jmmm

Symptoms depend on where a tumor or tumors are.  My husband had a large brain tumor a few years ago.  He had a headache that got worse and worse for a few weeks, left sided weakness, and a foggy feeling.  He described it like his head was floating above his body.   If you have any concerns, get in ASAP for a brain MRI.  Brain tumors are treatable, but like anything else are easier to deal with when you catch them ealier rather than later.  Just an FYI after a craniotomy and gamma knife, his brain has been clear for 3 years:).

Symptoms depend on where a tumor or tumors are.  My husband had a large brain tumor a few years ago.  He had a headache that got worse and worse for a few weeks, left sided weakness, and a foggy feeling.  He described it like his head was floating above his body.   If you have any concerns, get in ASAP for a brain MRI.  Brain tumors are treatable, but like anything else are easier to deal with when you catch them ealier rather than later.  Just an FYI after a craniotomy and gamma knife, his brain has been clear for 3 years:).

Symptoms depend on where a tumor or tumors are.  My husband had a large brain tumor a few years ago.  He had a headache that got worse and worse for a few weeks, left sided weakness, and a foggy feeling.  He described it like his head was floating above his body.   If you have any concerns, get in ASAP for a brain MRI.  Brain tumors are treatable, but like anything else are easier to deal with when you catch them ealier rather than later.  Just an FYI after a craniotomy and gamma knife, his brain has been clear for 3 years:).

My husband had a craniotomy,nfollowed by gamma knife 3 years ago.  It took him several months to recover (at least 3-4 months).   He would sleep 16-18 hours a day for the first month or two.  Even at 6 months after, he would sleep 10-12 hours at night and many days need a nap.  He's still alive (and doing well with NED for almost 2 years), but has permanent brain damage.   He still struggles with short term memory, some cognition, and some vision.  He's certainly not the same person he was before his brain tumor, but he's alive and we've both worked extremely hard to adjust.  It's not easy, but try to take it a day at a time.  Steroids really messed with him…he was certainly not himself while on them.  Once he weaned off, I started seeing him inside there again.  Watching him recover and supporting him through was really hard.   Try to take it a day at a time and try not to worry too much (easier said than done, I know).  

My husband had a craniotomy,nfollowed by gamma knife 3 years ago.  It took him several months to recover (at least 3-4 months).   He would sleep 16-18 hours a day for the first month or two.  Even at 6 months after, he would sleep 10-12 hours at night and many days need a nap.  He's still alive (and doing well with NED for almost 2 years), but has permanent brain damage.   He still struggles with short term memory, some cognition, and some vision.  He's certainly not the same person he was before his brain tumor, but he's alive and we've both worked extremely hard to adjust.  It's not easy, but try to take it a day at a time.  Steroids really messed with him…he was certainly not himself while on them.  Once he weaned off, I started seeing him inside there again.  Watching him recover and supporting him through was really hard.   Try to take it a day at a time and try not to worry too much (easier said than done, I know).  

My husband had a craniotomy,nfollowed by gamma knife 3 years ago.  It took him several months to recover (at least 3-4 months).   He would sleep 16-18 hours a day for the first month or two.  Even at 6 months after, he would sleep 10-12 hours at night and many days need a nap.  He's still alive (and doing well with NED for almost 2 years), but has permanent brain damage.   He still struggles with short term memory, some cognition, and some vision.  He's certainly not the same person he was before his brain tumor, but he's alive and we've both worked extremely hard to adjust.  It's not easy, but try to take it a day at a time.  Steroids really messed with him…he was certainly not himself while on them.  Once he weaned off, I started seeing him inside there again.  Watching him recover and supporting him through was really hard.   Try to take it a day at a time and try not to worry too much (easier said than done, I know).  

We have been wondering this exact same thing.  My husband will have been on Zelbiraf for 3 years in October.  A little off and on due to medical stuff…surgeries, kidney issues, liver issues, but mostly on the entire time.  He deals with the joint pain, extreme sun sensitivity, and diarrhea.  He's been NED for  a little more than 2 years.  His oncologist has encouraged him to stop taking it to see what happens.  He is not comfortable with that, so he keeps taking it and waits for something to changel.  I think PD-1 will be his next choice (he had Ipi prior to Zelboraf and it worked for a couple of months before he progressed).

