Need Direction…latest & greatest

I wish I had some advice for you Josh, but I at least want to send out a huge hug. 

Hoping this roller coaster stops giving you these awful twists and starts to become a more positive ride.

Keep that fight alive.

I wish I had some advice for you Josh, but I at least want to send out a huge hug. 

Hoping this roller coaster stops giving you these awful twists and starts to become a more positive ride.

Keep that fight alive.

I wish I had some advice for you Josh, but I at least want to send out a huge hug. 

Hoping this roller coaster stops giving you these awful twists and starts to become a more positive ride.

Keep that fight alive.

Crao Josh, I don't (yet) have experience with brain mets, but I do know that if you have a choice between cyberknife and gamma knife, the cyberknife does not require a rigid head frame to be screwed against your head. I don't know about the effectiveness of one over the other – I think they are both excellent but maybe someone with experience can chime in.

Crao Josh, I don't (yet) have experience with brain mets, but I do know that if you have a choice between cyberknife and gamma knife, the cyberknife does not require a rigid head frame to be screwed against your head. I don't know about the effectiveness of one over the other – I think they are both excellent but maybe someone with experience can chime in.

Crao Josh, I don't (yet) have experience with brain mets, but I do know that if you have a choice between cyberknife and gamma knife, the cyberknife does not require a rigid head frame to be screwed against your head. I don't know about the effectiveness of one over the other – I think they are both excellent but maybe someone with experience can chime in.

Ask about getting ipi or keytruda within days of gamma knife. My Mom had the abscopal affect. She started ipi 4 days after gamma knife.

Keytruda may work faster on the brain and people who responded to ipi seen to respond as well ot better, if this helps. – Per my Mom’s doctors.

I always recommend a second opinion. So find the best guy or gal (really team) and act fast.

I have recently heard that they can do stereotactic body radiation therapy (SBRT). It kinda works like gamma knife for soft tissue tumors. It might be worth checking into this for other masses.

You will be in my thoughts. You can kick this.

PS
Be sure your doctor’s put you on keppra at 1000mg. Stay on it for 6 months. You have a high chance of seizures and you don’t want to be sidelined because you had one. My Mom took it at night. – 500mg 2x a day made her a zombie.

Ask about getting ipi or keytruda within days of gamma knife. My Mom had the abscopal affect. She started ipi 4 days after gamma knife.

Keytruda may work faster on the brain and people who responded to ipi seen to respond as well ot better, if this helps. – Per my Mom’s doctors.

I always recommend a second opinion. So find the best guy or gal (really team) and act fast.

I have recently heard that they can do stereotactic body radiation therapy (SBRT). It kinda works like gamma knife for soft tissue tumors. It might be worth checking into this for other masses.

You will be in my thoughts. You can kick this.

PS
Be sure your doctor’s put you on keppra at 1000mg. Stay on it for 6 months. You have a high chance of seizures and you don’t want to be sidelined because you had one. My Mom took it at night. – 500mg 2x a day made her a zombie.

Ask about getting ipi or keytruda within days of gamma knife. My Mom had the abscopal affect. She started ipi 4 days after gamma knife.

Keytruda may work faster on the brain and people who responded to ipi seen to respond as well ot better, if this helps. – Per my Mom’s doctors.

I always recommend a second opinion. So find the best guy or gal (really team) and act fast.

I have recently heard that they can do stereotactic body radiation therapy (SBRT). It kinda works like gamma knife for soft tissue tumors. It might be worth checking into this for other masses.

You will be in my thoughts. You can kick this.

PS
Be sure your doctor’s put you on keppra at 1000mg. Stay on it for 6 months. You have a high chance of seizures and you don’t want to be sidelined because you had one. My Mom took it at night. – 500mg 2x a day made her a zombie.

Josh, sorry to hear.  When my TIL cells didn't grow at MDA last year, I moved to ipi/nivo (after having failed ipi and Keytruda individually). Results have been good so far.  Not sure if this is an option given the close proximity to ipi, but maybe you could aim for 2 combined infusions before moving to nivo only?

