Bad News, Need help

Denise,

I'm sorry you're getting this news. 

What SRS system is being used? The smallest brain met I had zapped was found — if I remember correctly and read the rad report correctly — at 3mm (the smallest resolution of the MRI). And zapped — with Gamma Knife — very shortly thereafter. 

If Gamma Knife is not being used, I wonder if that's the difference. If Gamma Knife is being used, either I am remembering my report incorrectly or there's a difference between how our radiation oncologists are able to handle these.

In my case, my neurosurgeon (who did my double craniotomy on 6/1/11) is also the co-director of the Gamm Knife team (along with my radiation oncologist, who zapped my other mets including the 3mm one, 16 days later). 

This probably doesn't help, I apologize if that's the case. See my disclaimer below. 
– Kyle

Denise,

I'm sorry you're getting this news. 

What SRS system is being used? The smallest brain met I had zapped was found — if I remember correctly and read the rad report correctly — at 3mm (the smallest resolution of the MRI). And zapped — with Gamma Knife — very shortly thereafter. 

If Gamma Knife is not being used, I wonder if that's the difference. If Gamma Knife is being used, either I am remembering my report incorrectly or there's a difference between how our radiation oncologists are able to handle these.

In my case, my neurosurgeon (who did my double craniotomy on 6/1/11) is also the co-director of the Gamm Knife team (along with my radiation oncologist, who zapped my other mets including the 3mm one, 16 days later). 

This probably doesn't help, I apologize if that's the case. See my disclaimer below. 
– Kyle

Denise,

I'm sorry you're getting this news. 

What SRS system is being used? The smallest brain met I had zapped was found — if I remember correctly and read the rad report correctly — at 3mm (the smallest resolution of the MRI). And zapped — with Gamma Knife — very shortly thereafter. 

If Gamma Knife is not being used, I wonder if that's the difference. If Gamma Knife is being used, either I am remembering my report incorrectly or there's a difference between how our radiation oncologists are able to handle these.

In my case, my neurosurgeon (who did my double craniotomy on 6/1/11) is also the co-director of the Gamm Knife team (along with my radiation oncologist, who zapped my other mets including the 3mm one, 16 days later). 

This probably doesn't help, I apologize if that's the case. See my disclaimer below. 
– Kyle

As far as a success stories, my brain lesions have all been stable since 6/1/2011 (double craniotomy, and either 4 or 5 (out of 5 total — 1 was treated with an earlier craniotomy/SRS), apparently only growing a little with either IPI swelling (IPI started 11 days after Gamma Knife) and/or radiation effect. So that is a 2 year success story.

I believe the webinar with Dr. Chiang of Yale (at the MIF site) says at Yale, they too want to immediately zap brain tumors of any kinds as soon as they are found. She indicated that Gamma Knife was her SRS system of choice.

Hang in there.

As far as a success stories, my brain lesions have all been stable since 6/1/2011 (double craniotomy, and either 4 or 5 (out of 5 total — 1 was treated with an earlier craniotomy/SRS), apparently only growing a little with either IPI swelling (IPI started 11 days after Gamma Knife) and/or radiation effect. So that is a 2 year success story.

I believe the webinar with Dr. Chiang of Yale (at the MIF site) says at Yale, they too want to immediately zap brain tumors of any kinds as soon as they are found. She indicated that Gamma Knife was her SRS system of choice.

Hang in there.

As far as a success stories, my brain lesions have all been stable since 6/1/2011 (double craniotomy, and either 4 or 5 (out of 5 total — 1 was treated with an earlier craniotomy/SRS), apparently only growing a little with either IPI swelling (IPI started 11 days after Gamma Knife) and/or radiation effect. So that is a 2 year success story.

I believe the webinar with Dr. Chiang of Yale (at the MIF site) says at Yale, they too want to immediately zap brain tumors of any kinds as soon as they are found. She indicated that Gamma Knife was her SRS system of choice.

Hang in there.

Sorry to hear this news and I wish I had something to offer in the way of treatment help, but unfortunately I don't.  I'm sure you will get some good advice though as other's post with good treatment options and ideas.

Stay positive, keep your sights on that wedding and tell yourself "I'm gonna make it, I will be there" you can do it!    You have had a few  setbacks since your journey with melanoma began and you always rally and persevere, you will do it again!   Lots of success stories here and one that comes to mind is Ali, I recall she had been through many treatments with limited success also developing 25 brain tumors, put on Temador and Yervoy (?) and experienced good results….check out her profile!  I have not seen a post from Ali for quite some time so will keep my fingers crossed she is playing hard and living large!

I've shared your same fears since I was diagnosed.  In that time I have made it to 2 daughters weddings, will be here for my first grandchild this November and planning on being here for my son's wedding (?) whenever that is!! 

Stay strong Denise and start looking for your Mother of the Bride dress – you're gonna be there!

Swanee

Sorry to hear this news and I wish I had something to offer in the way of treatment help, but unfortunately I don't.  I'm sure you will get some good advice though as other's post with good treatment options and ideas.

Stay positive, keep your sights on that wedding and tell yourself "I'm gonna make it, I will be there" you can do it!    You have had a few  setbacks since your journey with melanoma began and you always rally and persevere, you will do it again!   Lots of success stories here and one that comes to mind is Ali, I recall she had been through many treatments with limited success also developing 25 brain tumors, put on Temador and Yervoy (?) and experienced good results….check out her profile!  I have not seen a post from Ali for quite some time so will keep my fingers crossed she is playing hard and living large!

