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“Free margins” in LND???

Forums General Melanoma Community “Free margins” in LND???

  • Post
    jax2007gxp
    Participant

      Hello again,

      Hello again,

      Saw the doc today…everything is progressing nicely.  I still have the one drain, but I'm not terribly worried about it at the moment.  I think for the first time, I am finally starting to understand, or maybe be willing to face, the actual severity (read: mortality) of my situation.  I have told myself time and again…don't worry, you'll be fine, it could be so much worse.  But the fact is, at IIIc I am not really "fine".  I finally asked the doc about survival rates in my situation…something I've frankly been avoiding.  I really didn't like his answer…50/50 for 5 years.  This just seems like a low number especially in light of other data I've reviewed in the last 24 hours.

      So…I've been searching for clinical trials that might give me a shot at trying Yervoy instead of interferon.  Since my mel was resected, the options are more than thin….they are almost non-existent.  Most trials for stage 3 require the tumor(s) to be unresectable.  But, I did find one which is being conducted in many hospitals nationally which compares Yervoy to interferon for stage IIIb, IIIc and some IV patients.  Other than one piece of the qualifying puzzle, I seem to fit the requirements.  The info states that a patient can still be qualified with disease recurrence after excision of original primary if the recurrence is in a regional lymph node basin and the disease was completely surgically resected with free margins.  How can an LND have free margins?  It's a mass of goo, right?

      It doesn't look like I have a lot of options…for now.  And even if I can qualify for this study, it's still not a guarantee of receiving Yervoy since half the patients will get the high dose interferon.  But, I figure I would at least have a shot.  I'll be calling them tomorrow to see what I can learn.  In the meantime, I'm not expecting to get a lot of sleep tonight.  But, who knows, it's been a tough day for me mentally and emotionally…no crying fits..at least not yet (lol) but it has been a bit exhausting.

      Sorry for the length of this…I'm not quite ready to lay this out for those closest to me yet and you guys are the best sounding boards out there.  I need to figure it out first…or at least wrap my head around it a little more.  One more thing I had to come to terms with…no kids for me.  I was still hoping, but he made it pretty clear today that it is an unnecessary risk to myself and the unborn child…even after treatment ends, due to high risk of recurrence.  Like I said…big day for me.

      Much love and many prayers for everyone!

      Jacki

    Viewing 17 reply threads
    • Replies
        Vermont_Donna
        Participant

          Hi Jacki,

          I am sorry that you are dealing with everything…surgery, the stage 3c diagnosis, your doctor recommending "no kids", and seaching for a clinical trial to particpate in. There is definitely HOPE and you should hang on to that!! There are many people LIVING years with stage 3 and stage 4 melanoma cancer. I am concerned that you havent shared much with your closest support people….do you feel you have to have all the decisions made and then inform them?? it may be good to share with them, cry, and explore different scenarios. I do though understand what you may be feeling about mortality issues and sometimes that is such an "internal" process that you need to wallow in that first then you "regroup" and can move forward with treatment option decisions and also sharing with loved ones. I am glad that you have come to this board for information and support. I hope you feel better from the surgery etc soon.

          Vermont_Donna, stage 3a, now NED due to yervoy

            jax2007gxp
            Participant

              Thanks for the reminder, Donna.  Like I imagine most people feel, there are so many things I want to do, see, and experience.  It is frustrating when recovery followed by treatment seems to put the brakes on all of that doing, see, and experiencing…at least for a little while.  Today, I am sitting on my couch with the slider open…listening to the rain.  Joyous!!!

              I do share bits and pieces with my sister, dad, and a couple of friends but I don't think I have been totally open about how I feel about all of it.  Mostly, I tell them "the facts" but less about how I am coping with it.  A peer at work told me recently that he sees me like an island, and suspects I like it that way.  That stung a bit, but probably because it hit a nerve dead on.  It's not necessarily how I want to live, but more how I've learned to live.  I think you are right, though.  I need to be more open with my feelings and let others help me cope.  I don't have to be in it alone…on my island. 😉

              Jacki

              jax2007gxp
              Participant

                Thanks for the reminder, Donna.  Like I imagine most people feel, there are so many things I want to do, see, and experience.  It is frustrating when recovery followed by treatment seems to put the brakes on all of that doing, see, and experiencing…at least for a little while.  Today, I am sitting on my couch with the slider open…listening to the rain.  Joyous!!!

                I do share bits and pieces with my sister, dad, and a couple of friends but I don't think I have been totally open about how I feel about all of it.  Mostly, I tell them "the facts" but less about how I am coping with it.  A peer at work told me recently that he sees me like an island, and suspects I like it that way.  That stung a bit, but probably because it hit a nerve dead on.  It's not necessarily how I want to live, but more how I've learned to live.  I think you are right, though.  I need to be more open with my feelings and let others help me cope.  I don't have to be in it alone…on my island. 😉

                Jacki

                jax2007gxp
                Participant

                  Thanks for the reminder, Donna.  Like I imagine most people feel, there are so many things I want to do, see, and experience.  It is frustrating when recovery followed by treatment seems to put the brakes on all of that doing, see, and experiencing…at least for a little while.  Today, I am sitting on my couch with the slider open…listening to the rain.  Joyous!!!

