My. Bad News

It's bad news, but that webinar really make me feel hopeful that I could keep this away for a long time. I have 1 currently shrinking in my head and now 2 months later, I have 2 news one (both very small). We have no idea if they'll be more or 1 more and stop for a bit. Everyone's brain situation is extremely different. I think of someone like Jag that proves many things as well as that other girls who had 3 brain tumours and that was 5 years ago!!

I'd like to to the Anti PD-1, but our hospital is trying to put a bunch of people together and won't have any thing for 2 months. I don't want to wait 2 months, unless I find somewhere in the States to go (I live in Toronto, Ontario).   There is also a new brain met treatment they are coming out in our hospital at Princess Margaret, but it sounds like months too.  Even though ipi can cause imflammation in the brain, it's also been shown to shrink them.

It's bad news, but that webinar really make me feel hopeful that I could keep this away for a long time. I have 1 currently shrinking in my head and now 2 months later, I have 2 news one (both very small). We have no idea if they'll be more or 1 more and stop for a bit. Everyone's brain situation is extremely different. I think of someone like Jag that proves many things as well as that other girls who had 3 brain tumours and that was 5 years ago!!

I'd like to to the Anti PD-1, but our hospital is trying to put a bunch of people together and won't have any thing for 2 months. I don't want to wait 2 months, unless I find somewhere in the States to go (I live in Toronto, Ontario).   There is also a new brain met treatment they are coming out in our hospital at Princess Margaret, but it sounds like months too.  Even though ipi can cause imflammation in the brain, it's also been shown to shrink them.

It's bad news, but that webinar really make me feel hopeful that I could keep this away for a long time. I have 1 currently shrinking in my head and now 2 months later, I have 2 news one (both very small). We have no idea if they'll be more or 1 more and stop for a bit. Everyone's brain situation is extremely different. I think of someone like Jag that proves many things as well as that other girls who had 3 brain tumours and that was 5 years ago!!

I'd like to to the Anti PD-1, but our hospital is trying to put a bunch of people together and won't have any thing for 2 months. I don't want to wait 2 months, unless I find somewhere in the States to go (I live in Toronto, Ontario).   There is also a new brain met treatment they are coming out in our hospital at Princess Margaret, but it sounds like months too.  Even though ipi can cause imflammation in the brain, it's also been shown to shrink them.

Kyle,

You're absolutely right about that webinar – it taught me so much then I knew before. 

It sounds like you have some good news right now and I'm so happy for you.  I started to grow (marginally) on my lungs, but my lymphnode went up to 1900 late last week, so I'm really wondering on what ipi could still be doing.   It's hard to know what's going to happen with brain mets, but I do believe every 8 weeks is key. I had gamma knife on 2 of them 8 weeks ago and just found 2 tiny ones yesterday (exactly 2 months after gamma knife).   I'm hoping to get the gamma knife this week, but I know the radiologist is very high for WBR. I understand why they want to do this, but it ulltimately has to be my decision. 

I agree – it's going to be a long road ahead, but I believe our minds are part of this battle 🙂

Lisa

Kyle,

You're absolutely right about that webinar – it taught me so much then I knew before. 

It sounds like you have some good news right now and I'm so happy for you.  I started to grow (marginally) on my lungs, but my lymphnode went up to 1900 late last week, so I'm really wondering on what ipi could still be doing.   It's hard to know what's going to happen with brain mets, but I do believe every 8 weeks is key. I had gamma knife on 2 of them 8 weeks ago and just found 2 tiny ones yesterday (exactly 2 months after gamma knife).   I'm hoping to get the gamma knife this week, but I know the radiologist is very high for WBR. I understand why they want to do this, but it ulltimately has to be my decision. 

I agree – it's going to be a long road ahead, but I believe our minds are part of this battle 🙂

Lisa

Kyle,

You're absolutely right about that webinar – it taught me so much then I knew before. 

It sounds like you have some good news right now and I'm so happy for you.  I started to grow (marginally) on my lungs, but my lymphnode went up to 1900 late last week, so I'm really wondering on what ipi could still be doing.   It's hard to know what's going to happen with brain mets, but I do believe every 8 weeks is key. I had gamma knife on 2 of them 8 weeks ago and just found 2 tiny ones yesterday (exactly 2 months after gamma knife).   I'm hoping to get the gamma knife this week, but I know the radiologist is very high for WBR. I understand why they want to do this, but it ulltimately has to be my decision. 

I agree – it's going to be a long road ahead, but I believe our minds are part of this battle 🙂

Lisa

Hi Frank,

My Dr. definately believe the ipi worked for me which is why they want to try it again. At 16 weeks, I was 50% shrinkage and some mets had disappeared. Now, at 24 weeks, they showed a marginal growth (1-2mm). The interesting thing is my lymphocyes were very high until November 30th (2 weeks after gamma) it went to 0.53!  Now it's back up to 1900, so this is sort of good news for my immune system.

Other treatments that were suggested to me is Anti PD-1, a new clinical brain mets trial and something to do with NRAS – which I know nothing about. It has to do with checking my genetics and being BRAF negative. There is something new about this and they want to put me on this.  I'm keeping positive!

