Switching from Zelboraf to BRAF/MEK combo questions

Hi Hannah,

I cannot answer your questions regarding burns and hair loss personally since I've not taken Zelboraf or the BRAF/MEK combo.  I have not seen specifics regarding those particular side effects in the literature, but the data is very clear that fewer skin lesions and other side effects occur with the combo than when Zel is taken alone.  And, as a huge plus, effectiveness against melanoma lasts much longer in most patients with the combo as well.  In addition to the combo, some studies show that intermittent dosing schedules help with side effects.  I posted some information regarding the latest studies with the combo on my blog – see posts on Jan 13, 2013 and Nov 6, 2013 (a discussion with Dr. Ribas) that might give you a bit more information if you are interested.

I wish you my very best.  Celeste

Hi Hannah,

I cannot answer your questions regarding burns and hair loss personally since I've not taken Zelboraf or the BRAF/MEK combo.  I have not seen specifics regarding those particular side effects in the literature, but the data is very clear that fewer skin lesions and other side effects occur with the combo than when Zel is taken alone.  And, as a huge plus, effectiveness against melanoma lasts much longer in most patients with the combo as well.  In addition to the combo, some studies show that intermittent dosing schedules help with side effects.  I posted some information regarding the latest studies with the combo on my blog – see posts on Jan 13, 2013 and Nov 6, 2013 (a discussion with Dr. Ribas) that might give you a bit more information if you are interested.

I wish you my very best.  Celeste

Hi Hannah,

I cannot answer your questions regarding burns and hair loss personally since I've not taken Zelboraf or the BRAF/MEK combo.  I have not seen specifics regarding those particular side effects in the literature, but the data is very clear that fewer skin lesions and other side effects occur with the combo than when Zel is taken alone.  And, as a huge plus, effectiveness against melanoma lasts much longer in most patients with the combo as well.  In addition to the combo, some studies show that intermittent dosing schedules help with side effects.  I posted some information regarding the latest studies with the combo on my blog – see posts on Jan 13, 2013 and Nov 6, 2013 (a discussion with Dr. Ribas) that might give you a bit more information if you are interested.

I wish you my very best.  Celeste

Hi, Hannah-

I am sorry that you have to join this community, but you certainly are welcome here. 

I am delighted that you only have one tumor and that it has been shrinking with Zelboraf. That is excellent news! And if it shrinks enough that it can be surgically removed, that will be even better. 

Switching to Tafinlar + Mekinist might be a very good idea. Clinical trials have shown that the combo works better and longer than a BRAF inhibitor alone. Also, as Celest said, the side effects of the combo are less than BRAF alone. 

Unfortunately, most people do experience hair loss on the BRAF inhibitors, including arms and eyebrows. Some people lose more hair than others. After 4 months on Zelboraf, my brother's hair was starting to grow back but it came in slowly and was coarser than his original hair. I don't know if other people have had this experience.

Of course, losing one's hair can be traumatic and can make you look sicker than you are. It might be a good idea for you to go ahead and get a good quality wig made in your prefered color and style so that you don't have to fret more than necessary about the hair issue. I think that there are several charities, including the American Cancer Society, that can help pay for the cost of a wig. 

As for the sun sensitivity, that doesn't go away. As long as you are on a BRAF inhibitor you will need to avoid exposing your skin to the sun. You will also need to be vigilant for basal and squamous cell cancers, too. They grow more slowly than melanoma and seldom metastasize, but you don't want to leave them there too long.

Stage IV melanoma does change  your life in a lot of ways. However, you caught yours early and you have an excellent treatment plan going for you. An awful lot of people here have been able to adjust to this new reality and gone on to live very long and happy lives.  I hope and expect that you will be one of them.  

Hi, Hannah-

I am sorry that you have to join this community, but you certainly are welcome here. 

I am delighted that you only have one tumor and that it has been shrinking with Zelboraf. That is excellent news! And if it shrinks enough that it can be surgically removed, that will be even better. 

Switching to Tafinlar + Mekinist might be a very good idea. Clinical trials have shown that the combo works better and longer than a BRAF inhibitor alone. Also, as Celest said, the side effects of the combo are less than BRAF alone. 

Unfortunately, most people do experience hair loss on the BRAF inhibitors, including arms and eyebrows. Some people lose more hair than others. After 4 months on Zelboraf, my brother's hair was starting to grow back but it came in slowly and was coarser than his original hair. I don't know if other people have had this experience.

