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- November 13, 2015 at 7:11 pm
Hi,
I just got back my results from the SLNB. My surgeon told me the node came back positive for traces of microscopic cancer cells. He does not know if I should have anymore nodes removed because the disease is only microscopic but did state that I would need further treatment. They only found one sentinol node and he ended up removing another 2 nodes because they were really close to each other. Im only 34 years old and I dont think Im comfortable with that approach and I really would like the rest of the lymph nodes taken from that region under my armpit just in case any other cells are in other lymph nodes. Since my tumor was ulcerated im a stage 3b right now.
Any thoughts would be appreciated since I feel like a boulder was dropped on me.
Thanks Greg
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- November 13, 2015 at 7:23 pm
Greg – you have come to right place. There many new treatments out there for 3B patients…some that have just been approved during the past few weeks/months….and there are some clinical trials that would be worth considering.
I think the most common and important advise from this board would be go find yourself a true Melanoma specialist. A surgeon or an oncologist is not the right place to get Melanoma advise from…especially for Stage 3 and 4 patients. You want somebody that treats Melanoma all day long every day of the week.
You have probably seen the survival rates by stage. Those rates are quickly becoming outdated for those individual that proactively seek treatment. (they are still very scary for those that do nothing)
You can read for hours on this board and you will find various scenarios for treatment…but they will all end the same…go find that specialist even if you have to travel.
Michel
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- November 13, 2015 at 7:23 pm
Greg – you have come to right place. There many new treatments out there for 3B patients…some that have just been approved during the past few weeks/months….and there are some clinical trials that would be worth considering.
I think the most common and important advise from this board would be go find yourself a true Melanoma specialist. A surgeon or an oncologist is not the right place to get Melanoma advise from…especially for Stage 3 and 4 patients. You want somebody that treats Melanoma all day long every day of the week.
You have probably seen the survival rates by stage. Those rates are quickly becoming outdated for those individual that proactively seek treatment. (they are still very scary for those that do nothing)
You can read for hours on this board and you will find various scenarios for treatment…but they will all end the same…go find that specialist even if you have to travel.
Michel
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- November 13, 2015 at 7:23 pm
Greg – you have come to right place. There many new treatments out there for 3B patients…some that have just been approved during the past few weeks/months….and there are some clinical trials that would be worth considering.
I think the most common and important advise from this board would be go find yourself a true Melanoma specialist. A surgeon or an oncologist is not the right place to get Melanoma advise from…especially for Stage 3 and 4 patients. You want somebody that treats Melanoma all day long every day of the week.
You have probably seen the survival rates by stage. Those rates are quickly becoming outdated for those individual that proactively seek treatment. (they are still very scary for those that do nothing)
You can read for hours on this board and you will find various scenarios for treatment…but they will all end the same…go find that specialist even if you have to travel.
Michel
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- November 13, 2015 at 8:49 pm
Hi Greg, I would like to add to the advice already given. One thing that has come up this year that is important at ASCO was a study done in Europe where they found no overall survival benefit from removing all the lymph nodes. They did however find better regional control of the cancer. The recommendations from the study was to watch via ultra sound and oncologist visits. These finding go against the standard in the U.S. where they tend to follow a CLND. If you go to youtube and type in (ASCO 2015 Melanoma lymph node study) you should be able to listen to the presentation yourself. I have also heard from a couple of Melanoma oncology videos that we might want to keep our Lymph nodes since they are so important in the immune response and T–cell activation when using Immunotherapy drugs. A melanoma specialist would be able to give you the best advice and options at this point. Wishing you the best !!! Ed
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- November 13, 2015 at 8:49 pm
Hi Greg, I would like to add to the advice already given. One thing that has come up this year that is important at ASCO was a study done in Europe where they found no overall survival benefit from removing all the lymph nodes. They did however find better regional control of the cancer. The recommendations from the study was to watch via ultra sound and oncologist visits. These finding go against the standard in the U.S. where they tend to follow a CLND. If you go to youtube and type in (ASCO 2015 Melanoma lymph node study) you should be able to listen to the presentation yourself. I have also heard from a couple of Melanoma oncology videos that we might want to keep our Lymph nodes since they are so important in the immune response and T–cell activation when using Immunotherapy drugs. A melanoma specialist would be able to give you the best advice and options at this point. Wishing you the best !!! Ed
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- November 13, 2015 at 8:49 pm
Hi Greg, I would like to add to the advice already given. One thing that has come up this year that is important at ASCO was a study done in Europe where they found no overall survival benefit from removing all the lymph nodes. They did however find better regional control of the cancer. The recommendations from the study was to watch via ultra sound and oncologist visits. These finding go against the standard in the U.S. where they tend to follow a CLND. If you go to youtube and type in (ASCO 2015 Melanoma lymph node study) you should be able to listen to the presentation yourself. I have also heard from a couple of Melanoma oncology videos that we might want to keep our Lymph nodes since they are so important in the immune response and T–cell activation when using Immunotherapy drugs. A melanoma specialist would be able to give you the best advice and options at this point. Wishing you the best !!! Ed
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- November 13, 2015 at 9:21 pm