Lisa

Hi Frank,

My Dr. definately believe the ipi worked for me which is why they want to try it again. At 16 weeks, I was 50% shrinkage and some mets had disappeared. Now, at 24 weeks, they showed a marginal growth (1-2mm). The interesting thing is my lymphocyes were very high until November 30th (2 weeks after gamma) it went to 0.53!  Now it's back up to 1900, so this is sort of good news for my immune system.

Other treatments that were suggested to me is Anti PD-1, a new clinical brain mets trial and something to do with NRAS – which I know nothing about. It has to do with checking my genetics and being BRAF negative. There is something new about this and they want to put me on this.  I'm keeping positive!

Lisa

Hi Frank,

My Dr. definately believe the ipi worked for me which is why they want to try it again. At 16 weeks, I was 50% shrinkage and some mets had disappeared. Now, at 24 weeks, they showed a marginal growth (1-2mm). The interesting thing is my lymphocyes were very high until November 30th (2 weeks after gamma) it went to 0.53!  Now it's back up to 1900, so this is sort of good news for my immune system.

Other treatments that were suggested to me is Anti PD-1, a new clinical brain mets trial and something to do with NRAS – which I know nothing about. It has to do with checking my genetics and being BRAF negative. There is something new about this and they want to put me on this.  I'm keeping positive!

Lisa

Hi Linda,

The two they found were 6mm and 7mm and tomorrow I meet with the radiologist to get them gamma knifed this week.  I'll be getting two more brain MRIs and CT right before the procedure and they are the same machine I've always used.

I'll be starting ipi again as I had 50% shrinkage and disappearance, so it did work and I have a 50% chance of it working againa.  Like you said, I'll be having another CT scan in probably a month to see if the lungs have shrunk at all, so I think this is very important to keep an eye out on things.  It's so hard to understand if the marginal growth is actually inflammation of the ipi – nobody will never know. 

Brain mets are terrifying, but it's been nice to read about people that are still here 2,3,5 years after brain mets and havn't gotten anything more. 

Linda – this larger tumour you're having removed may just be the only thing you get for a while. It's possible!

Lisa  

Hi Linda,

The two they found were 6mm and 7mm and tomorrow I meet with the radiologist to get them gamma knifed this week.  I'll be getting two more brain MRIs and CT right before the procedure and they are the same machine I've always used.

I'll be starting ipi again as I had 50% shrinkage and disappearance, so it did work and I have a 50% chance of it working againa.  Like you said, I'll be having another CT scan in probably a month to see if the lungs have shrunk at all, so I think this is very important to keep an eye out on things.  It's so hard to understand if the marginal growth is actually inflammation of the ipi – nobody will never know. 

Brain mets are terrifying, but it's been nice to read about people that are still here 2,3,5 years after brain mets and havn't gotten anything more. 

Linda – this larger tumour you're having removed may just be the only thing you get for a while. It's possible!

Lisa  

Hi Linda,

The two they found were 6mm and 7mm and tomorrow I meet with the radiologist to get them gamma knifed this week.  I'll be getting two more brain MRIs and CT right before the procedure and they are the same machine I've always used.

I'll be starting ipi again as I had 50% shrinkage and disappearance, so it did work and I have a 50% chance of it working againa.  Like you said, I'll be having another CT scan in probably a month to see if the lungs have shrunk at all, so I think this is very important to keep an eye out on things.  It's so hard to understand if the marginal growth is actually inflammation of the ipi – nobody will never know. 

Brain mets are terrifying, but it's been nice to read about people that are still here 2,3,5 years after brain mets and havn't gotten anything more. 

Linda – this larger tumour you're having removed may just be the only thing you get for a while. It's possible!

Lisa  

Hi Grady,

How would you know if there are millions of cancer cells floating in the brain?  When I hear about the people that are here 2,3 and 5 years after more than 2 brain tumours were removed, they've been around for these years without more brain mets.  In the past 3 weeks, I found out about these 3 woman who never did WBR and are still here without anymore coming.

After listening to the webinar on Melanoma International, it seems having gamma knife when you have 1-4  tmours is a great survival benefit. My choice is not to do WBR unless of course I show up with more mets (much greater than 5).  If I could live life getting 2 removed, here and there and then be lucky to have no more for awhile – we just don't know.  I'm starting ipi again and if it doesn't work, I'd set up for ANTI PDI. My Dr also said there is a new clinical trial for brain mets which they are getting me in, so there is always hope.  When I find of the name of this brain met clinical trial, I'll be letting everyone know.

We don't know how fast the tumours are growing. Some people get them in 1 months and the next month and then sometimes they don't get anymore for a long time. We just don't know.

For now, I've had Stage 4 for almost a year and it had stayed in my lungs and 4 of them just recently went just above 1cm – the rest 8mm. This means to be that the cancer isn't growing in my body fast right now and having a huge lymphocyte number since May 2011, must mean my own immune system is doing what it can.  

We never know what's going to happen, but we have to remain hopeful.  I'm getting brain MRIs every 8 weeks, so I think this is the best thing to do to catch them as quickly as you can.