Josh, sorry to hear.  When my TIL cells didn't grow at MDA last year, I moved to ipi/nivo (after having failed ipi and Keytruda individually). Results have been good so far.  Not sure if this is an option given the close proximity to ipi, but maybe you could aim for 2 combined infusions before moving to nivo only?

Josh, sorry to hear.  When my TIL cells didn't grow at MDA last year, I moved to ipi/nivo (after having failed ipi and Keytruda individually). Results have been good so far.  Not sure if this is an option given the close proximity to ipi, but maybe you could aim for 2 combined infusions before moving to nivo only?

I just wanted to say you have a lot of people rooting for you here. Try to take it one day at a time.

I just wanted to say you have a lot of people rooting for you here. Try to take it one day at a time.

I just wanted to say you have a lot of people rooting for you here. Try to take it one day at a time.

Hi Josh, just to add to the ideas that already have been given to you is a new combination that was posted on the forum earlier this week, which combines Pembro with SD-101 a TLR9 agonist drug from a company called Dynavax technologies. Here is a link to the company, and I believe they are doing some trials with this at Stanford. http://www.marketwired.com/press-release/dynavax-presents-early-clinical-data-from-lead-cancer-immunotherapy-candidate-sd-101-nasdaq-dvax-2165023.htm   On using cyberknife or gamma knife , while I don't have any data but I do have personal experience with cyberknife and it was super easy system. They fitted me for a mask that attached to the table and the treatment lasted about 50min to treat 3 tumors ranging in size from 4 to 5mm. That was back in the fall of 2013 and I have been lucky to have no side effects so far. Best Wishes!!! Ed

Hi Josh, just to add to the ideas that already have been given to you is a new combination that was posted on the forum earlier this week, which combines Pembro with SD-101 a TLR9 agonist drug from a company called Dynavax technologies. Here is a link to the company, and I believe they are doing some trials with this at Stanford. http://www.marketwired.com/press-release/dynavax-presents-early-clinical-data-from-lead-cancer-immunotherapy-candidate-sd-101-nasdaq-dvax-2165023.htm   On using cyberknife or gamma knife , while I don't have any data but I do have personal experience with cyberknife and it was super easy system. They fitted me for a mask that attached to the table and the treatment lasted about 50min to treat 3 tumors ranging in size from 4 to 5mm. That was back in the fall of 2013 and I have been lucky to have no side effects so far. Best Wishes!!! Ed

Hi Josh, just to add to the ideas that already have been given to you is a new combination that was posted on the forum earlier this week, which combines Pembro with SD-101 a TLR9 agonist drug from a company called Dynavax technologies. Here is a link to the company, and I believe they are doing some trials with this at Stanford. http://www.marketwired.com/press-release/dynavax-presents-early-clinical-data-from-lead-cancer-immunotherapy-candidate-sd-101-nasdaq-dvax-2165023.htm   On using cyberknife or gamma knife , while I don't have any data but I do have personal experience with cyberknife and it was super easy system. They fitted me for a mask that attached to the table and the treatment lasted about 50min to treat 3 tumors ranging in size from 4 to 5mm. That was back in the fall of 2013 and I have been lucky to have no side effects so far. Best Wishes!!! Ed

Oh Joshie!  Shit!  So very sorry. I am thinking.  First thing out of the box:  I know some folks who failed to respond to much of anything and are currently doing well on a combo of  anti-PD1 and urelumab.  There are still all the intralesionals….which are looking good combined with anti-PD1.  There's atezolizumab…alone or with other products.  Here is a link in which Weber talks about lots of upcoming therapies….with things he thinks will be tested and have promise at the bottom. 

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/immunology-updatewebinar-for-melanoma.html

Obviously, I have not researched where all these are offered or what obstacles may be present for your participation, but I will keep thinking.  May post on blog since too many links here are blocked. 

But….radiation to brain mets…SRS or otherwise, sounds like a good first order of business.  The ipi/nivo combo doesn't sound too bad….perhaps it will give success (maybe!!) or at least keep things stable until you decide what to do next. 