I’m two years out from getting a clnd in my groin. I’m 3b as well. I got into the ipi/Interferon trial and got ipi 3mg. I did it for over a year. Now there might be different trials but there is hope! -
- November 13, 2015 at 9:21 pm
I’m two years out from getting a clnd in my groin. I’m 3b as well. I got into the ipi/Interferon trial and got ipi 3mg. I did it for over a year. Now there might be different trials but there is hope! -
- November 13, 2015 at 9:21 pm
I’m two years out from getting a clnd in my groin. I’m 3b as well. I got into the ipi/Interferon trial and got ipi 3mg. I did it for over a year. Now there might be different trials but there is hope!-
- November 14, 2015 at 12:22 am
Definitely see a melanoma specialist, it is very important. Immunotherapy is the way to go, someone suggesting chemo is not too knowledgeable in this area. Melanoma can be tricky and you want to stay on top of things, with hopefully a newer drug. Being scared and anxious right now is how we all felt too. These new drugs are doing great things in people. I was scared to death at first because I was scared about ipi side effects and didn’t want to do Interferon either. I came to this site and was so incouraged, it totally changed my outlook. Stage 4 people becoming Ned, that’s definitely encouraging because we aren’t even there yet, only 3b -
- November 14, 2015 at 12:22 am
Definitely see a melanoma specialist, it is very important. Immunotherapy is the way to go, someone suggesting chemo is not too knowledgeable in this area. Melanoma can be tricky and you want to stay on top of things, with hopefully a newer drug. Being scared and anxious right now is how we all felt too. These new drugs are doing great things in people. I was scared to death at first because I was scared about ipi side effects and didn’t want to do Interferon either. I came to this site and was so incouraged, it totally changed my outlook. Stage 4 people becoming Ned, that’s definitely encouraging because we aren’t even there yet, only 3b -
- November 14, 2015 at 12:22 am
Definitely see a melanoma specialist, it is very important. Immunotherapy is the way to go, someone suggesting chemo is not too knowledgeable in this area. Melanoma can be tricky and you want to stay on top of things, with hopefully a newer drug. Being scared and anxious right now is how we all felt too. These new drugs are doing great things in people. I was scared to death at first because I was scared about ipi side effects and didn’t want to do Interferon either. I came to this site and was so incouraged, it totally changed my outlook. Stage 4 people becoming Ned, that’s definitely encouraging because we aren’t even there yet, only 3b -
- November 14, 2015 at 1:44 am
Im looking into a melanoma specialist but i just want to get through the initial pet scans and possibly more surgery to do a clnd. I never heard of chemo treating melanoma and this was coming from my fcp so I have to see what my oncologist says.Has anyone done chemo for melanoma? IF this is recommended i will definitely get a second opinion because i read alot about yervoy and immunotherapies. But from reading many profiles it seems like CLND is the way to go with treatment of some sort.
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- November 14, 2015 at 1:44 am
Im looking into a melanoma specialist but i just want to get through the initial pet scans and possibly more surgery to do a clnd. I never heard of chemo treating melanoma and this was coming from my fcp so I have to see what my oncologist says.Has anyone done chemo for melanoma? IF this is recommended i will definitely get a second opinion because i read alot about yervoy and immunotherapies. But from reading many profiles it seems like CLND is the way to go with treatment of some sort.
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- November 14, 2015 at 1:44 am
Im looking into a melanoma specialist but i just want to get through the initial pet scans and possibly more surgery to do a clnd. I never heard of chemo treating melanoma and this was coming from my fcp so I have to see what my oncologist says.Has anyone done chemo for melanoma? IF this is recommended i will definitely get a second opinion because i read alot about yervoy and immunotherapies. But from reading many profiles it seems like CLND is the way to go with treatment of some sort.
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- November 14, 2015 at 7:58 am
Perhaps the better thing is to find a melanoma specialist before you subject yourself to more, possibly unnecessary, surgery? I know in Australian stage III patients can access clincial trials of immunotherapy. Nothing to do with chemo, and I'm not sure if CLNDs are still done. There is definitely debate around it – it's no small thing to do. Do you have anything to lose by holding out a few more days until you find a melanoma specialist? It's very worthwhile with such fast-moving science/treatment options.
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- November 14, 2015 at 7:58 am
Perhaps the better thing is to find a melanoma specialist before you subject yourself to more, possibly unnecessary, surgery? I know in Australian stage III patients can access clincial trials of immunotherapy. Nothing to do with chemo, and I'm not sure if CLNDs are still done. There is definitely debate around it – it's no small thing to do. Do you have anything to lose by holding out a few more days until you find a melanoma specialist? It's very worthwhile with such fast-moving science/treatment options.
-
- November 14, 2015 at 7:58 am
Perhaps the better thing is to find a melanoma specialist before you subject yourself to more, possibly unnecessary, surgery? I know in Australian stage III patients can access clincial trials of immunotherapy. Nothing to do with chemo, and I'm not sure if CLNDs are still done. There is definitely debate around it – it's no small thing to do. Do you have anything to lose by holding out a few more days until you find a melanoma specialist? It's very worthwhile with such fast-moving science/treatment options.
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- November 14, 2015 at 12:25 am
Really not bad at all. Treatment days were the worst because I would be so tired. I also started in the winter and so the itchy skin was kind of bad. Other than that, nothing really -
- November 14, 2015 at 12:25 am
Really not bad at all. Treatment days were the worst because I would be so tired. I also started in the winter and so the itchy skin was kind of bad. Other than that, nothing really -
- November 14, 2015 at 12:25 am
Really not bad at all. Treatment days were the worst because I would be so tired. I also started in the winter and so the itchy skin was kind of bad. Other than that, nothing really
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