Hi Grady,

How would you know if there are millions of cancer cells floating in the brain?  When I hear about the people that are here 2,3 and 5 years after more than 2 brain tumours were removed, they've been around for these years without more brain mets.  In the past 3 weeks, I found out about these 3 woman who never did WBR and are still here without anymore coming.

After listening to the webinar on Melanoma International, it seems having gamma knife when you have 1-4  tmours is a great survival benefit. My choice is not to do WBR unless of course I show up with more mets (much greater than 5).  If I could live life getting 2 removed, here and there and then be lucky to have no more for awhile – we just don't know.  I'm starting ipi again and if it doesn't work, I'd set up for ANTI PDI. My Dr also said there is a new clinical trial for brain mets which they are getting me in, so there is always hope.  When I find of the name of this brain met clinical trial, I'll be letting everyone know.

We don't know how fast the tumours are growing. Some people get them in 1 months and the next month and then sometimes they don't get anymore for a long time. We just don't know.

For now, I've had Stage 4 for almost a year and it had stayed in my lungs and 4 of them just recently went just above 1cm – the rest 8mm. This means to be that the cancer isn't growing in my body fast right now and having a huge lymphocyte number since May 2011, must mean my own immune system is doing what it can.  

We never know what's going to happen, but we have to remain hopeful.  I'm getting brain MRIs every 8 weeks, so I think this is the best thing to do to catch them as quickly as you can.

Hi Grady,

How would you know if there are millions of cancer cells floating in the brain?  When I hear about the people that are here 2,3 and 5 years after more than 2 brain tumours were removed, they've been around for these years without more brain mets.  In the past 3 weeks, I found out about these 3 woman who never did WBR and are still here without anymore coming.

After listening to the webinar on Melanoma International, it seems having gamma knife when you have 1-4  tmours is a great survival benefit. My choice is not to do WBR unless of course I show up with more mets (much greater than 5).  If I could live life getting 2 removed, here and there and then be lucky to have no more for awhile – we just don't know.  I'm starting ipi again and if it doesn't work, I'd set up for ANTI PDI. My Dr also said there is a new clinical trial for brain mets which they are getting me in, so there is always hope.  When I find of the name of this brain met clinical trial, I'll be letting everyone know.

We don't know how fast the tumours are growing. Some people get them in 1 months and the next month and then sometimes they don't get anymore for a long time. We just don't know.

For now, I've had Stage 4 for almost a year and it had stayed in my lungs and 4 of them just recently went just above 1cm – the rest 8mm. This means to be that the cancer isn't growing in my body fast right now and having a huge lymphocyte number since May 2011, must mean my own immune system is doing what it can.  

We never know what's going to happen, but we have to remain hopeful.  I'm getting brain MRIs every 8 weeks, so I think this is the best thing to do to catch them as quickly as you can.

Thanks Jag.

People like you give me hope as you've had a few brain mets that never came back.  I'm getting the small 2 gamma knifed and back onto ipi which was working in the first place. 

Like you, we're working on our house and enjoying life with our 2 year old daughter.  I've been chatting with a girl who had 15 reoccuring mets 2 years ago.   When you first get them, it's hard not to be afraid, but I hope I can be like you and others sticking it out years ago.

By the way, what did you take again that probably eliminiated your brain mets back then?

Thanks Jag.

People like you give me hope as you've had a few brain mets that never came back.  I'm getting the small 2 gamma knifed and back onto ipi which was working in the first place. 

Like you, we're working on our house and enjoying life with our 2 year old daughter.  I've been chatting with a girl who had 15 reoccuring mets 2 years ago.   When you first get them, it's hard not to be afraid, but I hope I can be like you and others sticking it out years ago.

By the way, what did you take again that probably eliminiated your brain mets back then?

Thanks Jag.

People like you give me hope as you've had a few brain mets that never came back.  I'm getting the small 2 gamma knifed and back onto ipi which was working in the first place. 

Like you, we're working on our house and enjoying life with our 2 year old daughter.  I've been chatting with a girl who had 15 reoccuring mets 2 years ago.   When you first get them, it's hard not to be afraid, but I hope I can be like you and others sticking it out years ago.

By the way, what did you take again that probably eliminiated your brain mets back then?

my immune system never disposed of the first 2 (although wouldn’t that have been amazing!). Gamma knife eliminated 1 of them and the larger 1 in dead tissue which is good news. the two new brain mets are 7mm, so they will likely have good results.

I’m hoping I’m as lucky as you to have no more brain mets come back when I starte ipi for the second time.

my immune system never disposed of the first 2 (although wouldn’t that have been amazing!). Gamma knife eliminated 1 of them and the larger 1 in dead tissue which is good news. the two new brain mets are 7mm, so they will likely have good results.

I’m hoping I’m as lucky as you to have no more brain mets come back when I starte ipi for the second time.

my immune system never disposed of the first 2 (although wouldn’t that have been amazing!). Gamma knife eliminated 1 of them and the larger 1 in dead tissue which is good news. the two new brain mets are 7mm, so they will likely have good results.

I’m hoping I’m as lucky as you to have no more brain mets come back when I starte ipi for the second time.