WBR, Ipi and steroids

Hi Donna,

I did WBR the first part of January 2013.  I was on Zelboraf at the time and the 1 brain met I had shrunk from 12mm to 8mm.  I didn't do the Ipi and WBR but I have heard that Ipi and Radiation are a great combo showing good results.  I am now doing Ipi my 2nd infusion was last Thursday and I will be getting gamma knife this Thursday August 1st.  I was wondering if your doctor could switch you over to Dabrafenib?  It's also a Braf inhibitor but it's been proven to cross into the Brain Barrier better than Zelboraf.  It's also supposed to have less side effects than Z.

I believe the Ipi/Radiation combo will work but like I was told the Ipi takes awhile to work.  The WBR should shrink them down enough to get the Ipi going.  Again I didn't do this combo but logically thinking it should work.  You should be thinking ahead about going into an Anti PD 1 trial as well.  You will need 8 weeks stable brain scans but you should be able to do it.  

All my best to you and your husband.

Denise

Hi Donna,

I did WBR the first part of January 2013.  I was on Zelboraf at the time and the 1 brain met I had shrunk from 12mm to 8mm.  I didn't do the Ipi and WBR but I have heard that Ipi and Radiation are a great combo showing good results.  I am now doing Ipi my 2nd infusion was last Thursday and I will be getting gamma knife this Thursday August 1st.  I was wondering if your doctor could switch you over to Dabrafenib?  It's also a Braf inhibitor but it's been proven to cross into the Brain Barrier better than Zelboraf.  It's also supposed to have less side effects than Z.

I believe the Ipi/Radiation combo will work but like I was told the Ipi takes awhile to work.  The WBR should shrink them down enough to get the Ipi going.  Again I didn't do this combo but logically thinking it should work.  You should be thinking ahead about going into an Anti PD 1 trial as well.  You will need 8 weeks stable brain scans but you should be able to do it.  

All my best to you and your husband.

Denise

Hi Donna,

I did WBR the first part of January 2013.  I was on Zelboraf at the time and the 1 brain met I had shrunk from 12mm to 8mm.  I didn't do the Ipi and WBR but I have heard that Ipi and Radiation are a great combo showing good results.  I am now doing Ipi my 2nd infusion was last Thursday and I will be getting gamma knife this Thursday August 1st.  I was wondering if your doctor could switch you over to Dabrafenib?  It's also a Braf inhibitor but it's been proven to cross into the Brain Barrier better than Zelboraf.  It's also supposed to have less side effects than Z.

I believe the Ipi/Radiation combo will work but like I was told the Ipi takes awhile to work.  The WBR should shrink them down enough to get the Ipi going.  Again I didn't do this combo but logically thinking it should work.  You should be thinking ahead about going into an Anti PD 1 trial as well.  You will need 8 weeks stable brain scans but you should be able to do it.  

All my best to you and your husband.

Denise

I wish I had some advice for you, hopefully someone will chime in.

It is not correct that all anti pd1 trials require 8 wks brain stability. Each trial has its own requirements. The Merck trial I’m on only requires 4 weeks.

Keep fighting! I’m still here after brain mets and a year and a half with a cardiac met. Anything is possible!

I wish I had some advice for you, hopefully someone will chime in.

It is not correct that all anti pd1 trials require 8 wks brain stability. Each trial has its own requirements. The Merck trial I’m on only requires 4 weeks.

Keep fighting! I’m still here after brain mets and a year and a half with a cardiac met. Anything is possible!

I wish I had some advice for you, hopefully someone will chime in.

It is not correct that all anti pd1 trials require 8 wks brain stability. Each trial has its own requirements. The Merck trial I’m on only requires 4 weeks.

Keep fighting! I’m still here after brain mets and a year and a half with a cardiac met. Anything is possible!

Hi Donna,

I'm also a stage IV with mainly subQ and brain, but with a history of lung and spinal mets as well. I have not yet been placed on any of the BRAF inhibitors, but with the appearance of brain mets I did begin WBR and Ipi at the same time. I did 3 weeks of WBR and got my first dose of Ipi the first week of radiation. I just got my third dose of Ipi on Friday. I also did not qualify for SRS because I had too many brain mets. The largest of my mets was only 4mm and I have never had symptoms, so I've never had to have a conversation about steroids, so I may not be that helpuful. 