                  I do share bits and pieces with my sister, dad, and a couple of friends but I don't think I have been totally open about how I feel about all of it.  Mostly, I tell them "the facts" but less about how I am coping with it.  A peer at work told me recently that he sees me like an island, and suspects I like it that way.  That stung a bit, but probably because it hit a nerve dead on.  It's not necessarily how I want to live, but more how I've learned to live.  I think you are right, though.  I need to be more open with my feelings and let others help me cope.  I don't have to be in it alone…on my island. 😉

                  Jacki

                Vermont_Donna
                Participant

                  Hi Jacki,

                  I am sorry that you are dealing with everything…surgery, the stage 3c diagnosis, your doctor recommending "no kids", and seaching for a clinical trial to particpate in. There is definitely HOPE and you should hang on to that!! There are many people LIVING years with stage 3 and stage 4 melanoma cancer. I am concerned that you havent shared much with your closest support people….do you feel you have to have all the decisions made and then inform them?? it may be good to share with them, cry, and explore different scenarios. I do though understand what you may be feeling about mortality issues and sometimes that is such an "internal" process that you need to wallow in that first then you "regroup" and can move forward with treatment option decisions and also sharing with loved ones. I am glad that you have come to this board for information and support. I hope you feel better from the surgery etc soon.

                  Vermont_Donna, stage 3a, now NED due to yervoy

                  Vermont_Donna
                  Participant

                    Hi Jacki,

                    I am sorry that you are dealing with everything…surgery, the stage 3c diagnosis, your doctor recommending "no kids", and seaching for a clinical trial to particpate in. There is definitely HOPE and you should hang on to that!! There are many people LIVING years with stage 3 and stage 4 melanoma cancer. I am concerned that you havent shared much with your closest support people….do you feel you have to have all the decisions made and then inform them?? it may be good to share with them, cry, and explore different scenarios. I do though understand what you may be feeling about mortality issues and sometimes that is such an "internal" process that you need to wallow in that first then you "regroup" and can move forward with treatment option decisions and also sharing with loved ones. I am glad that you have come to this board for information and support. I hope you feel better from the surgery etc soon.

                    Vermont_Donna, stage 3a, now NED due to yervoy

                    Hereiam
                    Participant

                      Hi Jacki,

                      I am very sorry for this hard day on you. I truly hope you get more emotionally stable soon.

                      As to those questions of morality, I think that you have been concentrating on how long you`ll live so much, that you barely pay attention to the fact, that you are living now! You are already living now, so try to enjoy it, experience it, explore it as much as you can. Because that huge concentration on your future is stopping you from living in the present! I know its hard, and its somehow easier to think about past, and easier to try to imagine your future. I really hope that you understand the picture I`m drawing. 

                      I can only agree, that knowing the fact that you can`t have kids is mind-blowing. As you know, no one can really say anything that would make it easier for you. But maybe try to concentrate on people who you are surrounded by, and try to give all your motherly love to them!

                      I`m sorry if I can`t quite comfort you, but I hope that my thoughts can somehow make it easier for you.

                      Wishing you all the best!

                      Hereiam
                      Participant

                        Hi Jacki,

                        I am very sorry for this hard day on you. I truly hope you get more emotionally stable soon.

                        As to those questions of morality, I think that you have been concentrating on how long you`ll live so much, that you barely pay attention to the fact, that you are living now! You are already living now, so try to enjoy it, experience it, explore it as much as you can. Because that huge concentration on your future is stopping you from living in the present! I know its hard, and its somehow easier to think about past, and easier to try to imagine your future. I really hope that you understand the picture I`m drawing. 

                        I can only agree, that knowing the fact that you can`t have kids is mind-blowing. As you know, no one can really say anything that would make it easier for you. But maybe try to concentrate on people who you are surrounded by, and try to give all your motherly love to them!

                        I`m sorry if I can`t quite comfort you, but I hope that my thoughts can somehow make it easier for you.

                        Wishing you all the best!

                        Hereiam
                        Participant

                          Hi Jacki,

                          I am very sorry for this hard day on you. I truly hope you get more emotionally stable soon.

                          As to those questions of morality, I think that you have been concentrating on how long you`ll live so much, that you barely pay attention to the fact, that you are living now! You are already living now, so try to enjoy it, experience it, explore it as much as you can. Because that huge concentration on your future is stopping you from living in the present! I know its hard, and its somehow easier to think about past, and easier to try to imagine your future. I really hope that you understand the picture I`m drawing. 

                          I can only agree, that knowing the fact that you can`t have kids is mind-blowing. As you know, no one can really say anything that would make it easier for you. But maybe try to concentrate on people who you are surrounded by, and try to give all your motherly love to them!

                          I`m sorry if I can`t quite comfort you, but I hope that my thoughts can somehow make it easier for you.

                          Wishing you all the best!

                            jax2007gxp
                            Participant

                              Thank you, A.  I am a bit of a control freak…always need a plan.  So, this is a challenge for me…to have such limited control or even influence.  The kids piece was a bit of a surprise.  I knew the clock was ticking loudly, but I always had a plan b (on my own) and even plan 3 (adoption).  See, I always have a plan.  ha  But now, my plans have been kicked back.  I guess it's true….when we make plans, God laughs.

                              Jacki

                              jax2007gxp
                              Participant

                                Thank you, A.  I am a bit of a control freak…always need a plan.  So, this is a challenge for me…to have such limited control or even influence.  The kids piece was a bit of a surprise.  I knew the clock was ticking loudly, but I always had a plan b (on my own) and even plan 3 (adoption).  See, I always have a plan.  ha  But now, my plans have been kicked back.  I guess it's true….when we make plans, God laughs.

                                Jacki

                                jax2007gxp
                                Participant

                                  Thank you, A.  I am a bit of a control freak…always need a plan.  So, this is a challenge for me…to have such limited control or even influence.  The kids piece was a bit of a surprise.  I knew the clock was ticking loudly, but I always had a plan b (on my own) and even plan 3 (adoption).  See, I always have a plan.  ha  But now, my plans have been kicked back.  I guess it's true….when we make plans, God laughs.

                                  Jacki

                                dian in spokane
                                Participant

                                  Jacki,

                                  I'm glad to see you looking at some clinical trials. Did you also discuss the interferon time frame with your doc? I know you were dreading being in treatment over the holidays. If you start your interferon within the required time frame, you'd actually be done with your first month before the holidays. You might not be feeling up to a big Thanksgiving meal, but you'd at least be done with the first, hardest month before Christmas, and maybe even before Thanksgiving if you get going in the next couple of weeks.

