it works well in the lungs, my father had a 10mmx10mm lesion in his lung and it went completely, so I hope that it works for you. He also suffered from severe hair loss. It was his biggest worry at the time and the oncologist said he was the first case he had seen that had lost that much hair. Unfortunately it hasn't stopped falling out. He lost his eyebrows completely. You are only human and your big day is important and I totally understand your concerns about loosing your hair. It's part of your identity and you want look your best. I can only speak from experience here but maybe it's worth looking into a wig just in case. Some people loose a lot of hair initially then it just stops there, but my dad's continues to fall out (he's not bald though) just evenly thin all over. Doesn't sound great sorry. Maybe it's better to be prepared in case.
Take care let us know how things go.
Nahmi from Melbourne
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- April 9, 2012 at 11:11 pm
Sorry you've had so many issues with Zelboraf but hopefully it will do the trick for you. I have noticed listening to this board that there are some long term responders presently on this drug who started with a low tumor burden. For some reason it works well in the lungs, my father had a 10mmx10mm lesion in his lung and it went completely, so I hope that it works for you. He also suffered from severe hair loss. It was his biggest worry at the time and the oncologist said he was the first case he had seen that had lost that much hair. Unfortunately it hasn't stopped falling out. He lost his eyebrows completely. You are only human and your big day is important and I totally understand your concerns about loosing your hair. It's part of your identity and you want look your best. I can only speak from experience here but maybe it's worth looking into a wig just in case. Some people loose a lot of hair initially then it just stops there, but my dad's continues to fall out (he's not bald though) just evenly thin all over. Doesn't sound great sorry. Maybe it's better to be prepared in case.
Take care let us know how things go.
Nahmi from Melbourne
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- April 9, 2012 at 11:11 pm
Sorry you've had so many issues with Zelboraf but hopefully it will do the trick for you. I have noticed listening to this board that there are some long term responders presently on this drug who started with a low tumor burden. For some reason it works well in the lungs, my father had a 10mmx10mm lesion in his lung and it went completely, so I hope that it works for you. He also suffered from severe hair loss. It was his biggest worry at the time and the oncologist said he was the first case he had seen that had lost that much hair. Unfortunately it hasn't stopped falling out. He lost his eyebrows completely. You are only human and your big day is important and I totally understand your concerns about loosing your hair. It's part of your identity and you want look your best. I can only speak from experience here but maybe it's worth looking into a wig just in case. Some people loose a lot of hair initially then it just stops there, but my dad's continues to fall out (he's not bald though) just evenly thin all over. Doesn't sound great sorry. Maybe it's better to be prepared in case.
Take care let us know how things go.
Nahmi from Melbourne
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- April 10, 2012 at 12:14 am
Been on the drug since Sept.2011.Side effects included some (minor) joint pain ,occassional bouts of diarrhea approx. every 2 to 3&1/2 weeks for a day or two.Some taste issues which still linger till today .Hair loss came after 4 months.Hairless most of the body and went bald on top of the head.Does not seem like it will grow back.Thank goodness baseball caps are still in style.Just be sure to stay covered up when outside in the sun.Plan for the wig.Minor price to pay for the benefits of this drug.Your job is to only get well for the Sept wedding.My prayers go out to you.Keep us posted .Al
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- April 10, 2012 at 12:14 am
Been on the drug since Sept.2011.Side effects included some (minor) joint pain ,occassional bouts of diarrhea approx. every 2 to 3&1/2 weeks for a day or two.Some taste issues which still linger till today .Hair loss came after 4 months.Hairless most of the body and went bald on top of the head.Does not seem like it will grow back.Thank goodness baseball caps are still in style.Just be sure to stay covered up when outside in the sun.Plan for the wig.Minor price to pay for the benefits of this drug.Your job is to only get well for the Sept wedding.My prayers go out to you.Keep us posted .Al
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- April 10, 2012 at 12:14 am
