Melanoma, Zelboraf and Temodar

Your situation sounds very much like my brother's (see my profile). At initial diagnosis, he had mets in the lungs, adrenal gland, intestines and brain. Too many brain mets (at least 5) for surgery so he had whole brain radiation (WBR). He started Zelboraf a month later. An MRI after 2 months showed the old brain mets stable (dead?) but 2 new brain mets. However, a CT scan showed that all the tumors in the rest of his body shrank by 50% or disappeared entirely. The doctors didn't know if Zelboraf was not getting into the brain (that question is currently in clinical trials) or if the new mets got started during the month before he started Z. So he had SRS to the 2 brain mets and continued Z. A head CT last week showed that the brain "looked better" than the prior scan (whatever that means) and he is continuing on Z. If and when the Z stops working, they will probably suggest Ippi (only 15% chance of success). 

To learn about Temodar and brain mets you can search this site for the key words "temodar" and "brain". You will see a lot of posts. 

As for your one day registration, I have no idea. Did you register as "Anonymous"? I never saw that message. Hopefully, it's a mistake. 

Your situation sounds very much like my brother's (see my profile). At initial diagnosis, he had mets in the lungs, adrenal gland, intestines and brain. Too many brain mets (at least 5) for surgery so he had whole brain radiation (WBR). He started Zelboraf a month later. An MRI after 2 months showed the old brain mets stable (dead?) but 2 new brain mets. However, a CT scan showed that all the tumors in the rest of his body shrank by 50% or disappeared entirely. The doctors didn't know if Zelboraf was not getting into the brain (that question is currently in clinical trials) or if the new mets got started during the month before he started Z. So he had SRS to the 2 brain mets and continued Z. A head CT last week showed that the brain "looked better" than the prior scan (whatever that means) and he is continuing on Z. If and when the Z stops working, they will probably suggest Ippi (only 15% chance of success). 

To learn about Temodar and brain mets you can search this site for the key words "temodar" and "brain". You will see a lot of posts. 

As for your one day registration, I have no idea. Did you register as "Anonymous"? I never saw that message. Hopefully, it's a mistake. 

Your situation sounds very much like my brother's (see my profile). At initial diagnosis, he had mets in the lungs, adrenal gland, intestines and brain. Too many brain mets (at least 5) for surgery so he had whole brain radiation (WBR). He started Zelboraf a month later. An MRI after 2 months showed the old brain mets stable (dead?) but 2 new brain mets. However, a CT scan showed that all the tumors in the rest of his body shrank by 50% or disappeared entirely. The doctors didn't know if Zelboraf was not getting into the brain (that question is currently in clinical trials) or if the new mets got started during the month before he started Z. So he had SRS to the 2 brain mets and continued Z. A head CT last week showed that the brain "looked better" than the prior scan (whatever that means) and he is continuing on Z. If and when the Z stops working, they will probably suggest Ippi (only 15% chance of success). 

To learn about Temodar and brain mets you can search this site for the key words "temodar" and "brain". You will see a lot of posts. 

As for your one day registration, I have no idea. Did you register as "Anonymous"? I never saw that message. Hopefully, it's a mistake. 

MD Anderson sees a lot of melanoma, and they try different things to try to fight it’s effects. My husband was treated there, so I have met people who took Zelboraf with Yervoy, or Zelboraf with Temodar before. Data on these combinations is difficult because they were likely prescribed off trial, and it’s fairly new territory for combining these drugs. All these drugs are FDA approved, so can be prescribed. Melanoma is a sneaky disease and you need to attack it with everything available, no guarantees. Since, you indicated the Zelboraf isnt shrinking the brain mets, why not try the temodar with it?? I wish you all the best, and keep fighting! Valerie (Phil’s wife)

MD Anderson sees a lot of melanoma, and they try different things to try to fight it’s effects. My husband was treated there, so I have met people who took Zelboraf with Yervoy, or Zelboraf with Temodar before. Data on these combinations is difficult because they were likely prescribed off trial, and it’s fairly new territory for combining these drugs. All these drugs are FDA approved, so can be prescribed. Melanoma is a sneaky disease and you need to attack it with everything available, no guarantees. Since, you indicated the Zelboraf isnt shrinking the brain mets, why not try the temodar with it?? I wish you all the best, and keep fighting! Valerie (Phil’s wife)