I've shared your same fears since I was diagnosed.  In that time I have made it to 2 daughters weddings, will be here for my first grandchild this November and planning on being here for my son's wedding (?) whenever that is!! 

Stay strong Denise and start looking for your Mother of the Bride dress – you're gonna be there!

Swanee

Sorry to hear this news and I wish I had something to offer in the way of treatment help, but unfortunately I don't.  I'm sure you will get some good advice though as other's post with good treatment options and ideas.

Stay positive, keep your sights on that wedding and tell yourself "I'm gonna make it, I will be there" you can do it!    You have had a few  setbacks since your journey with melanoma began and you always rally and persevere, you will do it again!   Lots of success stories here and one that comes to mind is Ali, I recall she had been through many treatments with limited success also developing 25 brain tumors, put on Temador and Yervoy (?) and experienced good results….check out her profile!  I have not seen a post from Ali for quite some time so will keep my fingers crossed she is playing hard and living large!

I've shared your same fears since I was diagnosed.  In that time I have made it to 2 daughters weddings, will be here for my first grandchild this November and planning on being here for my son's wedding (?) whenever that is!! 

Stay strong Denise and start looking for your Mother of the Bride dress – you're gonna be there!

Swanee

Denise.Not much info to add but I  will keeep  you in my prayers.Keep us posted on your scan results.Beat the beast.

     Al

Denise.Not much info to add but I  will keeep  you in my prayers.Keep us posted on your scan results.Beat the beast.

     Al

Denise.Not much info to add but I  will keeep  you in my prayers.Keep us posted on your scan results.Beat the beast.

     Al

Denise, Do you have someone who can help advocate for you?? It’s hard facing your illness and treatment and taking on doctors at the same time. I always try to take care of those things for my husband, who has also dealt with brain mets. First, I would be very leery of any doctor who is telling you that a brain mets isn’t big enough?? The smaller the better, find a new radiation doctor ASAP! Second, please talk to another oncologist about trying something other than Zelboraf, now that you are resistant. Radiation and IPI, have benefitted some people, even Temodar can hopefully stabilize you for a few months. Then try IPI or AntiPD1 trial which generally takes longer to get the immune system fighting! I really want you to FIGHT this disease with all your might and make your daughter’s wedding next year! Sending prayers, stay strong!! Valerie (Phil’s wife)

Denise, Do you have someone who can help advocate for you?? It’s hard facing your illness and treatment and taking on doctors at the same time. I always try to take care of those things for my husband, who has also dealt with brain mets. First, I would be very leery of any doctor who is telling you that a brain mets isn’t big enough?? The smaller the better, find a new radiation doctor ASAP! Second, please talk to another oncologist about trying something other than Zelboraf, now that you are resistant. Radiation and IPI, have benefitted some people, even Temodar can hopefully stabilize you for a few months. Then try IPI or AntiPD1 trial which generally takes longer to get the immune system fighting! I really want you to FIGHT this disease with all your might and make your daughter’s wedding next year! Sending prayers, stay strong!! Valerie (Phil’s wife)

Denise, Do you have someone who can help advocate for you?? It’s hard facing your illness and treatment and taking on doctors at the same time. I always try to take care of those things for my husband, who has also dealt with brain mets. First, I would be very leery of any doctor who is telling you that a brain mets isn’t big enough?? The smaller the better, find a new radiation doctor ASAP! Second, please talk to another oncologist about trying something other than Zelboraf, now that you are resistant. Radiation and IPI, have benefitted some people, even Temodar can hopefully stabilize you for a few months. Then try IPI or AntiPD1 trial which generally takes longer to get the immune system fighting! I really want you to FIGHT this disease with all your might and make your daughter’s wedding next year! Sending prayers, stay strong!! Valerie (Phil’s wife)

Hi Denise, 

I had something similar 1 year ago. I thought I only had 4 brain mets, largest 1.5cm. On the day of the Gamma Knife, they told me I had ten. The newly discovered mets were all less than 5mm. It was very scary, as I'm sure you'll agree. I think the reason was that the MRI they were using was 3 Tesla, instead of the usual 1 or 1.5. Anyway, if the lesions are small, they will almost certainly respond to the SRS. I had 10, now I have none. Really hope you get good results from this.

Hope this helps, 

Ben.

Hi Denise, 

I had something similar 1 year ago. I thought I only had 4 brain mets, largest 1.5cm. On the day of the Gamma Knife, they told me I had ten. The newly discovered mets were all less than 5mm. It was very scary, as I'm sure you'll agree. I think the reason was that the MRI they were using was 3 Tesla, instead of the usual 1 or 1.5. Anyway, if the lesions are small, they will almost certainly respond to the SRS. I had 10, now I have none. Really hope you get good results from this.

Hope this helps, 

Ben.

Hi Denise, 

I had something similar 1 year ago. I thought I only had 4 brain mets, largest 1.5cm. On the day of the Gamma Knife, they told me I had ten. The newly discovered mets were all less than 5mm. It was very scary, as I'm sure you'll agree. I think the reason was that the MRI they were using was 3 Tesla, instead of the usual 1 or 1.5. Anyway, if the lesions are small, they will almost certainly respond to the SRS. I had 10, now I have none. Really hope you get good results from this.

Hope this helps, 

Ben.

