lrkg1234 Lisa…how did Scott’s appt go at Vanderbilt?

Hi Tina,

Bad news. 

Scott had 6 new brain mets and was unable to go to Vanderbilt for the trial.  They can't do anything else with the brain mets since he's had SRS twice and WBR once.  He has already had Temodar with the IPI.  No more options.

They suggested he call hospice and just focus on quality of life and pain management.  He took it as well as one can.  We have not done anything yet.  We are sort of in hibernation.

I will be thinking about you and hope that your scan is clean on the 17th.   This trial is a great opportunity. 

Please keep me posted. 

Lisa

Hi Tina,

Bad news. 

Scott had 6 new brain mets and was unable to go to Vanderbilt for the trial.  They can't do anything else with the brain mets since he's had SRS twice and WBR once.  He has already had Temodar with the IPI.  No more options.

They suggested he call hospice and just focus on quality of life and pain management.  He took it as well as one can.  We have not done anything yet.  We are sort of in hibernation.

I will be thinking about you and hope that your scan is clean on the 17th.   This trial is a great opportunity. 

Please keep me posted. 

Lisa

Hi Tina,

Bad news. 

Scott had 6 new brain mets and was unable to go to Vanderbilt for the trial.  They can't do anything else with the brain mets since he's had SRS twice and WBR once.  He has already had Temodar with the IPI.  No more options.

They suggested he call hospice and just focus on quality of life and pain management.  He took it as well as one can.  We have not done anything yet.  We are sort of in hibernation.

I will be thinking about you and hope that your scan is clean on the 17th.   This trial is a great opportunity. 

Please keep me posted. 

Lisa

Lisa,

Please seek a second opinion.  Are you seeing a melanoma specialist?  I was told we can do SRS or Gamma knife as much as needed.  Has he been tested for BRAF?  Have him re-tested.  My point is, I believe there are options instead of giving up.  I have had WBR, SRS, and now I'm going in for Gamma Knife.  

Please don't give up!!

All my best,

Denise

I agree.  Do not give up!  Seek another opinion.  Have you called one of the Cancer Centers?  Have you considered going out of the country?  Miracles happen but you might need to seek them out.  I wish you the best.

I agree.  Do not give up!  Seek another opinion.  Have you called one of the Cancer Centers?  Have you considered going out of the country?  Miracles happen but you might need to seek them out.  I wish you the best.

I agree.  Do not give up!  Seek another opinion.  Have you called one of the Cancer Centers?  Have you considered going out of the country?  Miracles happen but you might need to seek them out.  I wish you the best.

Lisa, please go to this link, I hope it works. The fellow who posted it, Jonathan, has been through hell and back, and it sounds like this new trial is working for him. So far, it’s only at Sarah Cannon and 2 calif. hospitals. If you can’t use the link, I’ll send you the trial number.
I have also heard from an excellent neurosurgeon that you can have SRS many times–I really hope you’ll go for a second opinion–
Also, I was BRAF- in 2011 (false negative) and re-tested positive late in 2012.
All the best,
Karen

Lisa, please go to this link, I hope it works. The fellow who posted it, Jonathan, has been through hell and back, and it sounds like this new trial is working for him. So far, it’s only at Sarah Cannon and 2 calif. hospitals. If you can’t use the link, I’ll send you the trial number.
I have also heard from an excellent neurosurgeon that you can have SRS many times–I really hope you’ll go for a second opinion–
Also, I was BRAF- in 2011 (false negative) and re-tested positive late in 2012.
All the best,
Karen

My husband had gamma knife surgery 5 times. Once for 7 then for 6 then he developed 32 brains mets and had it done 3 more times and it worked. Brain did become stable awhile but 7 more came and he was just to weak to do it again. Dont ever give up. Lynn has passed but tje brsin mets did not cause his death. Keep fighting if you need to talk please email me. The adress is [email protected]

My husband had gamma knife surgery 5 times. Once for 7 then for 6 then he developed 32 brains mets and had it done 3 more times and it worked. Brain did become stable awhile but 7 more came and he was just to weak to do it again. Dont ever give up. Lynn has passed but tje brsin mets did not cause his death. Keep fighting if you need to talk please email me. The adress is [email protected]