MD Anderson sees a lot of melanoma, and they try different things to try to fight it’s effects. My husband was treated there, so I have met people who took Zelboraf with Yervoy, or Zelboraf with Temodar before. Data on these combinations is difficult because they were likely prescribed off trial, and it’s fairly new territory for combining these drugs. All these drugs are FDA approved, so can be prescribed. Melanoma is a sneaky disease and you need to attack it with everything available, no guarantees. Since, you indicated the Zelboraf isnt shrinking the brain mets, why not try the temodar with it?? I wish you all the best, and keep fighting! Valerie (Phil’s wife)

My husbands brain mets are like yours.  Scattered throughout.  Small specks less than 1-2mm.  He did have two that were 1 cm.  Altogether at diagnosis, the MRI showed at least 17 they could count.  My husband had a paper thin melanoma removed in 2006.  Got it all.  Followed by dermatologist all those years, at first every 3 months, then every 6, and most recently once a year. Have never found any other skin meanomas.  Had a chest x-ray every year, blood work every year.  Was seen by oncologist the first 2 years, always searching, finding nothing.  Then summer 2012 not feeling well, stomach ache, exhausted.  Took till August 16 for dianosis. We never thought about it being caused by melanoma, (thought that was old news)  30 lesions liver, 12 lungs, 17 brain, one 2.3 cm in eye orbit, some lumps started popping up over eyebrow, behind ear, near original melanoma site.

In regards to brain mets, he had whole brain radiation in Sept while on Zelboraf.  Started Zelboraf on Sept 4th.  Within one week, the lumps were gone.  Began Whole brain radiation on Sept 12 for 10 weekdays.  Finished Sept 25.  Doctors did not have a lot of paitents getting whole brain at the same time taking Zelboraf.  Results, CT scans end of Oct showed lung nodules almost gone,  liver back to close to normal size and lesions shrunk nearly 50%.  Brain MRI done last week now shows specks but most of lesions have shrunk significantly.  NO NEW LESIONS anywhere.  When we read the CT report from end of August, we did see that there was a lesion on adrenlal gland that we didn't previously know about.  They never ordered a PET Scan in beginning as our dignostic CT Scans, liver biopsy etc had been done locally before we went to Cancer Treatment Center.  We are still pushing for a Whole body PET Scan.  Dont know about the Temador.  That is not something we have been told about.  I have only heard of this since finding this site this week.  Good luck.

My husbands brain mets are like yours.  Scattered throughout.  Small specks less than 1-2mm.  He did have two that were 1 cm.  Altogether at diagnosis, the MRI showed at least 17 they could count.  My husband had a paper thin melanoma removed in 2006.  Got it all.  Followed by dermatologist all those years, at first every 3 months, then every 6, and most recently once a year. Have never found any other skin meanomas.  Had a chest x-ray every year, blood work every year.  Was seen by oncologist the first 2 years, always searching, finding nothing.  Then summer 2012 not feeling well, stomach ache, exhausted.  Took till August 16 for dianosis. We never thought about it being caused by melanoma, (thought that was old news)  30 lesions liver, 12 lungs, 17 brain, one 2.3 cm in eye orbit, some lumps started popping up over eyebrow, behind ear, near original melanoma site.

In regards to brain mets, he had whole brain radiation in Sept while on Zelboraf.  Started Zelboraf on Sept 4th.  Within one week, the lumps were gone.  Began Whole brain radiation on Sept 12 for 10 weekdays.  Finished Sept 25.  Doctors did not have a lot of paitents getting whole brain at the same time taking Zelboraf.  Results, CT scans end of Oct showed lung nodules almost gone,  liver back to close to normal size and lesions shrunk nearly 50%.  Brain MRI done last week now shows specks but most of lesions have shrunk significantly.  NO NEW LESIONS anywhere.  When we read the CT report from end of August, we did see that there was a lesion on adrenlal gland that we didn't previously know about.  They never ordered a PET Scan in beginning as our dignostic CT Scans, liver biopsy etc had been done locally before we went to Cancer Treatment Center.  We are still pushing for a Whole body PET Scan.  Dont know about the Temador.  That is not something we have been told about.  I have only heard of this since finding this site this week.  Good luck.

