Brain scan

Scooby,

I did Nivo/Opdivo in 2010 as a Stage IV NED melanoma patient, when it was still in clinical trials and the success story regarding anti-PD1 was nothing more than a big question mark. I had intial melanoma primaries in 2003 and 2007 (both removed surgically) and graduated to Stage IV in 2010 with mets to my right upper bronchus in my lung (removed surgically), a brain met (zapped by SRS), and right tonsil (removed surgically).  So…..I think it is pretty clear that…YES!!!!  I would absolutely f/u progression to a brain met with anti-PD1 after radiation to that met.  At this point, we KNOW the benefits of anti-PD1.  We KNOW the demonic powers of melanoma.  We KNOW the synergistic benefit of radiation simultaneous with or followed rapidly by immunotherapy (There are tons of articles and Jimmy Carter!!!)  So…again….yes.  I followed that protocol when many things were very much unknown.  Now that the ratties have proven the benefits that treatment can provide…..

An additional positive is that while I cannot know what the future holds…after all those mets….I have remained NED since 2010! (That ain't small potatoes after a brain met!!!  In 2010 – prognosis was 6 months!!)  I wish you my best in your upcoming procedure and whatever else you decide. Yours, celeste

Scooby,

I did Nivo/Opdivo in 2010 as a Stage IV NED melanoma patient, when it was still in clinical trials and the success story regarding anti-PD1 was nothing more than a big question mark. I had intial melanoma primaries in 2003 and 2007 (both removed surgically) and graduated to Stage IV in 2010 with mets to my right upper bronchus in my lung (removed surgically), a brain met (zapped by SRS), and right tonsil (removed surgically).  So…..I think it is pretty clear that…YES!!!!  I would absolutely f/u progression to a brain met with anti-PD1 after radiation to that met.  At this point, we KNOW the benefits of anti-PD1.  We KNOW the demonic powers of melanoma.  We KNOW the synergistic benefit of radiation simultaneous with or followed rapidly by immunotherapy (There are tons of articles and Jimmy Carter!!!)  So…again….yes.  I followed that protocol when many things were very much unknown.  Now that the ratties have proven the benefits that treatment can provide…..

An additional positive is that while I cannot know what the future holds…after all those mets….I have remained NED since 2010! (That ain't small potatoes after a brain met!!!  In 2010 – prognosis was 6 months!!)  I wish you my best in your upcoming procedure and whatever else you decide. Yours, celeste

Scooby,

I did Nivo/Opdivo in 2010 as a Stage IV NED melanoma patient, when it was still in clinical trials and the success story regarding anti-PD1 was nothing more than a big question mark. I had intial melanoma primaries in 2003 and 2007 (both removed surgically) and graduated to Stage IV in 2010 with mets to my right upper bronchus in my lung (removed surgically), a brain met (zapped by SRS), and right tonsil (removed surgically).  So…..I think it is pretty clear that…YES!!!!  I would absolutely f/u progression to a brain met with anti-PD1 after radiation to that met.  At this point, we KNOW the benefits of anti-PD1.  We KNOW the demonic powers of melanoma.  We KNOW the synergistic benefit of radiation simultaneous with or followed rapidly by immunotherapy (There are tons of articles and Jimmy Carter!!!)  So…again….yes.  I followed that protocol when many things were very much unknown.  Now that the ratties have proven the benefits that treatment can provide…..

An additional positive is that while I cannot know what the future holds…after all those mets….I have remained NED since 2010! (That ain't small potatoes after a brain met!!!  In 2010 – prognosis was 6 months!!)  I wish you my best in your upcoming procedure and whatever else you decide. Yours, celeste

Hi Scooby – my husband is facing exactly the same situation with the same treatment recommendation.  He's been on Tafinlar for 2+ years and recently had a brain met sneek up on him, requiring a craniotomy and follow up gamma knife.  He has a PET scan next week to see if the disease in the rest of his body remains stable, which it has been for quite some time.  If all is stable in the body, his oncologist recommended continuing with the Tafinlar and keeping close tabs on his brain.  He's holding back on Keytruda until absolutely necessary.  This was his 2nd craniotomy and 4th gamma knife in 4 years.  Gamma knife has been a pretty easy procedure (except the pain when the frame is placed) for my husband.  I wish you a successful treatment.

Ann

Hi Scooby – my husband is facing exactly the same situation with the same treatment recommendation.  He's been on Tafinlar for 2+ years and recently had a brain met sneek up on him, requiring a craniotomy and follow up gamma knife.  He has a PET scan next week to see if the disease in the rest of his body remains stable, which it has been for quite some time.  If all is stable in the body, his oncologist recommended continuing with the Tafinlar and keeping close tabs on his brain.  He's holding back on Keytruda until absolutely necessary.  This was his 2nd craniotomy and 4th gamma knife in 4 years.  Gamma knife has been a pretty easy procedure (except the pain when the frame is placed) for my husband.  I wish you a successful treatment.