My husband had gamma knife surgery 5 times. Once for 7 then for 6 then he developed 32 brains mets and had it done 3 more times and it worked. Brain did become stable awhile but 7 more came and he was just to weak to do it again. Dont ever give up. Lynn has passed but tje brsin mets did not cause his death. Keep fighting if you need to talk please email me. The adress is [email protected]

My husband had gamma knife surgery 5 times. Once for 7 then for 6 then he developed 32 brains mets and had it done 3 more times and it worked. Brain did become stable awhile but 7 more came and he was just to weak to do it again. Dont ever give up. Lynn has passed but tje brsin mets did not cause his death. Keep fighting if you need to talk please email me. The adress is [email protected]

My husband had gamma knife surgery 5 times. Once for 7 then for 6 then he developed 32 brains mets and had it done 3 more times and it worked. Brain did become stable awhile but 7 more came and he was just to weak to do it again. Dont ever give up. Lynn has passed but tje brsin mets did not cause his death. Keep fighting if you need to talk please email me. The adress is [email protected]

My husband had gamma knife surgery 5 times. Once for 7 then for 6 then he developed 32 brains mets and had it done 3 more times and it worked. Brain did become stable awhile but 7 more came and he was just to weak to do it again. Dont ever give up. Lynn has passed but tje brsin mets did not cause his death. Keep fighting if you need to talk please email me. The adress is [email protected]

Lisa this is really weighing heavy on my heart!!  You still have MANY options, Please do some research and fight!!  He has not done Darcarbazine, Mek inhibitor, Braf inhibitor (be tested again), IL2 (Bio Chemo) More gamma knife, which he can absolutley get.  I feel like I want to shake you and say NO!!!  Don't give up like this your still in this fight!!

My doctor who is just a regular oncologist did this same thing to me 2 weeks ago!!  I talked to my specialist and I'm moving forward with a plan to get my brain stable and get into a trial.  I hope you just don't want to give up!!  I'm gonna post a topic for you to hear from others.  I hope you don't mind, I just need you to know it's not over!!

I am so sorry. You have both fought so hard. Only you and Scott can know if its still time to fight or not.

Each one of us has a unique, but agonizing journey through the hellish melanoma quagmire. I will pray for you to have the strength to enjoy each day and peace and knowledge to move forward with whatever is the right path for you.

Amy

I am so sorry. You have both fought so hard. Only you and Scott can know if its still time to fight or not.

Each one of us has a unique, but agonizing journey through the hellish melanoma quagmire. I will pray for you to have the strength to enjoy each day and peace and knowledge to move forward with whatever is the right path for you.

Amy

I am so sorry. You have both fought so hard. Only you and Scott can know if its still time to fight or not.

Each one of us has a unique, but agonizing journey through the hellish melanoma quagmire. I will pray for you to have the strength to enjoy each day and peace and knowledge to move forward with whatever is the right path for you.

Amy

Thanks everyone. Scott has given it his best with IL2, IPI, Temodar, WBR, 2 rounds of SRS and a Dasatinib trial. We have been to MD Anderson, Dana Farber, Johns Hopkins, IU health and Vanderbilt.  All very smart people, only so many options.

He is so tired now and his body is just a mine field of tumors that are popping up through the skin. Too many mets to count on the inside, liver, lung… you name it. He has 13 brain tumors total.  It's really reached a point where it seems like the best thing to do is focus on enjoying what life is left. 

He is a huge fighter and it was hard to hear that there is nothing else to do.  I'm sure he is more depressed than he shows me. 

This disease really sucks.  I've never seen or heard of anything like it.    I will miss him unbelievably when he goes, but I will be so happy to know that he is free of this body and the pain that he has endured so long.  My time will be hard.  But he will be done with this mess and feeling complete.

He is still very much with it and alert, great sense of humor, smart.  Totally mobile. He has some good days and is having nice times enjoying family, watching movies, hanging out with the dog & cat. He's not gone yet.  I think if he's relaxed, happy and pain free he might even be around longer than he would if he's submitted to more torture. 

It's been a great help here with all the advice and education.  I would not have known what to do without the support. 

I wish everyone the best in the fight. Big advances these days.  Getting melanoma this year is much better than getting it last year.  Every advance leads to more time. 

God Bless, Lisa

Thanks everyone. Scott has given it his best with IL2, IPI, Temodar, WBR, 2 rounds of SRS and a Dasatinib trial. We have been to MD Anderson, Dana Farber, Johns Hopkins, IU health and Vanderbilt.  All very smart people, only so many options.

