› Forums › General Melanoma Community › Discovered yesterday that have melanoma stage IV
- This topic has 24 replies, 7 voices, and was last updated 13 years, 1 month ago by
ToddC.
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- August 4, 2012 at 9:48 pm
I’m still reeling from results I received late yesterday. I’m a 47 year old female who sees a Dermatologist twice a year for prevention. I had a trauma several months back and a thoracic x-ray showed what they thought was fluid. Well long story short it was not. I’m reaching out on any suggestions, recommendations that anyone may have. Thank you.I’m still reeling from results I received late yesterday. I’m a 47 year old female who sees a Dermatologist twice a year for prevention. I had a trauma several months back and a thoracic x-ray showed what they thought was fluid. Well long story short it was not. I’m reaching out on any suggestions, recommendations that anyone may have. Thank you.
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- August 4, 2012 at 10:09 pm
Rich text editor, edit-comment, press ALT 0 for help.img.cke_flash{background-image: url(http://www.melanoma.org/sites/all/libraries/ckeditor/plugins/flash/images/placeholder.png?t=A73H4H9);background-position: center center;background-repeat: no-repeat;border: 1px solid #a9a9a9;width: 80px;height: 80px;}
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FIGHT!! with everything you got. Research and ask questions. Use discernment with every well intentioned advice. Be good to yourself and ask for and accept help. You deserve it. Goodluck
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- August 4, 2012 at 10:09 pm
Rich text editor, edit-comment, press ALT 0 for help.img.cke_flash{background-image: url(http://www.melanoma.org/sites/all/libraries/ckeditor/plugins/flash/images/placeholder.png?t=A73H4H9);background-position: center center;background-repeat: no-repeat;border: 1px solid #a9a9a9;width: 80px;height: 80px;}
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img.cke_hidden{background-image: url(http://www.melanoma.org/sites/all/libraries/ckeditor/plugins/forms/images/hiddenfield.gif?t=A73H4H9);background-position: center center;background-repeat:
FIGHT!! with everything you got. Research and ask questions. Use discernment with every well intentioned advice. Be good to yourself and ask for and accept help. You deserve it. Goodluck
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- August 4, 2012 at 10:09 pm
Rich text editor, edit-comment, press ALT 0 for help.img.cke_flash{background-image: url(http://www.melanoma.org/sites/all/libraries/ckeditor/plugins/flash/images/placeholder.png?t=A73H4H9);background-position: center center;background-repeat: no-repeat;border: 1px solid #a9a9a9;width: 80px;height: 80px;}
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img.cke_hidden{background-image: url(http://www.melanoma.org/sites/all/libraries/ckeditor/plugins/forms/images/hiddenfield.gif?t=A73H4H9);background-position: center center;background-repeat:
FIGHT!! with everything you got. Research and ask questions. Use discernment with every well intentioned advice. Be good to yourself and ask for and accept help. You deserve it. Goodluck
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- August 4, 2012 at 10:42 pm
Sorry to hear about your diagnosis. You've come to a good place to get help and to vent.
First and foremost, are you seeing a melanoma specialist? Not a general oncologist or a dermatologist, but a melanoma specialist. Melanoma speciaists are the folks who are going to be the most up to speed in current treatments and give you access to clinical trials.
Over the past year we've seen HUGE strides in melanoma treatment with the FDA approval of Zelboraf and Yervoy. A number of melanoma centers are currently having trials for some very promising drugs. Lynn Luckenroth is a stage IV survivor who is currently on an Anti PD1 trial and is doing really well. She'll more than likely respond to this post and provide more details.
Don't get me wrong, this disease is nothing to trifle with. But all the advances that the medical community is making the survivor list is growing. That's the main thing I try to keep in the back of my mind.
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- August 4, 2012 at 10:42 pm
Sorry to hear about your diagnosis. You've come to a good place to get help and to vent.
First and foremost, are you seeing a melanoma specialist? Not a general oncologist or a dermatologist, but a melanoma specialist. Melanoma speciaists are the folks who are going to be the most up to speed in current treatments and give you access to clinical trials.