Hi, Denise. My name is Becky from Jackson, Ms. I am currently working with MD Anderson on getting on the anti-pd1. Last Oct., I had a craniotomy to remove a tumor the size of an egg, still leaving some small brain mets. I had radiation on a Brainlab machine. I was told it is the best out there.I also did 3 months of Temodar. Had a brain MRI in April and my brain was stable. To get in this trial, I was told by Dr. Hu that the brain mets have to be stable. I had a recurrence in March of this year in my bowel. They removed two tumors successfully.I have read your posts on the board. You are a real trooper. Hang in there!

Hi, Denise. My name is Becky from Jackson, Ms. I am currently working with MD Anderson on getting on the anti-pd1. Last Oct., I had a craniotomy to remove a tumor the size of an egg, still leaving some small brain mets. I had radiation on a Brainlab machine. I was told it is the best out there.I also did 3 months of Temodar. Had a brain MRI in April and my brain was stable. To get in this trial, I was told by Dr. Hu that the brain mets have to be stable. I had a recurrence in March of this year in my bowel. They removed two tumors successfully.I have read your posts on the board. You are a real trooper. Hang in there!

Hi, Denise. My name is Becky from Jackson, Ms. I am currently working with MD Anderson on getting on the anti-pd1. Last Oct., I had a craniotomy to remove a tumor the size of an egg, still leaving some small brain mets. I had radiation on a Brainlab machine. I was told it is the best out there.I also did 3 months of Temodar. Had a brain MRI in April and my brain was stable. To get in this trial, I was told by Dr. Hu that the brain mets have to be stable. I had a recurrence in March of this year in my bowel. They removed two tumors successfully.I have read your posts on the board. You are a real trooper. Hang in there!

Denise, looking back on my notes after trying to re-read 6 months of rad reports, my notes for the smallest one say: "Left frontal periventricular involving corona radiata. First detected 6/16/11 at 3mm. Treated with Gamma Knife 6/17/11." 

Still, my accuracy is always suspect.

 

Denise, looking back on my notes after trying to re-read 6 months of rad reports, my notes for the smallest one say: "Left frontal periventricular involving corona radiata. First detected 6/16/11 at 3mm. Treated with Gamma Knife 6/17/11." 

Still, my accuracy is always suspect.

 

Denise, looking back on my notes after trying to re-read 6 months of rad reports, my notes for the smallest one say: "Left frontal periventricular involving corona radiata. First detected 6/16/11 at 3mm. Treated with Gamma Knife 6/17/11." 

Still, my accuracy is always suspect.

 

Kyle- You are probably right. My wife was treated on 5/7/13 with SRS to two spots on her meninges; one was under 1mm in diameter and the other was between 1-2mm. Not sure what machine they use here, but her radiation oncologist is Dr. Khan at Emory.

Interestingly, when we used the term ‘gamma knife,’ the nurse practitioner corrected us and said: “what you are getting is more advanced/modern than Gamma Knife; think of GK as a ‘Ford’ and this SRS as a ‘Porsche.'”

Kyle- You are probably right. My wife was treated on 5/7/13 with SRS to two spots on her meninges; one was under 1mm in diameter and the other was between 1-2mm. Not sure what machine they use here, but her radiation oncologist is Dr. Khan at Emory.

Interestingly, when we used the term ‘gamma knife,’ the nurse practitioner corrected us and said: “what you are getting is more advanced/modern than Gamma Knife; think of GK as a ‘Ford’ and this SRS as a ‘Porsche.'”

Kyle- You are probably right. My wife was treated on 5/7/13 with SRS to two spots on her meninges; one was under 1mm in diameter and the other was between 1-2mm. Not sure what machine they use here, but her radiation oncologist is Dr. Khan at Emory.

Interestingly, when we used the term ‘gamma knife,’ the nurse practitioner corrected us and said: “what you are getting is more advanced/modern than Gamma Knife; think of GK as a ‘Ford’ and this SRS as a ‘Porsche.'”

So sorry you are having to deal with this.  But, I agree with Kyle and Steve.  I was treated with SRS for a brain met that measured 4mm.  The tolerance of the linear accellerator is 1mm.  I would certainly check into your options for other machines, other oncology radiology services…whatever you need to do to zap as many brain mets as possible.  Any other information I can share regarding the treatment of brain mets is noted in my response to Patrick McCarthy on June 6.  For a note that might give you a little hope…despite metastatic melanoma to my brain and lungs….I have been NED for 32 months after sug, SRS and anti-PD1.  Hang in there.  Get the services you deserve!!!  Wishing you the best.  c

So sorry you are having to deal with this.  But, I agree with Kyle and Steve.  I was treated with SRS for a brain met that measured 4mm.  The tolerance of the linear accellerator is 1mm.  I would certainly check into your options for other machines, other oncology radiology services…whatever you need to do to zap as many brain mets as possible.  Any other information I can share regarding the treatment of brain mets is noted in my response to Patrick McCarthy on June 6.  For a note that might give you a little hope…despite metastatic melanoma to my brain and lungs….I have been NED for 32 months after sug, SRS and anti-PD1.  Hang in there.  Get the services you deserve!!!  Wishing you the best.  c

So sorry you are having to deal with this.  But, I agree with Kyle and Steve.  I was treated with SRS for a brain met that measured 4mm.  The tolerance of the linear accellerator is 1mm.  I would certainly check into your options for other machines, other oncology radiology services…whatever you need to do to zap as many brain mets as possible.  Any other information I can share regarding the treatment of brain mets is noted in my response to Patrick McCarthy on June 6.  For a note that might give you a little hope…despite metastatic melanoma to my brain and lungs….I have been NED for 32 months after sug, SRS and anti-PD1.  Hang in there.  Get the services you deserve!!!  Wishing you the best.  c

OK, so I'm not necessarily crazy. And, you're right about Emory using a SRS different — Novalis. Denise, if you're getting SRS at CPMC where you see Dr. Minor in SF, CPMC apparently use Trilogy, another SRS system I'm not familiar with.

