Brain Met in Lateral Ventricals

HI Marily,

First let me say how sorry I am you and your family have to go through this.  I was dx with one brain met 12 years ago.  I was scheduled for Gamma Knife when it was discovered the tumor burst and bled. I had  surgery the next day .  Mine was behind the left occipital lobe. My radiology oncologist did not recommed WBR for one brain met. In fact, she had gone to a conference between my first appt. and suregy which did not recommed WBR for one brain met. Things have changed since then and I am not familiar with Zelboraf.

I am currently NED 12 years.

Mrs. Marily,  go to profiles and look up the profice for  Jag.  He has had more brain mets than anyone I know and is NED since 2008.  HIs story is amazing.

IF I may be of any help please let me know. Hang in there.

Love and Light

CArole K

HI Marily,

First let me say how sorry I am you and your family have to go through this.  I was dx with one brain met 12 years ago.  I was scheduled for Gamma Knife when it was discovered the tumor burst and bled. I had  surgery the next day .  Mine was behind the left occipital lobe. My radiology oncologist did not recommed WBR for one brain met. In fact, she had gone to a conference between my first appt. and suregy which did not recommed WBR for one brain met. Things have changed since then and I am not familiar with Zelboraf.

I am currently NED 12 years.

Mrs. Marily,  go to profiles and look up the profice for  Jag.  He has had more brain mets than anyone I know and is NED since 2008.  HIs story is amazing.

IF I may be of any help please let me know. Hang in there.

Love and Light

CArole K

HI Marily,

First let me say how sorry I am you and your family have to go through this.  I was dx with one brain met 12 years ago.  I was scheduled for Gamma Knife when it was discovered the tumor burst and bled. I had  surgery the next day .  Mine was behind the left occipital lobe. My radiology oncologist did not recommed WBR for one brain met. In fact, she had gone to a conference between my first appt. and suregy which did not recommed WBR for one brain met. Things have changed since then and I am not familiar with Zelboraf.

I am currently NED 12 years.

Mrs. Marily,  go to profiles and look up the profice for  Jag.  He has had more brain mets than anyone I know and is NED since 2008.  HIs story is amazing.

IF I may be of any help please let me know. Hang in there.

Love and Light

CArole K

Make sure he’s seeing a melanoma specialist! Typically brain mets are treated surgically and/or with brain radiation. Usually 1 met is treated with gamma knife or cyberknife, not WBR….WBR can only be done once and is typically used for multiple small mets. If his only met is in his brain, you might consider treating it and watch and wait to see what else develops. Zelboraf typically only works temporarily (months) and is usually used for patients with high tumor loads throughout their body. No one knows for sure if Zelboraf passes the Blood-brain barrier..it seems to cross for some patients, not others.

Make sure he’s seeing a melanoma specialist! Typically brain mets are treated surgically and/or with brain radiation. Usually 1 met is treated with gamma knife or cyberknife, not WBR….WBR can only be done once and is typically used for multiple small mets. If his only met is in his brain, you might consider treating it and watch and wait to see what else develops. Zelboraf typically only works temporarily (months) and is usually used for patients with high tumor loads throughout their body. No one knows for sure if Zelboraf passes the Blood-brain barrier..it seems to cross for some patients, not others.

Make sure he’s seeing a melanoma specialist! Typically brain mets are treated surgically and/or with brain radiation. Usually 1 met is treated with gamma knife or cyberknife, not WBR….WBR can only be done once and is typically used for multiple small mets. If his only met is in his brain, you might consider treating it and watch and wait to see what else develops. Zelboraf typically only works temporarily (months) and is usually used for patients with high tumor loads throughout their body. No one knows for sure if Zelboraf passes the Blood-brain barrier..it seems to cross for some patients, not others.

I am confused. Is "Jax Mayo" in Jacksonville Florida? They would do the radiation and then your brother would go to Pittsburgh for Zelboraf? If that is correct, I assume that your brother can travel. If so, please get him to a melanoma Center of Excellence for a consult before making any decisions– especially irreversible decisions like WBR. Moffitt Medical Center is Tampa very good.

