› Forums › General Melanoma Community › I am reading the boards but not understanding the abbreviations
- This topic has 18 replies, 8 voices, and was last updated 14 years, 1 month ago by
Phil S.
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- August 26, 2010 at 2:28 pm
Sorry still new and over whelmed and reading these notes is getting me alittle scared of what is coming. I have not let things get the better me in anything in my life so far but this has got me wondering what my chances really are, and is it just battle of prolonged loses. I keep seeing NED and SNB and I don't know what they are. I have had a Biopsy; a brain scan, a cat scan and a pet scan and all say the cancer is in the neck and has not spread. But with all the reading I have done it is not really true only that it has not shown itself anywhere else.
Sorry still new and over whelmed and reading these notes is getting me alittle scared of what is coming. I have not let things get the better me in anything in my life so far but this has got me wondering what my chances really are, and is it just battle of prolonged loses. I keep seeing NED and SNB and I don't know what they are. I have had a Biopsy; a brain scan, a cat scan and a pet scan and all say the cancer is in the neck and has not spread. But with all the reading I have done it is not really true only that it has not shown itself anywhere else. I have no real understanding of this yet and still learning. But I think I might need to leave this board as it does not improve my outlook. I plan on fighting this like I have other things in my life. I almost bled out losing 4.5 pints of blood during the time they found my ulcerative colitis and I was driving my car and was up and walking. This cancer has a fight but I need more information. What site has answers and not the stats of possible length of life
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- August 26, 2010 at 4:02 pm
I don't know what sites have the % and possible length of Life. Each case is different, depending on your stage and other conditions. You would have to talk to your doctor about that.
The statistics are changing all the time and the year longevity statistics were created 5 years ago.
NED – No evidence of disease. After the last surgery or treatment, the clock starts for how long you have been without any evidence of Mel. the longer the better. I am at 3 months and hope it gets up into years soon.
SNB – Sentinel node biopsy. Done to remove a few sentinel nodes to see if the Mel has moved from a localized site to the lymph nodes. They usually do some type of Cat scan with Dye to find out where the local Sentinel nodes are, depending on where your Mel is. They could be in the calf, thigh, abdomen, chest/neck. if the SNB shows no evidence of mel in those nodes, then the disease has not spread that far through the lymph nodes and that is a good thing.
LND – Lymph node dissection. If the SNB had some nodes that were positive for Mel, the surgeon may want to do a Lymph node dissection where they remove a lot more lymph nodes from the area. This could tend to lead towards issues with Lymphadema or swelling of the body as the Lymph fluid builds up in that area. In my case, they did a LND and looked for another major lymph node in my thigh and since that one was negative, they stopped removing any more lymph nodes.
WBR – Whole brain radiation.
There are probably a lot more abbreviations people are using to keep from spelling out the whole term each time.
Good luck on your journey. Mine started in March and I was scared and uneducated at the time. I am still scared, swollen, in pain from radiation, but i am getting a little more educated each day trying to fight this beast.
Bill
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- August 26, 2010 at 4:02 pm
I don't know what sites have the % and possible length of Life. Each case is different, depending on your stage and other conditions. You would have to talk to your doctor about that.
The statistics are changing all the time and the year longevity statistics were created 5 years ago.
NED – No evidence of disease. After the last surgery or treatment, the clock starts for how long you have been without any evidence of Mel. the longer the better. I am at 3 months and hope it gets up into years soon.
SNB – Sentinel node biopsy. Done to remove a few sentinel nodes to see if the Mel has moved from a localized site to the lymph nodes. They usually do some type of Cat scan with Dye to find out where the local Sentinel nodes are, depending on where your Mel is. They could be in the calf, thigh, abdomen, chest/neck. if the SNB shows no evidence of mel in those nodes, then the disease has not spread that far through the lymph nodes and that is a good thing.
LND – Lymph node dissection. If the SNB had some nodes that were positive for Mel, the surgeon may want to do a Lymph node dissection where they remove a lot more lymph nodes from the area. This could tend to lead towards issues with Lymphadema or swelling of the body as the Lymph fluid builds up in that area. In my case, they did a LND and looked for another major lymph node in my thigh and since that one was negative, they stopped removing any more lymph nodes.
WBR – Whole brain radiation.
There are probably a lot more abbreviations people are using to keep from spelling out the whole term each time.