Of course, losing one's hair can be traumatic and can make you look sicker than you are. It might be a good idea for you to go ahead and get a good quality wig made in your prefered color and style so that you don't have to fret more than necessary about the hair issue. I think that there are several charities, including the American Cancer Society, that can help pay for the cost of a wig. 

As for the sun sensitivity, that doesn't go away. As long as you are on a BRAF inhibitor you will need to avoid exposing your skin to the sun. You will also need to be vigilant for basal and squamous cell cancers, too. They grow more slowly than melanoma and seldom metastasize, but you don't want to leave them there too long.

Stage IV melanoma does change  your life in a lot of ways. However, you caught yours early and you have an excellent treatment plan going for you. An awful lot of people here have been able to adjust to this new reality and gone on to live very long and happy lives.  I hope and expect that you will be one of them.  

Hi, Hannah-

I am sorry that you have to join this community, but you certainly are welcome here. 

I am delighted that you only have one tumor and that it has been shrinking with Zelboraf. That is excellent news! And if it shrinks enough that it can be surgically removed, that will be even better. 

Switching to Tafinlar + Mekinist might be a very good idea. Clinical trials have shown that the combo works better and longer than a BRAF inhibitor alone. Also, as Celest said, the side effects of the combo are less than BRAF alone. 

Unfortunately, most people do experience hair loss on the BRAF inhibitors, including arms and eyebrows. Some people lose more hair than others. After 4 months on Zelboraf, my brother's hair was starting to grow back but it came in slowly and was coarser than his original hair. I don't know if other people have had this experience.

Of course, losing one's hair can be traumatic and can make you look sicker than you are. It might be a good idea for you to go ahead and get a good quality wig made in your prefered color and style so that you don't have to fret more than necessary about the hair issue. I think that there are several charities, including the American Cancer Society, that can help pay for the cost of a wig. 

As for the sun sensitivity, that doesn't go away. As long as you are on a BRAF inhibitor you will need to avoid exposing your skin to the sun. You will also need to be vigilant for basal and squamous cell cancers, too. They grow more slowly than melanoma and seldom metastasize, but you don't want to leave them there too long.

Stage IV melanoma does change  your life in a lot of ways. However, you caught yours early and you have an excellent treatment plan going for you. An awful lot of people here have been able to adjust to this new reality and gone on to live very long and happy lives.  I hope and expect that you will be one of them.  

Hannah, I've been on the GSK combo since August (as my initial Stage IV treatment).  I have light skin and have never been a sun worshipper.  That said, I haven't noticed any increase in sun sensitivity on the combo.  As for hair loss, let's just say that I didn't have a good starting point.  Again though, no noticeable difference to me.  I do have periodic acne and, early on, I did have periodic joint pain and pain on the bottoms of my feet.  The pain was minor enough that I didn't need OTC pain relievers, etc.  in sum, I've had a very positive experience.  I haven't taken Zel.  Gina's husband, Rudy, has had a very positive experience making the switch–perhaps she will respond to you.  My two cents (not a doctor) is that you might aim to get off targeted therapy as soon as possible (so as to leave some dry powder in case you need it later). It sounds like that is your goal (surgery).

Hannah, I've been on the GSK combo since August (as my initial Stage IV treatment).  I have light skin and have never been a sun worshipper.  That said, I haven't noticed any increase in sun sensitivity on the combo.  As for hair loss, let's just say that I didn't have a good starting point.  Again though, no noticeable difference to me.  I do have periodic acne and, early on, I did have periodic joint pain and pain on the bottoms of my feet.  The pain was minor enough that I didn't need OTC pain relievers, etc.  in sum, I've had a very positive experience.  I haven't taken Zel.  Gina's husband, Rudy, has had a very positive experience making the switch–perhaps she will respond to you.  My two cents (not a doctor) is that you might aim to get off targeted therapy as soon as possible (so as to leave some dry powder in case you need it later). It sounds like that is your goal (surgery).

