Good News for a Year. Now a Brain Met…

Patina, I am sorry you and your mom are facing this.  Did the docs tell you they could not use SRS on this brain met?  I guess if they feel that she has had too much radiation to the area from the prior treatment that is one thing…but SRS can be used with a great deal of accuracy for just one small met.  Also, if at all possible I don't think there would be any benefit in waiting after radiation (if that is what she ends up doing) to start anti-PD1.  The synergistic effects of immunotherapy WITH radiation are becoming more and more recognized.  Here is some info:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/radiation-for-melanomabetter-when.html

Additionally, here are two trials for patients with untreated brain mets.  Not sure that you would prefer to go that way…but here they are: 

This one is with Pembro:   http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-pembrolizumab-keytruda.html

This one is an ipi/nivo combo followed by nivo alone.  (Not sure if prior ipi is an exclusion, you would have to check if you are interested.):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-new-trial-for-melanoma-brain.html

I am sorry I don't have any info on the procedure you are looking at, perhaps others will. I wish you and your mom my best.  Celeste

Patina, I am sorry you and your mom are facing this.  Did the docs tell you they could not use SRS on this brain met?  I guess if they feel that she has had too much radiation to the area from the prior treatment that is one thing…but SRS can be used with a great deal of accuracy for just one small met.  Also, if at all possible I don't think there would be any benefit in waiting after radiation (if that is what she ends up doing) to start anti-PD1.  The synergistic effects of immunotherapy WITH radiation are becoming more and more recognized.  Here is some info:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/radiation-for-melanomabetter-when.html

Additionally, here are two trials for patients with untreated brain mets.  Not sure that you would prefer to go that way…but here they are: 

This one is with Pembro:   http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-pembrolizumab-keytruda.html

This one is an ipi/nivo combo followed by nivo alone.  (Not sure if prior ipi is an exclusion, you would have to check if you are interested.):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-new-trial-for-melanoma-brain.html

I am sorry I don't have any info on the procedure you are looking at, perhaps others will. I wish you and your mom my best.  Celeste

Patina, I am sorry you and your mom are facing this.  Did the docs tell you they could not use SRS on this brain met?  I guess if they feel that she has had too much radiation to the area from the prior treatment that is one thing…but SRS can be used with a great deal of accuracy for just one small met.  Also, if at all possible I don't think there would be any benefit in waiting after radiation (if that is what she ends up doing) to start anti-PD1.  The synergistic effects of immunotherapy WITH radiation are becoming more and more recognized.  Here is some info:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/radiation-for-melanomabetter-when.html

Additionally, here are two trials for patients with untreated brain mets.  Not sure that you would prefer to go that way…but here they are: 

This one is with Pembro:   http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-pembrolizumab-keytruda.html

This one is an ipi/nivo combo followed by nivo alone.  (Not sure if prior ipi is an exclusion, you would have to check if you are interested.):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-new-trial-for-melanoma-brain.html

I am sorry I don't have any info on the procedure you are looking at, perhaps others will. I wish you and your mom my best.  Celeste

Not sure about surgery and Keytruda. The docs would know better. But like Celeste says if they do radiation there is no need to wait on keytruda. It is actually better in my opinion to be on it for awhile and radiate. I had 3 in my skull. 2 were pressing on and displacing my brain. Only 1 of those is left. That's the one they radiated and I was on keytruda. The other 2 were close to the radiated area and are virtually gone to use the report word. Doc said they were so small they couldn't hardly see them anymore. Thst was last sept they radiated. I've had 2 follow up head scans so far. 

Artie

Not sure about surgery and Keytruda. The docs would know better. But like Celeste says if they do radiation there is no need to wait on keytruda. It is actually better in my opinion to be on it for awhile and radiate. I had 3 in my skull. 2 were pressing on and displacing my brain. Only 1 of those is left. That's the one they radiated and I was on keytruda. The other 2 were close to the radiated area and are virtually gone to use the report word. Doc said they were so small they couldn't hardly see them anymore. Thst was last sept they radiated. I've had 2 follow up head scans so far. 