Good luck on your journey. Mine started in March and I was scared and uneducated at the time. I am still scared, swollen, in pain from radiation, but i am getting a little more educated each day trying to fight this beast.
Bill
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- August 26, 2010 at 4:03 pm
Sorry you feel you are not getting the information you require. I am sure other people here can direct you to places within MPIP for the info you need.
NED is 'no evidence of disease'
SNB is "Sentinel Node Biopsy' after your mole or leision is removed, usually if the depth or thickness warrants it, they will do a test PRIOR to the WLE (wide local excision) a blue dye is injected into the space where the mole/? was removed and they can trace its pathway to the nodes that are in what ever region that basinn is.
they remove any nodes that have absorped the dye, and check for melanoma. Do not hesitate to ask questions here. The new format for some of us 'old timers' is sort of hard (for me anyways) but do not just give up. Use the internet to your advantage, and above all, talk to your doctors.
Bonnie Lea
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- August 26, 2010 at 4:03 pm
Sorry you feel you are not getting the information you require. I am sure other people here can direct you to places within MPIP for the info you need.
NED is 'no evidence of disease'
SNB is "Sentinel Node Biopsy' after your mole or leision is removed, usually if the depth or thickness warrants it, they will do a test PRIOR to the WLE (wide local excision) a blue dye is injected into the space where the mole/? was removed and they can trace its pathway to the nodes that are in what ever region that basinn is.
they remove any nodes that have absorped the dye, and check for melanoma. Do not hesitate to ask questions here. The new format for some of us 'old timers' is sort of hard (for me anyways) but do not just give up. Use the internet to your advantage, and above all, talk to your doctors.
Bonnie Lea
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- August 26, 2010 at 4:25 pm
I hope you check in at least to read the responses to this post. It's your choice to abandon this board, but I just wanted to tell you that you should reconsider. I didn't find this board until a year after my diagnosis, and how I wish I had found it sooner! Like you, I knew nothing about melanoma, and put all my trust in the doctors. Now, from all that I have learned from the wonderful people on this board, I know that some poor decisions were made after my diagnosis, but at the time, I didn't know any better. This board opened up a world of clinical trials, treatment options that are not available where I live, and phenomenal advice, sharing and support. I have made cyber friends all over the world, some of whom I have met and continue to correspond with. I know you're overwhelmed, but this board is probably the BEST resource you will ever find. By the way, my initial prognosis was 3 mos-3 yrs. I'm still here 5 years later, and nowhere near the end. To see me, I look like the picture of health. And I credit this board for that.
Hugs
Sharyn
Stage IV
FYI, here are some explanations of some of the acronyms you'll come across. Learn them, as they will become part of your daily vocabulary. Google each one to find out more information. Any other acronyms that you don't understand, just ask.
NED – No Evidence of Disease
WLE – Wide local excision
SNB – Sentinal node biopsy
LND – Lymph node Dissection
ILP – Isolated Limb Perfusion
ILI – Isolated Limb Infusion
WBR – Whole Brain Radiation
SRS – Stereotactic Radiation Surgery (3 types, Gamma knife, Cyberknife, Novalis)
Some of the more common treatments you'll read about:
INF – Interferon (an immunotherapy)
TMZ – Temodar, aka Temodol, aka Temozolomide (chemo in pill form, crosses the blood brain barrier)
DTIC – dacarbazine (chemo)
IPI – ipilimumab (immunotherapy)
GM-CSF – Granulocyte Macrophage Colony Stimulating Factor (aka Leukine)
IL-2 – Interleukine 2
B-RAF, MEK, C-KIT, N-RAS, etc – These are all gene mutations found in a patient's DNA, identified from a genetic profiling.