Hannah, I've been on the GSK combo since August (as my initial Stage IV treatment).  I have light skin and have never been a sun worshipper.  That said, I haven't noticed any increase in sun sensitivity on the combo.  As for hair loss, let's just say that I didn't have a good starting point.  Again though, no noticeable difference to me.  I do have periodic acne and, early on, I did have periodic joint pain and pain on the bottoms of my feet.  The pain was minor enough that I didn't need OTC pain relievers, etc.  in sum, I've had a very positive experience.  I haven't taken Zel.  Gina's husband, Rudy, has had a very positive experience making the switch–perhaps she will respond to you.  My two cents (not a doctor) is that you might aim to get off targeted therapy as soon as possible (so as to leave some dry powder in case you need it later). It sounds like that is your goal (surgery).

Hi Hannah,

My dad was on Zelboraf for a few months and experienced both the hair thinning and photosensitivity. He had a really hard time being outside or even near a window unless the blinds were down. He has always worn sunscreen when outside but started wearing it every day (even when inside for most of the day) and reapplying it throughout the day, which irritated his skin and made him feel rather miserable. A couple things that helped a little were buying some sun-blocking clothing and getting him a nice mild facewash and moisturizer to help his skin deal with the sunscreen.

He switched to the combo awhile ago and I'm happy to share that both of these side effects have been mostly alleviated. His hair looks more like it used to (he has always had a really thick head of hair) and he also is able to take walks outside during the day. He has not had measurable tumor so I can't say anything about how the combo worked for him compared to Z.

I hope your experience is equally positive!

Best,

Doro

Hi Hannah,

My dad was on Zelboraf for a few months and experienced both the hair thinning and photosensitivity. He had a really hard time being outside or even near a window unless the blinds were down. He has always worn sunscreen when outside but started wearing it every day (even when inside for most of the day) and reapplying it throughout the day, which irritated his skin and made him feel rather miserable. A couple things that helped a little were buying some sun-blocking clothing and getting him a nice mild facewash and moisturizer to help his skin deal with the sunscreen.

He switched to the combo awhile ago and I'm happy to share that both of these side effects have been mostly alleviated. His hair looks more like it used to (he has always had a really thick head of hair) and he also is able to take walks outside during the day. He has not had measurable tumor so I can't say anything about how the combo worked for him compared to Z.

I hope your experience is equally positive!

Best,

Doro

Hi Hannah,

My dad was on Zelboraf for a few months and experienced both the hair thinning and photosensitivity. He had a really hard time being outside or even near a window unless the blinds were down. He has always worn sunscreen when outside but started wearing it every day (even when inside for most of the day) and reapplying it throughout the day, which irritated his skin and made him feel rather miserable. A couple things that helped a little were buying some sun-blocking clothing and getting him a nice mild facewash and moisturizer to help his skin deal with the sunscreen.

He switched to the combo awhile ago and I'm happy to share that both of these side effects have been mostly alleviated. His hair looks more like it used to (he has always had a really thick head of hair) and he also is able to take walks outside during the day. He has not had measurable tumor so I can't say anything about how the combo worked for him compared to Z.

I hope your experience is equally positive!

Best,

Doro

Hello Hannah,

I'm very sorry that you have been diagnosed with melanoma. You have come to the right place for support and information that will be of great use to you along your journey to beat this cancer…so welcome and I'll be praying for you.  My husband, Rudy, is stage 4 and currently NED which we attribute to both Zelboraf and the GSK combo. He was on Zel for about 4 months and had significant shrinkage in his tumors from over 15 in his liver to about 4. While on Zel he had severe side effects that were pretty debilitating with joint pain so bad that he could not walk, nodules all over his body that were so painful you couldn't touch him and he did have quite a bit of hair loss (thankfully he started with a thick head of hair) and he completely lost his eyebrows and eyelashes. Those were the just some of the side effects of Zel. He also had to have a dose reduction to 6 pills a day and he did intermittent dosing of alternating 1 week on and 1 week off for a period of time. When the GSK drugs were FDA approved in May of 2013, we received a subscription for him to switch to the combo but the drugs weren't immediately available and so it was not until July 2013 that he started on the combo. 

The good news is that most, if not all, of those side effects went away on switching to the combo.  He got all his hair back and has had no further issues with hair loss or thinning for that matter.  He has occasional joint pain but it's been manageable and some fatigue, but again, manageable.   The side effects over all have been minimal and always grade 1 or 2.   At the end of November of 2013 we got the great news that he currently shows no evidence of disease, so we are thrilled with the job that both Zel and the combo has done for him and we are just praying for the combo to continue working until there is a cure.  Our next step will be PD1 or PD-L if he needs it so we are praying for speedy approval of these drugs!

