› Forums › General Melanoma Community › need info on stage 4 metastisis
- This topic has 33 replies, 8 voices, and was last updated 10 years, 3 months ago by UrsulaZ.
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- January 23, 2014 at 9:51 pm
Hi
Cand anyone direct me to the latest statistics on stage 4 melanoma ?
Things like life expectancy or survival rates ?
I am not quite sure what I am in for with this.
It has metastisized to spine and a spot on pancreas. Original spot on abdpmen 1 year ago which was an ulcersted mole the size of 2 thumbnails. The sentinel node biopsy was clean back then.
Only one spot in bone.
I would like to see what I am up against.
Thanks
shane
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- January 23, 2014 at 10:31 pm
Sorry, Shane, but you're about 3 years too late. Up until about 3 years ago, the prognosis for Stage IV was very bleak because melanoma was notoriously resistant to all types of chemo and radiation.
Happily, the picture has changed markedly since then. There are several new treatments available now– some recently FDA approved (Zelboraf, Yervoy, Taflinar and Mekinist) and several more in the clinical trials pipeline. In addition, the availability of these new treatments has breathed new life into some of the older treatments like interferon, IL-2 and radiation because sometimes a combination of a new and an old drug works quite well for some people.
So any statistics or prognoses your read on the internet about melanoma are likely to be out of date and misleading– don't read them. Come here instead.
The way oncologists and patients are handling melanoma now is to try the most promising treatment (either a prescription or a clinical trial) and see how it goes. If it works, stick with it as long as you can. If it doesn't work or it stops working, try another treatment or another clinical trial. Many, many Stage IV patients are now living longer and longer and some of those who were involved in the early clinical trials of these new drugs are 5 or 10 years post diagnosis. So you have good reason to be optimistic.
Now that you are Stage IV, the most important thing is to get yourself to an NCI designated melanoma specialty center. If there is one near you, make them your primary melanoma center. If there isn't one near you, at least go to one for a consult. Things are changing so fast in the field of melanoma and new treatments are being introduced so often that most general oncolgists simply can't keep up with it all.
It would be best if you complete a profile here telling us about your original diagnosis and path report (Breslow depth, mitotic index, ulceration, etc) and where you live. Then we can refer to that in the future to give you the best advice we can.
Keep up a positive mental attitude and never take "No" for an answer!
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- January 23, 2014 at 10:31 pm
Sorry, Shane, but you're about 3 years too late. Up until about 3 years ago, the prognosis for Stage IV was very bleak because melanoma was notoriously resistant to all types of chemo and radiation.
Happily, the picture has changed markedly since then. There are several new treatments available now– some recently FDA approved (Zelboraf, Yervoy, Taflinar and Mekinist) and several more in the clinical trials pipeline. In addition, the availability of these new treatments has breathed new life into some of the older treatments like interferon, IL-2 and radiation because sometimes a combination of a new and an old drug works quite well for some people.
So any statistics or prognoses your read on the internet about melanoma are likely to be out of date and misleading– don't read them. Come here instead.
The way oncologists and patients are handling melanoma now is to try the most promising treatment (either a prescription or a clinical trial) and see how it goes. If it works, stick with it as long as you can. If it doesn't work or it stops working, try another treatment or another clinical trial. Many, many Stage IV patients are now living longer and longer and some of those who were involved in the early clinical trials of these new drugs are 5 or 10 years post diagnosis. So you have good reason to be optimistic.
Now that you are Stage IV, the most important thing is to get yourself to an NCI designated melanoma specialty center. If there is one near you, make them your primary melanoma center. If there isn't one near you, at least go to one for a consult. Things are changing so fast in the field of melanoma and new treatments are being introduced so often that most general oncolgists simply can't keep up with it all.
It would be best if you complete a profile here telling us about your original diagnosis and path report (Breslow depth, mitotic index, ulceration, etc) and where you live. Then we can refer to that in the future to give you the best advice we can.
Keep up a positive mental attitude and never take "No" for an answer!