Artie

Not sure about surgery and Keytruda. The docs would know better. But like Celeste says if they do radiation there is no need to wait on keytruda. It is actually better in my opinion to be on it for awhile and radiate. I had 3 in my skull. 2 were pressing on and displacing my brain. Only 1 of those is left. That's the one they radiated and I was on keytruda. The other 2 were close to the radiated area and are virtually gone to use the report word. Doc said they were so small they couldn't hardly see them anymore. Thst was last sept they radiated. I've had 2 follow up head scans so far. 

Artie

I haven't been on in a while, but find myself with a few min today during lunch, so here's my experience with brain mets:

2013: WBR for 7 brain mets + possible leptomeningeal disease

2014: Jan- 5 mets treated with SRS, May- 6 new treated with SRS, June- started Keytruda, Sept- new 3.5 cm mass plus 5 others (not over 1cm), craniotomy

My story is not really the same as your mom's, but we do share a few common aspects (repeated brain mets, multiple rounds of SRS that seem effective until a new one shows up, etc). 

I was already on Keytruda for 3 months before they found the last round, so there's a difference there. They did "pull me off" the drug for the surgery, but my recovery went well enough that I actually did not get off schedule with it. I had the same conversation about doing SRS instead (the thought of craniotomy was terrifying for me). In my case, they thought that the large mass was one of the ones that had been treated in May (again couldn't tell if it was or a new on right next to it). They also didn't want to re-treat because they did not believe it would be as effective and, in my case, the size. 

My plan was to do a craniotomy on the large one, then return a couple weeks later for SRS on the rest as well as the surgical site to get any cells that might be leftover. I was terrified about the surgery and potential recovery complications, etc. I had just started a new job as well and was feeling very stressed about having to do something like this soo soon. 

The surgery went very well and instead of being in the hospital for a week (as they had told me to plan on), they sent me home 2 days later because I could walk, balance, and go up and down stairs without assistance. I still took a full 2 weeks off (including the surgery) from work but probably didn't need to. I wasn't allowed to drive until after the recheck, which was a hastle (mostly for my husband) but otherwise did much better than I thought with the surgery. Every case and every person is different, so I don't want to make you think it would a walk in park- if you go with craniotomy, you should still be prepared. 

At the recheck, I had some very interesting news: the mass turned out to be completely composed of dead tumor cells. They were unsure of whether or not this was radiation necrosis or whether the keytruda was working in my brain. The other mets that we had planned on doing SRS were also shrinking, so I ended up not having to do any additional radiation on those either. I was back on my keytruda schedule and everything has been good since. Coming up on 1 year of keytruda next week. The theory is that keytruda is working in my brain. Keep in mind that no one can determine the difference between a live and a dead/dying tumor with imaging. My thoughts on biopsy- I haven't read about this new technique, but if you're going to biopsy, why not just get it all out?

Again, your mom isn't yet on keytruda and they may not want to start her until after the surgery, if you go for that. If you push for (and get) more SRS, there shouldn't be any reason to delay keytruda. Depending on when they do the surgery (if that's the way you go) I wonder if it would be possible to get a dose in first then do the surgery a couple of weeks later (I don't know the specificis of your mom's case and what the urgency really is). I wonder if they may be concerned about side effects from a drug she hasn't had yet been exposed to, but if she gets a dose and does well, it may be of benifit both by easing concerns about side effects and by getting some into her system and getting any possible benefit going sooner. 

As with everything, it's a difficult but very personal decision about what is best for you (or in this case your mom). I don't think anyone else should be telling you what is best. All we should be doing is sharing our sympathies and experiences while still noting that every one is different. 