He is so tired now and his body is just a mine field of tumors that are popping up through the skin. Too many mets to count on the inside, liver, lung… you name it. He has 13 brain tumors total.  It's really reached a point where it seems like the best thing to do is focus on enjoying what life is left. 

He is a huge fighter and it was hard to hear that there is nothing else to do.  I'm sure he is more depressed than he shows me. 

This disease really sucks.  I've never seen or heard of anything like it.    I will miss him unbelievably when he goes, but I will be so happy to know that he is free of this body and the pain that he has endured so long.  My time will be hard.  But he will be done with this mess and feeling complete.

He is still very much with it and alert, great sense of humor, smart.  Totally mobile. He has some good days and is having nice times enjoying family, watching movies, hanging out with the dog & cat. He's not gone yet.  I think if he's relaxed, happy and pain free he might even be around longer than he would if he's submitted to more torture. 

It's been a great help here with all the advice and education.  I would not have known what to do without the support. 

I wish everyone the best in the fight. Big advances these days.  Getting melanoma this year is much better than getting it last year.  Every advance leads to more time. 

God Bless, Lisa

Thanks everyone. Scott has given it his best with IL2, IPI, Temodar, WBR, 2 rounds of SRS and a Dasatinib trial. We have been to MD Anderson, Dana Farber, Johns Hopkins, IU health and Vanderbilt.  All very smart people, only so many options.

He is so tired now and his body is just a mine field of tumors that are popping up through the skin. Too many mets to count on the inside, liver, lung… you name it. He has 13 brain tumors total.  It's really reached a point where it seems like the best thing to do is focus on enjoying what life is left. 

He is a huge fighter and it was hard to hear that there is nothing else to do.  I'm sure he is more depressed than he shows me. 

This disease really sucks.  I've never seen or heard of anything like it.    I will miss him unbelievably when he goes, but I will be so happy to know that he is free of this body and the pain that he has endured so long.  My time will be hard.  But he will be done with this mess and feeling complete.

He is still very much with it and alert, great sense of humor, smart.  Totally mobile. He has some good days and is having nice times enjoying family, watching movies, hanging out with the dog & cat. He's not gone yet.  I think if he's relaxed, happy and pain free he might even be around longer than he would if he's submitted to more torture. 

It's been a great help here with all the advice and education.  I would not have known what to do without the support. 

I wish everyone the best in the fight. Big advances these days.  Getting melanoma this year is much better than getting it last year.  Every advance leads to more time. 

God Bless, Lisa

Hi lIsa,

I too want to apologize, I thought maybe you thought you were out of options and I didn't know the whole story.  I am so sorry that your left with this decision.  My heart goes out to you both.  

I know that I may be faced with this same decision shortly and I completely understand.  

Again I'm sorry, I hope I didn't upset you.

All my best to you and Scott.

Denise

Dear Lisa,

I am so sorry you have reached this point in your journey with melanoma.  Your courage and strength are examples of your fighting spirit and positive mindset to fight with all you've got.  You've done your best and that will be your comfort and peace in the days ahead.  One thing I've learned in this journey is there are no easy answers or choices and we must all give it our best shot and hold on to the belief that we will survive, without that hope, it would be impossible to overcome and you and Scott have demonstrated this to the highest degree.  All must arrive at this place in their earthly life and all will know when their time has come.  God Bless you both and may your days be filled with overflowing love, gratitude, peace and understanding as you continue living every moment of every day.

Swanee 

Lisa,

Please seek a second opinion.  Are you seeing a melanoma specialist?  I was told we can do SRS or Gamma knife as much as needed.  Has he been tested for BRAF?  Have him re-tested.  My point is, I believe there are options instead of giving up.  I have had WBR, SRS, and now I'm going in for Gamma Knife.  

Please don't give up!!

All my best,

Denise

Lisa,

Please seek a second opinion.  Are you seeing a melanoma specialist?  I was told we can do SRS or Gamma knife as much as needed.  Has he been tested for BRAF?  Have him re-tested.  My point is, I believe there are options instead of giving up.  I have had WBR, SRS, and now I'm going in for Gamma Knife.  

Please don't give up!!

