Brain/lung mets

Hi,

I haven't had chemo, but I have had whole brain radiation. It's not as bad as you think, once they get your initial set up done it only takes about 15 min each day and you dont feel anything when it's happening. The side effects tend to show up at the end of the course of treatment (I did 3 weeks). I had nausea and some fatigue that I think came from the radiation (I had Ipilimumab (Yervoy) at the same time so it's hard to separate the side effects). My hair all fell out at the start of the 3rd week and the fatigue lasted a few weeks. It also burned my ear canals (like a sunburn). They were sore for several weeks but my doctor gave me a cream that helped a lot. The radiation oncologist who will oversee that part of your therapy will go over all the possible side effects and like wth everything else it's long and scary sounding, but most people only have a couple. Most commonly the hair loss and fatigue. 

Just a couple of questions though- you only have 4, and they're small, so have you and your doctor considered SRS (either Gamma Knife or Cyber Knife)? Depending on the location of the tumors, I would think you would be a good candidate. I had 7 plus possible leptomeningeal disease so I wasn't a candidate, but with only 4 you may be and it's worth figuring out because SRS carries fewer risks for long term memory effects and there's other benefits as well. 

Another question- why chemo? Have you tried Yervoy? If things really are tiny and you turn out to BRAF positive what about the BRAF inhibitors or BRAF/MEK combo instead? 

Good luck to you

Hi,

I haven't had chemo, but I have had whole brain radiation. It's not as bad as you think, once they get your initial set up done it only takes about 15 min each day and you dont feel anything when it's happening. The side effects tend to show up at the end of the course of treatment (I did 3 weeks). I had nausea and some fatigue that I think came from the radiation (I had Ipilimumab (Yervoy) at the same time so it's hard to separate the side effects). My hair all fell out at the start of the 3rd week and the fatigue lasted a few weeks. It also burned my ear canals (like a sunburn). They were sore for several weeks but my doctor gave me a cream that helped a lot. The radiation oncologist who will oversee that part of your therapy will go over all the possible side effects and like wth everything else it's long and scary sounding, but most people only have a couple. Most commonly the hair loss and fatigue. 

Just a couple of questions though- you only have 4, and they're small, so have you and your doctor considered SRS (either Gamma Knife or Cyber Knife)? Depending on the location of the tumors, I would think you would be a good candidate. I had 7 plus possible leptomeningeal disease so I wasn't a candidate, but with only 4 you may be and it's worth figuring out because SRS carries fewer risks for long term memory effects and there's other benefits as well. 

Another question- why chemo? Have you tried Yervoy? If things really are tiny and you turn out to BRAF positive what about the BRAF inhibitors or BRAF/MEK combo instead? 

Good luck to you

Hi,

I haven't had chemo, but I have had whole brain radiation. It's not as bad as you think, once they get your initial set up done it only takes about 15 min each day and you dont feel anything when it's happening. The side effects tend to show up at the end of the course of treatment (I did 3 weeks). I had nausea and some fatigue that I think came from the radiation (I had Ipilimumab (Yervoy) at the same time so it's hard to separate the side effects). My hair all fell out at the start of the 3rd week and the fatigue lasted a few weeks. It also burned my ear canals (like a sunburn). They were sore for several weeks but my doctor gave me a cream that helped a lot. The radiation oncologist who will oversee that part of your therapy will go over all the possible side effects and like wth everything else it's long and scary sounding, but most people only have a couple. Most commonly the hair loss and fatigue. 

Just a couple of questions though- you only have 4, and they're small, so have you and your doctor considered SRS (either Gamma Knife or Cyber Knife)? Depending on the location of the tumors, I would think you would be a good candidate. I had 7 plus possible leptomeningeal disease so I wasn't a candidate, but with only 4 you may be and it's worth figuring out because SRS carries fewer risks for long term memory effects and there's other benefits as well. 

Another question- why chemo? Have you tried Yervoy? If things really are tiny and you turn out to BRAF positive what about the BRAF inhibitors or BRAF/MEK combo instead? 

Good luck to you

Hi GeminiLion, I've had mets in the same two places, lungs and brain. 

As i understand it, for certain brain met situations, WBR is the best choice. My own radiation oncologist prefers to do SRS whenever possible, she says it can have better outcomes as well as less side effects in many cases. Whereas insurers are said to prefer WBR because it's cheaper than SRS. The "old" standards still used by many insurers apparently say that for more than 3 brain mets, use WBR. My radiation oncologist and others strongly disagree and say SRS is appropriate to treat many more than 3 small brain mets.

