no hope

Though it may look hopeless now with that diagnosis, once you get to know some of the people posting on here you will see that there are many here who are surviving with brain mets, liver mets, etc. for many years. Ipi is no longer the only treatment, nivo and also a gamba knife radiation in combo with a drug for brain mets have gotten great results for many.  Don't lose hope but make sure you are seeing a doctor who practices at a Melanoma Center of Excellence as they are more up to date on all the latest clinical trials and treatments.  I am sure that many will chime in and give you hope.  Best wishes to you.

Though it may look hopeless now with that diagnosis, once you get to know some of the people posting on here you will see that there are many here who are surviving with brain mets, liver mets, etc. for many years. Ipi is no longer the only treatment, nivo and also a gamba knife radiation in combo with a drug for brain mets have gotten great results for many.  Don't lose hope but make sure you are seeing a doctor who practices at a Melanoma Center of Excellence as they are more up to date on all the latest clinical trials and treatments.  I am sure that many will chime in and give you hope.  Best wishes to you.

Though it may look hopeless now with that diagnosis, once you get to know some of the people posting on here you will see that there are many here who are surviving with brain mets, liver mets, etc. for many years. Ipi is no longer the only treatment, nivo and also a gamba knife radiation in combo with a drug for brain mets have gotten great results for many.  Don't lose hope but make sure you are seeing a doctor who practices at a Melanoma Center of Excellence as they are more up to date on all the latest clinical trials and treatments.  I am sure that many will chime in and give you hope.  Best wishes to you.

I am sorry for your despair and new diagnosis. It is a shock and you are not in for a fun time. I am more than 11 years past my initial melanoma diagnosis and 4 years Stage IV after brain, lung and tonsilar mets. And luckily…you are wrong! On November 3, 2013 I posted a review of an article on my blog…Melanoma patients alive and kickin 10 years after ipi!  There are lots of articles I've shared that demonstrate the synergistic effect when ipi is taken with stereotactic radiation to the brain, for mets. That might be something for you to look into. It is not an easy road. But there are a great number of us living our lives 'for years' after our Stage IV diagnosis. If we can do it…you can too!! Get to a melanoma specialist. There are even more drugs available than just ipi….which wasn't even on the market when I started this journey. There are dlinical trials. There are reasonable steps you can take. Arm yourself with the information you need.  Seek the specialists who can deal with melanoma. And….LIVE! You will find a great deal of support here.  Hang in there. I wish you my best. Celeste

I am sorry for your despair and new diagnosis. It is a shock and you are not in for a fun time. I am more than 11 years past my initial melanoma diagnosis and 4 years Stage IV after brain, lung and tonsilar mets. And luckily…you are wrong! On November 3, 2013 I posted a review of an article on my blog…Melanoma patients alive and kickin 10 years after ipi!  There are lots of articles I've shared that demonstrate the synergistic effect when ipi is taken with stereotactic radiation to the brain, for mets. That might be something for you to look into. It is not an easy road. But there are a great number of us living our lives 'for years' after our Stage IV diagnosis. If we can do it…you can too!! Get to a melanoma specialist. There are even more drugs available than just ipi….which wasn't even on the market when I started this journey. There are dlinical trials. There are reasonable steps you can take. Arm yourself with the information you need.  Seek the specialists who can deal with melanoma. And….LIVE! You will find a great deal of support here.  Hang in there. I wish you my best. Celeste

I am sorry for your despair and new diagnosis. It is a shock and you are not in for a fun time. I am more than 11 years past my initial melanoma diagnosis and 4 years Stage IV after brain, lung and tonsilar mets. And luckily…you are wrong! On November 3, 2013 I posted a review of an article on my blog…Melanoma patients alive and kickin 10 years after ipi!  There are lots of articles I've shared that demonstrate the synergistic effect when ipi is taken with stereotactic radiation to the brain, for mets. That might be something for you to look into. It is not an easy road. But there are a great number of us living our lives 'for years' after our Stage IV diagnosis. If we can do it…you can too!! Get to a melanoma specialist. There are even more drugs available than just ipi….which wasn't even on the market when I started this journey. There are dlinical trials. There are reasonable steps you can take. Arm yourself with the information you need.  Seek the specialists who can deal with melanoma. And….LIVE! You will find a great deal of support here.  Hang in there. I wish you my best. Celeste