I see Dr. Penny Sneed in SF at UCSF as my radiation oncologist. She treated my 3mm met (along with 3/4 others simultaneously). In the past (hopefully distant) I know she's fought over very obsolete insurance guidelines about not treating > 3 brain mets with SRS.

OK, so I'm not necessarily crazy. And, you're right about Emory using a SRS different — Novalis. Denise, if you're getting SRS at CPMC where you see Dr. Minor in SF, CPMC apparently use Trilogy, another SRS system I'm not familiar with.

I see Dr. Penny Sneed in SF at UCSF as my radiation oncologist. She treated my 3mm met (along with 3/4 others simultaneously). In the past (hopefully distant) I know she's fought over very obsolete insurance guidelines about not treating > 3 brain mets with SRS.

OK, so I'm not necessarily crazy. And, you're right about Emory using a SRS different — Novalis. Denise, if you're getting SRS at CPMC where you see Dr. Minor in SF, CPMC apparently use Trilogy, another SRS system I'm not familiar with.

I see Dr. Penny Sneed in SF at UCSF as my radiation oncologist. She treated my 3mm met (along with 3/4 others simultaneously). In the past (hopefully distant) I know she's fought over very obsolete insurance guidelines about not treating > 3 brain mets with SRS.

Steve and Denise, Gamma Knife (for sure) and Novalis (from reading the web) both use frames surgically attached to the head. (Perhaps) this gives them higher accuracy for smaller mets than "frameless sytems" like CyberKnife and (from reading the web) Trilogy. I know as a patient on the table I "felt" that a framed system had to be more accurate than frameless, but that's opinion and conjecture only.

Steve and Denise, Gamma Knife (for sure) and Novalis (from reading the web) both use frames surgically attached to the head. (Perhaps) this gives them higher accuracy for smaller mets than "frameless sytems" like CyberKnife and (from reading the web) Trilogy. I know as a patient on the table I "felt" that a framed system had to be more accurate than frameless, but that's opinion and conjecture only.

Steve and Denise, Gamma Knife (for sure) and Novalis (from reading the web) both use frames surgically attached to the head. (Perhaps) this gives them higher accuracy for smaller mets than "frameless sytems" like CyberKnife and (from reading the web) Trilogy. I know as a patient on the table I "felt" that a framed system had to be more accurate than frameless, but that's opinion and conjecture only.

I would love for you to get into an anti-PD1 trial…and even better for it to be on the market as well.  BUT…you still need to get your mets zapped FIRST and FAST!!!  3-4mm mets are completely zapp-able!!!!  In fact, it is thought that anti-PD1, much like what is being reported with ipi, works well to help prevent brain mets from recurring due to the synergistic effect of their action once the brain is irradiated.  Best, c

I would love for you to get into an anti-PD1 trial…and even better for it to be on the market as well.  BUT…you still need to get your mets zapped FIRST and FAST!!!  3-4mm mets are completely zapp-able!!!!  In fact, it is thought that anti-PD1, much like what is being reported with ipi, works well to help prevent brain mets from recurring due to the synergistic effect of their action once the brain is irradiated.  Best, c

I would love for you to get into an anti-PD1 trial…and even better for it to be on the market as well.  BUT…you still need to get your mets zapped FIRST and FAST!!!  3-4mm mets are completely zapp-able!!!!  In fact, it is thought that anti-PD1, much like what is being reported with ipi, works well to help prevent brain mets from recurring due to the synergistic effect of their action once the brain is irradiated.  Best, c

Denise,

So sorry to hear you are dealing with this. Only looking forward will help you, however if you have an oncologist you didn’t believe in concerning the treatment plan dosages, managing side effects, etc, maybe now is time to find another Dr. So hard to tell with Zel, it could’ve failed anyway, no one knows.

I had a 4 mm and 6 mm brain met zapped w SRS in Nov 2012 at Vanderbilt. So far, so good. they use Novalis Tx for SRS.

Dr Sosman just presented a paper at ASCO showing that BRAF+MEK inhibitors are much less effective if you’ve failed Zel. A real bummer for us all.

Conclusions: The clinical activity for 150/2 D+T combination is consistently superior in BRAFi-naive group vs BRAFi-resistant group in both Parts B and C. Dual MAPK blockade can delay clinical resistance to BRAF inhibition. However, once BRAFi resistance has occurred, the combination of BRAFi + MEKi is far less effective

Link:
http://meetinglibrary.asco.org/content/112346-132

Wishing you prayers and all the best. I wish there was more I could offer to help you get to that wedding.

Amy

Denise,

So sorry to hear you are dealing with this. Only looking forward will help you, however if you have an oncologist you didn’t believe in concerning the treatment plan dosages, managing side effects, etc, maybe now is time to find another Dr. So hard to tell with Zel, it could’ve failed anyway, no one knows.

I had a 4 mm and 6 mm brain met zapped w SRS in Nov 2012 at Vanderbilt. So far, so good. they use Novalis Tx for SRS.

