Taf and Mek stopped working, finding a way to life my Father in Law’s spirits

Hi,

If he has had gamma knife they must have him on an anti seizure medication, which typically causes sleepiness and for some extreme tiredness.  So, have your BIL ask about side effects and if things might be changed…  – Those with brain mets are more likely to have seizures and a seizures can mean brain cell death… If they don't have him on a anti-seizure medication you need to find out why and look for a another doctor to review his charts. Any patient with brain mets needs to be on an anti-seizure medication for some time after treatment. My Mom had her procedure in April and she has just been weaned off of Keppra.  If things go well she can drive in December! – She will be thrilled!

May I ask what do you mean by they "don’t' think he needs another one"?  I hate to tell you this, but the Neuro-Oncologist my Mom was seeing in Beverly Hills and affiliated with a major hospital said we should wait and see what would happened with the new tumors they found in April. He saw 2 then. – The next day we saw Dr. Chang and he found 5 tumors in her prefrontal cortex alone that needed treatment.  

Since decision making is pretty important, and that is related to the prefrontal cortex, we scheduled gamma knife treatment ASAP and they radiated 17 tumors 1 week and 1 day later. If someone is saying that they "don't seem to think" he needs further treatment AND they have noticed more tumors in follow up exams you really need a second opinion to see what they would do and why. We liked the Neuro-Oncologist, but he gave us poor advice and even the specialist who originally preformed the gamma knife procedure said as much when he found out Dr. Chang sought medical records for her treatment during an emergency consult….

From our experience a second or third opinion in EVERY case has led us to better outcomes and I personally will never take the opinion of just one doctor on anything similar moving forward. We had a diagnosed that MISSED 100% 3 brain tumors that I noticed as unusual when Dr. Bosaberg asked me if I saw anything in my Mom's brain, which was on a plasma screen TV….  In the second case, a radiologist ID'ed multiple brain tumors in follow up exams when he compared the original MRI with the latest MRI. That means that in between times there were issues with reporting new tumors and they just wanted to wait and see what happened as the tumors grew or grew in number. I can't imagine where we would be now. If she had 17 new brain mets in April how many could there have been 2 months later? – I shudder to think of this mistake if we had not sought a second opinion…

Sometimes, you need a second opinion just to make sure you know all the options and sometimes you need a second opinion to find out that something was missed…. I'm lecturing I know, but after the issues we seem to have run into I think you always need to get a second opinion regardless if its good or bad news… Just to be on the safe side…

Regarding brain mets and anti-seizure meds- it's not automatic to put patients with brain mets on anti-seizure medications. It's done on an individual basis considering the location and size of the mets along with the presence/type of effect- in short individual risk assesment. They often ask people not to drive, just to be safe, but it is far more common for them to be put on steroids at least initially. I've had over 20 brain mets- all of which were discovered on routine MRI checkups, and until recently, when an exceptionally large one was found, was never placed on any medication of any kind as I never had any symptoms from them and passed all neurologic exams better than many without brain mets. I've had WBR and 2 rounds of gamma knife about 6 months apart to treat them, and aside from being asked not to drive for 2-3 days post gamma knife have never been placed on anti-seizure meds. Seizure, stroke, anurism, and many other serious complications may result from brain mets- there's no denying that and many doctors may feel that it's prudent (from a legal standpoint, mostly) to cover their bases with an anti-seizure med, but it is not a hard and fast rule to do so just because something shows up on a scan.

In my most recent go-around with brain mets they were, again, discovered by a routinely scheduled MRI check as part of the Merk PD-1 EAP. I NEVER had any symptoms, which made everything all the more surprising that I had a 3.5 cm mass that had grown in less than 3 months with 4-5 smaller ones  hanging out in other areas of my brain. This time, given the size of the larger mass and some evidence that it was bleeding, I WAS placed on steroids- not because of any symptoms or failure of a neuro exam, just as a precaution. I had been previously training for a 5K, teaching at college level and really just living my life. Things moved very quickly after that discovery and I removed myself from my training regimen and began being more careful. The decision was made for a craniotomy for the larger lesion as it was basically to big for another gamma knife and at that point an anti-seizure medication was added as a precaution and in preparation for a surgery which caries a greater risk for things like seizures than does gamma knife. I was on the medication for about 4 days before the surgery (which was the 16th) and will continue for at least the next several weeks, mostly as a precaution as my brain heals. In about 3 weeks I'll go back for a 3rd (and boy do I hope final) gamma knife for the other smaller mets and the (ideally) collapsed/healing area where the larger tumor was. I assume I will continue anti-seizure meds at least until that time, then perhaps for another week or 2 longer, but as I have NEVER had any symptoms or seizures I do expect they will not keep me on them any longer than that until/unless I develop symptoms. I had been told to expect to be in the hospital for a week, but they sent me home after 2 days because I did not show signs of complications and was neurologically quite normal and able to perform normal activities like stairs and getting up/down without stumbling/falling or feeling dizzy. The hope (and my assumption) is that the rest of my recovery will be just as uneventful and quick, but I don't mind taking the anti-seizure meds and not driving as a precaution either. 