I must advise that he has been taking alternative approaches as well the most significant being hemp oil that we make ourselves. Google "Phoenix Tears" and "Rick Simpson" and you will be able read about it yourself.  Any further information that you want from me in this regard I will be happy to discuss via private message, and for anybody else who would like to know more please send a private message. I know Spain has gone on record and has data to show that hemp oil is a cure for cancer, however, our government is going to great lengths to hide this information from us. 

In addition, we have completely changed his diet and reduced all sugar intake and processed foods.  I give him lots of vegetables including juicing a bag of carrots, spinach, kale and various other cancer fighting veggies daily.  So, we are using all resources that we have researched and believe to be aiding us in this war against melanoma.  We believe that all of these things have contributed to his NED status and highly advise that others consider some of these approaches. 

Last but most important to us is our faith! We are believers and give all the glory to our Heavenly Father and His Son, Jesus Christ!  We believe in the power of prayer and we are being supported and lifted up by so many fellow believers.  We know that we are not alone in this battle and we are comforted. 

I hope this information is useful to you and, again, you will be in my thoughts and prayers daily!

God Bless you!

Gina (wife of Rudy)

Hello Hannah,

I'm very sorry that you have been diagnosed with melanoma. You have come to the right place for support and information that will be of great use to you along your journey to beat this cancer…so welcome and I'll be praying for you.  My husband, Rudy, is stage 4 and currently NED which we attribute to both Zelboraf and the GSK combo. He was on Zel for about 4 months and had significant shrinkage in his tumors from over 15 in his liver to about 4. While on Zel he had severe side effects that were pretty debilitating with joint pain so bad that he could not walk, nodules all over his body that were so painful you couldn't touch him and he did have quite a bit of hair loss (thankfully he started with a thick head of hair) and he completely lost his eyebrows and eyelashes. Those were the just some of the side effects of Zel. He also had to have a dose reduction to 6 pills a day and he did intermittent dosing of alternating 1 week on and 1 week off for a period of time. When the GSK drugs were FDA approved in May of 2013, we received a subscription for him to switch to the combo but the drugs weren't immediately available and so it was not until July 2013 that he started on the combo. 

The good news is that most, if not all, of those side effects went away on switching to the combo.  He got all his hair back and has had no further issues with hair loss or thinning for that matter.  He has occasional joint pain but it's been manageable and some fatigue, but again, manageable.   The side effects over all have been minimal and always grade 1 or 2.   At the end of November of 2013 we got the great news that he currently shows no evidence of disease, so we are thrilled with the job that both Zel and the combo has done for him and we are just praying for the combo to continue working until there is a cure.  Our next step will be PD1 or PD-L if he needs it so we are praying for speedy approval of these drugs!

I must advise that he has been taking alternative approaches as well the most significant being hemp oil that we make ourselves. Google "Phoenix Tears" and "Rick Simpson" and you will be able read about it yourself.  Any further information that you want from me in this regard I will be happy to discuss via private message, and for anybody else who would like to know more please send a private message. I know Spain has gone on record and has data to show that hemp oil is a cure for cancer, however, our government is going to great lengths to hide this information from us. 

In addition, we have completely changed his diet and reduced all sugar intake and processed foods.  I give him lots of vegetables including juicing a bag of carrots, spinach, kale and various other cancer fighting veggies daily.  So, we are using all resources that we have researched and believe to be aiding us in this war against melanoma.  We believe that all of these things have contributed to his NED status and highly advise that others consider some of these approaches. 

Last but most important to us is our faith! We are believers and give all the glory to our Heavenly Father and His Son, Jesus Christ!  We believe in the power of prayer and we are being supported and lifted up by so many fellow believers.  We know that we are not alone in this battle and we are comforted. 

I hope this information is useful to you and, again, you will be in my thoughts and prayers daily!

God Bless you!

Gina (wife of Rudy)

Hello Hannah,

I'm very sorry that you have been diagnosed with melanoma. You have come to the right place for support and information that will be of great use to you along your journey to beat this cancer…so welcome and I'll be praying for you.  My husband, Rudy, is stage 4 and currently NED which we attribute to both Zelboraf and the GSK combo. He was on Zel for about 4 months and had significant shrinkage in his tumors from over 15 in his liver to about 4. While on Zel he had severe side effects that were pretty debilitating with joint pain so bad that he could not walk, nodules all over his body that were so painful you couldn't touch him and he did have quite a bit of hair loss (thankfully he started with a thick head of hair) and he completely lost his eyebrows and eyelashes. Those were the just some of the side effects of Zel. He also had to have a dose reduction to 6 pills a day and he did intermittent dosing of alternating 1 week on and 1 week off for a period of time. When the GSK drugs were FDA approved in May of 2013, we received a subscription for him to switch to the combo but the drugs weren't immediately available and so it was not until July 2013 that he started on the combo. 