Dr Sosman just presented a paper at ASCO showing that BRAF+MEK inhibitors are much less effective if you’ve failed Zel. A real bummer for us all.

Conclusions: The clinical activity for 150/2 D+T combination is consistently superior in BRAFi-naive group vs BRAFi-resistant group in both Parts B and C. Dual MAPK blockade can delay clinical resistance to BRAF inhibition. However, once BRAFi resistance has occurred, the combination of BRAFi + MEKi is far less effective

Link:
http://meetinglibrary.asco.org/content/112346-132

Wishing you prayers and all the best. I wish there was more I could offer to help you get to that wedding.

Amy

Denise,

So sorry to hear you are dealing with this. Only looking forward will help you, however if you have an oncologist you didn’t believe in concerning the treatment plan dosages, managing side effects, etc, maybe now is time to find another Dr. So hard to tell with Zel, it could’ve failed anyway, no one knows.

I had a 4 mm and 6 mm brain met zapped w SRS in Nov 2012 at Vanderbilt. So far, so good. they use Novalis Tx for SRS.

Dr Sosman just presented a paper at ASCO showing that BRAF+MEK inhibitors are much less effective if you’ve failed Zel. A real bummer for us all.

Conclusions: The clinical activity for 150/2 D+T combination is consistently superior in BRAFi-naive group vs BRAFi-resistant group in both Parts B and C. Dual MAPK blockade can delay clinical resistance to BRAF inhibition. However, once BRAFi resistance has occurred, the combination of BRAFi + MEKi is far less effective

Link:
http://meetinglibrary.asco.org/content/112346-132

Wishing you prayers and all the best. I wish there was more I could offer to help you get to that wedding.

Amy

Bubbles,

 

I wish anti-pd1 did work on brain mets. I was a "complete responder" on PD1. I was cancer free for over 12+.

Last month had routine 12 week scan  for the trial & they found a brain met and I got kicked off the trial.

I only wish that pd1 worked on brain mets

So sad!

Bubbles,

 

I wish anti-pd1 did work on brain mets. I was a "complete responder" on PD1. I was cancer free for over 12+.

Last month had routine 12 week scan  for the trial & they found a brain met and I got kicked off the trial.

I only wish that pd1 worked on brain mets

So sad!

Bubbles,

 

I wish anti-pd1 did work on brain mets. I was a "complete responder" on PD1. I was cancer free for over 12+.

Last month had routine 12 week scan  for the trial & they found a brain met and I got kicked off the trial.

I only wish that pd1 worked on brain mets

So sad!

I also forgot to mention that my doctor told me that pd1 does not cross the brain barrier.

 

Do you have any info about PD1 crossing the brain barrrier. Has Dr.Weber ever indicated if PD1 does or does not cross the brain barrier.

 

I also forgot to mention that my doctor told me that pd1 does not cross the brain barrier.

 

Do you have any info about PD1 crossing the brain barrrier. Has Dr.Weber ever indicated if PD1 does or does not cross the brain barrier.

 

I also forgot to mention that my doctor told me that pd1 does not cross the brain barrier.

 

Do you have any info about PD1 crossing the brain barrrier. Has Dr.Weber ever indicated if PD1 does or does not cross the brain barrier.

 

Denise,
What dose did you reduce Zel to? I know that some docs say that reducing from 4/4 to 3/3 is still effective, (it was for me) they do not advise going below that.
Karen

Denise,
What dose did you reduce Zel to? I know that some docs say that reducing from 4/4 to 3/3 is still effective, (it was for me) they do not advise going below that.
Karen

Denise,
What dose did you reduce Zel to? I know that some docs say that reducing from 4/4 to 3/3 is still effective, (it was for me) they do not advise going below that.
Karen

Immunotherapies work by boosting ones own immune system to fight the cancer, the actual immunotherapy drug itself does not fight the cancer, therefore it doesn't matter if the pd1 of yervoy itself crosses the blood brain barrier, because your immune system can go anywhere in your body, including your brain, and it is that immune system that will kill the cancer.  

my boyfriend did WBR, craniotomy, yervoy and now pd1 and his brain has remained stable throughout with one tiny met unchanged.  

His tumors are shrinking from the pd1 currently.  brain still the same. 

Immunotherapies work by boosting ones own immune system to fight the cancer, the actual immunotherapy drug itself does not fight the cancer, therefore it doesn't matter if the pd1 of yervoy itself crosses the blood brain barrier, because your immune system can go anywhere in your body, including your brain, and it is that immune system that will kill the cancer.  

my boyfriend did WBR, craniotomy, yervoy and now pd1 and his brain has remained stable throughout with one tiny met unchanged.  

His tumors are shrinking from the pd1 currently.  brain still the same. 

Immunotherapies work by boosting ones own immune system to fight the cancer, the actual immunotherapy drug itself does not fight the cancer, therefore it doesn't matter if the pd1 of yervoy itself crosses the blood brain barrier, because your immune system can go anywhere in your body, including your brain, and it is that immune system that will kill the cancer.  

my boyfriend did WBR, craniotomy, yervoy and now pd1 and his brain has remained stable throughout with one tiny met unchanged.  

His tumors are shrinking from the pd1 currently.  brain still the same. 