It is true that if at all possible steroids are avoided with any of the immune therapies because steroids tend to dampen the immune response, which is counterproductive when you're trying to stimulate it with immune therapies like Ipi. However if your husband is symptomatic that's another issue and you and your doctors are going to have to sort out how to proceed- whether it means delaying the start of Ipi until the swelling can be calmed down, etc. There is some thought that radiation may enhance the effects of Ipi through the abscopal effect. Basically the idea is that by causing damage to the tumors with radiation more antigens (the proteins the immune system recognises) may be exposed which allows for a better immune response. It hasn't been proven for every case, but there seems to be a growing consensus that it's worth a try since the side effects of both together are generally very managable. 

Also, regarding Ipi- it is one of the few drugs available that has actually been studied specifically in patients with brain mets. The studies have shown that patients with brain mets are just as likely to respond to Ipi as those with clear MRI's and that when they respond the brain mets respond to the same degree as mets in the rest of the body. Ipi does not cross the blood brain barrier, but the immune cells it activates does, so what this means is that if your husband gets a response from Ipi, it should work just as well in his brain as it does anywhere else in his body. 

When I started my WBR the radiation oncologist told me that patients who are symptomatic at the start of WBR often feel better by the time it's done, so hopefully that will be the case for your husband as well. I'm not sure that delaying Ipi by 1 week will make too much of a difference- you'll still be starting it during WBR, but conference with your doctors about the best way to proceed. Every case is different and Ipi can take quite a while to show a response so I know many doctors (mine included) want to start is ASAP. For me, the goal was to hopefully take advantage of the abscopal effect, but at least stabilize if not shrink the brain mets long enough for Ipi to start working, I'm guessing the plan was similar for your husband. 

I will also say that towards the end of WBR I was quite nauseated and had a poor appetite. Having the Ipi along with it made it a little tougher to sort out what side effects came from which treatments so it's really important to keep your doctors updated on any symptoms your husband has so they can stay on top of things. I finished my WBR on July 5 and I felt progressively worse for about a week after I fihished, then over the next week began to feel much better. I guess I'm saying this to say, it may be a rough ride for a few weeks, but hang in there, hopefully it gets better. WBR can be tough, especially if he's already sypmtomatic for the brain mets. Work with your doctors and make sure to tell them what's going on- they're hoping to start Ipi ASAP, but it might just not be possible this week. Plans sometimes have to change, and that might be OK. 

Wishing you the best of luck on your journey and hoping for a quick response for your husband

-Eva

Hi Donna,

I'm also a stage IV with mainly subQ and brain, but with a history of lung and spinal mets as well. I have not yet been placed on any of the BRAF inhibitors, but with the appearance of brain mets I did begin WBR and Ipi at the same time. I did 3 weeks of WBR and got my first dose of Ipi the first week of radiation. I just got my third dose of Ipi on Friday. I also did not qualify for SRS because I had too many brain mets. The largest of my mets was only 4mm and I have never had symptoms, so I've never had to have a conversation about steroids, so I may not be that helpuful. 

It is true that if at all possible steroids are avoided with any of the immune therapies because steroids tend to dampen the immune response, which is counterproductive when you're trying to stimulate it with immune therapies like Ipi. However if your husband is symptomatic that's another issue and you and your doctors are going to have to sort out how to proceed- whether it means delaying the start of Ipi until the swelling can be calmed down, etc. There is some thought that radiation may enhance the effects of Ipi through the abscopal effect. Basically the idea is that by causing damage to the tumors with radiation more antigens (the proteins the immune system recognises) may be exposed which allows for a better immune response. It hasn't been proven for every case, but there seems to be a growing consensus that it's worth a try since the side effects of both together are generally very managable. 