Sorry to hear about your diagnosis.  Like Celeste and Momrn, I've been there.  This time between initial diagnosis and selecting a treatment is one of the toughest both psychologically and emotionally.  Easier said than done, but you need to keep moving forward and believing that success is possible.  Don't get too caught up in statistics.  For example, if the ipi response rate is 15-20 percent–how is that relevant for you if it works for you?  Go look at posts from JoshF who went from Stage IV diagnosis last summer to NED by February.  Why not you too?  Not suggesting that ipi or Josh's trial is the right option for you-just one example.  And, as others have said, you must get with the top melanoma specialist in your area, get tested for BRAF, etc. 

Sorry to hear about your diagnosis.  Like Celeste and Momrn, I've been there.  This time between initial diagnosis and selecting a treatment is one of the toughest both psychologically and emotionally.  Easier said than done, but you need to keep moving forward and believing that success is possible.  Don't get too caught up in statistics.  For example, if the ipi response rate is 15-20 percent–how is that relevant for you if it works for you?  Go look at posts from JoshF who went from Stage IV diagnosis last summer to NED by February.  Why not you too?  Not suggesting that ipi or Josh's trial is the right option for you-just one example.  And, as others have said, you must get with the top melanoma specialist in your area, get tested for BRAF, etc. 

Sorry to hear about your diagnosis.  Like Celeste and Momrn, I've been there.  This time between initial diagnosis and selecting a treatment is one of the toughest both psychologically and emotionally.  Easier said than done, but you need to keep moving forward and believing that success is possible.  Don't get too caught up in statistics.  For example, if the ipi response rate is 15-20 percent–how is that relevant for you if it works for you?  Go look at posts from JoshF who went from Stage IV diagnosis last summer to NED by February.  Why not you too?  Not suggesting that ipi or Josh's trial is the right option for you-just one example.  And, as others have said, you must get with the top melanoma specialist in your area, get tested for BRAF, etc. 

Sorry to hear about your diagnosis.  Like Celeste and Momrn, I've been there.  This time between initial diagnosis and selecting a treatment is one of the toughest both psychologically and emotionally.  Easier said than done, but you need to keep moving forward and believing that success is possible.  Don't get too caught up in statistics.  For example, if the ipi response rate is 15-20 percent–how is that relevant for you if it works for you?  Go look at posts from JoshF who went from Stage IV diagnosis last summer to NED by February.  Why not you too?  Not suggesting that ipi or Josh's trial is the right option for you-just one example.  And, as others have said, you must get with the top melanoma specialist in your area, get tested for BRAF, etc. 

Sorry to hear about your diagnosis.  Like Celeste and Momrn, I've been there.  This time between initial diagnosis and selecting a treatment is one of the toughest both psychologically and emotionally.  Easier said than done, but you need to keep moving forward and believing that success is possible.  Don't get too caught up in statistics.  For example, if the ipi response rate is 15-20 percent–how is that relevant for you if it works for you?  Go look at posts from JoshF who went from Stage IV diagnosis last summer to NED by February.  Why not you too?  Not suggesting that ipi or Josh's trial is the right option for you-just one example.  And, as others have said, you must get with the top melanoma specialist in your area, get tested for BRAF, etc. 

Sorry to hear about your diagnosis.  Like Celeste and Momrn, I've been there.  This time between initial diagnosis and selecting a treatment is one of the toughest both psychologically and emotionally.  Easier said than done, but you need to keep moving forward and believing that success is possible.  Don't get too caught up in statistics.  For example, if the ipi response rate is 15-20 percent–how is that relevant for you if it works for you?  Go look at posts from JoshF who went from Stage IV diagnosis last summer to NED by February.  Why not you too?  Not suggesting that ipi or Josh's trial is the right option for you-just one example.  And, as others have said, you must get with the top melanoma specialist in your area, get tested for BRAF, etc. 