Hang in there sweetie.  love, c

Oh Joshie!  Shit!  So very sorry. I am thinking.  First thing out of the box:  I know some folks who failed to respond to much of anything and are currently doing well on a combo of  anti-PD1 and urelumab.  There are still all the intralesionals….which are looking good combined with anti-PD1.  There's atezolizumab…alone or with other products.  Here is a link in which Weber talks about lots of upcoming therapies….with things he thinks will be tested and have promise at the bottom. 

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/immunology-updatewebinar-for-melanoma.html

Obviously, I have not researched where all these are offered or what obstacles may be present for your participation, but I will keep thinking.  May post on blog since too many links here are blocked. 

But….radiation to brain mets…SRS or otherwise, sounds like a good first order of business.  The ipi/nivo combo doesn't sound too bad….perhaps it will give success (maybe!!) or at least keep things stable until you decide what to do next. 

Hang in there sweetie.  love, c

Oh Joshie!  Shit!  So very sorry. I am thinking.  First thing out of the box:  I know some folks who failed to respond to much of anything and are currently doing well on a combo of  anti-PD1 and urelumab.  There are still all the intralesionals….which are looking good combined with anti-PD1.  There's atezolizumab…alone or with other products.  Here is a link in which Weber talks about lots of upcoming therapies….with things he thinks will be tested and have promise at the bottom. 

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/immunology-updatewebinar-for-melanoma.html

Obviously, I have not researched where all these are offered or what obstacles may be present for your participation, but I will keep thinking.  May post on blog since too many links here are blocked. 

But….radiation to brain mets…SRS or otherwise, sounds like a good first order of business.  The ipi/nivo combo doesn't sound too bad….perhaps it will give success (maybe!!) or at least keep things stable until you decide what to do next. 

Hang in there sweetie.  love, c

Josh you were one of the first people to respond to me and ill always will remember that. But remember your strong and you said you feel strong. Keep that in mind. My sisters friends dad has been stage 4 for 17 years. Hes had his ups and downs. But is still here. I get emotional and go to that place. My sister tells me not to go to that place until the doctors have told you there is nothing for them to do. You on the other hand have options. Each day in the medical field they learn more. I was reading a article that a dr at a hospital has made a nano fiber that is smaller then a piece of hair. Where when heated up it destroys the tumor. Melanoma was one of the cancers they said they wanted to use it for along with stomach. Greg

Josh you were one of the first people to respond to me and ill always will remember that. But remember your strong and you said you feel strong. Keep that in mind. My sisters friends dad has been stage 4 for 17 years. Hes had his ups and downs. But is still here. I get emotional and go to that place. My sister tells me not to go to that place until the doctors have told you there is nothing for them to do. You on the other hand have options. Each day in the medical field they learn more. I was reading a article that a dr at a hospital has made a nano fiber that is smaller then a piece of hair. Where when heated up it destroys the tumor. Melanoma was one of the cancers they said they wanted to use it for along with stomach. Greg

Josh you were one of the first people to respond to me and ill always will remember that. But remember your strong and you said you feel strong. Keep that in mind. My sisters friends dad has been stage 4 for 17 years. Hes had his ups and downs. But is still here. I get emotional and go to that place. My sister tells me not to go to that place until the doctors have told you there is nothing for them to do. You on the other hand have options. Each day in the medical field they learn more. I was reading a article that a dr at a hospital has made a nano fiber that is smaller then a piece of hair. Where when heated up it destroys the tumor. Melanoma was one of the cancers they said they wanted to use it for along with stomach. Greg

Hi Josh,

Think you have already had more than enough punches.. like many of us here. 

I can empathise with your fear of "the talk " wih your children ..as this was a cause of much distress to me when I got the stage IV diagnosis. My daughter had already sensed that things weren't going well , and so in a wayI think it was a relief to her when we spelt out the situation .. in as far as we could. Uncertainty  as to the future is a constant companion but the TIL trial may be the thing that changes your luck and we all need some on this journey. In a way it was a relief when both my son and daughter knew how serious the melanoma was  , and we have cried together and hugged each other for comfort. 