My husbands brain mets are like yours.  Scattered throughout.  Small specks less than 1-2mm.  He did have two that were 1 cm.  Altogether at diagnosis, the MRI showed at least 17 they could count.  My husband had a paper thin melanoma removed in 2006.  Got it all.  Followed by dermatologist all those years, at first every 3 months, then every 6, and most recently once a year. Have never found any other skin meanomas.  Had a chest x-ray every year, blood work every year.  Was seen by oncologist the first 2 years, always searching, finding nothing.  Then summer 2012 not feeling well, stomach ache, exhausted.  Took till August 16 for dianosis. We never thought about it being caused by melanoma, (thought that was old news)  30 lesions liver, 12 lungs, 17 brain, one 2.3 cm in eye orbit, some lumps started popping up over eyebrow, behind ear, near original melanoma site.

In regards to brain mets, he had whole brain radiation in Sept while on Zelboraf.  Started Zelboraf on Sept 4th.  Within one week, the lumps were gone.  Began Whole brain radiation on Sept 12 for 10 weekdays.  Finished Sept 25.  Doctors did not have a lot of paitents getting whole brain at the same time taking Zelboraf.  Results, CT scans end of Oct showed lung nodules almost gone,  liver back to close to normal size and lesions shrunk nearly 50%.  Brain MRI done last week now shows specks but most of lesions have shrunk significantly.  NO NEW LESIONS anywhere.  When we read the CT report from end of August, we did see that there was a lesion on adrenlal gland that we didn't previously know about.  They never ordered a PET Scan in beginning as our dignostic CT Scans, liver biopsy etc had been done locally before we went to Cancer Treatment Center.  We are still pushing for a Whole body PET Scan.  Dont know about the Temador.  That is not something we have been told about.  I have only heard of this since finding this site this week.  Good luck.

Paper thin meaning what Breslow depth?

Paper thin meaning what Breslow depth?

Paper thin meaning what Breslow depth?

I wrote a fairly long response to you, but it disappeared.  Basically Temodar is known to cross the Blood Brain Barrier to attack tumors in the brain.  Dr Wen Jen Hwu, among others at MDA has used Temodar in conjunction with other drugs and at times have found that it may both help brain tumors and assist in creating apoptosis in cells in other body locations.

  With Zelboraf so newly approved, where would data be found to show how the two drugs would work together?  Where is any data to indicate that they won't work together to your benefit?    The need for combination trials is one of the items that Tim (MRF- Director) has been pushing for .  It is greatly needed, but has many financial and politcal ramifications as to what/who is responsible for what.  Pharmacia wants money and freedom from liability, we want LIFE.  Where is a joint meeting ground?

I would certainly try this combination before considering Whole Brain Radiation (WBR) which can only be done once in ones lifetime.  I have heard that there is often some hesitantcy in Denver (and many other locations) to try things that are not already on their trial schedule.  MDA seems to bo one of the more open locations to doing things outside the normal box.  I know of at least several cases where MDA Oncologists have assisted Oncologist at other locations to do things people have requested, that very few locations will even consider.  While I have never actually been to MDA, I believe that the assistance they have provided my oncologists and some friends of mine's oncologists (outside the normal box of treatments) may be the reason that we are still here in this battle.

I wrote a fairly long response to you, but it disappeared.  Basically Temodar is known to cross the Blood Brain Barrier to attack tumors in the brain.  Dr Wen Jen Hwu, among others at MDA has used Temodar in conjunction with other drugs and at times have found that it may both help brain tumors and assist in creating apoptosis in cells in other body locations.

  With Zelboraf so newly approved, where would data be found to show how the two drugs would work together?  Where is any data to indicate that they won't work together to your benefit?    The need for combination trials is one of the items that Tim (MRF- Director) has been pushing for .  It is greatly needed, but has many financial and politcal ramifications as to what/who is responsible for what.  Pharmacia wants money and freedom from liability, we want LIFE.  Where is a joint meeting ground?

I would certainly try this combination before considering Whole Brain Radiation (WBR) which can only be done once in ones lifetime.  I have heard that there is often some hesitantcy in Denver (and many other locations) to try things that are not already on their trial schedule.  MDA seems to bo one of the more open locations to doing things outside the normal box.  I know of at least several cases where MDA Oncologists have assisted Oncologist at other locations to do things people have requested, that very few locations will even consider.  While I have never actually been to MDA, I believe that the assistance they have provided my oncologists and some friends of mine's oncologists (outside the normal box of treatments) may be the reason that we are still here in this battle.