Sorry to hear about your diagnosis.  Like Celeste and Momrn, I've been there.  This time between initial diagnosis and selecting a treatment is one of the toughest both psychologically and emotionally.  Easier said than done, but you need to keep moving forward and believing that success is possible.  Don't get too caught up in statistics.  For example, if the ipi response rate is 15-20 percent–how is that relevant for you if it works for you?  Go look at posts from JoshF who went from Stage IV diagnosis last summer to NED by February.  Why not you too?  Not suggesting that ipi or Josh's trial is the right option for you-just one example.  And, as others have said, you must get with the top melanoma specialist in your area, get tested for BRAF, etc. 

Sorry to hear about your diagnosis.  Like Celeste and Momrn, I've been there.  This time between initial diagnosis and selecting a treatment is one of the toughest both psychologically and emotionally.  Easier said than done, but you need to keep moving forward and believing that success is possible.  Don't get too caught up in statistics.  For example, if the ipi response rate is 15-20 percent–how is that relevant for you if it works for you?  Go look at posts from JoshF who went from Stage IV diagnosis last summer to NED by February.  Why not you too?  Not suggesting that ipi or Josh's trial is the right option for you-just one example.  And, as others have said, you must get with the top melanoma specialist in your area, get tested for BRAF, etc. 

Sorry to hear about your diagnosis.  Like Celeste and Momrn, I've been there.  This time between initial diagnosis and selecting a treatment is one of the toughest both psychologically and emotionally.  Easier said than done, but you need to keep moving forward and believing that success is possible.  Don't get too caught up in statistics.  For example, if the ipi response rate is 15-20 percent–how is that relevant for you if it works for you?  Go look at posts from JoshF who went from Stage IV diagnosis last summer to NED by February.  Why not you too?  Not suggesting that ipi or Josh's trial is the right option for you-just one example.  And, as others have said, you must get with the top melanoma specialist in your area, get tested for BRAF, etc. 

I hope that you continue to read the posts on this forum– read people's profiles and read their older posts, too (click on underlined names to view the profiles and/or old posts). You will quickly find many, many people who are living longer and with better quallity of life now than there were even 3 or 4 years ago.

That is because new melanoma treatments are only now coming on the market. Yervoy (ipi) was only FDA approved 3 years ago; Zelboraf (vemurafenib) more recently than that. Another new treatment, MK-3475 (anti-PD-1) has just been submitted for FDA approval and there are many new clinical trials going on now that show great promise.

Since these are newly-approved treatments, we CAN'T have stastics that say "complete cure" or even "10 year survival"– these drugs have not been on the market for 10 years yet. We are seeing more and more long-term survival data from people who got Yervoy or Zelboraf or MK-3475 during clinical trials and that is very encouraging.

So stop reading the survival data on the Internet– most of it is out of date. The people on this forum will help you every step of the way with information, experience and support. Make up your mind that you are going to find and take advantage of these promising new treatments so that YOU will eventually be counted among the "cured".

I hope that you continue to read the posts on this forum– read people's profiles and read their older posts, too (click on underlined names to view the profiles and/or old posts). You will quickly find many, many people who are living longer and with better quallity of life now than there were even 3 or 4 years ago.

That is because new melanoma treatments are only now coming on the market. Yervoy (ipi) was only FDA approved 3 years ago; Zelboraf (vemurafenib) more recently than that. Another new treatment, MK-3475 (anti-PD-1) has just been submitted for FDA approval and there are many new clinical trials going on now that show great promise.

Since these are newly-approved treatments, we CAN'T have stastics that say "complete cure" or even "10 year survival"– these drugs have not been on the market for 10 years yet. We are seeing more and more long-term survival data from people who got Yervoy or Zelboraf or MK-3475 during clinical trials and that is very encouraging.

So stop reading the survival data on the Internet– most of it is out of date. The people on this forum will help you every step of the way with information, experience and support. Make up your mind that you are going to find and take advantage of these promising new treatments so that YOU will eventually be counted among the "cured".

I hope that you continue to read the posts on this forum– read people's profiles and read their older posts, too (click on underlined names to view the profiles and/or old posts). You will quickly find many, many people who are living longer and with better quallity of life now than there were even 3 or 4 years ago.