A very worthwhile webinar that covers these points and more for melanoma brain met patients — like us — is at: http://melanomainternational.org/webinar/2012/01/radiation-treatment-in-brain-metastases/

I've had CyberKnife once in 2010, and GammaKnife once in 2011. So far I have not needed WBR. I was given Ipilimumab shortly after the Gamma Knife treatment.

– Kyle

Hi GeminiLion, I've had mets in the same two places, lungs and brain. 

As i understand it, for certain brain met situations, WBR is the best choice. My own radiation oncologist prefers to do SRS whenever possible, she says it can have better outcomes as well as less side effects in many cases. Whereas insurers are said to prefer WBR because it's cheaper than SRS. The "old" standards still used by many insurers apparently say that for more than 3 brain mets, use WBR. My radiation oncologist and others strongly disagree and say SRS is appropriate to treat many more than 3 small brain mets.

A very worthwhile webinar that covers these points and more for melanoma brain met patients — like us — is at: http://melanomainternational.org/webinar/2012/01/radiation-treatment-in-brain-metastases/

I've had CyberKnife once in 2010, and GammaKnife once in 2011. So far I have not needed WBR. I was given Ipilimumab shortly after the Gamma Knife treatment.

– Kyle

Hi GeminiLion, I've had mets in the same two places, lungs and brain. 

As i understand it, for certain brain met situations, WBR is the best choice. My own radiation oncologist prefers to do SRS whenever possible, she says it can have better outcomes as well as less side effects in many cases. Whereas insurers are said to prefer WBR because it's cheaper than SRS. The "old" standards still used by many insurers apparently say that for more than 3 brain mets, use WBR. My radiation oncologist and others strongly disagree and say SRS is appropriate to treat many more than 3 small brain mets.

A very worthwhile webinar that covers these points and more for melanoma brain met patients — like us — is at: http://melanomainternational.org/webinar/2012/01/radiation-treatment-in-brain-metastases/

I've had CyberKnife once in 2010, and GammaKnife once in 2011. So far I have not needed WBR. I was given Ipilimumab shortly after the Gamma Knife treatment.

– Kyle

Melanoma tumors anywhere in your body can bleed at any time. If tumors in your brain bleed, that is a stroke, which can cause brain damage. So brain mets need to be treated as soon as possible. Then you can turn your attention to treating the mets elsewhere in your body.

I agree that whenever possible, SRS (called "Gamma Knife" or "Cyber Knife") or neurosurgery is preferable to whole brain radiation for many reasons. Please consult with a radiation oncologist who uses one of these SRS techniques before you decide to go ahead with whole brain radiation. At least find out if SRS is an option for you.

What type of "chemo" is your doctor suggesting? Where are you being treated? 

Melanoma tumors anywhere in your body can bleed at any time. If tumors in your brain bleed, that is a stroke, which can cause brain damage. So brain mets need to be treated as soon as possible. Then you can turn your attention to treating the mets elsewhere in your body.

I agree that whenever possible, SRS (called "Gamma Knife" or "Cyber Knife") or neurosurgery is preferable to whole brain radiation for many reasons. Please consult with a radiation oncologist who uses one of these SRS techniques before you decide to go ahead with whole brain radiation. At least find out if SRS is an option for you.

What type of "chemo" is your doctor suggesting? Where are you being treated? 

Melanoma tumors anywhere in your body can bleed at any time. If tumors in your brain bleed, that is a stroke, which can cause brain damage. So brain mets need to be treated as soon as possible. Then you can turn your attention to treating the mets elsewhere in your body.

I agree that whenever possible, SRS (called "Gamma Knife" or "Cyber Knife") or neurosurgery is preferable to whole brain radiation for many reasons. Please consult with a radiation oncologist who uses one of these SRS techniques before you decide to go ahead with whole brain radiation. At least find out if SRS is an option for you.

What type of "chemo" is your doctor suggesting? Where are you being treated? 

GeminiLion,

Guessing — you might mean any of the new treatments like BRAF, IPI, etc. when you say ‘chemo’?  

Your docs know the most about your condition. It’s possible one of us might have run into something in our treatment that’s not yet in practice by your doc or at your facility. If so i hope it helps. On the other hand your docs may have already taken these options into account.

Don't want to load too much on your plate besides what you've already got. 

GeminiLion,

Guessing — you might mean any of the new treatments like BRAF, IPI, etc. when you say ‘chemo’?  