You don't say if your brother has other tumors in his body. For one brain tumor, I would be very reluctant to get WBR for many reasons. Surgery would be my first choice and gamma knife my second choice. I don't know if either of those is possible given the location of his tumor, but it's worth asking. 

Zelboraf only works in about 50% of the people who take it. But when it works it works quickly and it does work on brain mets. So if I couldn't get surgery or gamma knife, I would probably go direcly to Zelboraf for a couple of weeks before trying WBR.

My brother's case was very similar to your brother's. My one regret is that we allowed his doctors to do WBR as a FIRST treatment, even before Zelboraf. I didn't want them to do it, but they scared the hell out of my brother predicting more brain bleeds so he agreed to the procedure. As always with melanoma, you have to make the best decision you can at the time and not look back. But this is one thing I wish had been done differently.

Please go to a Melanoma Center of Excellence before you decide. 

 

I am confused. Is "Jax Mayo" in Jacksonville Florida? They would do the radiation and then your brother would go to Pittsburgh for Zelboraf? If that is correct, I assume that your brother can travel. If so, please get him to a melanoma Center of Excellence for a consult before making any decisions– especially irreversible decisions like WBR. Moffitt Medical Center is Tampa very good.

You don't say if your brother has other tumors in his body. For one brain tumor, I would be very reluctant to get WBR for many reasons. Surgery would be my first choice and gamma knife my second choice. I don't know if either of those is possible given the location of his tumor, but it's worth asking. 

Zelboraf only works in about 50% of the people who take it. But when it works it works quickly and it does work on brain mets. So if I couldn't get surgery or gamma knife, I would probably go direcly to Zelboraf for a couple of weeks before trying WBR.

My brother's case was very similar to your brother's. My one regret is that we allowed his doctors to do WBR as a FIRST treatment, even before Zelboraf. I didn't want them to do it, but they scared the hell out of my brother predicting more brain bleeds so he agreed to the procedure. As always with melanoma, you have to make the best decision you can at the time and not look back. But this is one thing I wish had been done differently.

Please go to a Melanoma Center of Excellence before you decide. 

 

I am confused. Is "Jax Mayo" in Jacksonville Florida? They would do the radiation and then your brother would go to Pittsburgh for Zelboraf? If that is correct, I assume that your brother can travel. If so, please get him to a melanoma Center of Excellence for a consult before making any decisions– especially irreversible decisions like WBR. Moffitt Medical Center is Tampa very good.

You don't say if your brother has other tumors in his body. For one brain tumor, I would be very reluctant to get WBR for many reasons. Surgery would be my first choice and gamma knife my second choice. I don't know if either of those is possible given the location of his tumor, but it's worth asking. 

Zelboraf only works in about 50% of the people who take it. But when it works it works quickly and it does work on brain mets. So if I couldn't get surgery or gamma knife, I would probably go direcly to Zelboraf for a couple of weeks before trying WBR.

My brother's case was very similar to your brother's. My one regret is that we allowed his doctors to do WBR as a FIRST treatment, even before Zelboraf. I didn't want them to do it, but they scared the hell out of my brother predicting more brain bleeds so he agreed to the procedure. As always with melanoma, you have to make the best decision you can at the time and not look back. But this is one thing I wish had been done differently.

Please go to a Melanoma Center of Excellence before you decide. 

 

Marilyn,

I am sorry. I "ditto" POW's response. Consider…Zel, gamma knife.  hold the WBR.

 

Best of luck..keep us posted.

Regards

Susan

Marilyn,

I am sorry. I "ditto" POW's response. Consider…Zel, gamma knife.  hold the WBR.

 

Best of luck..keep us posted.

Regards

Susan

Marilyn,

I am sorry. I "ditto" POW's response. Consider…Zel, gamma knife.  hold the WBR.

 

Best of luck..keep us posted.

Regards

Susan