Been on the drug since Sept.2011.Side effects included some (minor) joint pain ,occassional bouts of diarrhea approx. every 2 to 3&1/2 weeks for a day or two.Some taste issues which still linger till today .Hair loss came after 4 months.Hairless most of the body and went bald on top of the head.Does not seem like it will grow back.Thank goodness baseball caps are still in style.Just be sure to stay covered up when outside in the sun.Plan for the wig.Minor price to pay for the benefits of this drug.Your job is to only get well for the Sept wedding.My prayers go out to you.Keep us posted .Al
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- April 10, 2012 at 11:17 am
Hi
I also had hair loss my hair really thinned I probably lose half of it and my eyebrows etc. I know it must be hard you are young and with a wedding coming up, how exciting. Of course you want to look your best! I have heard there are some great wigs out there and they can match your hair color and style it I am gussing you know to look out for the sun it can give you a really bad burn
Good luck keep us posted
Laurie from Maine -
- April 10, 2012 at 11:17 am
Hi
I also had hair loss my hair really thinned I probably lose half of it and my eyebrows etc. I know it must be hard you are young and with a wedding coming up, how exciting. Of course you want to look your best! I have heard there are some great wigs out there and they can match your hair color and style it I am gussing you know to look out for the sun it can give you a really bad burn
Good luck keep us posted
Laurie from Maine -
- April 10, 2012 at 11:17 am
Hi
I also had hair loss my hair really thinned I probably lose half of it and my eyebrows etc. I know it must be hard you are young and with a wedding coming up, how exciting. Of course you want to look your best! I have heard there are some great wigs out there and they can match your hair color and style it I am gussing you know to look out for the sun it can give you a really bad burn
Good luck keep us posted
Laurie from Maine
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- April 10, 2012 at 2:38 pm
Thank you for the responses! I think I've covered the emotions that come with losing hair and just needed the confirmation of what others have been through before investing in the wig. My oncologist wasn't sure what to tell me becuase I am the only person he has seen take this drug so this is all pretty brand new to everyone. Again, thank you for taking the time to respond and I wish you all well!
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- April 10, 2012 at 2:38 pm
Thank you for the responses! I think I've covered the emotions that come with losing hair and just needed the confirmation of what others have been through before investing in the wig. My oncologist wasn't sure what to tell me becuase I am the only person he has seen take this drug so this is all pretty brand new to everyone. Again, thank you for taking the time to respond and I wish you all well!
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- April 10, 2012 at 2:38 pm
Thank you for the responses! I think I've covered the emotions that come with losing hair and just needed the confirmation of what others have been through before investing in the wig. My oncologist wasn't sure what to tell me becuase I am the only person he has seen take this drug so this is all pretty brand new to everyone. Again, thank you for taking the time to respond and I wish you all well!
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- April 10, 2012 at 6:17 pm
I am 65 years old and the hair on my head was already thinning – not sure if I lost any more due to Zelboraf; I did however loose all body hair. (My wife, doctor, and nurses joked with me about having no hair on legs or armpits.) Today, hair has come back to the body although much thinner and the hair on my head has a very different texture.
Based on my "hair timelines" I would think September will come too quickly to count on your hair and your wig investment seems wise.
Best of luck
Dick
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- April 10, 2012 at 6:17 pm
I am 65 years old and the hair on my head was already thinning – not sure if I lost any more due to Zelboraf; I did however loose all body hair. (My wife, doctor, and nurses joked with me about having no hair on legs or armpits.) Today, hair has come back to the body although much thinner and the hair on my head has a very different texture.
Based on my "hair timelines" I would think September will come too quickly to count on your hair and your wig investment seems wise.
Best of luck
Dick
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- April 10, 2012 at 6:17 pm
I am 65 years old and the hair on my head was already thinning – not sure if I lost any more due to Zelboraf; I did however loose all body hair. (My wife, doctor, and nurses joked with me about having no hair on legs or armpits.) Today, hair has come back to the body although much thinner and the hair on my head has a very different texture.
Based on my "hair timelines" I would think September will come too quickly to count on your hair and your wig investment seems wise.
Best of luck
Dick
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