                                  Also, keep in mind that while it might be a touch frustrating that you don't have many choices because you are NED, you are also very lucky to be NED! It's what we all strive for.

                                  Also, there are a lot of folks here who are stage 3C and going strong for many years. Some have done interferon or some trial, but some have also gone the 'observation only' route. So try to remember that you may go forever without having another run in with melanoma, or if not, it could be many many years

                                  Good luck to you, and I hope to see you in chat again,

                                   

                                  dian

                                  dian in spokane
                                  Participant

                                    Jacki,

                                    I'm glad to see you looking at some clinical trials. Did you also discuss the interferon time frame with your doc? I know you were dreading being in treatment over the holidays. If you start your interferon within the required time frame, you'd actually be done with your first month before the holidays. You might not be feeling up to a big Thanksgiving meal, but you'd at least be done with the first, hardest month before Christmas, and maybe even before Thanksgiving if you get going in the next couple of weeks.

                                    Also, keep in mind that while it might be a touch frustrating that you don't have many choices because you are NED, you are also very lucky to be NED! It's what we all strive for.

                                    Also, there are a lot of folks here who are stage 3C and going strong for many years. Some have done interferon or some trial, but some have also gone the 'observation only' route. So try to remember that you may go forever without having another run in with melanoma, or if not, it could be many many years

                                    Good luck to you, and I hope to see you in chat again,

                                     

                                    dian

                                    dian in spokane
                                    Participant

                                      Jacki,

                                      I'm glad to see you looking at some clinical trials. Did you also discuss the interferon time frame with your doc? I know you were dreading being in treatment over the holidays. If you start your interferon within the required time frame, you'd actually be done with your first month before the holidays. You might not be feeling up to a big Thanksgiving meal, but you'd at least be done with the first, hardest month before Christmas, and maybe even before Thanksgiving if you get going in the next couple of weeks.

                                      Also, keep in mind that while it might be a touch frustrating that you don't have many choices because you are NED, you are also very lucky to be NED! It's what we all strive for.

                                      Also, there are a lot of folks here who are stage 3C and going strong for many years. Some have done interferon or some trial, but some have also gone the 'observation only' route. So try to remember that you may go forever without having another run in with melanoma, or if not, it could be many many years

                                      Good luck to you, and I hope to see you in chat again,

                                       

                                      dian

                                        jax2007gxp
                                        Participant

                                          Hi Dian,

                                          I will be looking for you in chat again soon.  I like your way of thinking…and how you explain things…to the point.  🙂

                                          As for interferon timing…I did some research myself and then confirmed with doc…high dose interferon should start with 56 days of surgery while peg- can start up to 84 days from surgery.  He felt both are pretty equal while peg- is easier to stomach, it is a 5-year committment rather than 1 nasty month of high dose followed by just 11 months of maintenance shots.  I have calls in to the onc and to St Joseph's about the clinical trial.  After reading some other posts, maybe I should wait on the Yervoy anyway.  Who knows…another promising trial may be on the horizon and the use of Yervoy could exclude me.  And if I do progress to stage 4, the Yervoy may be a limiting factor to treatment options then too.  Oh, and I did find out I am BRAF negative, wild type.

                                          I'll try to stay positive and cling to NED like he's the last "normal" man on a singles cruise!  I think once I am able to get through month 1 of the interferon and start feeling like myself, I will be in a better place.  Just need to get there!  I appreciate your support in helping me get there.

                                          Thank you again,

                                          Jacki

                                          jax2007gxp
                                          Participant

                                            Hi Dian,

                                            I will be looking for you in chat again soon.  I like your way of thinking…and how you explain things…to the point.  🙂

                                            As for interferon timing…I did some research myself and then confirmed with doc…high dose interferon should start with 56 days of surgery while peg- can start up to 84 days from surgery.  He felt both are pretty equal while peg- is easier to stomach, it is a 5-year committment rather than 1 nasty month of high dose followed by just 11 months of maintenance shots.  I have calls in to the onc and to St Joseph's about the clinical trial.  After reading some other posts, maybe I should wait on the Yervoy anyway.  Who knows…another promising trial may be on the horizon and the use of Yervoy could exclude me.  And if I do progress to stage 4, the Yervoy may be a limiting factor to treatment options then too.  Oh, and I did find out I am BRAF negative, wild type.

                                            I'll try to stay positive and cling to NED like he's the last "normal" man on a singles cruise!  I think once I am able to get through month 1 of the interferon and start feeling like myself, I will be in a better place.  Just need to get there!  I appreciate your support in helping me get there.

                                            Thank you again,

                                            Jacki

                                            jax2007gxp
                                            Participant

                                              Hi Dian,

                                              I will be looking for you in chat again soon.  I like your way of thinking…and how you explain things…to the point.  🙂

                                              As for interferon timing…I did some research myself and then confirmed with doc…high dose interferon should start with 56 days of surgery while peg- can start up to 84 days from surgery.  He felt both are pretty equal while peg- is easier to stomach, it is a 5-year committment rather than 1 nasty month of high dose followed by just 11 months of maintenance shots.  I have calls in to the onc and to St Joseph's about the clinical trial.  After reading some other posts, maybe I should wait on the Yervoy anyway.  Who knows…another promising trial may be on the horizon and the use of Yervoy could exclude me.  And if I do progress to stage 4, the Yervoy may be a limiting factor to treatment options then too.  Oh, and I did find out I am BRAF negative, wild type.

                                              I'll try to stay positive and cling to NED like he's the last "normal" man on a singles cruise!  I think once I am able to get through month 1 of the interferon and start feeling like myself, I will be in a better place.  Just need to get there!  I appreciate your support in helping me get there.