Over the past year we've seen HUGE strides in melanoma treatment with the FDA approval of Zelboraf and Yervoy. A number of melanoma centers are currently having trials for some very promising drugs. Lynn Luckenroth is a stage IV survivor who is currently on an Anti PD1 trial and is doing really well. She'll more than likely respond to this post and provide more details.
Don't get me wrong, this disease is nothing to trifle with. But all the advances that the medical community is making the survivor list is growing. That's the main thing I try to keep in the back of my mind.
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- August 4, 2012 at 11:01 pm
Thank you for your post. I am seeing a Dr. Amin in Charlotte, NC who has been highly recommended to us. As I continue my early research always seeing MD Anderson popping up at top of list. Any suggestions? -
- August 4, 2012 at 11:01 pm
Thank you for your post. I am seeing a Dr. Amin in Charlotte, NC who has been highly recommended to us. As I continue my early research always seeing MD Anderson popping up at top of list. Any suggestions? -
- August 5, 2012 at 1:33 am
You need to provide more details, how many lung tumors are they seeing, are they in both lungs, what are their sizes, are they growing rapidly, have you had a Cat/Pet scan to determine the extent of your disease?? What is your Melanoma doctor recommending as your first treatment step? I know this diagnosis is new to you and very scary, but you have to let yourself be sad for a day or two, then pick yourself up and come up with a plan! One thing I learned in our two and a half year fight, is to get educated and advocate for your treatment, knowledge is power! My husband goes to MDAnderson, email me directly for specifics on treatment in Houston! We have all been in your shoes and will really try to help! Big hugs, Valerie (Phil’s wife) -
- August 5, 2012 at 1:33 am
You need to provide more details, how many lung tumors are they seeing, are they in both lungs, what are their sizes, are they growing rapidly, have you had a Cat/Pet scan to determine the extent of your disease?? What is your Melanoma doctor recommending as your first treatment step? I know this diagnosis is new to you and very scary, but you have to let yourself be sad for a day or two, then pick yourself up and come up with a plan! One thing I learned in our two and a half year fight, is to get educated and advocate for your treatment, knowledge is power! My husband goes to MDAnderson, email me directly for specifics on treatment in Houston! We have all been in your shoes and will really try to help! Big hugs, Valerie (Phil’s wife) -
- August 5, 2012 at 1:33 am
You need to provide more details, how many lung tumors are they seeing, are they in both lungs, what are their sizes, are they growing rapidly, have you had a Cat/Pet scan to determine the extent of your disease?? What is your Melanoma doctor recommending as your first treatment step? I know this diagnosis is new to you and very scary, but you have to let yourself be sad for a day or two, then pick yourself up and come up with a plan! One thing I learned in our two and a half year fight, is to get educated and advocate for your treatment, knowledge is power! My husband goes to MDAnderson, email me directly for specifics on treatment in Houston! We have all been in your shoes and will really try to help! Big hugs, Valerie (Phil’s wife) -
- August 4, 2012 at 11:01 pm
Thank you for your post. I am seeing a Dr. Amin in Charlotte, NC who has been highly recommended to us. As I continue my early research always seeing MD Anderson popping up at top of list. Any suggestions?
-
- August 4, 2012 at 10:42 pm
Sorry to hear about your diagnosis. You've come to a good place to get help and to vent.
First and foremost, are you seeing a melanoma specialist? Not a general oncologist or a dermatologist, but a melanoma specialist. Melanoma speciaists are the folks who are going to be the most up to speed in current treatments and give you access to clinical trials.
Over the past year we've seen HUGE strides in melanoma treatment with the FDA approval of Zelboraf and Yervoy. A number of melanoma centers are currently having trials for some very promising drugs. Lynn Luckenroth is a stage IV survivor who is currently on an Anti PD1 trial and is doing really well. She'll more than likely respond to this post and provide more details.
Don't get me wrong, this disease is nothing to trifle with. But all the advances that the medical community is making the survivor list is growing. That's the main thing I try to keep in the back of my mind.
-
- August 5, 2012 at 3:32 am
Hi, Sorry to read about your bad news. First I would suggest that you watch the entire video.