All my best,

Denise

Lisa this is really weighing heavy on my heart!!  You still have MANY options, Please do some research and fight!!  He has not done Darcarbazine, Mek inhibitor, Braf inhibitor (be tested again), IL2 (Bio Chemo) More gamma knife, which he can absolutley get.  I feel like I want to shake you and say NO!!!  Don't give up like this your still in this fight!!

My doctor who is just a regular oncologist did this same thing to me 2 weeks ago!!  I talked to my specialist and I'm moving forward with a plan to get my brain stable and get into a trial.  I hope you just don't want to give up!!  I'm gonna post a topic for you to hear from others.  I hope you don't mind, I just need you to know it's not over!!

Lisa this is really weighing heavy on my heart!!  You still have MANY options, Please do some research and fight!!  He has not done Darcarbazine, Mek inhibitor, Braf inhibitor (be tested again), IL2 (Bio Chemo) More gamma knife, which he can absolutley get.  I feel like I want to shake you and say NO!!!  Don't give up like this your still in this fight!!

My doctor who is just a regular oncologist did this same thing to me 2 weeks ago!!  I talked to my specialist and I'm moving forward with a plan to get my brain stable and get into a trial.  I hope you just don't want to give up!!  I'm gonna post a topic for you to hear from others.  I hope you don't mind, I just need you to know it's not over!!

Hi, Lisa-

I'm sure you know that everyone who says, "Don't give up! Fight! Fight! Fight!" means well. But I also know from personal experience that things can (and for most of us they usually do) reach a point where the kindest and most loving thing is to focus on pain management and quality of life. Is there ALWAYS some other treatment you could try? Probably. Is the likelyhood of success and the misery of the side effects and strain of the constant doctors' appointments always worth it? Probably not. 

Scott  has mucosal melanoma, which is in some ways very different from cutaneous melanoma. He has been through many different treatments already– among them some of the best (and sometimes the toughest) treatments available these days. You have been an outstanding advocate for Scott. Together, you really have fought the good fight and kept the damn beast at bay for almost a year. That is an astounding success, not a failure!  

If Scott wants to try another treatment, I say, "Go for it!" But if he is ready to stop, I say, "OK, stop." Continuing treatment or not is a very personal decision and is highly dependent on the particulars of each case. Your love and committment to Scott show clearly in your every post. You and Scott have to do what is best for you. However you decide, I wish you both peace and love and strength.

Hi, Lisa-

I'm sure you know that everyone who says, "Don't give up! Fight! Fight! Fight!" means well. But I also know from personal experience that things can (and for most of us they usually do) reach a point where the kindest and most loving thing is to focus on pain management and quality of life. Is there ALWAYS some other treatment you could try? Probably. Is the likelyhood of success and the misery of the side effects and strain of the constant doctors' appointments always worth it? Probably not. 

Scott  has mucosal melanoma, which is in some ways very different from cutaneous melanoma. He has been through many different treatments already– among them some of the best (and sometimes the toughest) treatments available these days. You have been an outstanding advocate for Scott. Together, you really have fought the good fight and kept the damn beast at bay for almost a year. That is an astounding success, not a failure!  

If Scott wants to try another treatment, I say, "Go for it!" But if he is ready to stop, I say, "OK, stop." Continuing treatment or not is a very personal decision and is highly dependent on the particulars of each case. Your love and committment to Scott show clearly in your every post. You and Scott have to do what is best for you. However you decide, I wish you both peace and love and strength.

Hi, Lisa-

I'm sure you know that everyone who says, "Don't give up! Fight! Fight! Fight!" means well. But I also know from personal experience that things can (and for most of us they usually do) reach a point where the kindest and most loving thing is to focus on pain management and quality of life. Is there ALWAYS some other treatment you could try? Probably. Is the likelyhood of success and the misery of the side effects and strain of the constant doctors' appointments always worth it? Probably not. 

Scott  has mucosal melanoma, which is in some ways very different from cutaneous melanoma. He has been through many different treatments already– among them some of the best (and sometimes the toughest) treatments available these days. You have been an outstanding advocate for Scott. Together, you really have fought the good fight and kept the damn beast at bay for almost a year. That is an astounding success, not a failure!  