                                              Thank you again,

                                              Jacki

                                            killmel
                                            Participant

                                              Hi Jacki,

                                              I know that hearing ofo like yesterday is unnerving. but you have a great attitude& that is half the battle.

                                              How is your leg. Is it still numb & how is the lymphedema? Are you taking lymphedema treatments?

                                              Ann

                                                jax2007gxp
                                                Participant

                                                  Thanks, Ann.  Leg is recovering pretty well.  As for the numbness, I would say it has improved about 2%.  Not much, but I am encouraged by any change for the better.  The pain, on the other hand, could really stand to improve faster!  It is about 5% better, but when you are talking pain in the leg, it can be limiting.  Still no lymphedema…yippee!!!  See, I need to be reminded of the good things I have going for me.  My thigh swells with too much activity but the specialist told me this is to be expected for up to two months post-op and not to stress over it too much.  I am doing the lymphedema massage technique every couple of days as a precautionary act (me having to feel like I have some control, ya know).

                                                  Thanks again for your kind words and checking in on me.

                                                  Jacki

                                                  killmel
                                                  Participant

                                                    Hi Jacki

                                                    Good to hear your leg is coming along.

                                                    You mentioned "My thigh swells with too much activity but the specialist told me this is to be expected for up to two months post-op and not to stress over it too much.

                                                    I have had many surgery on my leg.I would like to see a specialist to evaluate my numbness, swelling, lymphedma in my leg.

                                                    What kind of specialist/doctor are you seeing. Does the doctor specialize legs?

                                                    I live in Southern California & do not mind traveling. I would appreciate the name & contact info on the doctor you are seeing.

                                                    Who do you see for your lyphedema  therapy?

                                                    Thanks,

                                                    Ann

                                                    jax2007gxp
                                                    Participant

                                                      Hi Ann,

                                                      I am sorry to read about the issues you are having with your leg.  Multiple surgeries must be very difficult.  But, I am glad you are here and sharing…it's not always easy, I know.

                                                      My surgeon referred me to the Lymphedema Center at St. Joseph Hospital in Orange.  Depending on your insurance, you will likely need a referral from your doctor.  Their phone number is (714) 542-8002.  The address is 1010 W. La Veta, Orange, CA  92868.  My appointment was with Connie.  She was an angel….soooooo patient with me and spent about an hour with me even though there really wasn't anything she needed to physically do (e.g. perform massage).  She answered tons of questions and educated me so I have a better understanding of what is normal versus what could be signs of lymphedema, and more importantly for me…really explaining the do's and don'ts (e.g. when do I really need to wear compression stockings, keeping active versus over-doing it).  She was also not afraid to offer her professional opinion about the surgeon's prescription for the stockings….way overkill for my current state!  When I told the surgeon, he immediately made the adjustment to the prescription…he is a surgeon while she is the pro for lymphedma.  Ironically, my treating hospital has a lymphedema clinic too, but while my surgeon says he thinks they are good, he thinks St. Joe's staff is better for this specialty.

                                                      Let me know if you have any more questions.  I am happy to offer anything I have for you.  Are you expected to require any additional surgeries in the short term?  What part of So Cal are you?  I live in Rancho Cucamonga, but I drive to Orange for my doctors.  After doing some research, I feel most comfortable there…great doctors, wonderful staff, and an easier drive than LA!

                                                      All my best,

                                                      Jacki 

                                                      jax2007gxp
                                                      Participant

                                                        Hi Ann,

                                                        I am sorry to read about the issues you are having with your leg.  Multiple surgeries must be very difficult.  But, I am glad you are here and sharing…it's not always easy, I know.

                                                        My surgeon referred me to the Lymphedema Center at St. Joseph Hospital in Orange.  Depending on your insurance, you will likely need a referral from your doctor.  Their phone number is (714) 542-8002.  The address is 1010 W. La Veta, Orange, CA  92868.  My appointment was with Connie.  She was an angel….soooooo patient with me and spent about an hour with me even though there really wasn't anything she needed to physically do (e.g. perform massage).  She answered tons of questions and educated me so I have a better understanding of what is normal versus what could be signs of lymphedema, and more importantly for me…really explaining the do's and don'ts (e.g. when do I really need to wear compression stockings, keeping active versus over-doing it).  She was also not afraid to offer her professional opinion about the surgeon's prescription for the stockings….way overkill for my current state!  When I told the surgeon, he immediately made the adjustment to the prescription…he is a surgeon while she is the pro for lymphedma.  Ironically, my treating hospital has a lymphedema clinic too, but while my surgeon says he thinks they are good, he thinks St. Joe's staff is better for this specialty.

                                                        Let me know if you have any more questions.  I am happy to offer anything I have for you.  Are you expected to require any additional surgeries in the short term?  What part of So Cal are you?  I live in Rancho Cucamonga, but I drive to Orange for my doctors.  After doing some research, I feel most comfortable there…great doctors, wonderful staff, and an easier drive than LA!

                                                        All my best,

                                                        Jacki 

                                                        jax2007gxp
                                                        Participant

                                                          Hi Ann,

                                                          I am sorry to read about the issues you are having with your leg.  Multiple surgeries must be very difficult.  But, I am glad you are here and sharing…it's not always easy, I know.