It is an excellent video about cancer in general, it is a must see video!
http://www.youtube.com/watch?v=WnaBG177VIw&feature=related
After you realize that cancer is a huge money making business then it is time to address how to help you.
Presently as I see it, the top drug for stage IV melanoma is Yervoy. Equally impressive is doing an alternative cure outside of the USA. Do a search on Ralph Moss and melanoma if you are inclined to go this route. There is a second drug called Zelboraf that will delay the melanoma from spreading but I haven't read of any long term survival results. The next option is IL-2 which is very toxic to your body, however, for the very low percentage of people that it works for it has permanent results. Lastly there are clinical trials. Just remember you are a real life guinea pig if you sign up for a clinical trial as you are signing away any legal rights you have in hopes that they will find a cure for you.
Best Wishes to you and I hope that you have success in curing this monster disease.
Gene
P.S. Most of the cures shown at the end of the above video are available in Mexico. Only you can decide how you want to treat this beast.
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- August 5, 2012 at 3:32 am
Hi, Sorry to read about your bad news. First I would suggest that you watch the entire video.
It is an excellent video about cancer in general, it is a must see video!
http://www.youtube.com/watch?v=WnaBG177VIw&feature=related
After you realize that cancer is a huge money making business then it is time to address how to help you.
Presently as I see it, the top drug for stage IV melanoma is Yervoy. Equally impressive is doing an alternative cure outside of the USA. Do a search on Ralph Moss and melanoma if you are inclined to go this route. There is a second drug called Zelboraf that will delay the melanoma from spreading but I haven't read of any long term survival results. The next option is IL-2 which is very toxic to your body, however, for the very low percentage of people that it works for it has permanent results. Lastly there are clinical trials. Just remember you are a real life guinea pig if you sign up for a clinical trial as you are signing away any legal rights you have in hopes that they will find a cure for you.
Best Wishes to you and I hope that you have success in curing this monster disease.
Gene
P.S. Most of the cures shown at the end of the above video are available in Mexico. Only you can decide how you want to treat this beast.
-
- August 5, 2012 at 3:32 am
Hi, Sorry to read about your bad news. First I would suggest that you watch the entire video.
It is an excellent video about cancer in general, it is a must see video!
http://www.youtube.com/watch?v=WnaBG177VIw&feature=related
After you realize that cancer is a huge money making business then it is time to address how to help you.
Presently as I see it, the top drug for stage IV melanoma is Yervoy. Equally impressive is doing an alternative cure outside of the USA. Do a search on Ralph Moss and melanoma if you are inclined to go this route. There is a second drug called Zelboraf that will delay the melanoma from spreading but I haven't read of any long term survival results. The next option is IL-2 which is very toxic to your body, however, for the very low percentage of people that it works for it has permanent results. Lastly there are clinical trials. Just remember you are a real life guinea pig if you sign up for a clinical trial as you are signing away any legal rights you have in hopes that they will find a cure for you.
Best Wishes to you and I hope that you have success in curing this monster disease.
Gene
P.S. Most of the cures shown at the end of the above video are available in Mexico. Only you can decide how you want to treat this beast.
-
- August 5, 2012 at 9:41 am
I am Lynn and I have stage 4 melanoma. I was dx'ed in June 2009 and given 6-9 months to live because it was in my mediasteinum pressing against the superior vena cava. It was cutting off the blood supply to the top half of my body. It was at the top of my lung area, kissing my heart. 6.8 cent. The surgeon at Mayo refused at first to do surgery due to the location. The best treatment would be to get it surgically removed if possible…so I went back in March 2010 and said look I am still standing and I want surgery…he agreed…I went to the NIH and they said it would return in a few months and to come back…I didn't want to wait believeing the less melanoma cells I had the better the treatment would work…I found the trial with Dr Weber using peptide injections and BMS's Anti PD-1 ( aka MDX 1106). I have remained melanoma free since the surgery thanks to the clinical trial and the Fater above. Initially I had 2 12 weeks of injections of peptides along with an infusion of Anti PD 1 every other week…hardly no side effects!! After the two 12 weeks I began getting the infusion of Anti PD-1 once every 3 months a long with scans, blood work and onc visit with Dr Weber. I have been in the trial about 97 weeks so far…its a 30 month trial….It's an awesome trial, with an awesome doc and awesome results!!