Also, regarding Ipi- it is one of the few drugs available that has actually been studied specifically in patients with brain mets. The studies have shown that patients with brain mets are just as likely to respond to Ipi as those with clear MRI's and that when they respond the brain mets respond to the same degree as mets in the rest of the body. Ipi does not cross the blood brain barrier, but the immune cells it activates does, so what this means is that if your husband gets a response from Ipi, it should work just as well in his brain as it does anywhere else in his body. 

When I started my WBR the radiation oncologist told me that patients who are symptomatic at the start of WBR often feel better by the time it's done, so hopefully that will be the case for your husband as well. I'm not sure that delaying Ipi by 1 week will make too much of a difference- you'll still be starting it during WBR, but conference with your doctors about the best way to proceed. Every case is different and Ipi can take quite a while to show a response so I know many doctors (mine included) want to start is ASAP. For me, the goal was to hopefully take advantage of the abscopal effect, but at least stabilize if not shrink the brain mets long enough for Ipi to start working, I'm guessing the plan was similar for your husband. 

I will also say that towards the end of WBR I was quite nauseated and had a poor appetite. Having the Ipi along with it made it a little tougher to sort out what side effects came from which treatments so it's really important to keep your doctors updated on any symptoms your husband has so they can stay on top of things. I finished my WBR on July 5 and I felt progressively worse for about a week after I fihished, then over the next week began to feel much better. I guess I'm saying this to say, it may be a rough ride for a few weeks, but hang in there, hopefully it gets better. WBR can be tough, especially if he's already sypmtomatic for the brain mets. Work with your doctors and make sure to tell them what's going on- they're hoping to start Ipi ASAP, but it might just not be possible this week. Plans sometimes have to change, and that might be OK. 

Wishing you the best of luck on your journey and hoping for a quick response for your husband

-Eva

Hi Donna,

I'm also a stage IV with mainly subQ and brain, but with a history of lung and spinal mets as well. I have not yet been placed on any of the BRAF inhibitors, but with the appearance of brain mets I did begin WBR and Ipi at the same time. I did 3 weeks of WBR and got my first dose of Ipi the first week of radiation. I just got my third dose of Ipi on Friday. I also did not qualify for SRS because I had too many brain mets. The largest of my mets was only 4mm and I have never had symptoms, so I've never had to have a conversation about steroids, so I may not be that helpuful. 

It is true that if at all possible steroids are avoided with any of the immune therapies because steroids tend to dampen the immune response, which is counterproductive when you're trying to stimulate it with immune therapies like Ipi. However if your husband is symptomatic that's another issue and you and your doctors are going to have to sort out how to proceed- whether it means delaying the start of Ipi until the swelling can be calmed down, etc. There is some thought that radiation may enhance the effects of Ipi through the abscopal effect. Basically the idea is that by causing damage to the tumors with radiation more antigens (the proteins the immune system recognises) may be exposed which allows for a better immune response. It hasn't been proven for every case, but there seems to be a growing consensus that it's worth a try since the side effects of both together are generally very managable. 

Also, regarding Ipi- it is one of the few drugs available that has actually been studied specifically in patients with brain mets. The studies have shown that patients with brain mets are just as likely to respond to Ipi as those with clear MRI's and that when they respond the brain mets respond to the same degree as mets in the rest of the body. Ipi does not cross the blood brain barrier, but the immune cells it activates does, so what this means is that if your husband gets a response from Ipi, it should work just as well in his brain as it does anywhere else in his body. 

When I started my WBR the radiation oncologist told me that patients who are symptomatic at the start of WBR often feel better by the time it's done, so hopefully that will be the case for your husband as well. I'm not sure that delaying Ipi by 1 week will make too much of a difference- you'll still be starting it during WBR, but conference with your doctors about the best way to proceed. Every case is different and Ipi can take quite a while to show a response so I know many doctors (mine included) want to start is ASAP. For me, the goal was to hopefully take advantage of the abscopal effect, but at least stabilize if not shrink the brain mets long enough for Ipi to start working, I'm guessing the plan was similar for your husband. 