As far as side effects- I think mine do make me a little bit sleepy starting about an hour after I take them- it lasts for an hour or 2, I may doze off for a half hour or so, but otherwise I really don't notice anything. I'm being weaned off the steroids (3 more days and I'm done with those- can't wait!) which I think had more side effects than the anti-seizure meds do. The pills are large though (anti-seizure) so I do have to make sure to drink a good amount of water with them to make sure they get all the way down to my stomach.

Regarding other opinions, etc: it's never wrong to get multiple opinions about possibilities and brain mets are scarry (I know), but the point in getting these opinions is to gather information to help YOU decide what is best for YOU, what YOU are most comfortable and confident with- not what someone else is most comfortable and confident with. This is YOUR (or in this case your family member's) body and journey and it's important that you not feel pushed into making a decision you're not sure you're comfortable with or confident about. You don't want to have regrets- even if it takes a couple of extra days, consider the options and make the decision that really does make the most sense to you- the one you won't regret, or wish you had chosen. It's hard and I think we all have moments where we just want something. Anything. NOW! but it really is worth taking as much time as possible (which may not be much- been there as well) to weigh the options and decide the best course of action for your situation. Then you just have to commit amd move forward- never look back!

Best of luck to you!

Regarding brain mets and anti-seizure meds- it's not automatic to put patients with brain mets on anti-seizure medications. It's done on an individual basis considering the location and size of the mets along with the presence/type of effect- in short individual risk assesment. They often ask people not to drive, just to be safe, but it is far more common for them to be put on steroids at least initially. I've had over 20 brain mets- all of which were discovered on routine MRI checkups, and until recently, when an exceptionally large one was found, was never placed on any medication of any kind as I never had any symptoms from them and passed all neurologic exams better than many without brain mets. I've had WBR and 2 rounds of gamma knife about 6 months apart to treat them, and aside from being asked not to drive for 2-3 days post gamma knife have never been placed on anti-seizure meds. Seizure, stroke, anurism, and many other serious complications may result from brain mets- there's no denying that and many doctors may feel that it's prudent (from a legal standpoint, mostly) to cover their bases with an anti-seizure med, but it is not a hard and fast rule to do so just because something shows up on a scan.

In my most recent go-around with brain mets they were, again, discovered by a routinely scheduled MRI check as part of the Merk PD-1 EAP. I NEVER had any symptoms, which made everything all the more surprising that I had a 3.5 cm mass that had grown in less than 3 months with 4-5 smaller ones  hanging out in other areas of my brain. This time, given the size of the larger mass and some evidence that it was bleeding, I WAS placed on steroids- not because of any symptoms or failure of a neuro exam, just as a precaution. I had been previously training for a 5K, teaching at college level and really just living my life. Things moved very quickly after that discovery and I removed myself from my training regimen and began being more careful. The decision was made for a craniotomy for the larger lesion as it was basically to big for another gamma knife and at that point an anti-seizure medication was added as a precaution and in preparation for a surgery which caries a greater risk for things like seizures than does gamma knife. I was on the medication for about 4 days before the surgery (which was the 16th) and will continue for at least the next several weeks, mostly as a precaution as my brain heals. In about 3 weeks I'll go back for a 3rd (and boy do I hope final) gamma knife for the other smaller mets and the (ideally) collapsed/healing area where the larger tumor was. I assume I will continue anti-seizure meds at least until that time, then perhaps for another week or 2 longer, but as I have NEVER had any symptoms or seizures I do expect they will not keep me on them any longer than that until/unless I develop symptoms. I had been told to expect to be in the hospital for a week, but they sent me home after 2 days because I did not show signs of complications and was neurologically quite normal and able to perform normal activities like stairs and getting up/down without stumbling/falling or feeling dizzy. The hope (and my assumption) is that the rest of my recovery will be just as uneventful and quick, but I don't mind taking the anti-seizure meds and not driving as a precaution either. 

As far as side effects- I think mine do make me a little bit sleepy starting about an hour after I take them- it lasts for an hour or 2, I may doze off for a half hour or so, but otherwise I really don't notice anything. I'm being weaned off the steroids (3 more days and I'm done with those- can't wait!) which I think had more side effects than the anti-seizure meds do. The pills are large though (anti-seizure) so I do have to make sure to drink a good amount of water with them to make sure they get all the way down to my stomach.