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- January 23, 2014 at 10:31 pm
Sorry, Shane, but you're about 3 years too late. Up until about 3 years ago, the prognosis for Stage IV was very bleak because melanoma was notoriously resistant to all types of chemo and radiation.
Happily, the picture has changed markedly since then. There are several new treatments available now– some recently FDA approved (Zelboraf, Yervoy, Taflinar and Mekinist) and several more in the clinical trials pipeline. In addition, the availability of these new treatments has breathed new life into some of the older treatments like interferon, IL-2 and radiation because sometimes a combination of a new and an old drug works quite well for some people.
So any statistics or prognoses your read on the internet about melanoma are likely to be out of date and misleading– don't read them. Come here instead.
The way oncologists and patients are handling melanoma now is to try the most promising treatment (either a prescription or a clinical trial) and see how it goes. If it works, stick with it as long as you can. If it doesn't work or it stops working, try another treatment or another clinical trial. Many, many Stage IV patients are now living longer and longer and some of those who were involved in the early clinical trials of these new drugs are 5 or 10 years post diagnosis. So you have good reason to be optimistic.
Now that you are Stage IV, the most important thing is to get yourself to an NCI designated melanoma specialty center. If there is one near you, make them your primary melanoma center. If there isn't one near you, at least go to one for a consult. Things are changing so fast in the field of melanoma and new treatments are being introduced so often that most general oncolgists simply can't keep up with it all.
It would be best if you complete a profile here telling us about your original diagnosis and path report (Breslow depth, mitotic index, ulceration, etc) and where you live. Then we can refer to that in the future to give you the best advice we can.
Keep up a positive mental attitude and never take "No" for an answer!
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- January 24, 2014 at 1:46 am
Shane, I do not think the statistics have caught up with the recent advances in treatments available. Hopefully you are seeing a melanoma specialist who can be sure to tell you the best next step. I have been stage IV since 2005, and marvel to see the changes in treatments available and the real possibilities for lasting responses now. "back in the day" there was just not much available that had hope for most people. You are in for a battle, no doubt.. but, one with hope!
Tina
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- January 24, 2014 at 1:46 am
Shane, I do not think the statistics have caught up with the recent advances in treatments available. Hopefully you are seeing a melanoma specialist who can be sure to tell you the best next step. I have been stage IV since 2005, and marvel to see the changes in treatments available and the real possibilities for lasting responses now. "back in the day" there was just not much available that had hope for most people. You are in for a battle, no doubt.. but, one with hope!
Tina
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- January 24, 2014 at 1:46 am
Shane, I do not think the statistics have caught up with the recent advances in treatments available. Hopefully you are seeing a melanoma specialist who can be sure to tell you the best next step. I have been stage IV since 2005, and marvel to see the changes in treatments available and the real possibilities for lasting responses now. "back in the day" there was just not much available that had hope for most people. You are in for a battle, no doubt.. but, one with hope!
Tina
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- January 24, 2014 at 3:15 am
Hi
Well that certainly is encouraging news !
Thank you all for the replies.
It sounds like it may be a good time to be in this situation. ( not sure if I said that right ).
I mean being 3 years too late may be good ! right ?
Thanks for the help. I feel encouraged after reading your posts.
sincerely,
Shane
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- January 24, 2014 at 3:15 am
Hi
Well that certainly is encouraging news !
Thank you all for the replies.
It sounds like it may be a good time to be in this situation. ( not sure if I said that right ).
I mean being 3 years too late may be good ! right ?
Thanks for the help. I feel encouraged after reading your posts.
sincerely,
Shane
-
- January 24, 2014 at 3:15 am
Hi
Well that certainly is encouraging news !
Thank you all for the replies.
It sounds like it may be a good time to be in this situation. ( not sure if I said that right ).
I mean being 3 years too late may be good ! right ?
Thanks for the help. I feel encouraged after reading your posts.
sincerely,
Shane
-
- January 24, 2014 at 4:38 am
When I went to Stage IV in Feb 2007 the statistics said I had between 30 and 180 days. Last data I saw used 1 year as the medium life expectancy for one upon going to stage IV. My advice has always been, to learn all one can and while learning, at stage IV, teach ones significant other what they will need to know to live without us. THEN fight like mad to keep them from having to use what you taught them.