                                                          My surgeon referred me to the Lymphedema Center at St. Joseph Hospital in Orange.  Depending on your insurance, you will likely need a referral from your doctor.  Their phone number is (714) 542-8002.  The address is 1010 W. La Veta, Orange, CA  92868.  My appointment was with Connie.  She was an angel….soooooo patient with me and spent about an hour with me even though there really wasn't anything she needed to physically do (e.g. perform massage).  She answered tons of questions and educated me so I have a better understanding of what is normal versus what could be signs of lymphedema, and more importantly for me…really explaining the do's and don'ts (e.g. when do I really need to wear compression stockings, keeping active versus over-doing it).  She was also not afraid to offer her professional opinion about the surgeon's prescription for the stockings….way overkill for my current state!  When I told the surgeon, he immediately made the adjustment to the prescription…he is a surgeon while she is the pro for lymphedma.  Ironically, my treating hospital has a lymphedema clinic too, but while my surgeon says he thinks they are good, he thinks St. Joe's staff is better for this specialty.

                                                          Let me know if you have any more questions.  I am happy to offer anything I have for you.  Are you expected to require any additional surgeries in the short term?  What part of So Cal are you?  I live in Rancho Cucamonga, but I drive to Orange for my doctors.  After doing some research, I feel most comfortable there…great doctors, wonderful staff, and an easier drive than LA!

                                                          All my best,

                                                          Jacki 

                                                          killmel
                                                          Participant

                                                            Hi Jacki

                                                            Good to hear your leg is coming along.

                                                            You mentioned "My thigh swells with too much activity but the specialist told me this is to be expected for up to two months post-op and not to stress over it too much.

                                                            I have had many surgery on my leg.I would like to see a specialist to evaluate my numbness, swelling, lymphedma in my leg.

                                                            What kind of specialist/doctor are you seeing. Does the doctor specialize legs?

                                                            I live in Southern California & do not mind traveling. I would appreciate the name & contact info on the doctor you are seeing.

                                                            Who do you see for your lyphedema  therapy?

                                                            Thanks,

                                                            Ann

                                                            killmel
                                                            Participant

                                                              Hi Jacki

                                                              Good to hear your leg is coming along.

                                                              You mentioned "My thigh swells with too much activity but the specialist told me this is to be expected for up to two months post-op and not to stress over it too much.

                                                              I have had many surgery on my leg.I would like to see a specialist to evaluate my numbness, swelling, lymphedma in my leg.

                                                              What kind of specialist/doctor are you seeing. Does the doctor specialize legs?

                                                              I live in Southern California & do not mind traveling. I would appreciate the name & contact info on the doctor you are seeing.

                                                              Who do you see for your lyphedema  therapy?

                                                              Thanks,

                                                              Ann

                                                              jax2007gxp
                                                              Participant

                                                                Thanks, Ann.  Leg is recovering pretty well.  As for the numbness, I would say it has improved about 2%.  Not much, but I am encouraged by any change for the better.  The pain, on the other hand, could really stand to improve faster!  It is about 5% better, but when you are talking pain in the leg, it can be limiting.  Still no lymphedema…yippee!!!  See, I need to be reminded of the good things I have going for me.  My thigh swells with too much activity but the specialist told me this is to be expected for up to two months post-op and not to stress over it too much.  I am doing the lymphedema massage technique every couple of days as a precautionary act (me having to feel like I have some control, ya know).

                                                                Thanks again for your kind words and checking in on me.

                                                                Jacki

                                                                jax2007gxp
                                                                Participant

                                                                  Thanks, Ann.  Leg is recovering pretty well.  As for the numbness, I would say it has improved about 2%.  Not much, but I am encouraged by any change for the better.  The pain, on the other hand, could really stand to improve faster!  It is about 5% better, but when you are talking pain in the leg, it can be limiting.  Still no lymphedema…yippee!!!  See, I need to be reminded of the good things I have going for me.  My thigh swells with too much activity but the specialist told me this is to be expected for up to two months post-op and not to stress over it too much.  I am doing the lymphedema massage technique every couple of days as a precautionary act (me having to feel like I have some control, ya know).

                                                                  Thanks again for your kind words and checking in on me.

                                                                  Jacki

                                                                killmel
                                                                Participant

                                                                  Hi Jacki,

                                                                  I know that hearing ofo like yesterday is unnerving. but you have a great attitude& that is half the battle.

                                                                  How is your leg. Is it still numb & how is the lymphedema? Are you taking lymphedema treatments?

                                                                  Ann

                                                                  killmel
                                                                  Participant

                                                                    Hi Jacki,

                                                                    I know that hearing ofo like yesterday is unnerving. but you have a great attitude& that is half the battle.

                                                                    How is your leg. Is it still numb & how is the lymphedema? Are you taking lymphedema treatments?

                                                                    Ann

                                                                    JerryfromFauq
                                                                    Participant

                                                                      Jacki,

                                                                      You have asked a question that is making me think and research.  There is a difference in standalone tumors and melanoma in lymphnodes.  The folloowig is what crosses my mind, hopefully someone else can provide some references that either agrees or disagrees with my thinking. 

                                                                         I have not yet found anything that discusses a difference in definition of the term "Free margin" between the two. In a seperate tumor it is more likely just an enclosed mass of "goo".   The difference I see would be that in a lymph node basin, the node is directly connected to lymph channels and close proximity to other nodes.  The biggest thing I have ran across seems to be whether the nodes in the basin are matted or/and have extracapsular extension.  (I had both in my groin disection in 2007.)  In my case tissue was pathalogically examined during the operation to double chek for clear margins.  The clear margins were found, but lung tumors were already forming and were discovered within 30 days of the groin dissection.  Two years later, I found a soft tissue tumor growing in the area the surgeon had told me was where the extracapsular extension had been.  (I paid special attention to that area.)  In the 3 years since that tumors removal, I have had no new tumors in that area. 

                                                                      I would think (and argue) that for the purposes of the trial that you are looking at, that a complete resection was done with clear margins.  I would argue that the report says clear margins and that the PET scan showed no extension of melanoma into the deeper node basin. 