Ann

Hi Scooby – my husband is facing exactly the same situation with the same treatment recommendation.  He's been on Tafinlar for 2+ years and recently had a brain met sneek up on him, requiring a craniotomy and follow up gamma knife.  He has a PET scan next week to see if the disease in the rest of his body remains stable, which it has been for quite some time.  If all is stable in the body, his oncologist recommended continuing with the Tafinlar and keeping close tabs on his brain.  He's holding back on Keytruda until absolutely necessary.  This was his 2nd craniotomy and 4th gamma knife in 4 years.  Gamma knife has been a pretty easy procedure (except the pain when the frame is placed) for my husband.  I wish you a successful treatment.

Ann

Hey Scooby,

I realize you are in the UK and know that things are different in every country.  I was very much impressed with the resilience and good fight that dear Lori Murdock put forward…she is certainly an example to us all.  I shared her video and wrote about her here:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/11/merde-again-with-love-to-friends-and.html

However, since you were asking what each of us might choose to do….I wanted to give you a complete answer.  I am well versed in limited options.  Since nothing other than IL2 and interferon were FDA approved until 2011 in the United States….I spent many years with melanoma and little I could even try to do about it.  If you really can do no more just now than self pay for ipi maintenance after SRS….I would probably choose to take the SRS and scan every 3 months….watching things carefully.  Ipi has about a 10-15% response rate and much increased rate of side effects.  If you have a recurrence….hopefully you could attain either of the anti-PD1 drugs (Keytruda or Opdivo) with their 40% response rate and decreased side effect profile at that time.  That is not a bad option, considering.

If possible though….I would be looking at clinical trial options….if only to see what was out there…  Are there any anti-PD1 trials ongoing in the UK for brain met patients?  Some have been started here in the US….because so often we were excluded from the early trials.  Are there any anti-PD1 combo trials ongoing?  There are some of those here.  Trials are tricky.  You have to find one.  Gain access by meeting all their particulars.  Some you risk getting nothing or the trial option.  Some have cross over options once an arm is proving to be better than the other.  Some do not.  Trials are not for everyone.  And, honestly, some trials shouldn't be offered to anyone!!!  But….I would probably work to find out what the options were….and then decide if I wanted to go in that direction or not.

Mostly…I think you should listen to the experiences of others.  (You're doing that!)  Work to see what realistic options you have.  Make the best choice you can within those options.  And NEVER look back!!  I know it is not easy.  Lori made that clear.  Hang in there.  Even getting just the SRS and careful observation…with anti-PD1 if needed later is not a bad thing.  Yours, c

Hey Scooby,

I realize you are in the UK and know that things are different in every country.  I was very much impressed with the resilience and good fight that dear Lori Murdock put forward…she is certainly an example to us all.  I shared her video and wrote about her here:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/11/merde-again-with-love-to-friends-and.html

However, since you were asking what each of us might choose to do….I wanted to give you a complete answer.  I am well versed in limited options.  Since nothing other than IL2 and interferon were FDA approved until 2011 in the United States….I spent many years with melanoma and little I could even try to do about it.  If you really can do no more just now than self pay for ipi maintenance after SRS….I would probably choose to take the SRS and scan every 3 months….watching things carefully.  Ipi has about a 10-15% response rate and much increased rate of side effects.  If you have a recurrence….hopefully you could attain either of the anti-PD1 drugs (Keytruda or Opdivo) with their 40% response rate and decreased side effect profile at that time.  That is not a bad option, considering.

If possible though….I would be looking at clinical trial options….if only to see what was out there…  Are there any anti-PD1 trials ongoing in the UK for brain met patients?  Some have been started here in the US….because so often we were excluded from the early trials.  Are there any anti-PD1 combo trials ongoing?  There are some of those here.  Trials are tricky.  You have to find one.  Gain access by meeting all their particulars.  Some you risk getting nothing or the trial option.  Some have cross over options once an arm is proving to be better than the other.  Some do not.  Trials are not for everyone.  And, honestly, some trials shouldn't be offered to anyone!!!  But….I would probably work to find out what the options were….and then decide if I wanted to go in that direction or not.