When I asked about the effect of Nivolumab on the brain, I was told that it probably does not work particularly well, but AFTER the brain is irradiated, it can definitely prevent tumors from returning because it gives you the absconal effect, in that once an inflammatory environment is created, the drug will work…much like what they are finding out about the use of ipi after SRS.  Of course, this is very preliminary thus far with the anti-PD1 drugs…but is becoming more clear with data from ipi.  I am so sorry for your recurrence..but you can check my latest blog post for all that I learned on my trip to Tampa last week.  According to the latest findings, after you get your met irradiated, ipi may be a very helpful…especially for you, since you will be post anti-PD1.  That is the sequence that the folks at Moffitt think will be most beneficial.,,,anti-PD1 followed by ipi.

Another thing to remember that is very important when thinking of ipi and anti-PD1 and the brain.  They are not conventional chemotherapy drugs.  We do not have to worry about them crossing the blood brain barrier.  We just want the T-cells that they stimulate to cross into the brain…which they do.

Yours, c

When I asked about the effect of Nivolumab on the brain, I was told that it probably does not work particularly well, but AFTER the brain is irradiated, it can definitely prevent tumors from returning because it gives you the absconal effect, in that once an inflammatory environment is created, the drug will work…much like what they are finding out about the use of ipi after SRS.  Of course, this is very preliminary thus far with the anti-PD1 drugs…but is becoming more clear with data from ipi.  I am so sorry for your recurrence..but you can check my latest blog post for all that I learned on my trip to Tampa last week.  According to the latest findings, after you get your met irradiated, ipi may be a very helpful…especially for you, since you will be post anti-PD1.  That is the sequence that the folks at Moffitt think will be most beneficial.,,,anti-PD1 followed by ipi.

Another thing to remember that is very important when thinking of ipi and anti-PD1 and the brain.  They are not conventional chemotherapy drugs.  We do not have to worry about them crossing the blood brain barrier.  We just want the T-cells that they stimulate to cross into the brain…which they do.

Yours, c

When I asked about the effect of Nivolumab on the brain, I was told that it probably does not work particularly well, but AFTER the brain is irradiated, it can definitely prevent tumors from returning because it gives you the absconal effect, in that once an inflammatory environment is created, the drug will work…much like what they are finding out about the use of ipi after SRS.  Of course, this is very preliminary thus far with the anti-PD1 drugs…but is becoming more clear with data from ipi.  I am so sorry for your recurrence..but you can check my latest blog post for all that I learned on my trip to Tampa last week.  According to the latest findings, after you get your met irradiated, ipi may be a very helpful…especially for you, since you will be post anti-PD1.  That is the sequence that the folks at Moffitt think will be most beneficial.,,,anti-PD1 followed by ipi.

Another thing to remember that is very important when thinking of ipi and anti-PD1 and the brain.  They are not conventional chemotherapy drugs.  We do not have to worry about them crossing the blood brain barrier.  We just want the T-cells that they stimulate to cross into the brain…which they do.

Yours, c

If nivolumab works, and it recognizes the right antigen on the tumor, the immune system will search around the whole body (including the brain) looking for the same antigen.  If one had brain mets the immune system will also recognize the antigen on those mets.  It's not like the body says oh, it's the brain lets not look there, your body will search everywhere and once it finds the antigen it's looking for, it can kill it.  Also as far as i know, the abscopal effect is still a rare occurance. 

If nivolumab works, and it recognizes the right antigen on the tumor, the immune system will search around the whole body (including the brain) looking for the same antigen.  If one had brain mets the immune system will also recognize the antigen on those mets.  It's not like the body says oh, it's the brain lets not look there, your body will search everywhere and once it finds the antigen it's looking for, it can kill it.  Also as far as i know, the abscopal effect is still a rare occurance. 

If nivolumab works, and it recognizes the right antigen on the tumor, the immune system will search around the whole body (including the brain) looking for the same antigen.  If one had brain mets the immune system will also recognize the antigen on those mets.  It's not like the body says oh, it's the brain lets not look there, your body will search everywhere and once it finds the antigen it's looking for, it can kill it.  Also as far as i know, the abscopal effect is still a rare occurance. 

Hi Denise,

The only advice I can offer you is the advice that you have unknowingly offered me:

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

Stay strong and look at all the treatments you listed: ipi, BRAF + MEK, Temador.  Thankfully there are plenty of options for you.  Good luck.

Brendan

 

Hi Denise,

The only advice I can offer you is the advice that you have unknowingly offered me:

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

Stay strong and look at all the treatments you listed: ipi, BRAF + MEK, Temador.  Thankfully there are plenty of options for you.  Good luck.

Brendan

 

Hi Denise,

The only advice I can offer you is the advice that you have unknowingly offered me:

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

Stay strong and look at all the treatments you listed: ipi, BRAF + MEK, Temador.  Thankfully there are plenty of options for you.  Good luck.

Brendan

 

Amen Phil. 

Denise, UCSF has been in 100% line with what Phil says. Everything I've heard there and elsewhere is that SRS/zap/radiation is the first-line treatment for small brain mets, rather than a medication.

Overall volume of all mets of them combined is the limiting factor for SRS. My radiation oncologist is Patricia (Penny) Sneed. Click here for her contact info. It wouldn't surprise me if she would talk to you at least briefly on the phone. I could ask her if she would if you would like. I know your INS. is an issue. 

 

Amen Phil. 

Denise, UCSF has been in 100% line with what Phil says. Everything I've heard there and elsewhere is that SRS/zap/radiation is the first-line treatment for small brain mets, rather than a medication.