                                                                        

                                                                        jax2007gxp
                                                                        Participant

                                                                          Thanks, Jerry.  Just as I suspected…clear as mud!  lol  Really though, it is a puzzler.  I'll be sure to share if I can any sort of comprehensible answer from the people at the trial.  Since my Cloquets was positive for micromets and he left the rest of the deep nodes in place, I wonder if they would disqualify me anyhoo.  Again, I'll be sure to share!

                                                                          Just curious…how were the lung tumors discovered only 30 days after the LND?

                                                                          Thanks,

                                                                          Jacki 

                                                                          JerryfromFauq
                                                                          Participant

                                                                            Even with the positive Cloquets, I would still argue.  Didn't the report say the Cloquet had clear margins?  Get yoour Doc to argue that for you if you want the trial.

                                                                            Finding the stage IV in Lungs was due to my good luck!  After four years of GP and local surgeon dragging ass, I finally got to a great surgeon that is a great melanoma specialist that knows this disease.  He accelerated their normal procedures by two months to get me in for an early evaluation and lymph node surgery.  The night before the groin lymph node surgery, while bathing, I felt a lump near where the "hemorrohoid"  and two other melanomas had finally been removed by the local surgeon.  While on the operating table I told my Melanoma Specialist Surgeon about the lump.  He decided to remove it with a narrow margin, since he was doing major surgery on the superficial and deep groin nodes in the front.  (He said that I needed to have some place to be able to lay on after the extensive front operation.)  Said he would do a WLE two months later on the rear.  I was doing so well after the operation that he was ready to check me out after a month, before doing the rear WLE.  Knowing what a mass he had removed in late January and knowing that the most common place for the melanoma to metastasize to was ones lungs, he had a chest x-ray done.  It found suspicious signs.  The lung doctors tried a FNA to see if it was melanoma.  They injuried a nerve with the needle, punctured my lung, partially deflatiing it, sliced a blood vessel which resulted in blood pouring through my lung and out my mouth. (FNA was inconclusive.)  The surgeon then went to CT's and really didn't like all the tumors he saw.  He referred me to the head of the Medical Oncology Department there (UVA) and I immediately went to IL-2.  

                                                                               See, I was lucky!  Just imagine if the Surgeon had slow rolled things like the others had done for 4 years, if he had not listened to me about the new lump, had waited to check it, had not knew to check my lungs even before doing the WLE on the new ass tumor!  SEE WHY I DON'T WANT TO CHANGE MELANOMA TEAMS! 

                                                                            Ain't I lucky for such an unlucky person?  (This is the same surgeon that I showed my battered, bloody, unconcious picture from the Denvr NICU and asked him if I could blame this on him  I then told him that if he hadn't saved my life 4 years ago, I couldn't have done something so stupid as to get in the bloody condition.  (He finally grinned.)!

                                                                            JerryfromFauq
                                                                            Participant

                                                                              Even with the positive Cloquets, I would still argue.  Didn't the report say the Cloquet had clear margins?  Get yoour Doc to argue that for you if you want the trial.

                                                                              Finding the stage IV in Lungs was due to my good luck!  After four years of GP and local surgeon dragging ass, I finally got to a great surgeon that is a great melanoma specialist that knows this disease.  He accelerated their normal procedures by two months to get me in for an early evaluation and lymph node surgery.  The night before the groin lymph node surgery, while bathing, I felt a lump near where the "hemorrohoid"  and two other melanomas had finally been removed by the local surgeon.  While on the operating table I told my Melanoma Specialist Surgeon about the lump.  He decided to remove it with a narrow margin, since he was doing major surgery on the superficial and deep groin nodes in the front.  (He said that I needed to have some place to be able to lay on after the extensive front operation.)  Said he would do a WLE two months later on the rear.  I was doing so well after the operation that he was ready to check me out after a month, before doing the rear WLE.  Knowing what a mass he had removed in late January and knowing that the most common place for the melanoma to metastasize to was ones lungs, he had a chest x-ray done.  It found suspicious signs.  The lung doctors tried a FNA to see if it was melanoma.  They injuried a nerve with the needle, punctured my lung, partially deflatiing it, sliced a blood vessel which resulted in blood pouring through my lung and out my mouth. (FNA was inconclusive.)  The surgeon then went to CT's and really didn't like all the tumors he saw.  He referred me to the head of the Medical Oncology Department there (UVA) and I immediately went to IL-2.  

                                                                                 See, I was lucky!  Just imagine if the Surgeon had slow rolled things like the others had done for 4 years, if he had not listened to me about the new lump, had waited to check it, had not knew to check my lungs even before doing the WLE on the new ass tumor!  SEE WHY I DON'T WANT TO CHANGE MELANOMA TEAMS! 

                                                                              Ain't I lucky for such an unlucky person?  (This is the same surgeon that I showed my battered, bloody, unconcious picture from the Denvr NICU and asked him if I could blame this on him  I then told him that if he hadn't saved my life 4 years ago, I couldn't have done something so stupid as to get in the bloody condition.  (He finally grinned.)!

                                                                              jax2007gxp
                                                                              Participant

                                                                                Wow!  Jerry, you may be the luckiest unlucky guy I know!  But really, through all of this, I am still a believer that there is a plan.  Don't change a thing!  And good for you for bloodying yourself up!  You've earned it…just don't let it go too far…we all need you here!

                                                                                Oh, and to answer the question about the Cloquet's…since they removed the whole node and the mel was just a 1mm spot in the middle, I guess that would be a clear margin, yes?  I asked doc about the risk that it is in the deeper nodes and he thinks with the small spot in the Cloquet's that it is very unlikely it got down to the deep ones.

                                                                                Jacki

                                                                                jax2007gxp
                                                                                Participant

                                                                                  Wow!  Jerry, you may be the luckiest unlucky guy I know!  But really, through all of this, I am still a believer that there is a plan.  Don't change a thing!  And good for you for bloodying yourself up!  You've earned it…just don't let it go too far…we all need you here!