Your children are much younger than mine, but you may be surprised at how much they already know or understand implicitly.  I guess it all depends on how much you have told them so far. My oncologist told me its not over yet and the same applies to you. The gamma knife may even help the TIL therapy work.. but that is something you probably know already… but there are heaps of folk willing it to be the case for you and maybe that will make the difference.

Keep on keeping on and  fighting for a cure,

Best of wishes to you and the family

Deb

 

 

 

Hi Josh,

Think you have already had more than enough punches.. like many of us here. 

I can empathise with your fear of "the talk " wih your children ..as this was a cause of much distress to me when I got the stage IV diagnosis. My daughter had already sensed that things weren't going well , and so in a wayI think it was a relief to her when we spelt out the situation .. in as far as we could. Uncertainty  as to the future is a constant companion but the TIL trial may be the thing that changes your luck and we all need some on this journey. In a way it was a relief when both my son and daughter knew how serious the melanoma was  , and we have cried together and hugged each other for comfort. 

Your children are much younger than mine, but you may be surprised at how much they already know or understand implicitly.  I guess it all depends on how much you have told them so far. My oncologist told me its not over yet and the same applies to you. The gamma knife may even help the TIL therapy work.. but that is something you probably know already… but there are heaps of folk willing it to be the case for you and maybe that will make the difference.

Keep on keeping on and  fighting for a cure,

Best of wishes to you and the family

Deb

 

 

 

Hi Josh,

Think you have already had more than enough punches.. like many of us here. 

I can empathise with your fear of "the talk " wih your children ..as this was a cause of much distress to me when I got the stage IV diagnosis. My daughter had already sensed that things weren't going well , and so in a wayI think it was a relief to her when we spelt out the situation .. in as far as we could. Uncertainty  as to the future is a constant companion but the TIL trial may be the thing that changes your luck and we all need some on this journey. In a way it was a relief when both my son and daughter knew how serious the melanoma was  , and we have cried together and hugged each other for comfort. 

Your children are much younger than mine, but you may be surprised at how much they already know or understand implicitly.  I guess it all depends on how much you have told them so far. My oncologist told me its not over yet and the same applies to you. The gamma knife may even help the TIL therapy work.. but that is something you probably know already… but there are heaps of folk willing it to be the case for you and maybe that will make the difference.

Keep on keeping on and  fighting for a cure,

Best of wishes to you and the family

Deb

 

 

 

Hey Josh,

Certainly not the news you were looking for, but as other respondents have said, you ARE NOT out of options.  I can't speak intelligibly about the different therapies, but there appear to be several.  You're at one of the best places to fight this, but maybe investigating other opinions would be beneficial.  Perhaps a call to Dana Farber or Memorial Sloan Kettering might yield different paths or treatment modalities.  

I really just wanted to show my support for you just as you've always shown support for others.

All the best and keep us posted, brother.

 

Stan

Hey Josh,

Certainly not the news you were looking for, but as other respondents have said, you ARE NOT out of options.  I can't speak intelligibly about the different therapies, but there appear to be several.  You're at one of the best places to fight this, but maybe investigating other opinions would be beneficial.  Perhaps a call to Dana Farber or Memorial Sloan Kettering might yield different paths or treatment modalities.  

I really just wanted to show my support for you just as you've always shown support for others.

All the best and keep us posted, brother.

 

Stan

Hey Josh,

Certainly not the news you were looking for, but as other respondents have said, you ARE NOT out of options.  I can't speak intelligibly about the different therapies, but there appear to be several.  You're at one of the best places to fight this, but maybe investigating other opinions would be beneficial.  Perhaps a call to Dana Farber or Memorial Sloan Kettering might yield different paths or treatment modalities.  

I really just wanted to show my support for you just as you've always shown support for others.

All the best and keep us posted, brother.