If Scott wants to try another treatment, I say, "Go for it!" But if he is ready to stop, I say, "OK, stop." Continuing treatment or not is a very personal decision and is highly dependent on the particulars of each case. Your love and committment to Scott show clearly in your every post. You and Scott have to do what is best for you. However you decide, I wish you both peace and love and strength.

Lisa, I sent you a private message.  If you don't get the email, check your "Junk Mail" folder.

Lisa, I sent you a private message.  If you don't get the email, check your "Junk Mail" folder.

Lisa, I sent you a private message.  If you don't get the email, check your "Junk Mail" folder.

Lisa, please go to this link, I hope it works. The fellow who posted it, Jonathan, has been through hell and back, and it sounds like this new trial is working for him. So far, it’s only at Sarah Cannon and 2 calif. hospitals. If you can’t use the link, I’ll send you the trial number.
I have also heard from an excellent neurosurgeon that you can have SRS many times–I really hope you’ll go for a second opinion–
Also, I was BRAF- in 2011 (false negative) and re-tested positive late in 2012.
All the best,
Karen

Lisa, please go to this link, I hope it works. The fellow who posted it, Jonathan, has been through hell and back, and it sounds like this new trial is working for him. So far, it’s only at Sarah Cannon and 2 calif. hospitals. If you can’t use the link, I’ll send you the trial number.
I have also heard from an excellent neurosurgeon that you can have SRS many times–I really hope you’ll go for a second opinion–
Also, I was BRAF- in 2011 (false negative) and re-tested positive late in 2012.
All the best,
Karen

Lisa, please go to this link, I hope it works. The fellow who posted it, Jonathan, has been through hell and back, and it sounds like this new trial is working for him. So far, it’s only at Sarah Cannon and 2 calif. hospitals. If you can’t use the link, I’ll send you the trial number.
I have also heard from an excellent neurosurgeon that you can have SRS many times–I really hope you’ll go for a second opinion–
Also, I was BRAF- in 2011 (false negative) and re-tested positive late in 2012.
All the best,
Karen

Lisa, please go to this link, I hope it works. The fellow who posted it, Jonathan, has been through hell and back, and it sounds like this new trial is working for him. So far, it’s only at Sarah Cannon and 2 calif. hospitals. If you can’t use the link, I’ll send you the trial number.
I have also heard from an excellent neurosurgeon that you can have SRS many times–I really hope you’ll go for a second opinion–
Also, I was BRAF- in 2011 (false negative) and re-tested positive late in 2012.
All the best,
Karen

Hi lIsa,

I too want to apologize, I thought maybe you thought you were out of options and I didn't know the whole story.  I am so sorry that your left with this decision.  My heart goes out to you both.  

I know that I may be faced with this same decision shortly and I completely understand.  

Again I'm sorry, I hope I didn't upset you.

All my best to you and Scott.

Denise

Hi lIsa,

I too want to apologize, I thought maybe you thought you were out of options and I didn't know the whole story.  I am so sorry that your left with this decision.  My heart goes out to you both.  

I know that I may be faced with this same decision shortly and I completely understand.  

Again I'm sorry, I hope I didn't upset you.

All my best to you and Scott.

Denise

Dear Lisa,

I am so sorry you have reached this point in your journey with melanoma.  Your courage and strength are examples of your fighting spirit and positive mindset to fight with all you've got.  You've done your best and that will be your comfort and peace in the days ahead.  One thing I've learned in this journey is there are no easy answers or choices and we must all give it our best shot and hold on to the belief that we will survive, without that hope, it would be impossible to overcome and you and Scott have demonstrated this to the highest degree.  All must arrive at this place in their earthly life and all will know when their time has come.  God Bless you both and may your days be filled with overflowing love, gratitude, peace and understanding as you continue living every moment of every day.

Swanee 

Dear Lisa,

I am so sorry you have reached this point in your journey with melanoma.  Your courage and strength are examples of your fighting spirit and positive mindset to fight with all you've got.  You've done your best and that will be your comfort and peace in the days ahead.  One thing I've learned in this journey is there are no easy answers or choices and we must all give it our best shot and hold on to the belief that we will survive, without that hope, it would be impossible to overcome and you and Scott have demonstrated this to the highest degree.  All must arrive at this place in their earthly life and all will know when their time has come.  God Bless you both and may your days be filled with overflowing love, gratitude, peace and understanding as you continue living every moment of every day.

Swanee