Mostly…I think you should listen to the experiences of others.  (You're doing that!)  Work to see what realistic options you have.  Make the best choice you can within those options.  And NEVER look back!!  I know it is not easy.  Lori made that clear.  Hang in there.  Even getting just the SRS and careful observation…with anti-PD1 if needed later is not a bad thing.  Yours, c

Hey Scooby,

I realize you are in the UK and know that things are different in every country.  I was very much impressed with the resilience and good fight that dear Lori Murdock put forward…she is certainly an example to us all.  I shared her video and wrote about her here:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/11/merde-again-with-love-to-friends-and.html

However, since you were asking what each of us might choose to do….I wanted to give you a complete answer.  I am well versed in limited options.  Since nothing other than IL2 and interferon were FDA approved until 2011 in the United States….I spent many years with melanoma and little I could even try to do about it.  If you really can do no more just now than self pay for ipi maintenance after SRS….I would probably choose to take the SRS and scan every 3 months….watching things carefully.  Ipi has about a 10-15% response rate and much increased rate of side effects.  If you have a recurrence….hopefully you could attain either of the anti-PD1 drugs (Keytruda or Opdivo) with their 40% response rate and decreased side effect profile at that time.  That is not a bad option, considering.

If possible though….I would be looking at clinical trial options….if only to see what was out there…  Are there any anti-PD1 trials ongoing in the UK for brain met patients?  Some have been started here in the US….because so often we were excluded from the early trials.  Are there any anti-PD1 combo trials ongoing?  There are some of those here.  Trials are tricky.  You have to find one.  Gain access by meeting all their particulars.  Some you risk getting nothing or the trial option.  Some have cross over options once an arm is proving to be better than the other.  Some do not.  Trials are not for everyone.  And, honestly, some trials shouldn't be offered to anyone!!!  But….I would probably work to find out what the options were….and then decide if I wanted to go in that direction or not.

Mostly…I think you should listen to the experiences of others.  (You're doing that!)  Work to see what realistic options you have.  Make the best choice you can within those options.  And NEVER look back!!  I know it is not easy.  Lori made that clear.  Hang in there.  Even getting just the SRS and careful observation…with anti-PD1 if needed later is not a bad thing.  Yours, c

Hi Scooby,

I am sorry to hear about your brain met and you are doing the right thing to ask as many questions, and talk to as many people, as you can beyond your immediate health care team. I am a firm believer in second, third, and even fourth professional opinions, but it's also so helpful to reach out to fellow patients for their experiences, as you are here.

I am 8 months into my diagnosis and had a single brain met on my first MRI scan. This put me at Stage IV from the hop. My healthcare team explained that the Gamma Knife would "zap" the brain met, but it was common that the day of the Gamma Knife to find more small tumors simply because the MRI during the Gamma Knife was more precise, slicing the images more thinly which could expose more tumors. That was my experience both times I had the Gamma Knife – first time, 1 met became 2 the day of the procedure; the second time, 2 mets became 3 the day of the procedure. So don't be alarmed if that happens.

I was also told by my healthcare team as well as on a second opinion at Sloan that immunotherapies worked in conjunction with the Gamma Knife (the "abscopal effect"), and that immunotherapy infusions could penetrate the blood/brain barrier if they were consistently administered. So I would not give up on pushing for whichever immunotherapy you can obtain either through a clinical trial or through insurance. The combo would be ideal, but Keytruda alone can also be effective, as in the case so far with Jimmy Carter.

On the other hand, I agree that the cost of the immunotherapy – both out-of-pocket expenses as well as possible side effects – is high if you can't get into a trial or your insurance in the UK doesn't cover it. Hopefully you can push for answers or at least expectations on if & when the immunotherapies that have been approved in the U.S. might follow suit in the U.K., and the Gamma Knife procedure(s) could be your bridge?

More on my story here:

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/mucosal-melanoma-brain-mets#comment-92241

Wishing you much success with your upcoming Gamma Knife procedure – I remember I made my doctor laugh when they got that contraption on my head and I exclaimed, "I feel like My Favorite Martian!" The anti-anxiety meds they give you definitely help 🙂

All best,

Hi Scooby,

I am sorry to hear about your brain met and you are doing the right thing to ask as many questions, and talk to as many people, as you can beyond your immediate health care team. I am a firm believer in second, third, and even fourth professional opinions, but it's also so helpful to reach out to fellow patients for their experiences, as you are here.

I am 8 months into my diagnosis and had a single brain met on my first MRI scan. This put me at Stage IV from the hop. My healthcare team explained that the Gamma Knife would "zap" the brain met, but it was common that the day of the Gamma Knife to find more small tumors simply because the MRI during the Gamma Knife was more precise, slicing the images more thinly which could expose more tumors. That was my experience both times I had the Gamma Knife – first time, 1 met became 2 the day of the procedure; the second time, 2 mets became 3 the day of the procedure. So don't be alarmed if that happens.