Your docs know the most about your condition. It’s possible one of us might have run into something in our treatment that’s not yet in practice by your doc or at your facility. If so i hope it helps. On the other hand your docs may have already taken these options into account.

Don't want to load too much on your plate besides what you've already got. 

GeminiLion,

Guessing — you might mean any of the new treatments like BRAF, IPI, etc. when you say ‘chemo’?  

Your docs know the most about your condition. It’s possible one of us might have run into something in our treatment that’s not yet in practice by your doc or at your facility. If so i hope it helps. On the other hand your docs may have already taken these options into account.

Don't want to load too much on your plate besides what you've already got. 

Hi Gemini Lion,

So sorry you are having to go through this just now. If it helps, I too have had lung and brain mets and am still here to tell the tale.  Though I did have an easier go of it with just one of each.  SRS is often the more recommended treatment for melanoma as opposed to whole brain radiation.  There are many on this forum who had 4-6 mets zapped at once in that fashion…and even that is not the limit.  I've read studies in which they zapped up to 12 that way.  Of course, location and other things make a difference and you should certainly talk to your doc about that.  Do be sure, if at all possible, that you are being seen at a melanoma center…not just at the local hospital with a basic oncologist.  Nothing against those folks, but you will have many more options and services available at a melanoma center.  Additionally, your insurance should cover SRS just as easily as WBR if your doctor recommends it. 

As far as "chemo"….old time chemo doesn't work with melanoma.  You have to take things like ipi (Yervoy) or anti-PD1 (though it is not yet FDA approved) or IL2 to trigger your own immune system to kill the melanoma cells.  BRAF inhibitors are another option if your tumors turn out to be positive for it….and about 50% of melanoma patients do. 

I know this is a lot of information to try to process.  Kyle is a great guy with great info on all things brain mets!!!  He knows….from experience and smarts.  There are many articles and explanations of meds and treatments on my blog if you are interested. Just enter what you want to read about in the top left corner. (Google – "chaotically precise").  The other good news is the data coming out of studies that look at the GOOD effects patients are experiencing when they have radiation (in brain and/or body) as well as ipi.  I have some posts about that as well and it sounds like that may be something that could be helpful for you.

Finally, I know how it feels to put on a tough face when all of those around you are sad and wounded "because" of you!!  Been there done that.  Wish I had brilliant words of advice for that one.  But…all I can say is hang in there.  Yell all you want here whenever you need to.

Yours, Celeste

Hi Gemini Lion,

So sorry you are having to go through this just now. If it helps, I too have had lung and brain mets and am still here to tell the tale.  Though I did have an easier go of it with just one of each.  SRS is often the more recommended treatment for melanoma as opposed to whole brain radiation.  There are many on this forum who had 4-6 mets zapped at once in that fashion…and even that is not the limit.  I've read studies in which they zapped up to 12 that way.  Of course, location and other things make a difference and you should certainly talk to your doc about that.  Do be sure, if at all possible, that you are being seen at a melanoma center…not just at the local hospital with a basic oncologist.  Nothing against those folks, but you will have many more options and services available at a melanoma center.  Additionally, your insurance should cover SRS just as easily as WBR if your doctor recommends it. 

As far as "chemo"….old time chemo doesn't work with melanoma.  You have to take things like ipi (Yervoy) or anti-PD1 (though it is not yet FDA approved) or IL2 to trigger your own immune system to kill the melanoma cells.  BRAF inhibitors are another option if your tumors turn out to be positive for it….and about 50% of melanoma patients do. 

I know this is a lot of information to try to process.  Kyle is a great guy with great info on all things brain mets!!!  He knows….from experience and smarts.  There are many articles and explanations of meds and treatments on my blog if you are interested. Just enter what you want to read about in the top left corner. (Google – "chaotically precise").  The other good news is the data coming out of studies that look at the GOOD effects patients are experiencing when they have radiation (in brain and/or body) as well as ipi.  I have some posts about that as well and it sounds like that may be something that could be helpful for you.

Finally, I know how it feels to put on a tough face when all of those around you are sad and wounded "because" of you!!  Been there done that.  Wish I had brilliant words of advice for that one.  But…all I can say is hang in there.  Yell all you want here whenever you need to.

Yours, Celeste

Hi Gemini Lion,

So sorry you are having to go through this just now. If it helps, I too have had lung and brain mets and am still here to tell the tale.  Though I did have an easier go of it with just one of each.  SRS is often the more recommended treatment for melanoma as opposed to whole brain radiation.  There are many on this forum who had 4-6 mets zapped at once in that fashion…and even that is not the limit.  I've read studies in which they zapped up to 12 that way.  Of course, location and other things make a difference and you should certainly talk to your doc about that.  Do be sure, if at all possible, that you are being seen at a melanoma center…not just at the local hospital with a basic oncologist.  Nothing against those folks, but you will have many more options and services available at a melanoma center.  Additionally, your insurance should cover SRS just as easily as WBR if your doctor recommends it. 