We have been wondering this exact same thing.  My husband will have been on Zelbiraf for 3 years in October.  A little off and on due to medical stuff…surgeries, kidney issues, liver issues, but mostly on the entire time.  He deals with the joint pain, extreme sun sensitivity, and diarrhea.  He's been NED for  a little more than 2 years.  His oncologist has encouraged him to stop taking it to see what happens.  He is not comfortable with that, so he keeps taking it and waits for something to changel.  I think PD-1 will be his next choice (he had Ipi prior to Zelboraf and it worked for a couple of months before he progressed).

We have been wondering this exact same thing.  My husband will have been on Zelbiraf for 3 years in October.  A little off and on due to medical stuff…surgeries, kidney issues, liver issues, but mostly on the entire time.  He deals with the joint pain, extreme sun sensitivity, and diarrhea.  He's been NED for  a little more than 2 years.  His oncologist has encouraged him to stop taking it to see what happens.  He is not comfortable with that, so he keeps taking it and waits for something to changel.  I think PD-1 will be his next choice (he had Ipi prior to Zelboraf and it worked for a couple of months before he progressed).

Not sure about statistics, but my husband had a brain met and mets throughout body.  After a craniotomy, gamma knife and 4 months on Vem, he was NED (and has stayed that way for 2 years!).

Not sure about statistics, but my husband had a brain met and mets throughout body.  After a craniotomy, gamma knife and 4 months on Vem, he was NED (and has stayed that way for 2 years!).

Not sure about statistics, but my husband had a brain met and mets throughout body.  After a craniotomy, gamma knife and 4 months on Vem, he was NED (and has stayed that way for 2 years!).

My husband has been through radiation induced necrosis.  About 10 months post craniotomy and 11 months post gamma knife, he had a PETscan which led to his NED status, then 1 week later had a grand mal seizure out of nowhere.  After a MRI, they did diagnosis him with necrosis.  He was put on steroids and anti-seizure meds.  They rescanned in a month and it looked slightly better.   Over the next 6 months, they scanned every 2 months and slowly weaned down on the steroids.  It continued looking slightly better each time.  It took him almost a year to finally get off the steroids (very long year for all of us:)).   It's been almost 18 months since he completely weaned off the steroids.  He remains on anti-seizure meds.  His brain also remains clear.  I know his response isn't typical and many times another craniotomy is necessary to remove the dead tissue, but it is possible:). 

My husband has been through radiation induced necrosis.  About 10 months post craniotomy and 11 months post gamma knife, he had a PETscan which led to his NED status, then 1 week later had a grand mal seizure out of nowhere.  After a MRI, they did diagnosis him with necrosis.  He was put on steroids and anti-seizure meds.  They rescanned in a month and it looked slightly better.   Over the next 6 months, they scanned every 2 months and slowly weaned down on the steroids.  It continued looking slightly better each time.  It took him almost a year to finally get off the steroids (very long year for all of us:)).   It's been almost 18 months since he completely weaned off the steroids.  He remains on anti-seizure meds.  His brain also remains clear.  I know his response isn't typical and many times another craniotomy is necessary to remove the dead tissue, but it is possible:). 

My husband has been through radiation induced necrosis.  About 10 months post craniotomy and 11 months post gamma knife, he had a PETscan which led to his NED status, then 1 week later had a grand mal seizure out of nowhere.  After a MRI, they did diagnosis him with necrosis.  He was put on steroids and anti-seizure meds.  They rescanned in a month and it looked slightly better.   Over the next 6 months, they scanned every 2 months and slowly weaned down on the steroids.  It continued looking slightly better each time.  It took him almost a year to finally get off the steroids (very long year for all of us:)).   It's been almost 18 months since he completely weaned off the steroids.  He remains on anti-seizure meds.  His brain also remains clear.  I know his response isn't typical and many times another craniotomy is necessary to remove the dead tissue, but it is possible:).