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- August 5, 2012 at 11:10 pm
Hi Lynn, I too had a lymph node go bad in the same spot as you (about 2 1/2 years ago) but found a great thoracic surgeon to remove it. Mine was only about 4×4 but also in a very hard place to get at, fortunately the surgeons are really good these days at getting these things. Unfortunately for me though, this has returned now in the next node near my liver so I'm having that one cutout next week, hopefully a minor laproscopic procedure. Pays to keep vigilant with scans 2x year with this stupid disease once its stage 4. Just keep cutting them out i suppose!
Thought i'd wait until things got really desparate before trying any chemo type drugs to see if I could just keep it at bay naturally which I've somwhat had success at for about 4 years prior until my recurrance in 2010 My onc told me about the new yervoy and last time around we tested to see if the braf drugs would work but I was not a candidate.
My problem is similar to the above poster that once they cut this stuff out I'm no longer a candidate for drug therapy since no more mel is visible. But when it returns they just suggest more surgury which seems to clear it… however I'm concerned my lymph system is going to start resembling swiss cheeze! Recently I've just been trying to get my pre-diabetes under control with excersise and supplements and had great success with that (my waking glucose is now avg 100 where before it was 115) but all that didn't seem to slow this thing down a bit. Recently I read on a website about the new theory melanoma travelling in the lymphatic system can be slowed with anti-inflammatory's like aspirin. I can't help but think all that excersise (lifting weights too!) i did caused the inflammation which allows this thing to keep on chuggin'
I'd like to keep up the excersise program since it makes me feel so good but am really worried now about inflammation from excersise making this mel want to grow again. I must be running out of lymph nodes by now i think! Maybe someone has a nice story to tell about how they were able to contain this cra[ppy disease with Aspirin… haha
heres a link to the article about inflammation, page 4 talks about cox2 inhibitor and asprin possbly helping.
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- August 5, 2012 at 11:10 pm
Hi Lynn, I too had a lymph node go bad in the same spot as you (about 2 1/2 years ago) but found a great thoracic surgeon to remove it. Mine was only about 4×4 but also in a very hard place to get at, fortunately the surgeons are really good these days at getting these things. Unfortunately for me though, this has returned now in the next node near my liver so I'm having that one cutout next week, hopefully a minor laproscopic procedure. Pays to keep vigilant with scans 2x year with this stupid disease once its stage 4. Just keep cutting them out i suppose!
Thought i'd wait until things got really desparate before trying any chemo type drugs to see if I could just keep it at bay naturally which I've somwhat had success at for about 4 years prior until my recurrance in 2010 My onc told me about the new yervoy and last time around we tested to see if the braf drugs would work but I was not a candidate.
My problem is similar to the above poster that once they cut this stuff out I'm no longer a candidate for drug therapy since no more mel is visible. But when it returns they just suggest more surgury which seems to clear it… however I'm concerned my lymph system is going to start resembling swiss cheeze! Recently I've just been trying to get my pre-diabetes under control with excersise and supplements and had great success with that (my waking glucose is now avg 100 where before it was 115) but all that didn't seem to slow this thing down a bit. Recently I read on a website about the new theory melanoma travelling in the lymphatic system can be slowed with anti-inflammatory's like aspirin. I can't help but think all that excersise (lifting weights too!) i did caused the inflammation which allows this thing to keep on chuggin'
I'd like to keep up the excersise program since it makes me feel so good but am really worried now about inflammation from excersise making this mel want to grow again. I must be running out of lymph nodes by now i think! Maybe someone has a nice story to tell about how they were able to contain this cra[ppy disease with Aspirin… haha
heres a link to the article about inflammation, page 4 talks about cox2 inhibitor and asprin possbly helping.