I have not been NED (No Evidence of Disease – on scans) since reaching Stage IV. I'm still here either way. As you were told above, there are quite a few things now that stand a chance of lengthing ones life that were not available when I reached stage IV. For some, they will live long enough to die from old age.
Do you know what your DNA mutation and LDH are? This can make a big difference in which treatment is likely to have a positive effect.
What are you in for? A lot of uncertainity, a feeling of comradship with many people that you may never see. possibly pain, certainly some fatigue and a lot of running and waiting for tests and results. For wondering if every bump and ache has anything to do with melanoma. One learns to live with this and to enjoy the good things inlife that we used to overlook.
Jeff Tomczek: The Things I Wish I Were Told When I Was Diagnosed With Cancer:
http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html
Good luck sorry to need to welcome you, but glad to help.
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- January 24, 2014 at 4:38 am
When I went to Stage IV in Feb 2007 the statistics said I had between 30 and 180 days. Last data I saw used 1 year as the medium life expectancy for one upon going to stage IV. My advice has always been, to learn all one can and while learning, at stage IV, teach ones significant other what they will need to know to live without us. THEN fight like mad to keep them from having to use what you taught them.
I have not been NED (No Evidence of Disease – on scans) since reaching Stage IV. I'm still here either way. As you were told above, there are quite a few things now that stand a chance of lengthing ones life that were not available when I reached stage IV. For some, they will live long enough to die from old age.
Do you know what your DNA mutation and LDH are? This can make a big difference in which treatment is likely to have a positive effect.
What are you in for? A lot of uncertainity, a feeling of comradship with many people that you may never see. possibly pain, certainly some fatigue and a lot of running and waiting for tests and results. For wondering if every bump and ache has anything to do with melanoma. One learns to live with this and to enjoy the good things inlife that we used to overlook.
Jeff Tomczek: The Things I Wish I Were Told When I Was Diagnosed With Cancer:
http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html
Good luck sorry to need to welcome you, but glad to help.
-
- January 24, 2014 at 4:38 am
When I went to Stage IV in Feb 2007 the statistics said I had between 30 and 180 days. Last data I saw used 1 year as the medium life expectancy for one upon going to stage IV. My advice has always been, to learn all one can and while learning, at stage IV, teach ones significant other what they will need to know to live without us. THEN fight like mad to keep them from having to use what you taught them.
I have not been NED (No Evidence of Disease – on scans) since reaching Stage IV. I'm still here either way. As you were told above, there are quite a few things now that stand a chance of lengthing ones life that were not available when I reached stage IV. For some, they will live long enough to die from old age.
Do you know what your DNA mutation and LDH are? This can make a big difference in which treatment is likely to have a positive effect.
What are you in for? A lot of uncertainity, a feeling of comradship with many people that you may never see. possibly pain, certainly some fatigue and a lot of running and waiting for tests and results. For wondering if every bump and ache has anything to do with melanoma. One learns to live with this and to enjoy the good things inlife that we used to overlook.
Jeff Tomczek: The Things I Wish I Were Told When I Was Diagnosed With Cancer:
http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html
Good luck sorry to need to welcome you, but glad to help.
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- January 24, 2014 at 3:08 pm
hi
Thanks for the info, I appreciate it.
I do not know yet the mutation, but LDH is qround 150, which is good right ?
But the oncologist has not talked about the spot on the pancreas.
Since it was in my L3 spine, they started this week with targeted radiation on the spine.
I finished my first 5 days this morning. I followed the low reidue, low fiber diet and have had no intestinal issues yet. Just a very slight nausea and extremely tired.
My back seems to feel a little better already, as far as pain goes. Is that possible that quick ?
thanks again for all your help
Shane
-
- January 24, 2014 at 3:08 pm
hi
Thanks for the info, I appreciate it.
I do not know yet the mutation, but LDH is qround 150, which is good right ?
But the oncologist has not talked about the spot on the pancreas.