Regarding other opinions, etc: it's never wrong to get multiple opinions about possibilities and brain mets are scarry (I know), but the point in getting these opinions is to gather information to help YOU decide what is best for YOU, what YOU are most comfortable and confident with- not what someone else is most comfortable and confident with. This is YOUR (or in this case your family member's) body and journey and it's important that you not feel pushed into making a decision you're not sure you're comfortable with or confident about. You don't want to have regrets- even if it takes a couple of extra days, consider the options and make the decision that really does make the most sense to you- the one you won't regret, or wish you had chosen. It's hard and I think we all have moments where we just want something. Anything. NOW! but it really is worth taking as much time as possible (which may not be much- been there as well) to weigh the options and decide the best course of action for your situation. Then you just have to commit amd move forward- never look back!

Best of luck to you!

Regarding brain mets and anti-seizure meds- it's not automatic to put patients with brain mets on anti-seizure medications. It's done on an individual basis considering the location and size of the mets along with the presence/type of effect- in short individual risk assesment. They often ask people not to drive, just to be safe, but it is far more common for them to be put on steroids at least initially. I've had over 20 brain mets- all of which were discovered on routine MRI checkups, and until recently, when an exceptionally large one was found, was never placed on any medication of any kind as I never had any symptoms from them and passed all neurologic exams better than many without brain mets. I've had WBR and 2 rounds of gamma knife about 6 months apart to treat them, and aside from being asked not to drive for 2-3 days post gamma knife have never been placed on anti-seizure meds. Seizure, stroke, anurism, and many other serious complications may result from brain mets- there's no denying that and many doctors may feel that it's prudent (from a legal standpoint, mostly) to cover their bases with an anti-seizure med, but it is not a hard and fast rule to do so just because something shows up on a scan.

In my most recent go-around with brain mets they were, again, discovered by a routinely scheduled MRI check as part of the Merk PD-1 EAP. I NEVER had any symptoms, which made everything all the more surprising that I had a 3.5 cm mass that had grown in less than 3 months with 4-5 smaller ones  hanging out in other areas of my brain. This time, given the size of the larger mass and some evidence that it was bleeding, I WAS placed on steroids- not because of any symptoms or failure of a neuro exam, just as a precaution. I had been previously training for a 5K, teaching at college level and really just living my life. Things moved very quickly after that discovery and I removed myself from my training regimen and began being more careful. The decision was made for a craniotomy for the larger lesion as it was basically to big for another gamma knife and at that point an anti-seizure medication was added as a precaution and in preparation for a surgery which caries a greater risk for things like seizures than does gamma knife. I was on the medication for about 4 days before the surgery (which was the 16th) and will continue for at least the next several weeks, mostly as a precaution as my brain heals. In about 3 weeks I'll go back for a 3rd (and boy do I hope final) gamma knife for the other smaller mets and the (ideally) collapsed/healing area where the larger tumor was. I assume I will continue anti-seizure meds at least until that time, then perhaps for another week or 2 longer, but as I have NEVER had any symptoms or seizures I do expect they will not keep me on them any longer than that until/unless I develop symptoms. I had been told to expect to be in the hospital for a week, but they sent me home after 2 days because I did not show signs of complications and was neurologically quite normal and able to perform normal activities like stairs and getting up/down without stumbling/falling or feeling dizzy. The hope (and my assumption) is that the rest of my recovery will be just as uneventful and quick, but I don't mind taking the anti-seizure meds and not driving as a precaution either. 

As far as side effects- I think mine do make me a little bit sleepy starting about an hour after I take them- it lasts for an hour or 2, I may doze off for a half hour or so, but otherwise I really don't notice anything. I'm being weaned off the steroids (3 more days and I'm done with those- can't wait!) which I think had more side effects than the anti-seizure meds do. The pills are large though (anti-seizure) so I do have to make sure to drink a good amount of water with them to make sure they get all the way down to my stomach.

Regarding other opinions, etc: it's never wrong to get multiple opinions about possibilities and brain mets are scarry (I know), but the point in getting these opinions is to gather information to help YOU decide what is best for YOU, what YOU are most comfortable and confident with- not what someone else is most comfortable and confident with. This is YOUR (or in this case your family member's) body and journey and it's important that you not feel pushed into making a decision you're not sure you're comfortable with or confident about. You don't want to have regrets- even if it takes a couple of extra days, consider the options and make the decision that really does make the most sense to you- the one you won't regret, or wish you had chosen. It's hard and I think we all have moments where we just want something. Anything. NOW! but it really is worth taking as much time as possible (which may not be much- been there as well) to weigh the options and decide the best course of action for your situation. Then you just have to commit amd move forward- never look back!

Best of luck to you!