 

Stan

Hey Josh,

We understand you are battle fatigued.  This road is so full of potholes, it often seems we can never get our footing back.  You are one tough cookie, and have much to live for so back into the trenches you must go.  Regarding the conversation with kids, I often wonder how or when I'll need to have that talk but am keeping it all to myself because there is no upside for them.  It will happen only if it needs to happen. Although I have chosen surgery to get a reset on my disease, I was really debating one more go-round of drug therapy with what seems like a really promising trial of Durvalumab combined with Epacadostat.  Especially of interest is the IDO inhibitor, which like CTLA-4 and PD-1, is newly discovered checkpoint inhibitor.  As I recall you also never went the anti PD-1 route and as noted in other messages here, it seems like a natural.  There may even be trials combining the anti PD-1 and IDO which sounds like a kick-ass combo.  In any event, the main thing is as tough as things are right now, it definitely is not over and options remain.  You are in the thoughts and prayers of many here.  The positive energy is surrounding you.  Stay strong my friend, keep fighting the good fight, and seek peace within.

Gary

Hey Josh,

We understand you are battle fatigued.  This road is so full of potholes, it often seems we can never get our footing back.  You are one tough cookie, and have much to live for so back into the trenches you must go.  Regarding the conversation with kids, I often wonder how or when I'll need to have that talk but am keeping it all to myself because there is no upside for them.  It will happen only if it needs to happen. Although I have chosen surgery to get a reset on my disease, I was really debating one more go-round of drug therapy with what seems like a really promising trial of Durvalumab combined with Epacadostat.  Especially of interest is the IDO inhibitor, which like CTLA-4 and PD-1, is newly discovered checkpoint inhibitor.  As I recall you also never went the anti PD-1 route and as noted in other messages here, it seems like a natural.  There may even be trials combining the anti PD-1 and IDO which sounds like a kick-ass combo.  In any event, the main thing is as tough as things are right now, it definitely is not over and options remain.  You are in the thoughts and prayers of many here.  The positive energy is surrounding you.  Stay strong my friend, keep fighting the good fight, and seek peace within.

Gary

Hey Josh,

We understand you are battle fatigued.  This road is so full of potholes, it often seems we can never get our footing back.  You are one tough cookie, and have much to live for so back into the trenches you must go.  Regarding the conversation with kids, I often wonder how or when I'll need to have that talk but am keeping it all to myself because there is no upside for them.  It will happen only if it needs to happen. Although I have chosen surgery to get a reset on my disease, I was really debating one more go-round of drug therapy with what seems like a really promising trial of Durvalumab combined with Epacadostat.  Especially of interest is the IDO inhibitor, which like CTLA-4 and PD-1, is newly discovered checkpoint inhibitor.  As I recall you also never went the anti PD-1 route and as noted in other messages here, it seems like a natural.  There may even be trials combining the anti PD-1 and IDO which sounds like a kick-ass combo.  In any event, the main thing is as tough as things are right now, it definitely is not over and options remain.  You are in the thoughts and prayers of many here.  The positive energy is surrounding you.  Stay strong my friend, keep fighting the good fight, and seek peace within.

Gary

SD-101 (dynavex) with pembro:  https://clinicaltrials.gov/ct2/show/NCT02521870?term=SD+-+101+and+pembrolizumab&rank=1

This is what Ed was sharing above.  Got this tip from my dear Eric who is looking hard for you, too, Joshie.  Some arms do have an exclusion for prior immunotherapy…but it looks as though some allow it.  c

SD-101 (dynavex) with pembro:  https://clinicaltrials.gov/ct2/show/NCT02521870?term=SD+-+101+and+pembrolizumab&rank=1

This is what Ed was sharing above.  Got this tip from my dear Eric who is looking hard for you, too, Joshie.  Some arms do have an exclusion for prior immunotherapy…but it looks as though some allow it.  c

SD-101 (dynavex) with pembro:  https://clinicaltrials.gov/ct2/show/NCT02521870?term=SD+-+101+and+pembrolizumab&rank=1

This is what Ed was sharing above.  Got this tip from my dear Eric who is looking hard for you, too, Joshie.  Some arms do have an exclusion for prior immunotherapy…but it looks as though some allow it.  c

And this IS RECRUITING!!!  Enoblitzumab (NGA271) with Pembro:  https://clinicaltrials.gov/ct2/show/NCT02475213?term=melanoma+271&rank=3

You may have to have brain tumors zapped before and be off any steriods for a couple of weeks…but there doesn't seem to be any other exclusion that would affect you.  However, you do have to be positive for B7H3, as surface antigen, that they will test your tumor for.