I wrote a fairly long response to you, but it disappeared.  Basically Temodar is known to cross the Blood Brain Barrier to attack tumors in the brain.  Dr Wen Jen Hwu, among others at MDA has used Temodar in conjunction with other drugs and at times have found that it may both help brain tumors and assist in creating apoptosis in cells in other body locations.

  With Zelboraf so newly approved, where would data be found to show how the two drugs would work together?  Where is any data to indicate that they won't work together to your benefit?    The need for combination trials is one of the items that Tim (MRF- Director) has been pushing for .  It is greatly needed, but has many financial and politcal ramifications as to what/who is responsible for what.  Pharmacia wants money and freedom from liability, we want LIFE.  Where is a joint meeting ground?

I would certainly try this combination before considering Whole Brain Radiation (WBR) which can only be done once in ones lifetime.  I have heard that there is often some hesitantcy in Denver (and many other locations) to try things that are not already on their trial schedule.  MDA seems to bo one of the more open locations to doing things outside the normal box.  I know of at least several cases where MDA Oncologists have assisted Oncologist at other locations to do things people have requested, that very few locations will even consider.  While I have never actually been to MDA, I believe that the assistance they have provided my oncologists and some friends of mine's oncologists (outside the normal box of treatments) may be the reason that we are still here in this battle.

Hello. I just found this site recently after that Metastatic Melonoma was diagnosed on my brother (lungs) at second half of July 2013.

First he started to take temodar in August and completed first cycle. Then, according to positive braf result, he started to take Zelboraf last Thursday (12th of Sep.)

After about 4 or five days, allergic reactions started to happen on his body. Then yesterday, his hands, face, neck all became red and we diagnosed rash on his upper body. Then, today rashes diffused all over his body. Also he has fever and nausea today.

After communication with our oncologist (but he hadn't worked with any braf patient until my brother), he suggested to stop medicine. On the other hand, we asked for advice of another oncologist who study about Zelboraf, stated that if we see this kind of side effects, it would mean that Zelboraf is effective on melanoma and suggests not to stop, but maybe reduce the dose.

So now we have a dilemma about the decision. Has anybody experienced the same side effects here? And what was the solution? If these effects continue and grow, should we stop the Zelboraf and will not take again? Could you please help us? We need your urgent advice.

Thank you in advance.

Hello. I just found this site recently after that Metastatic Melonoma was diagnosed on my brother (lungs) at second half of July 2013.

First he started to take temodar in August and completed first cycle. Then, according to positive braf result, he started to take Zelboraf last Thursday (12th of Sep.)

After about 4 or five days, allergic reactions started to happen on his body. Then yesterday, his hands, face, neck all became red and we diagnosed rash on his upper body. Then, today rashes diffused all over his body. Also he has fever and nausea today.

After communication with our oncologist (but he hadn't worked with any braf patient until my brother), he suggested to stop medicine. On the other hand, we asked for advice of another oncologist who study about Zelboraf, stated that if we see this kind of side effects, it would mean that Zelboraf is effective on melanoma and suggests not to stop, but maybe reduce the dose.

So now we have a dilemma about the decision. Has anybody experienced the same side effects here? And what was the solution? If these effects continue and grow, should we stop the Zelboraf and will not take again? Could you please help us? We need your urgent advice.

Thank you in advance.

Hello. I just found this site recently after that Metastatic Melonoma was diagnosed on my brother (lungs) at second half of July 2013.

First he started to take temodar in August and completed first cycle. Then, according to positive braf result, he started to take Zelboraf last Thursday (12th of Sep.)

After about 4 or five days, allergic reactions started to happen on his body. Then yesterday, his hands, face, neck all became red and we diagnosed rash on his upper body. Then, today rashes diffused all over his body. Also he has fever and nausea today.

After communication with our oncologist (but he hadn't worked with any braf patient until my brother), he suggested to stop medicine. On the other hand, we asked for advice of another oncologist who study about Zelboraf, stated that if we see this kind of side effects, it would mean that Zelboraf is effective on melanoma and suggests not to stop, but maybe reduce the dose.

So now we have a dilemma about the decision. Has anybody experienced the same side effects here? And what was the solution? If these effects continue and grow, should we stop the Zelboraf and will not take again? Could you please help us? We need your urgent advice.

Thank you in advance.