Since it was in my L3 spine, they started this week with targeted radiation on the spine.
I finished my first 5 days this morning. I followed the low reidue, low fiber diet and have had no intestinal issues yet. Just a very slight nausea and extremely tired.
My back seems to feel a little better already, as far as pain goes. Is that possible that quick ?
thanks again for all your help
Shane
-
- January 24, 2014 at 3:08 pm
hi
Thanks for the info, I appreciate it.
I do not know yet the mutation, but LDH is qround 150, which is good right ?
But the oncologist has not talked about the spot on the pancreas.
Since it was in my L3 spine, they started this week with targeted radiation on the spine.
I finished my first 5 days this morning. I followed the low reidue, low fiber diet and have had no intestinal issues yet. Just a very slight nausea and extremely tired.
My back seems to feel a little better already, as far as pain goes. Is that possible that quick ?
thanks again for all your help
Shane
-
- January 24, 2014 at 4:08 pm
Yes it is possible for radiation to the bone to lessen the pain after 5 zaps. I had 10 pallative zaps to my T10 vertebrae and later found out it was also to 3 other vertebrae close to it. Within about 7 zaps I was walking around pretty good and still am. However radiation alone will not cure melanoma but it can help. For me it reduced that area by 20% but I felt normal and was stunned to see I still had mel there and in several other bones.
When the folks here say get your DNA checked I believe they are talking about seeing if you are BRAF positive and which type and maybe other tests I'm not sure about. Things like that are why you need to be at a NCI certified melanoma center. Some of the medicines like Zelboraf and others are only available if your mel has that gene mutation. Even if you are BRAF negative though there are the medicines like I just finished called ipilumab(Yervoy) that have helped others plus other meds still in trials like nivolumab.
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- January 24, 2014 at 4:08 pm
Yes it is possible for radiation to the bone to lessen the pain after 5 zaps. I had 10 pallative zaps to my T10 vertebrae and later found out it was also to 3 other vertebrae close to it. Within about 7 zaps I was walking around pretty good and still am. However radiation alone will not cure melanoma but it can help. For me it reduced that area by 20% but I felt normal and was stunned to see I still had mel there and in several other bones.
When the folks here say get your DNA checked I believe they are talking about seeing if you are BRAF positive and which type and maybe other tests I'm not sure about. Things like that are why you need to be at a NCI certified melanoma center. Some of the medicines like Zelboraf and others are only available if your mel has that gene mutation. Even if you are BRAF negative though there are the medicines like I just finished called ipilumab(Yervoy) that have helped others plus other meds still in trials like nivolumab.
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- January 24, 2014 at 4:56 pm
thanks
How is your spine doing now ? Hope you are well. So the radiation did not get rid of the bone met ?
How did you do on the Yervoy ?
There are a couple of centers in new york city, but my insurance does not cover them.
I am 2 hours north of New York city. Unfortunately, I can not go to a certified melanoma center.
thanks for your info and help.
shane
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- January 24, 2014 at 4:56 pm
thanks
How is your spine doing now ? Hope you are well. So the radiation did not get rid of the bone met ?
How did you do on the Yervoy ?
There are a couple of centers in new york city, but my insurance does not cover them.
I am 2 hours north of New York city. Unfortunately, I can not go to a certified melanoma center.
thanks for your info and help.