Kinda like this one!!  c

And this IS RECRUITING!!!  Enoblitzumab (NGA271) with Pembro:  https://clinicaltrials.gov/ct2/show/NCT02475213?term=melanoma+271&rank=3

You may have to have brain tumors zapped before and be off any steriods for a couple of weeks…but there doesn't seem to be any other exclusion that would affect you.  However, you do have to be positive for B7H3, as surface antigen, that they will test your tumor for.

Kinda like this one!!  c

And this IS RECRUITING!!!  Enoblitzumab (NGA271) with Pembro:  https://clinicaltrials.gov/ct2/show/NCT02475213?term=melanoma+271&rank=3

You may have to have brain tumors zapped before and be off any steriods for a couple of weeks…but there doesn't seem to be any other exclusion that would affect you.  However, you do have to be positive for B7H3, as surface antigen, that they will test your tumor for.

Kinda like this one!!  c

This is recruiting in lots of locations.  It is NGA271 (enoblitzumab) alone.  There seem to be NO problematic exclusions.  Still nee to be positive for B7H3.  https://clinicaltrials.gov/ct2/show/NCT01391143?term=melanoma+271&rank=4

This is recruiting in lots of locations.  It is NGA271 (enoblitzumab) alone.  There seem to be NO problematic exclusions.  Still nee to be positive for B7H3.  https://clinicaltrials.gov/ct2/show/NCT01391143?term=melanoma+271&rank=4

This is recruiting in lots of locations.  It is NGA271 (enoblitzumab) alone.  There seem to be NO problematic exclusions.  Still nee to be positive for B7H3.  https://clinicaltrials.gov/ct2/show/NCT01391143?term=melanoma+271&rank=4

Here is another that is recruiting:  Epacadostat with vaccine:  https://clinicaltrials.gov/ct2/show/NCT01961115?term=epacadostat+and+melanoma&rank=2

No exclusions seem problematic.  c

Here is another that is recruiting:  Epacadostat with vaccine:  https://clinicaltrials.gov/ct2/show/NCT01961115?term=epacadostat+and+melanoma&rank=2

No exclusions seem problematic.  c

Here is another that is recruiting:  Epacadostat with vaccine:  https://clinicaltrials.gov/ct2/show/NCT01961115?term=epacadostat+and+melanoma&rank=2

No exclusions seem problematic.  c

I'm praying for you and your family, Josh.

 

I'm praying for you and your family, Josh.

 

I'm praying for you and your family, Josh.

 

Hey Josh, Keep your duke’s up! You’ve had some bad body blows. You have the best Drs. Family and all of us in your corner. You will win this Bout!!!

Best,Paul

Hey Josh, Keep your duke’s up! You’ve had some bad body blows. You have the best Drs. Family and all of us in your corner. You will win this Bout!!!

Best,Paul

Hey Josh, Keep your duke’s up! You’ve had some bad body blows. You have the best Drs. Family and all of us in your corner. You will win this Bout!!!

Best,Paul

Hey Josh,

I'm not a huge help but the advice you've received is great. It's so tough knowing what step to take. Although my kiddos are too young for "the talk," I remember all the thoughts I had when my health was bad. I often talked to God (in my head) and felt that I wasn't afraid to die, but I was afraid of what my family would go through if I did. 

My husband and I are in Houston right now through Monday. If you're still around and need anything – coffee delivered, a movie night, or two sets of ears to listen, please don't hesitate to reach out. 

Ashley

701-721-6177

Hey Josh,

I'm not a huge help but the advice you've received is great. It's so tough knowing what step to take. Although my kiddos are too young for "the talk," I remember all the thoughts I had when my health was bad. I often talked to God (in my head) and felt that I wasn't afraid to die, but I was afraid of what my family would go through if I did. 

My husband and I are in Houston right now through Monday. If you're still around and need anything – coffee delivered, a movie night, or two sets of ears to listen, please don't hesitate to reach out. 