I will also say that towards the end of WBR I was quite nauseated and had a poor appetite. Having the Ipi along with it made it a little tougher to sort out what side effects came from which treatments so it's really important to keep your doctors updated on any symptoms your husband has so they can stay on top of things. I finished my WBR on July 5 and I felt progressively worse for about a week after I fihished, then over the next week began to feel much better. I guess I'm saying this to say, it may be a rough ride for a few weeks, but hang in there, hopefully it gets better. WBR can be tough, especially if he's already sypmtomatic for the brain mets. Work with your doctors and make sure to tell them what's going on- they're hoping to start Ipi ASAP, but it might just not be possible this week. Plans sometimes have to change, and that might be OK. 

Wishing you the best of luck on your journey and hoping for a quick response for your husband

-Eva

Hi Donna,

I have not had WBR, but I have had ipi and SRS (I am BRAF neg).  

My first round of ipi was in Dec/Jan 2011-2012.  I had a lung met removed in Sep 2011 so I was NED when I started ipi.  After my third bag I had a terrible headache (it felt like something was pushing out my right eye).  It turned out to be a swollen pituitary gland and I was put on decadron.  It relieved the swelling and pain immediately, but decadron side effects can be tough (no sleep, excessive eating, too much energy, etc., but they are worth it).

In June of 2012 I discovered a brain met.  I tried SRS (in July) but the met did not respond.  I had a second round of ipi Sep/Oct and then craniotomy #1 in November.  A recurrence of the brain met was discovered in April, followed by SRS #2 in May and then Crani #2 in June.  

I think the data on ipi are still 'anecdotal' but I do feel something is happening (as does my med onc).  Since my lung surgery in 2011 I have not had another systemic met, and I have had the one brain met plus the recurrence in the 13 months since the discovery of the initial brain met [I am NED as of the last scans five weeks ago]. 

Good luck to your husband . . . and to you-please don't forget to spoil yourself somehow to relieve some of YOUR stress.

Brendan

Hi Donna,

I have not had WBR, but I have had ipi and SRS (I am BRAF neg).  

My first round of ipi was in Dec/Jan 2011-2012.  I had a lung met removed in Sep 2011 so I was NED when I started ipi.  After my third bag I had a terrible headache (it felt like something was pushing out my right eye).  It turned out to be a swollen pituitary gland and I was put on decadron.  It relieved the swelling and pain immediately, but decadron side effects can be tough (no sleep, excessive eating, too much energy, etc., but they are worth it).

In June of 2012 I discovered a brain met.  I tried SRS (in July) but the met did not respond.  I had a second round of ipi Sep/Oct and then craniotomy #1 in November.  A recurrence of the brain met was discovered in April, followed by SRS #2 in May and then Crani #2 in June.  

I think the data on ipi are still 'anecdotal' but I do feel something is happening (as does my med onc).  Since my lung surgery in 2011 I have not had another systemic met, and I have had the one brain met plus the recurrence in the 13 months since the discovery of the initial brain met [I am NED as of the last scans five weeks ago]. 

Good luck to your husband . . . and to you-please don't forget to spoil yourself somehow to relieve some of YOUR stress.

Brendan

Hi Donna,

I have not had WBR, but I have had ipi and SRS (I am BRAF neg).  

My first round of ipi was in Dec/Jan 2011-2012.  I had a lung met removed in Sep 2011 so I was NED when I started ipi.  After my third bag I had a terrible headache (it felt like something was pushing out my right eye).  It turned out to be a swollen pituitary gland and I was put on decadron.  It relieved the swelling and pain immediately, but decadron side effects can be tough (no sleep, excessive eating, too much energy, etc., but they are worth it).

In June of 2012 I discovered a brain met.  I tried SRS (in July) but the met did not respond.  I had a second round of ipi Sep/Oct and then craniotomy #1 in November.  A recurrence of the brain met was discovered in April, followed by SRS #2 in May and then Crani #2 in June.  

I think the data on ipi are still 'anecdotal' but I do feel something is happening (as does my med onc).  Since my lung surgery in 2011 I have not had another systemic met, and I have had the one brain met plus the recurrence in the 13 months since the discovery of the initial brain met [I am NED as of the last scans five weeks ago]. 

Good luck to your husband . . . and to you-please don't forget to spoil yourself somehow to relieve some of YOUR stress.

Brendan