                                                                                  Oh, and to answer the question about the Cloquet's…since they removed the whole node and the mel was just a 1mm spot in the middle, I guess that would be a clear margin, yes?  I asked doc about the risk that it is in the deeper nodes and he thinks with the small spot in the Cloquet's that it is very unlikely it got down to the deep ones.

                                                                                  Jacki

                                                                                  jax2007gxp
                                                                                  Participant

                                                                                    Wow!  Jerry, you may be the luckiest unlucky guy I know!  But really, through all of this, I am still a believer that there is a plan.  Don't change a thing!  And good for you for bloodying yourself up!  You've earned it…just don't let it go too far…we all need you here!

                                                                                    Oh, and to answer the question about the Cloquet's…since they removed the whole node and the mel was just a 1mm spot in the middle, I guess that would be a clear margin, yes?  I asked doc about the risk that it is in the deeper nodes and he thinks with the small spot in the Cloquet's that it is very unlikely it got down to the deep ones.

                                                                                    Jacki

                                                                                    JerryfromFauq
                                                                                    Participant

                                                                                      Even with the positive Cloquets, I would still argue.  Didn't the report say the Cloquet had clear margins?  Get yoour Doc to argue that for you if you want the trial.

                                                                                      Finding the stage IV in Lungs was due to my good luck!  After four years of GP and local surgeon dragging ass, I finally got to a great surgeon that is a great melanoma specialist that knows this disease.  He accelerated their normal procedures by two months to get me in for an early evaluation and lymph node surgery.  The night before the groin lymph node surgery, while bathing, I felt a lump near where the "hemorrohoid"  and two other melanomas had finally been removed by the local surgeon.  While on the operating table I told my Melanoma Specialist Surgeon about the lump.  He decided to remove it with a narrow margin, since he was doing major surgery on the superficial and deep groin nodes in the front.  (He said that I needed to have some place to be able to lay on after the extensive front operation.)  Said he would do a WLE two months later on the rear.  I was doing so well after the operation that he was ready to check me out after a month, before doing the rear WLE.  Knowing what a mass he had removed in late January and knowing that the most common place for the melanoma to metastasize to was ones lungs, he had a chest x-ray done.  It found suspicious signs.  The lung doctors tried a FNA to see if it was melanoma.  They injuried a nerve with the needle, punctured my lung, partially deflatiing it, sliced a blood vessel which resulted in blood pouring through my lung and out my mouth. (FNA was inconclusive.)  The surgeon then went to CT's and really didn't like all the tumors he saw.  He referred me to the head of the Medical Oncology Department there (UVA) and I immediately went to IL-2.  

                                                                                         See, I was lucky!  Just imagine if the Surgeon had slow rolled things like the others had done for 4 years, if he had not listened to me about the new lump, had waited to check it, had not knew to check my lungs even before doing the WLE on the new ass tumor!  SEE WHY I DON'T WANT TO CHANGE MELANOMA TEAMS! 

                                                                                      Ain't I lucky for such an unlucky person?  (This is the same surgeon that I showed my battered, bloody, unconcious picture from the Denvr NICU and asked him if I could blame this on him  I then told him that if he hadn't saved my life 4 years ago, I couldn't have done something so stupid as to get in the bloody condition.  (He finally grinned.)!

                                                                                      jax2007gxp
                                                                                      Participant

                                                                                        Thanks, Jerry.  Just as I suspected…clear as mud!  lol  Really though, it is a puzzler.  I'll be sure to share if I can any sort of comprehensible answer from the people at the trial.  Since my Cloquets was positive for micromets and he left the rest of the deep nodes in place, I wonder if they would disqualify me anyhoo.  Again, I'll be sure to share!

                                                                                        Just curious…how were the lung tumors discovered only 30 days after the LND?

                                                                                        Thanks,

                                                                                        Jacki 

                                                                                        jax2007gxp
                                                                                        Participant

                                                                                          Thanks, Jerry.  Just as I suspected…clear as mud!  lol  Really though, it is a puzzler.  I'll be sure to share if I can any sort of comprehensible answer from the people at the trial.  Since my Cloquets was positive for micromets and he left the rest of the deep nodes in place, I wonder if they would disqualify me anyhoo.  Again, I'll be sure to share!

                                                                                          Just curious…how were the lung tumors discovered only 30 days after the LND?

                                                                                          Thanks,

                                                                                          Jacki 

                                                                                        JerryfromFauq
                                                                                        Participant

                                                                                          Jacki,

                                                                                          You have asked a question that is making me think and research.  There is a difference in standalone tumors and melanoma in lymphnodes.  The folloowig is what crosses my mind, hopefully someone else can provide some references that either agrees or disagrees with my thinking. 

                                                                                             I have not yet found anything that discusses a difference in definition of the term "Free margin" between the two. In a seperate tumor it is more likely just an enclosed mass of "goo".   The difference I see would be that in a lymph node basin, the node is directly connected to lymph channels and close proximity to other nodes.  The biggest thing I have ran across seems to be whether the nodes in the basin are matted or/and have extracapsular extension.  (I had both in my groin disection in 2007.)  In my case tissue was pathalogically examined during the operation to double chek for clear margins.  The clear margins were found, but lung tumors were already forming and were discovered within 30 days of the groin dissection.  Two years later, I found a soft tissue tumor growing in the area the surgeon had told me was where the extracapsular extension had been.  (I paid special attention to that area.)  In the 3 years since that tumors removal, I have had no new tumors in that area. 

                                                                                          I would think (and argue) that for the purposes of the trial that you are looking at, that a complete resection was done with clear margins.  I would argue that the report says clear margins and that the PET scan showed no extension of melanoma into the deeper node basin. 