Ashley

701-721-6177

Hey Josh,

I'm not a huge help but the advice you've received is great. It's so tough knowing what step to take. Although my kiddos are too young for "the talk," I remember all the thoughts I had when my health was bad. I often talked to God (in my head) and felt that I wasn't afraid to die, but I was afraid of what my family would go through if I did. 

My husband and I are in Houston right now through Monday. If you're still around and need anything – coffee delivered, a movie night, or two sets of ears to listen, please don't hesitate to reach out. 

Ashley

701-721-6177

Keep strong Josh, thinking of you and sending a big hug x

scooby x

Keep strong Josh, thinking of you and sending a big hug x

scooby x

Keep strong Josh, thinking of you and sending a big hug x

scooby x

Hi Josh, I don't know if I have given this link before but it features Dr. Omid Hamid speaking about future and current treatment for melanoma. The video is from Oct 2016 and is very positive about all the options that are opening up for us all. Best Wishes!!! Ed    https://www.youtube.com/watch?v=FtQJQhQE3dQ

Hi Josh, I don't know if I have given this link before but it features Dr. Omid Hamid speaking about future and current treatment for melanoma. The video is from Oct 2016 and is very positive about all the options that are opening up for us all. Best Wishes!!! Ed    https://www.youtube.com/watch?v=FtQJQhQE3dQ

Hi Josh, I don't know if I have given this link before but it features Dr. Omid Hamid speaking about future and current treatment for melanoma. The video is from Oct 2016 and is very positive about all the options that are opening up for us all. Best Wishes!!! Ed    https://www.youtube.com/watch?v=FtQJQhQE3dQ

Hi Josh-

Just reading this for the first time today…..I dont have specifics to offer but it looks like you have received a good bit of info and great suggestions from so many here.

I cant imagine how you are feeling, and know you've had SO many ups and too many downs….but as others have said, you are not out of options, so i am sending my VERY BEST thoughts that the next one will give you a good, and durable response.

Sending you all my best wishes…..

 

jenny

 

Hi Josh-

Just reading this for the first time today…..I dont have specifics to offer but it looks like you have received a good bit of info and great suggestions from so many here.

I cant imagine how you are feeling, and know you've had SO many ups and too many downs….but as others have said, you are not out of options, so i am sending my VERY BEST thoughts that the next one will give you a good, and durable response.

Sending you all my best wishes…..

 

jenny

 

Hi Josh-

Just reading this for the first time today…..I dont have specifics to offer but it looks like you have received a good bit of info and great suggestions from so many here.

I cant imagine how you are feeling, and know you've had SO many ups and too many downs….but as others have said, you are not out of options, so i am sending my VERY BEST thoughts that the next one will give you a good, and durable response.

Sending you all my best wishes…..

 

jenny

 

If you need ANYTHING while you are at MDA, my number is 248-207-1520/713-743-5775 and email is [email protected].  we work and live right by there and I have friends who are medical librarians there who can tap into the research services and doctors in the Medical Center if we need to get a network going to get you the answers you need.  Although, Ed, Bubbles, etc are pretty darn AMAZING and comprehensive in that department.  My husband and I are more than willing to help in any way possible.  We have a network here in Houston if you need anything.  

(totally get the fear for the kids, any parent understands that's THE biggest fear!  We don't want to hurt them in any way, but they obviously have a great dad which is the most important thing, so try to remember that!)

Hugs,

Jackie

If you need ANYTHING while you are at MDA, my number is 248-207-1520/713-743-5775 and email is [email protected].  we work and live right by there and I have friends who are medical librarians there who can tap into the research services and doctors in the Medical Center if we need to get a network going to get you the answers you need.  Although, Ed, Bubbles, etc are pretty darn AMAZING and comprehensive in that department.  My husband and I are more than willing to help in any way possible.  We have a network here in Houston if you need anything.  

(totally get the fear for the kids, any parent understands that's THE biggest fear!  We don't want to hurt them in any way, but they obviously have a great dad which is the most important thing, so try to remember that!)