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- August 26, 2010 at 4:54 pm
Sharyn
I appreciate your response as well as the rest who have and will respond. I have no faith in the doctors but no nothing of what is going on at this point. They have not staged me if I am saying this correctly. They have performed several tests and stilllhave not told me anything I can wrap my head around. They are sending me to MDA in Houston blind. I will be looking things up but what I really want is them to get this Tumor out of my neck. I think this is common among the newly diagnosis but the doctors are not making it any easier. My doctor recommended me to MDA because he was unsure of how to proceed but he gave me no other information. My oncologist seemed positive about the results but now is taking a step back. So the Stress builds. Sorry to all reading this and feeling my frustration but this is how my experience has been. I have been to places and done things no human wants to do with the military that were easier for me to deal with. This is something just out of reach and I don't have enough facts yet to make a decision
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- August 26, 2010 at 5:32 pm
I think I told you before that MDA Houston is a great place to go, so you'll be in good hands. Seems like you've had all the right tests and are heading in the right direction. I am sure at this point all you want in the thing out of our neck! I think we have all felt that way at one time or another. I'm vietman era, so I have many friends that went through what you did and are still dealing with the ghosts. I'm sorry you have another burden.
As for staging and exact answers, I believe until the actually see that monster and know the true size and check the lymph nodes for microscopic cancer you will not get the exact answers.
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- August 26, 2010 at 5:32 pm
I think I told you before that MDA Houston is a great place to go, so you'll be in good hands. Seems like you've had all the right tests and are heading in the right direction. I am sure at this point all you want in the thing out of our neck! I think we have all felt that way at one time or another. I'm vietman era, so I have many friends that went through what you did and are still dealing with the ghosts. I'm sorry you have another burden.
As for staging and exact answers, I believe until the actually see that monster and know the true size and check the lymph nodes for microscopic cancer you will not get the exact answers.
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- August 26, 2010 at 9:42 pm
Hey Mack,
MDA is certainly a great choice – maybe the best you could make. I am going there now and can't tell you how impressed I am with the doctors and staff. It is a large operation, but everyone is very caring and very competent in what they are doing. There is no better place for you right now, in my opinion. Read about this disease and learn for yourself, ask lots of questions, and don't think about yourself as a statistic!!! Take charge and don't be a victim. You have already been through worse in the military, it sounds like to me, so gear up for this fight and determine that you will be one of those who beat the "odds". There are some really promising treatments right now that are potential game changers. The stats in the next several years will not look like the ones you will see now about the past – look forward and not back. It takes some time to get past the shock and all the emotions that come after. Once you get a plan in place and feel that you are dealing with competent people who really care, I think your feelings will change quite a bit – I know mine did.
Best Wishes,
Jim in Denver
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- August 26, 2010 at 9:42 pm
Hey Mack,
MDA is certainly a great choice – maybe the best you could make. I am going there now and can't tell you how impressed I am with the doctors and staff. It is a large operation, but everyone is very caring and very competent in what they are doing. There is no better place for you right now, in my opinion. Read about this disease and learn for yourself, ask lots of questions, and don't think about yourself as a statistic!!! Take charge and don't be a victim. You have already been through worse in the military, it sounds like to me, so gear up for this fight and determine that you will be one of those who beat the "odds". There are some really promising treatments right now that are potential game changers. The stats in the next several years will not look like the ones you will see now about the past – look forward and not back. It takes some time to get past the shock and all the emotions that come after. Once you get a plan in place and feel that you are dealing with competent people who really care, I think your feelings will change quite a bit – I know mine did.
Best Wishes,
Jim in Denver
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- August 26, 2010 at 4:54 pm
Sharyn
I appreciate your response as well as the rest who have and will respond. I have no faith in the doctors but no nothing of what is going on at this point. They have not staged me if I am saying this correctly. They have performed several tests and stilllhave not told me anything I can wrap my head around. They are sending me to MDA in Houston blind. I will be looking things up but what I really want is them to get this Tumor out of my neck. I think this is common among the newly diagnosis but the doctors are not making it any easier. My doctor recommended me to MDA because he was unsure of how to proceed but he gave me no other information. My oncologist seemed positive about the results but now is taking a step back. So the Stress builds. Sorry to all reading this and feeling my frustration but this is how my experience has been. I have been to places and done things no human wants to do with the military that were easier for me to deal with. This is something just out of reach and I don't have enough facts yet to make a decision
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- August 26, 2010 at 4:25 pm
I hope you check in at least to read the responses to this post. It's your choice to abandon this board, but I just wanted to tell you that you should reconsider. I didn't find this board until a year after my diagnosis, and how I wish I had found it sooner! Like you, I knew nothing about melanoma, and put all my trust in the doctors. Now, from all that I have learned from the wonderful people on this board, I know that some poor decisions were made after my diagnosis, but at the time, I didn't know any better. This board opened up a world of clinical trials, treatment options that are not available where I live, and phenomenal advice, sharing and support. I have made cyber friends all over the world, some of whom I have met and continue to correspond with. I know you're overwhelmed, but this board is probably the BEST resource you will ever find. By the way, my initial prognosis was 3 mos-3 yrs. I'm still here 5 years later, and nowhere near the end. To see me, I look like the picture of health. And I credit this board for that.