That is because new melanoma treatments are only now coming on the market. Yervoy (ipi) was only FDA approved 3 years ago; Zelboraf (vemurafenib) more recently than that. Another new treatment, MK-3475 (anti-PD-1) has just been submitted for FDA approval and there are many new clinical trials going on now that show great promise.

Since these are newly-approved treatments, we CAN'T have stastics that say "complete cure" or even "10 year survival"– these drugs have not been on the market for 10 years yet. We are seeing more and more long-term survival data from people who got Yervoy or Zelboraf or MK-3475 during clinical trials and that is very encouraging.

So stop reading the survival data on the Internet– most of it is out of date. The people on this forum will help you every step of the way with information, experience and support. Make up your mind that you are going to find and take advantage of these promising new treatments so that YOU will eventually be counted among the "cured".

In my opinion you should listen to the folks that have replied that have beat this. There is hope for you, me and the rest. If I didn't believe that I would have already given up. I'm still here fighting as hard as I can.

As you see from them there are drugs that last years.

Also in my opinion you should get smart with your treatments. ipi is the tip of the iceberg that will break this mel fortress but now there are better meds. Various brands of pd1, pdl and dozens of others are in clinical trials. My aunt's friend is in his 70s and has been in remission from ipi going on 4 years now.

Also are the braf and other targeted meds. zel, taf/mek plus many others in clinical trials. My local onc has 1 patient on zel for over 2 years and is NED.

What I believe is someone said you only need the 1 med that works for you and you will beat this.

Good luck to you.

In my opinion you should listen to the folks that have replied that have beat this. There is hope for you, me and the rest. If I didn't believe that I would have already given up. I'm still here fighting as hard as I can.

As you see from them there are drugs that last years.

Also in my opinion you should get smart with your treatments. ipi is the tip of the iceberg that will break this mel fortress but now there are better meds. Various brands of pd1, pdl and dozens of others are in clinical trials. My aunt's friend is in his 70s and has been in remission from ipi going on 4 years now.

Also are the braf and other targeted meds. zel, taf/mek plus many others in clinical trials. My local onc has 1 patient on zel for over 2 years and is NED.

What I believe is someone said you only need the 1 med that works for you and you will beat this.

Good luck to you.

In my opinion you should listen to the folks that have replied that have beat this. There is hope for you, me and the rest. If I didn't believe that I would have already given up. I'm still here fighting as hard as I can.

As you see from them there are drugs that last years.

Also in my opinion you should get smart with your treatments. ipi is the tip of the iceberg that will break this mel fortress but now there are better meds. Various brands of pd1, pdl and dozens of others are in clinical trials. My aunt's friend is in his 70s and has been in remission from ipi going on 4 years now.

Also are the braf and other targeted meds. zel, taf/mek plus many others in clinical trials. My local onc has 1 patient on zel for over 2 years and is NED.

What I believe is someone said you only need the 1 med that works for you and you will beat this.

Good luck to you.

The main thing you have going for you is you so you have to be positive and stay positive, the studies are ok but those do not and can not take into account the will of the people this blog is the best place for support help and research. Trust me someone out there has been down the same path.  I have Stage V melanoma I have been threw IPI and a cliencal trial at UCLA for pd1 looked good at first but then started to fall off  looking into my next two option now. 

But support from this site my wife my family and friend all plays a prat in the will to over come. 

The main thing you have going for you is you so you have to be positive and stay positive, the studies are ok but those do not and can not take into account the will of the people this blog is the best place for support help and research. Trust me someone out there has been down the same path.  I have Stage V melanoma I have been threw IPI and a cliencal trial at UCLA for pd1 looked good at first but then started to fall off  looking into my next two option now. 

But support from this site my wife my family and friend all plays a prat in the will to over come. 

The main thing you have going for you is you so you have to be positive and stay positive, the studies are ok but those do not and can not take into account the will of the people this blog is the best place for support help and research. Trust me someone out there has been down the same path.  I have Stage V melanoma I have been threw IPI and a cliencal trial at UCLA for pd1 looked good at first but then started to fall off  looking into my next two option now. 

But support from this site my wife my family and friend all plays a prat in the will to over come.