Hugs,

Jackie

If you need ANYTHING while you are at MDA, my number is 248-207-1520/713-743-5775 and email is [email protected].  we work and live right by there and I have friends who are medical librarians there who can tap into the research services and doctors in the Medical Center if we need to get a network going to get you the answers you need.  Although, Ed, Bubbles, etc are pretty darn AMAZING and comprehensive in that department.  My husband and I are more than willing to help in any way possible.  We have a network here in Houston if you need anything.  

(totally get the fear for the kids, any parent understands that's THE biggest fear!  We don't want to hurt them in any way, but they obviously have a great dad which is the most important thing, so try to remember that!)

Hugs,

Jackie

Hey Josh, it sounds like you have a plan in place and you're off to make it happen tomorrow? It's been awhile since I visited these boards and while it's so good to hear from you I'm sorry it has to be about this.

Just wanted to send you my thoughts: I've had both gamma knife and cyber knife and prefer cybernife but either/or will deliver the first punch. The second punch I imagine would be ipi/nivo within a couple weeks since you haven't tried that combo yet. The one-two punch of SRS + radiation could be just what knocks down the beast for you!

You got this one Josh. After all you've been through, you'll get through this one too. 

Prayers & thoughts & BIG HUGS!!!

Hey Josh, it sounds like you have a plan in place and you're off to make it happen tomorrow? It's been awhile since I visited these boards and while it's so good to hear from you I'm sorry it has to be about this.

Just wanted to send you my thoughts: I've had both gamma knife and cyber knife and prefer cybernife but either/or will deliver the first punch. The second punch I imagine would be ipi/nivo within a couple weeks since you haven't tried that combo yet. The one-two punch of SRS + radiation could be just what knocks down the beast for you!

You got this one Josh. After all you've been through, you'll get through this one too. 

Prayers & thoughts & BIG HUGS!!!

Hey Josh, it sounds like you have a plan in place and you're off to make it happen tomorrow? It's been awhile since I visited these boards and while it's so good to hear from you I'm sorry it has to be about this.

Just wanted to send you my thoughts: I've had both gamma knife and cyber knife and prefer cybernife but either/or will deliver the first punch. The second punch I imagine would be ipi/nivo within a couple weeks since you haven't tried that combo yet. The one-two punch of SRS + radiation could be just what knocks down the beast for you!

You got this one Josh. After all you've been through, you'll get through this one too. 

Prayers & thoughts & BIG HUGS!!!

Josh,

we had a similar week unfortunately. Jake found out Wed he has 3 small brain mets on the right side. His upper spine now hurts pretty bad and is restricting his activity. How to stay positive?? I don't know, ask Jake. He is. He was hit hard and was very sad. But he still believes he can get well. Did his first dose of ipi and checking into radiation tomorrow. Josh, it's hell, it's lonely and I really hope prayers, love and knowing so many are doing the same day to day helps a little! I hope you can get ahead of this and Josh, you keep trying as long as you can endure!! 

❤️ Kerri

Josh,

we had a similar week unfortunately. Jake found out Wed he has 3 small brain mets on the right side. His upper spine now hurts pretty bad and is restricting his activity. How to stay positive?? I don't know, ask Jake. He is. He was hit hard and was very sad. But he still believes he can get well. Did his first dose of ipi and checking into radiation tomorrow. Josh, it's hell, it's lonely and I really hope prayers, love and knowing so many are doing the same day to day helps a little! I hope you can get ahead of this and Josh, you keep trying as long as you can endure!! 

❤️ Kerri

Josh,

we had a similar week unfortunately. Jake found out Wed he has 3 small brain mets on the right side. His upper spine now hurts pretty bad and is restricting his activity. How to stay positive?? I don't know, ask Jake. He is. He was hit hard and was very sad. But he still believes he can get well. Did his first dose of ipi and checking into radiation tomorrow. Josh, it's hell, it's lonely and I really hope prayers, love and knowing so many are doing the same day to day helps a little! I hope you can get ahead of this and Josh, you keep trying as long as you can endure!! 

❤️ Kerri