                                                                                            

                                                                                          JerryfromFauq
                                                                                          Participant

                                                                                            Jacki,

                                                                                            You have asked a question that is making me think and research.  There is a difference in standalone tumors and melanoma in lymphnodes.  The folloowig is what crosses my mind, hopefully someone else can provide some references that either agrees or disagrees with my thinking. 

                                                                                               I have not yet found anything that discusses a difference in definition of the term "Free margin" between the two. In a seperate tumor it is more likely just an enclosed mass of "goo".   The difference I see would be that in a lymph node basin, the node is directly connected to lymph channels and close proximity to other nodes.  The biggest thing I have ran across seems to be whether the nodes in the basin are matted or/and have extracapsular extension.  (I had both in my groin disection in 2007.)  In my case tissue was pathalogically examined during the operation to double chek for clear margins.  The clear margins were found, but lung tumors were already forming and were discovered within 30 days of the groin dissection.  Two years later, I found a soft tissue tumor growing in the area the surgeon had told me was where the extracapsular extension had been.  (I paid special attention to that area.)  In the 3 years since that tumors removal, I have had no new tumors in that area. 

                                                                                            I would think (and argue) that for the purposes of the trial that you are looking at, that a complete resection was done with clear margins.  I would argue that the report says clear margins and that the PET scan showed no extension of melanoma into the deeper node basin. 

                                                                                              

                                                                                            KatyWI
                                                                                            Participant

                                                                                              Hey Jacki, it sounds like it was a kinda sucky day.  I'm sorry.  (hug)

                                                                                              I wanted to give you a little girl-to-girl support on the no-kids thing.  That's something I had a hard time coming to terms with, myself.  My husband and I had been married just over a year when my recurrence was dx, pushing me to stage IV, and were actively "trying" after having his VS reversed.  So I know how it feels to have your dreams dashed.  I can't make it feel any better, but maybe it helps just to know somebody else understands.

                                                                                              As for the statistics, screw 'em.  They come from the past, when treatments available now were not available.  Anon had some really sage advice…enjoy the life you're living now.  MM may someday steal my tomorrow, but damn if I'm going to let it steal my today.

                                                                                              Katy

                                                                                              KatyWI
                                                                                              Participant

                                                                                                Hey Jacki, it sounds like it was a kinda sucky day.  I'm sorry.  (hug)

                                                                                                I wanted to give you a little girl-to-girl support on the no-kids thing.  That's something I had a hard time coming to terms with, myself.  My husband and I had been married just over a year when my recurrence was dx, pushing me to stage IV, and were actively "trying" after having his VS reversed.  So I know how it feels to have your dreams dashed.  I can't make it feel any better, but maybe it helps just to know somebody else understands.

                                                                                                As for the statistics, screw 'em.  They come from the past, when treatments available now were not available.  Anon had some really sage advice…enjoy the life you're living now.  MM may someday steal my tomorrow, but damn if I'm going to let it steal my today.

                                                                                                Katy

                                                                                                KatyWI
                                                                                                Participant

                                                                                                  Hey Jacki, it sounds like it was a kinda sucky day.  I'm sorry.  (hug)

                                                                                                  I wanted to give you a little girl-to-girl support on the no-kids thing.  That's something I had a hard time coming to terms with, myself.  My husband and I had been married just over a year when my recurrence was dx, pushing me to stage IV, and were actively "trying" after having his VS reversed.  So I know how it feels to have your dreams dashed.  I can't make it feel any better, but maybe it helps just to know somebody else understands.

                                                                                                  As for the statistics, screw 'em.  They come from the past, when treatments available now were not available.  Anon had some really sage advice…enjoy the life you're living now.  MM may someday steal my tomorrow, but damn if I'm going to let it steal my today.

                                                                                                  Katy

                                                                                                    jax2007gxp
                                                                                                    Participant

                                                                                                      Thanks, Katy.  It was a sucky day!  I needed that hug…thanks!  I am feeling much better today.  Usually, I need to sleep on things to see them more clearly.  Regardless of the stats, I am still just me…and I have a tendency to surprise people.  So, why not surprise them all with decades of health?  And who knows…maybe I will still meet my Prince Charming or just plain 'ol "Joe" who doesn't care about my cancer or my bad habits or my huge shoe collection or anything else but me…and maybe he'll have young kids or want to pursue surrogate or any other combination of amazingly wonderful things life still has in store…who knows? 

                                                                                                      Thanks for helping me remember…

                                                                                                      Jacki

                                                                                                      jax2007gxp
                                                                                                      Participant

                                                                                                        Thanks, Katy.  It was a sucky day!  I needed that hug…thanks!  I am feeling much better today.  Usually, I need to sleep on things to see them more clearly.  Regardless of the stats, I am still just me…and I have a tendency to surprise people.  So, why not surprise them all with decades of health?  And who knows…maybe I will still meet my Prince Charming or just plain 'ol "Joe" who doesn't care about my cancer or my bad habits or my huge shoe collection or anything else but me…and maybe he'll have young kids or want to pursue surrogate or any other combination of amazingly wonderful things life still has in store…who knows? 

                                                                                                        Thanks for helping me remember…

                                                                                                        Jacki

                                                                                                        jax2007gxp
                                                                                                        Participant

                                                                                                          Thanks, Katy.  It was a sucky day!  I needed that hug…thanks!  I am feeling much better today.  Usually, I need to sleep on things to see them more clearly.  Regardless of the stats, I am still just me…and I have a tendency to surprise people.  So, why not surprise them all with decades of health?  And who knows…maybe I will still meet my Prince Charming or just plain 'ol "Joe" who doesn't care about my cancer or my bad habits or my huge shoe collection or anything else but me…and maybe he'll have young kids or want to pursue surrogate or any other combination of amazingly wonderful things life still has in store…who knows? 

                                                                                                          Thanks for helping me remember…

                                                                                                          Jacki

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