I was also told by my healthcare team as well as on a second opinion at Sloan that immunotherapies worked in conjunction with the Gamma Knife (the "abscopal effect"), and that immunotherapy infusions could penetrate the blood/brain barrier if they were consistently administered. So I would not give up on pushing for whichever immunotherapy you can obtain either through a clinical trial or through insurance. The combo would be ideal, but Keytruda alone can also be effective, as in the case so far with Jimmy Carter.

On the other hand, I agree that the cost of the immunotherapy – both out-of-pocket expenses as well as possible side effects – is high if you can't get into a trial or your insurance in the UK doesn't cover it. Hopefully you can push for answers or at least expectations on if & when the immunotherapies that have been approved in the U.S. might follow suit in the U.K., and the Gamma Knife procedure(s) could be your bridge?

More on my story here:

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/mucosal-melanoma-brain-mets#comment-92241

Wishing you much success with your upcoming Gamma Knife procedure – I remember I made my doctor laugh when they got that contraption on my head and I exclaimed, "I feel like My Favorite Martian!" The anti-anxiety meds they give you definitely help 🙂

All best,

Hi Scooby,

I am sorry to hear about your brain met and you are doing the right thing to ask as many questions, and talk to as many people, as you can beyond your immediate health care team. I am a firm believer in second, third, and even fourth professional opinions, but it's also so helpful to reach out to fellow patients for their experiences, as you are here.

I am 8 months into my diagnosis and had a single brain met on my first MRI scan. This put me at Stage IV from the hop. My healthcare team explained that the Gamma Knife would "zap" the brain met, but it was common that the day of the Gamma Knife to find more small tumors simply because the MRI during the Gamma Knife was more precise, slicing the images more thinly which could expose more tumors. That was my experience both times I had the Gamma Knife – first time, 1 met became 2 the day of the procedure; the second time, 2 mets became 3 the day of the procedure. So don't be alarmed if that happens.

I was also told by my healthcare team as well as on a second opinion at Sloan that immunotherapies worked in conjunction with the Gamma Knife (the "abscopal effect"), and that immunotherapy infusions could penetrate the blood/brain barrier if they were consistently administered. So I would not give up on pushing for whichever immunotherapy you can obtain either through a clinical trial or through insurance. The combo would be ideal, but Keytruda alone can also be effective, as in the case so far with Jimmy Carter.

On the other hand, I agree that the cost of the immunotherapy – both out-of-pocket expenses as well as possible side effects – is high if you can't get into a trial or your insurance in the UK doesn't cover it. Hopefully you can push for answers or at least expectations on if & when the immunotherapies that have been approved in the U.S. might follow suit in the U.K., and the Gamma Knife procedure(s) could be your bridge?

More on my story here:

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/mucosal-melanoma-brain-mets#comment-92241

Wishing you much success with your upcoming Gamma Knife procedure – I remember I made my doctor laugh when they got that contraption on my head and I exclaimed, "I feel like My Favorite Martian!" The anti-anxiety meds they give you definitely help 🙂

All best,

Hi Scooby123, I had three small brain mets back in 2013 and had cyberknife treatment(SRS) at the ottawa general hospital. Scan every 3 months since and still clear, also the treatment was very easy and I had no side effects ie swelling etc. I try to use the treatment as an excuse to get of out jobs around the house with my wife but she never falls for it. Best of luck with the treatment!!!! Ed     P.S. before I forget (cyberknife joke) do you have any other active sites other than the brain?

Hi Scooby123, I had three small brain mets back in 2013 and had cyberknife treatment(SRS) at the ottawa general hospital. Scan every 3 months since and still clear, also the treatment was very easy and I had no side effects ie swelling etc. I try to use the treatment as an excuse to get of out jobs around the house with my wife but she never falls for it. Best of luck with the treatment!!!! Ed     P.S. before I forget (cyberknife joke) do you have any other active sites other than the brain?

Hi Scooby123, I had three small brain mets back in 2013 and had cyberknife treatment(SRS) at the ottawa general hospital. Scan every 3 months since and still clear, also the treatment was very easy and I had no side effects ie swelling etc. I try to use the treatment as an excuse to get of out jobs around the house with my wife but she never falls for it. Best of luck with the treatment!!!! Ed     P.S. before I forget (cyberknife joke) do you have any other active sites other than the brain?

http://www.onclive.com/web-exclusives/chmp-recommends-approval-of-nivolumabipilimumab-combo-for-melanoma

http://www.onclive.com/web-exclusives/chmp-recommends-approval-of-nivolumabipilimumab-combo-for-melanoma

http://www.onclive.com/web-exclusives/chmp-recommends-approval-of-nivolumabipilimumab-combo-for-melanoma