Best of luck

-Eva

I haven't been on in a while, but find myself with a few min today during lunch, so here's my experience with brain mets:

2013: WBR for 7 brain mets + possible leptomeningeal disease

2014: Jan- 5 mets treated with SRS, May- 6 new treated with SRS, June- started Keytruda, Sept- new 3.5 cm mass plus 5 others (not over 1cm), craniotomy

My story is not really the same as your mom's, but we do share a few common aspects (repeated brain mets, multiple rounds of SRS that seem effective until a new one shows up, etc). 

I was already on Keytruda for 3 months before they found the last round, so there's a difference there. They did "pull me off" the drug for the surgery, but my recovery went well enough that I actually did not get off schedule with it. I had the same conversation about doing SRS instead (the thought of craniotomy was terrifying for me). In my case, they thought that the large mass was one of the ones that had been treated in May (again couldn't tell if it was or a new on right next to it). They also didn't want to re-treat because they did not believe it would be as effective and, in my case, the size. 

My plan was to do a craniotomy on the large one, then return a couple weeks later for SRS on the rest as well as the surgical site to get any cells that might be leftover. I was terrified about the surgery and potential recovery complications, etc. I had just started a new job as well and was feeling very stressed about having to do something like this soo soon. 

The surgery went very well and instead of being in the hospital for a week (as they had told me to plan on), they sent me home 2 days later because I could walk, balance, and go up and down stairs without assistance. I still took a full 2 weeks off (including the surgery) from work but probably didn't need to. I wasn't allowed to drive until after the recheck, which was a hastle (mostly for my husband) but otherwise did much better than I thought with the surgery. Every case and every person is different, so I don't want to make you think it would a walk in park- if you go with craniotomy, you should still be prepared. 

At the recheck, I had some very interesting news: the mass turned out to be completely composed of dead tumor cells. They were unsure of whether or not this was radiation necrosis or whether the keytruda was working in my brain. The other mets that we had planned on doing SRS were also shrinking, so I ended up not having to do any additional radiation on those either. I was back on my keytruda schedule and everything has been good since. Coming up on 1 year of keytruda next week. The theory is that keytruda is working in my brain. Keep in mind that no one can determine the difference between a live and a dead/dying tumor with imaging. My thoughts on biopsy- I haven't read about this new technique, but if you're going to biopsy, why not just get it all out?

Again, your mom isn't yet on keytruda and they may not want to start her until after the surgery, if you go for that. If you push for (and get) more SRS, there shouldn't be any reason to delay keytruda. Depending on when they do the surgery (if that's the way you go) I wonder if it would be possible to get a dose in first then do the surgery a couple of weeks later (I don't know the specificis of your mom's case and what the urgency really is). I wonder if they may be concerned about side effects from a drug she hasn't had yet been exposed to, but if she gets a dose and does well, it may be of benifit both by easing concerns about side effects and by getting some into her system and getting any possible benefit going sooner. 

As with everything, it's a difficult but very personal decision about what is best for you (or in this case your mom). I don't think anyone else should be telling you what is best. All we should be doing is sharing our sympathies and experiences while still noting that every one is different. 

Best of luck

-Eva

I haven't been on in a while, but find myself with a few min today during lunch, so here's my experience with brain mets:

2013: WBR for 7 brain mets + possible leptomeningeal disease

2014: Jan- 5 mets treated with SRS, May- 6 new treated with SRS, June- started Keytruda, Sept- new 3.5 cm mass plus 5 others (not over 1cm), craniotomy

My story is not really the same as your mom's, but we do share a few common aspects (repeated brain mets, multiple rounds of SRS that seem effective until a new one shows up, etc). 

I was already on Keytruda for 3 months before they found the last round, so there's a difference there. They did "pull me off" the drug for the surgery, but my recovery went well enough that I actually did not get off schedule with it. I had the same conversation about doing SRS instead (the thought of craniotomy was terrifying for me). In my case, they thought that the large mass was one of the ones that had been treated in May (again couldn't tell if it was or a new on right next to it). They also didn't want to re-treat because they did not believe it would be as effective and, in my case, the size. 