As far as "chemo"….old time chemo doesn't work with melanoma.  You have to take things like ipi (Yervoy) or anti-PD1 (though it is not yet FDA approved) or IL2 to trigger your own immune system to kill the melanoma cells.  BRAF inhibitors are another option if your tumors turn out to be positive for it….and about 50% of melanoma patients do. 

I know this is a lot of information to try to process.  Kyle is a great guy with great info on all things brain mets!!!  He knows….from experience and smarts.  There are many articles and explanations of meds and treatments on my blog if you are interested. Just enter what you want to read about in the top left corner. (Google – "chaotically precise").  The other good news is the data coming out of studies that look at the GOOD effects patients are experiencing when they have radiation (in brain and/or body) as well as ipi.  I have some posts about that as well and it sounds like that may be something that could be helpful for you.

Finally, I know how it feels to put on a tough face when all of those around you are sad and wounded "because" of you!!  Been there done that.  Wish I had brilliant words of advice for that one.  But…all I can say is hang in there.  Yell all you want here whenever you need to.

Yours, Celeste

Yeah, all this stuff seems pretty terrifying until you do it and you just keep marching forward. There are so many promising treatment options that are being used and developed focusing on them will keep your head in the right place. We are all blessed that there are ever increasing options available to us. I had one lung met which was surgically resected (cut out) and then had 1 brain met that had SRS and Yetvoy both of which were done a second time after a recurrence (recurred but was 10% alive and 90% dead) of that met. Going for scans in a few weeks but optimistic.  From your note it appears your tumor load is pretty light so your Dr could have a few alternative treatment choices up his sleeve. Definitely check with your Dr about getting the SRS simultaneously with an immunotherapy. There have been good results with that. Although I did the FDA approved Yervoy the data on the Anti pd-1 drug in various combo trials looks really promising. You will know more post the BRAF results. Get all the facts before you expend energy worrying about the what ifs. Get educated and be your best advocate. Keep the faith and stay focused on the things you are most thankful about in your life. It's likely a long list and I find when reviewing it mentally it pushes the melanoma worries away. Hang in there and good luck..

Yeah, all this stuff seems pretty terrifying until you do it and you just keep marching forward. There are so many promising treatment options that are being used and developed focusing on them will keep your head in the right place. We are all blessed that there are ever increasing options available to us. I had one lung met which was surgically resected (cut out) and then had 1 brain met that had SRS and Yetvoy both of which were done a second time after a recurrence (recurred but was 10% alive and 90% dead) of that met. Going for scans in a few weeks but optimistic.  From your note it appears your tumor load is pretty light so your Dr could have a few alternative treatment choices up his sleeve. Definitely check with your Dr about getting the SRS simultaneously with an immunotherapy. There have been good results with that. Although I did the FDA approved Yervoy the data on the Anti pd-1 drug in various combo trials looks really promising. You will know more post the BRAF results. Get all the facts before you expend energy worrying about the what ifs. Get educated and be your best advocate. Keep the faith and stay focused on the things you are most thankful about in your life. It's likely a long list and I find when reviewing it mentally it pushes the melanoma worries away. Hang in there and good luck..

Yeah, all this stuff seems pretty terrifying until you do it and you just keep marching forward. There are so many promising treatment options that are being used and developed focusing on them will keep your head in the right place. We are all blessed that there are ever increasing options available to us. I had one lung met which was surgically resected (cut out) and then had 1 brain met that had SRS and Yetvoy both of which were done a second time after a recurrence (recurred but was 10% alive and 90% dead) of that met. Going for scans in a few weeks but optimistic.  From your note it appears your tumor load is pretty light so your Dr could have a few alternative treatment choices up his sleeve. Definitely check with your Dr about getting the SRS simultaneously with an immunotherapy. There have been good results with that. Although I did the FDA approved Yervoy the data on the Anti pd-1 drug in various combo trials looks really promising. You will know more post the BRAF results. Get all the facts before you expend energy worrying about the what ifs. Get educated and be your best advocate. Keep the faith and stay focused on the things you are most thankful about in your life. It's likely a long list and I find when reviewing it mentally it pushes the melanoma worries away. Hang in there and good luck..