Hugs
Sharyn
Stage IV
FYI, here are some explanations of some of the acronyms you'll come across. Learn them, as they will become part of your daily vocabulary. Google each one to find out more information. Any other acronyms that you don't understand, just ask.
NED – No Evidence of Disease
WLE – Wide local excision
SNB – Sentinal node biopsy
LND – Lymph node Dissection
ILP – Isolated Limb Perfusion
ILI – Isolated Limb Infusion
WBR – Whole Brain Radiation
SRS – Stereotactic Radiation Surgery (3 types, Gamma knife, Cyberknife, Novalis)
Some of the more common treatments you'll read about:
INF – Interferon (an immunotherapy)
TMZ – Temodar, aka Temodol, aka Temozolomide (chemo in pill form, crosses the blood brain barrier)
DTIC – dacarbazine (chemo)
IPI – ipilimumab (immunotherapy)
GM-CSF – Granulocyte Macrophage Colony Stimulating Factor (aka Leukine)
IL-2 – Interleukine 2
B-RAF, MEK, C-KIT, N-RAS, etc – These are all gene mutations found in a patient's DNA, identified from a genetic profiling.
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- August 26, 2010 at 8:49 pm
By" improve my outlook" do you mean improve my chances? if so, you may be mistaken definitely hang out, it has definitely improved many peoples chances, including mine. But, if you feel yourself getting depressed reading through all of this crap, it isn't going to hurt to take a break and check back once you have calmed down, and don't think everything bad will happen to you.
Take Care
John
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- August 26, 2010 at 8:49 pm
By" improve my outlook" do you mean improve my chances? if so, you may be mistaken definitely hang out, it has definitely improved many peoples chances, including mine. But, if you feel yourself getting depressed reading through all of this crap, it isn't going to hurt to take a break and check back once you have calmed down, and don't think everything bad will happen to you.
Take Care
John
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- August 26, 2010 at 10:11 pm
I think we all understand and can relate to just how scary the melanoma diagnosis can be and that the waiting for test results and treatment options is the worst!! When my husband was diagnosed with muscosal melanoma in Jan/Feb 2010, I immediately went onto general web sites that listed the poor prognosis of his particular muscosal (rectum) melanoma and I became very depressed and discouraged. Then, my husband found the MRF Bulletin and now this is the only place I go for melanoma information. We both read these bulletins daily and the stories and medical information have been so valuable to us, as we try to look ahead.
So the only advice I give anyone facing this fight, is to do what feels right for you at the moment, and just know that if you need a break from this Bulletin as you adjust to your new reality, always remember that this Bulletin will still be here when you are ready and wonderful (and yes, sometimes scary and sad) information awaits. It took us a few months after Phil's surgery to truly appreciate the stories of hope, strength, and courage from all the melanoma patients and family members that take the time to share their journey. I now feel I am never alone. God Bless! Valerie (Phil's Wife)
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- August 26, 2010 at 10:11 pm
I think we all understand and can relate to just how scary the melanoma diagnosis can be and that the waiting for test results and treatment options is the worst!! When my husband was diagnosed with muscosal melanoma in Jan/Feb 2010, I immediately went onto general web sites that listed the poor prognosis of his particular muscosal (rectum) melanoma and I became very depressed and discouraged. Then, my husband found the MRF Bulletin and now this is the only place I go for melanoma information. We both read these bulletins daily and the stories and medical information have been so valuable to us, as we try to look ahead.
So the only advice I give anyone facing this fight, is to do what feels right for you at the moment, and just know that if you need a break from this Bulletin as you adjust to your new reality, always remember that this Bulletin will still be here when you are ready and wonderful (and yes, sometimes scary and sad) information awaits. It took us a few months after Phil's surgery to truly appreciate the stories of hope, strength, and courage from all the melanoma patients and family members that take the time to share their journey. I now feel I am never alone. God Bless! Valerie (Phil's Wife)
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