Overall volume of all mets of them combined is the limiting factor for SRS. My radiation oncologist is Patricia (Penny) Sneed. Click here for her contact info. It wouldn't surprise me if she would talk to you at least briefly on the phone. I could ask her if she would if you would like. I know your INS. is an issue. 

 

Amen Phil. 

Denise, UCSF has been in 100% line with what Phil says. Everything I've heard there and elsewhere is that SRS/zap/radiation is the first-line treatment for small brain mets, rather than a medication.

Overall volume of all mets of them combined is the limiting factor for SRS. My radiation oncologist is Patricia (Penny) Sneed. Click here for her contact info. It wouldn't surprise me if she would talk to you at least briefly on the phone. I could ask her if she would if you would like. I know your INS. is an issue. 

 

Denise, I strongly concur with Phil and Kyle. Stereotactic radiosurgery (abbreviated SRS) is a generic term. There are 2 basic types– one uses a metal "birdcage" head frame and the other uses a custom-fitted plastic face mask. The mask is more comfortable and less frightening for most people, but I think the type of SRS machine that uses the metal frame allows the radiosurgeon to more precisely localize the radiation beams– hence they can accurately hit small tumors. 

Get yourself to a radiation oncology unit that uses the metal frame and ask again about treating your small brain mets. 

Denise, I strongly concur with Phil and Kyle. Stereotactic radiosurgery (abbreviated SRS) is a generic term. There are 2 basic types– one uses a metal "birdcage" head frame and the other uses a custom-fitted plastic face mask. The mask is more comfortable and less frightening for most people, but I think the type of SRS machine that uses the metal frame allows the radiosurgeon to more precisely localize the radiation beams– hence they can accurately hit small tumors. 

Get yourself to a radiation oncology unit that uses the metal frame and ask again about treating your small brain mets. 

Denise, I strongly concur with Phil and Kyle. Stereotactic radiosurgery (abbreviated SRS) is a generic term. There are 2 basic types– one uses a metal "birdcage" head frame and the other uses a custom-fitted plastic face mask. The mask is more comfortable and less frightening for most people, but I think the type of SRS machine that uses the metal frame allows the radiosurgeon to more precisely localize the radiation beams– hence they can accurately hit small tumors. 

Get yourself to a radiation oncology unit that uses the metal frame and ask again about treating your small brain mets. 

Hi, Denise-

 

Whew! Thank you for letting us know that your radiation oncologist has every intention of zapping your small brain mets; he just wants to start with the big ones first. That makes sense. I'm vastly relieved.

I don't know much about PET scans, but I do know that they detect areas with high metabolic activity. Rapidly growing and dividing tumor cells are more metabolically active than the surrounding normal tissue, so tumors light up against a dark background. But some tissues, notably the brain, are naturally highly metabolically active so they always light up on PET scans. That is why it is hard to see a brain tumor on a PET scan– the whole organ is lighting up. Hence, they use MRIs for the brain. I don't know for sure about the heart, but I bet it is also highly metabolically active. So it wouldn't surprise me at all if you could always see the heart on a PET scan. I wouldn't worry about that unless and until your radiation oncologist tells you to.

If I had a choice, I would go with the newly-FDA approved BRAF inhibitor Tafinlar (trade name for dabrafenib) rather than Zelboraf. Tafinlar has a slightly different chemical structure than does Zelboraf so it might work on your Z resistant melanoma cells. Ask your medical oncologist about that.

Even better would be the Tafinlar + Mekinist (MEK) combination. I consider that to be a one-two punch against melanoma. Unfortunately, while Tafinlar and Mekinist are now both FDA approved, they were approved to be used seperately not together. So you would have to find a medical oncologist who would prescribe them together "off label" (my brother's oncologist always refused off label uses). You might also have a hard time getting your insurance companty to pay for both together. Oh, I so LOVE our screwed-up healthcare system! There might still be some clinical trials going for a BRAF+MEK combo. You might check into that.

Your ultimate goal of getting anti-PD1 is great. It sounds like you have an excellent plan to get there and some very good doctors to advise you along the way. Just keep doing what you have been doing. And spend all your free time requesting and reading brochures about Hawaii. What a wonderful gift from your cousin! Incredibly thoughtful!

Hi, Denise-

 

Whew! Thank you for letting us know that your radiation oncologist has every intention of zapping your small brain mets; he just wants to start with the big ones first. That makes sense. I'm vastly relieved.

I don't know much about PET scans, but I do know that they detect areas with high metabolic activity. Rapidly growing and dividing tumor cells are more metabolically active than the surrounding normal tissue, so tumors light up against a dark background. But some tissues, notably the brain, are naturally highly metabolically active so they always light up on PET scans. That is why it is hard to see a brain tumor on a PET scan– the whole organ is lighting up. Hence, they use MRIs for the brain. I don't know for sure about the heart, but I bet it is also highly metabolically active. So it wouldn't surprise me at all if you could always see the heart on a PET scan. I wouldn't worry about that unless and until your radiation oncologist tells you to.

If I had a choice, I would go with the newly-FDA approved BRAF inhibitor Tafinlar (trade name for dabrafenib) rather than Zelboraf. Tafinlar has a slightly different chemical structure than does Zelboraf so it might work on your Z resistant melanoma cells. Ask your medical oncologist about that.