The good news is that most, if not all, of those side effects went away on switching to the combo.  He got all his hair back and has had no further issues with hair loss or thinning for that matter.  He has occasional joint pain but it's been manageable and some fatigue, but again, manageable.   The side effects over all have been minimal and always grade 1 or 2.   At the end of November of 2013 we got the great news that he currently shows no evidence of disease, so we are thrilled with the job that both Zel and the combo has done for him and we are just praying for the combo to continue working until there is a cure.  Our next step will be PD1 or PD-L if he needs it so we are praying for speedy approval of these drugs!

I must advise that he has been taking alternative approaches as well the most significant being hemp oil that we make ourselves. Google "Phoenix Tears" and "Rick Simpson" and you will be able read about it yourself.  Any further information that you want from me in this regard I will be happy to discuss via private message, and for anybody else who would like to know more please send a private message. I know Spain has gone on record and has data to show that hemp oil is a cure for cancer, however, our government is going to great lengths to hide this information from us. 

In addition, we have completely changed his diet and reduced all sugar intake and processed foods.  I give him lots of vegetables including juicing a bag of carrots, spinach, kale and various other cancer fighting veggies daily.  So, we are using all resources that we have researched and believe to be aiding us in this war against melanoma.  We believe that all of these things have contributed to his NED status and highly advise that others consider some of these approaches. 

Last but most important to us is our faith! We are believers and give all the glory to our Heavenly Father and His Son, Jesus Christ!  We believe in the power of prayer and we are being supported and lifted up by so many fellow believers.  We know that we are not alone in this battle and we are comforted. 

I hope this information is useful to you and, again, you will be in my thoughts and prayers daily!

God Bless you!

Gina (wife of Rudy)

Hello again Hannah,

Sorry I forgot to address the sun sensitivity issue.  While on Zel Rudy never got burned but he did feel some sensitivity issues as far as he felt like his skin was burned, but it didn't appear burned.  He never goes outdoors without sunscreen and a big wide brimmed hat, just to be safe.  We also invested in clothing that blocks out the suns harmful rays.  Since he has been on the combo he hasn't had any issues but he still is very careful when he is outdoors. We live in Southern California where the sun is always shining and we spent a week this last August at a beach house and he did not get burned, but again, he was very cautious! 

God Bless you sweetie! 

Gina

Hello again Hannah,

Sorry I forgot to address the sun sensitivity issue.  While on Zel Rudy never got burned but he did feel some sensitivity issues as far as he felt like his skin was burned, but it didn't appear burned.  He never goes outdoors without sunscreen and a big wide brimmed hat, just to be safe.  We also invested in clothing that blocks out the suns harmful rays.  Since he has been on the combo he hasn't had any issues but he still is very careful when he is outdoors. We live in Southern California where the sun is always shining and we spent a week this last August at a beach house and he did not get burned, but again, he was very cautious! 

God Bless you sweetie! 

Gina

Hello again Hannah,

Sorry I forgot to address the sun sensitivity issue.  While on Zel Rudy never got burned but he did feel some sensitivity issues as far as he felt like his skin was burned, but it didn't appear burned.  He never goes outdoors without sunscreen and a big wide brimmed hat, just to be safe.  We also invested in clothing that blocks out the suns harmful rays.  Since he has been on the combo he hasn't had any issues but he still is very careful when he is outdoors. We live in Southern California where the sun is always shining and we spent a week this last August at a beach house and he did not get burned, but again, he was very cautious! 

God Bless you sweetie! 

Gina

Best of luck to you!!

Best of luck to you!!

Best of luck to you!!

Dear Hannah,

whether correctly I understood: the tumor can be removed with a surgical way while it decreased on Zelboraf's reception?

Dear Hannah,

whether correctly I understood: the tumor can be removed with a surgical way while it decreased on Zelboraf's reception?

Dear Hannah,

whether correctly I understood: the tumor can be removed with a surgical way while it decreased on Zelboraf's reception?