-
- August 5, 2012 at 11:10 pm
Hi Lynn, I too had a lymph node go bad in the same spot as you (about 2 1/2 years ago) but found a great thoracic surgeon to remove it. Mine was only about 4×4 but also in a very hard place to get at, fortunately the surgeons are really good these days at getting these things. Unfortunately for me though, this has returned now in the next node near my liver so I'm having that one cutout next week, hopefully a minor laproscopic procedure. Pays to keep vigilant with scans 2x year with this stupid disease once its stage 4. Just keep cutting them out i suppose!
Thought i'd wait until things got really desparate before trying any chemo type drugs to see if I could just keep it at bay naturally which I've somwhat had success at for about 4 years prior until my recurrance in 2010 My onc told me about the new yervoy and last time around we tested to see if the braf drugs would work but I was not a candidate.
My problem is similar to the above poster that once they cut this stuff out I'm no longer a candidate for drug therapy since no more mel is visible. But when it returns they just suggest more surgury which seems to clear it… however I'm concerned my lymph system is going to start resembling swiss cheeze! Recently I've just been trying to get my pre-diabetes under control with excersise and supplements and had great success with that (my waking glucose is now avg 100 where before it was 115) but all that didn't seem to slow this thing down a bit. Recently I read on a website about the new theory melanoma travelling in the lymphatic system can be slowed with anti-inflammatory's like aspirin. I can't help but think all that excersise (lifting weights too!) i did caused the inflammation which allows this thing to keep on chuggin'
I'd like to keep up the excersise program since it makes me feel so good but am really worried now about inflammation from excersise making this mel want to grow again. I must be running out of lymph nodes by now i think! Maybe someone has a nice story to tell about how they were able to contain this cra[ppy disease with Aspirin… haha
heres a link to the article about inflammation, page 4 talks about cox2 inhibitor and asprin possbly helping.
-
- August 5, 2012 at 9:41 am
I am Lynn and I have stage 4 melanoma. I was dx'ed in June 2009 and given 6-9 months to live because it was in my mediasteinum pressing against the superior vena cava. It was cutting off the blood supply to the top half of my body. It was at the top of my lung area, kissing my heart. 6.8 cent. The surgeon at Mayo refused at first to do surgery due to the location. The best treatment would be to get it surgically removed if possible…so I went back in March 2010 and said look I am still standing and I want surgery…he agreed…I went to the NIH and they said it would return in a few months and to come back…I didn't want to wait believeing the less melanoma cells I had the better the treatment would work…I found the trial with Dr Weber using peptide injections and BMS's Anti PD-1 ( aka MDX 1106). I have remained melanoma free since the surgery thanks to the clinical trial and the Fater above. Initially I had 2 12 weeks of injections of peptides along with an infusion of Anti PD 1 every other week…hardly no side effects!! After the two 12 weeks I began getting the infusion of Anti PD-1 once every 3 months a long with scans, blood work and onc visit with Dr Weber. I have been in the trial about 97 weeks so far…its a 30 month trial….It's an awesome trial, with an awesome doc and awesome results!!
-
- August 5, 2012 at 9:41 am
I am Lynn and I have stage 4 melanoma. I was dx'ed in June 2009 and given 6-9 months to live because it was in my mediasteinum pressing against the superior vena cava. It was cutting off the blood supply to the top half of my body. It was at the top of my lung area, kissing my heart. 6.8 cent. The surgeon at Mayo refused at first to do surgery due to the location. The best treatment would be to get it surgically removed if possible…so I went back in March 2010 and said look I am still standing and I want surgery…he agreed…I went to the NIH and they said it would return in a few months and to come back…I didn't want to wait believeing the less melanoma cells I had the better the treatment would work…I found the trial with Dr Weber using peptide injections and BMS's Anti PD-1 ( aka MDX 1106). I have remained melanoma free since the surgery thanks to the clinical trial and the Fater above. Initially I had 2 12 weeks of injections of peptides along with an infusion of Anti PD 1 every other week…hardly no side effects!! After the two 12 weeks I began getting the infusion of Anti PD-1 once every 3 months a long with scans, blood work and onc visit with Dr Weber. I have been in the trial about 97 weeks so far…its a 30 month trial….It's an awesome trial, with an awesome doc and awesome results!!
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