shane
-
- January 24, 2014 at 8:51 pm
Shane, where in NY are you? We moved from the Albany area about a year and a half ago (just about 1 year after my husbands initial diagnosis). I would recommend getting a melanoma specialist in whatever way you can. Sloan is probably your best bet, but to be honest with you, moving to NC has been a blessing. Melanoma has not stayed away. On the contrary, he had a recurrence one month after we got here, again removed & told to monitor. Now we are back at the same stage. Another met (possibly will know after biopsy), surgery scheduled and we’ll take it from there. If we had States in NY, I honestly don’t know what my life would look like because most general oncologists recommended interferon. I only know from my husband, but he did not want to take that. Melanoma specialists are up to date on all the research & many are conducting clinical studies themselves. Is there any way you can travel to get to a melanoma specialist? I know it is easier said than done, but it might be something to look into. I wish you the best of luck with all if this. There is a lot of promise now, so don’t give up. -
- January 24, 2014 at 8:51 pm
Shane, where in NY are you? We moved from the Albany area about a year and a half ago (just about 1 year after my husbands initial diagnosis). I would recommend getting a melanoma specialist in whatever way you can. Sloan is probably your best bet, but to be honest with you, moving to NC has been a blessing. Melanoma has not stayed away. On the contrary, he had a recurrence one month after we got here, again removed & told to monitor. Now we are back at the same stage. Another met (possibly will know after biopsy), surgery scheduled and we’ll take it from there. If we had States in NY, I honestly don’t know what my life would look like because most general oncologists recommended interferon. I only know from my husband, but he did not want to take that. Melanoma specialists are up to date on all the research & many are conducting clinical studies themselves. Is there any way you can travel to get to a melanoma specialist? I know it is easier said than done, but it might be something to look into. I wish you the best of luck with all if this. There is a lot of promise now, so don’t give up. -
- January 24, 2014 at 8:51 pm
Shane, where in NY are you? We moved from the Albany area about a year and a half ago (just about 1 year after my husbands initial diagnosis). I would recommend getting a melanoma specialist in whatever way you can. Sloan is probably your best bet, but to be honest with you, moving to NC has been a blessing. Melanoma has not stayed away. On the contrary, he had a recurrence one month after we got here, again removed & told to monitor. Now we are back at the same stage. Another met (possibly will know after biopsy), surgery scheduled and we’ll take it from there. If we had States in NY, I honestly don’t know what my life would look like because most general oncologists recommended interferon. I only know from my husband, but he did not want to take that. Melanoma specialists are up to date on all the research & many are conducting clinical studies themselves. Is there any way you can travel to get to a melanoma specialist? I know it is easier said than done, but it might be something to look into. I wish you the best of luck with all if this. There is a lot of promise now, so don’t give up. -
- January 24, 2014 at 4:56 pm
thanks
How is your spine doing now ? Hope you are well. So the radiation did not get rid of the bone met ?
How did you do on the Yervoy ?
There are a couple of centers in new york city, but my insurance does not cover them.
I am 2 hours north of New York city. Unfortunately, I can not go to a certified melanoma center.
thanks for your info and help.
shane
-
- January 24, 2014 at 4:08 pm
Yes it is possible for radiation to the bone to lessen the pain after 5 zaps. I had 10 pallative zaps to my T10 vertebrae and later found out it was also to 3 other vertebrae close to it. Within about 7 zaps I was walking around pretty good and still am. However radiation alone will not cure melanoma but it can help. For me it reduced that area by 20% but I felt normal and was stunned to see I still had mel there and in several other bones.
When the folks here say get your DNA checked I believe they are talking about seeing if you are BRAF positive and which type and maybe other tests I'm not sure about. Things like that are why you need to be at a NCI certified melanoma center. Some of the medicines like Zelboraf and others are only available if your mel has that gene mutation. Even if you are BRAF negative though there are the medicines like I just finished called ipilumab(Yervoy) that have helped others plus other meds still in trials like nivolumab.
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- January 25, 2014 at 9:08 pm
hi Shane — I don't have anything extra to add — but welcome to stage IV (?!) — I am also there, and feel quite hopeful that I will be there for many more years! I've already outlived my life expectancy. The others are right: the stats are grim, and they don't have much to do with you.
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- January 25, 2014 at 9:08 pm
hi Shane — I don't have anything extra to add — but welcome to stage IV (?!) — I am also there, and feel quite hopeful that I will be there for many more years! I've already outlived my life expectancy. The others are right: the stats are grim, and they don't have much to do with you.
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- January 25, 2014 at 9:08 pm
hi Shane — I don't have anything extra to add — but welcome to stage IV (?!) — I am also there, and feel quite hopeful that I will be there for many more years! I've already outlived my life expectancy. The others are right: the stats are grim, and they don't have much to do with you.
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Tagged: cutaneous melanoma
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