My plan was to do a craniotomy on the large one, then return a couple weeks later for SRS on the rest as well as the surgical site to get any cells that might be leftover. I was terrified about the surgery and potential recovery complications, etc. I had just started a new job as well and was feeling very stressed about having to do something like this soo soon. 

The surgery went very well and instead of being in the hospital for a week (as they had told me to plan on), they sent me home 2 days later because I could walk, balance, and go up and down stairs without assistance. I still took a full 2 weeks off (including the surgery) from work but probably didn't need to. I wasn't allowed to drive until after the recheck, which was a hastle (mostly for my husband) but otherwise did much better than I thought with the surgery. Every case and every person is different, so I don't want to make you think it would a walk in park- if you go with craniotomy, you should still be prepared. 

At the recheck, I had some very interesting news: the mass turned out to be completely composed of dead tumor cells. They were unsure of whether or not this was radiation necrosis or whether the keytruda was working in my brain. The other mets that we had planned on doing SRS were also shrinking, so I ended up not having to do any additional radiation on those either. I was back on my keytruda schedule and everything has been good since. Coming up on 1 year of keytruda next week. The theory is that keytruda is working in my brain. Keep in mind that no one can determine the difference between a live and a dead/dying tumor with imaging. My thoughts on biopsy- I haven't read about this new technique, but if you're going to biopsy, why not just get it all out?

Again, your mom isn't yet on keytruda and they may not want to start her until after the surgery, if you go for that. If you push for (and get) more SRS, there shouldn't be any reason to delay keytruda. Depending on when they do the surgery (if that's the way you go) I wonder if it would be possible to get a dose in first then do the surgery a couple of weeks later (I don't know the specificis of your mom's case and what the urgency really is). I wonder if they may be concerned about side effects from a drug she hasn't had yet been exposed to, but if she gets a dose and does well, it may be of benifit both by easing concerns about side effects and by getting some into her system and getting any possible benefit going sooner. 

As with everything, it's a difficult but very personal decision about what is best for you (or in this case your mom). I don't think anyone else should be telling you what is best. All we should be doing is sharing our sympathies and experiences while still noting that every one is different. 

Best of luck

-Eva

Hi Patina,

I'm sorry it looks like your mother is having this setback. My short answer to your question is, no. I had a recurrence (area was previously cyberknifed at Kaiser in 2010 but grew back bigger, about 3+ cm), it was treated with craniotomy at UCSF in 2011.

Laster UCSF did some advanced MRI scans with "perfusion" in 2012 to help determine whether something lighting up the MRI was a new tumor, or instead radiation effect and/or swelling from IPI. They decided it looked more like radiation effect, and so far the area hasn't given me further problems.

Hope that helps. 

– Kyle

Hi Patina,

I'm sorry it looks like your mother is having this setback. My short answer to your question is, no. I had a recurrence (area was previously cyberknifed at Kaiser in 2010 but grew back bigger, about 3+ cm), it was treated with craniotomy at UCSF in 2011.

Laster UCSF did some advanced MRI scans with "perfusion" in 2012 to help determine whether something lighting up the MRI was a new tumor, or instead radiation effect and/or swelling from IPI. They decided it looked more like radiation effect, and so far the area hasn't given me further problems.

Hope that helps. 

– Kyle

Hi Patina,

I'm sorry it looks like your mother is having this setback. My short answer to your question is, no. I had a recurrence (area was previously cyberknifed at Kaiser in 2010 but grew back bigger, about 3+ cm), it was treated with craniotomy at UCSF in 2011.

Laster UCSF did some advanced MRI scans with "perfusion" in 2012 to help determine whether something lighting up the MRI was a new tumor, or instead radiation effect and/or swelling from IPI. They decided it looked more like radiation effect, and so far the area hasn't given me further problems.

Hope that helps. 

– Kyle