Even better would be the Tafinlar + Mekinist (MEK) combination. I consider that to be a one-two punch against melanoma. Unfortunately, while Tafinlar and Mekinist are now both FDA approved, they were approved to be used seperately not together. So you would have to find a medical oncologist who would prescribe them together "off label" (my brother's oncologist always refused off label uses). You might also have a hard time getting your insurance companty to pay for both together. Oh, I so LOVE our screwed-up healthcare system! There might still be some clinical trials going for a BRAF+MEK combo. You might check into that.

Your ultimate goal of getting anti-PD1 is great. It sounds like you have an excellent plan to get there and some very good doctors to advise you along the way. Just keep doing what you have been doing. And spend all your free time requesting and reading brochures about Hawaii. What a wonderful gift from your cousin! Incredibly thoughtful!

Hi, Denise-

 

Whew! Thank you for letting us know that your radiation oncologist has every intention of zapping your small brain mets; he just wants to start with the big ones first. That makes sense. I'm vastly relieved.

I don't know much about PET scans, but I do know that they detect areas with high metabolic activity. Rapidly growing and dividing tumor cells are more metabolically active than the surrounding normal tissue, so tumors light up against a dark background. But some tissues, notably the brain, are naturally highly metabolically active so they always light up on PET scans. That is why it is hard to see a brain tumor on a PET scan– the whole organ is lighting up. Hence, they use MRIs for the brain. I don't know for sure about the heart, but I bet it is also highly metabolically active. So it wouldn't surprise me at all if you could always see the heart on a PET scan. I wouldn't worry about that unless and until your radiation oncologist tells you to.

If I had a choice, I would go with the newly-FDA approved BRAF inhibitor Tafinlar (trade name for dabrafenib) rather than Zelboraf. Tafinlar has a slightly different chemical structure than does Zelboraf so it might work on your Z resistant melanoma cells. Ask your medical oncologist about that.

Even better would be the Tafinlar + Mekinist (MEK) combination. I consider that to be a one-two punch against melanoma. Unfortunately, while Tafinlar and Mekinist are now both FDA approved, they were approved to be used seperately not together. So you would have to find a medical oncologist who would prescribe them together "off label" (my brother's oncologist always refused off label uses). You might also have a hard time getting your insurance companty to pay for both together. Oh, I so LOVE our screwed-up healthcare system! There might still be some clinical trials going for a BRAF+MEK combo. You might check into that.

Your ultimate goal of getting anti-PD1 is great. It sounds like you have an excellent plan to get there and some very good doctors to advise you along the way. Just keep doing what you have been doing. And spend all your free time requesting and reading brochures about Hawaii. What a wonderful gift from your cousin! Incredibly thoughtful!

Denise – glad to hear you have a plan. My heart always lights up on PET – the whole thing. When they found my tumor the report mentioned something lighting up differently than the rest of the heart. I always rely on the report more than the pictures.

Are you on anything for pain or Dex for your head?

So glad you have an awesome trip to look forward to.

Amy

Denise – glad to hear you have a plan. My heart always lights up on PET – the whole thing. When they found my tumor the report mentioned something lighting up differently than the rest of the heart. I always rely on the report more than the pictures.

Are you on anything for pain or Dex for your head?

So glad you have an awesome trip to look forward to.

Amy

Denise – glad to hear you have a plan. My heart always lights up on PET – the whole thing. When they found my tumor the report mentioned something lighting up differently than the rest of the heart. I always rely on the report more than the pictures.

Are you on anything for pain or Dex for your head?

So glad you have an awesome trip to look forward to.

Amy

Denise – I just posted an update on Wayne on Zel.    The day before we were to celebrate his ONE YEAR NED ANNI,

we learned he had 2 brain mets and one meninginoma (benign).   They will be doing Gamma Knife on him next Friday (June 28) at MDA for the 2 mets.   It was a devastating day for us, so we know how you feel.    :-((

They are talking about adding Temodar with the Zel after the Gamma Knife. 

We'll be pulling for you,  and watching for your updates and I will update on Wayne also, and what they do for him. 

Nancy (devoted wife of 3X Warrior Wayne) 

Denise – I just posted an update on Wayne on Zel.    The day before we were to celebrate his ONE YEAR NED ANNI,

we learned he had 2 brain mets and one meninginoma (benign).   They will be doing Gamma Knife on him next Friday (June 28) at MDA for the 2 mets.   It was a devastating day for us, so we know how you feel.    :-((

They are talking about adding Temodar with the Zel after the Gamma Knife. 

We'll be pulling for you,  and watching for your updates and I will update on Wayne also, and what they do for him. 

Nancy (devoted wife of 3X Warrior Wayne) 

Denise – I just posted an update on Wayne on Zel.    The day before we were to celebrate his ONE YEAR NED ANNI,

we learned he had 2 brain mets and one meninginoma (benign).   They will be doing Gamma Knife on him next Friday (June 28) at MDA for the 2 mets.   It was a devastating day for us, so we know how you feel.    :-((

They are talking about adding Temodar with the Zel after the Gamma Knife. 

We'll be pulling for you,  and watching for your updates and I will update on Wayne also, and what they do for him. 

Nancy (devoted wife of 3X Warrior Wayne) 

Forgot to say:    Wayne has been on FULL DOSE of ZEL from the get go.   4 in the morning – 4 in the evening.   

Forgot to say:    Wayne has been on FULL DOSE of ZEL from the get go.   4 in the morning – 4 in the evening.   

Forgot to say:    Wayne has been on FULL DOSE of ZEL from the get go.   4 in the morning – 4 in the evening.