Hi,

If he has had gamma knife they must have him on an anti seizure medication, which typically causes sleepiness and for some extreme tiredness.  So, have your BIL ask about side effects and if things might be changed…  – Those with brain mets are more likely to have seizures and a seizures can mean brain cell death… If they don't have him on a anti-seizure medication you need to find out why and look for a another doctor to review his charts. Any patient with brain mets needs to be on an anti-seizure medication for some time after treatment. My Mom had her procedure in April and she has just been weaned off of Keppra.  If things go well she can drive in December! – She will be thrilled!

May I ask what do you mean by they "don’t' think he needs another one"?  I hate to tell you this, but the Neuro-Oncologist my Mom was seeing in Beverly Hills and affiliated with a major hospital said we should wait and see what would happened with the new tumors they found in April. He saw 2 then. – The next day we saw Dr. Chang and he found 5 tumors in her prefrontal cortex alone that needed treatment.  

Since decision making is pretty important, and that is related to the prefrontal cortex, we scheduled gamma knife treatment ASAP and they radiated 17 tumors 1 week and 1 day later. If someone is saying that they "don't seem to think" he needs further treatment AND they have noticed more tumors in follow up exams you really need a second opinion to see what they would do and why. We liked the Neuro-Oncologist, but he gave us poor advice and even the specialist who originally preformed the gamma knife procedure said as much when he found out Dr. Chang sought medical records for her treatment during an emergency consult….

From our experience a second or third opinion in EVERY case has led us to better outcomes and I personally will never take the opinion of just one doctor on anything similar moving forward. We had a diagnosed that MISSED 100% 3 brain tumors that I noticed as unusual when Dr. Bosaberg asked me if I saw anything in my Mom's brain, which was on a plasma screen TV….  In the second case, a radiologist ID'ed multiple brain tumors in follow up exams when he compared the original MRI with the latest MRI. That means that in between times there were issues with reporting new tumors and they just wanted to wait and see what happened as the tumors grew or grew in number. I can't imagine where we would be now. If she had 17 new brain mets in April how many could there have been 2 months later? – I shudder to think of this mistake if we had not sought a second opinion…

Sometimes, you need a second opinion just to make sure you know all the options and sometimes you need a second opinion to find out that something was missed…. I'm lecturing I know, but after the issues we seem to have run into I think you always need to get a second opinion regardless if its good or bad news… Just to be on the safe side…

Hi,

If he has had gamma knife they must have him on an anti seizure medication, which typically causes sleepiness and for some extreme tiredness.  So, have your BIL ask about side effects and if things might be changed…  – Those with brain mets are more likely to have seizures and a seizures can mean brain cell death… If they don't have him on a anti-seizure medication you need to find out why and look for a another doctor to review his charts. Any patient with brain mets needs to be on an anti-seizure medication for some time after treatment. My Mom had her procedure in April and she has just been weaned off of Keppra.  If things go well she can drive in December! – She will be thrilled!

May I ask what do you mean by they "don’t' think he needs another one"?  I hate to tell you this, but the Neuro-Oncologist my Mom was seeing in Beverly Hills and affiliated with a major hospital said we should wait and see what would happened with the new tumors they found in April. He saw 2 then. – The next day we saw Dr. Chang and he found 5 tumors in her prefrontal cortex alone that needed treatment.  

Since decision making is pretty important, and that is related to the prefrontal cortex, we scheduled gamma knife treatment ASAP and they radiated 17 tumors 1 week and 1 day later. If someone is saying that they "don't seem to think" he needs further treatment AND they have noticed more tumors in follow up exams you really need a second opinion to see what they would do and why. We liked the Neuro-Oncologist, but he gave us poor advice and even the specialist who originally preformed the gamma knife procedure said as much when he found out Dr. Chang sought medical records for her treatment during an emergency consult….

From our experience a second or third opinion in EVERY case has led us to better outcomes and I personally will never take the opinion of just one doctor on anything similar moving forward. We had a diagnosed that MISSED 100% 3 brain tumors that I noticed as unusual when Dr. Bosaberg asked me if I saw anything in my Mom's brain, which was on a plasma screen TV….  In the second case, a radiologist ID'ed multiple brain tumors in follow up exams when he compared the original MRI with the latest MRI. That means that in between times there were issues with reporting new tumors and they just wanted to wait and see what happened as the tumors grew or grew in number. I can't imagine where we would be now. If she had 17 new brain mets in April how many could there have been 2 months later? – I shudder to think of this mistake if we had not sought a second opinion…

Sometimes, you need a second opinion just to make sure you know all the options and sometimes you need a second opinion to find out that something was missed…. I'm lecturing I know, but after the issues we seem to have run into I think you always need to get a second opinion regardless if its good or bad news… Just to be on the safe side…