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Has anyone rejected a CLND ?

Forums General Melanoma Community Has anyone rejected a CLND ?

  • Post
    Squash
    Participant

    Hi

    I recently found out via ultrasound that two sentinel nodes that I have been monitoring are now malignant with a 5mm and a 6mm growth respectively.

    The doctor wants to do a full groin dissection but after reading everything and considering QOL issues I have opted against his advice and decided just to have those two nodes taken out.

    Has anyone else been in that situation and done the same thing?

    I have decided to try and mop up any existing melanoma undedected by ultrasound using alternative therapies.

    I have cleaned up diet diet getting rid of all sugar, white flour, fried foods , red meat and dairy.

    I started taking Avemar ie fermented wheat germ extract which according to some research is very good for melanoma and also beta glucens, IP6 , COenzymeQ10, green tea extract, tumeric,organic phyto greens, selenium and I am using a zapper for electrotherapy threatment.

    Has anyone had success with these therapies?

     

     

     

     

     

     

     

     

Viewing 8 reply threads
  • Replies
      Momrn5
      Participant

      I am all for changing diet and trying alternative therapies in conjunction with some sort of established medical treatment for melanoma.  From the research I have done, it's advisable to have a groin dissection when nodes are found by ultrasound.   I had a partial groin dissection for just micromets undetectable by ultrasound.  There is a much higher chance of spread when the nodes are found by ultrasound and they along with their mates should come out.  Are they the inguinal nodes?  Maybe the MD would consider just removing them. That is called a partial lymph node dissection.  I have a small amount of lymph edema that has not affected my quality of life at all except for I don't like my chubby ankle. Small price to pay for a much higher increased chance of surviving to a ripe old age.  I fly frequently, go in jucuzzi's, and am generally working or moving 16 hours per day.  It hasn't  affected my quality of life at all.  I don't think you will find many people on this board who would make the decision you have made as most of them are alive today because  they accepted standard melanoma treatments for their disease.  But, you have to do what you think is best for you. Good luck and best wishes to you.

        Momrn5
        Participant

        Many have accepted clinical trials also. Not just standard treatment.  I would like to say Thank You  to those people because they are part of the reason that Metastatic melanoma isn't the death sentence it once was.  

        Momrn5
        Participant

        Many have accepted clinical trials also. Not just standard treatment.  I would like to say Thank You  to those people because they are part of the reason that Metastatic melanoma isn't the death sentence it once was.  

        Momrn5
        Participant

        Many have accepted clinical trials also. Not just standard treatment.  I would like to say Thank You  to those people because they are part of the reason that Metastatic melanoma isn't the death sentence it once was.  

        Squash
        Participant

        I understand what you are saying but I intend to follow up with ultasound and if it so happens that something is found elsewhere then i will take appropriate action.

        Also I dont think it is clear that CLND extends overall survival and there are a lot of downsides to losing all your lymph nodes in your groin.

        I mean the average recurrence time for people who do CLNDs stage 111 is something like 22months which really lends weight to the theory that it is a systemic disease and that by undergoing surgery you are in many cases only delaying things and of course compromising quality of life.

        Those who have very small amounts or microscropic disease who undergo CLNDs may well have taken quite a few years to develop to the stage where their nodes where palpable anyway or disease may not have progressed at all.

        I like the idea of clinical trials or other therapies instead of radical surgery. The CLND is also a surgery that can severely deplete your immune systen which of course gives any dormant melanoma cells a chance to activate themselves.

        In my case it is almost a year since I had my initial excision at which time I didnt do a sentinel node biopsy because my initial biopsy was termed atypical and the plastic surgeon didnt think it looked like melanoma so it was treated as benign. So I have been doing follow up with ultrasound every three months since that time. Unfortunately this time was bad news but I am really reluctant to take out a whole lot of potentially healtlhy lymph nodes. I dont want to do it unless I know there is disease there for sure.

         

         

         

        Squash
        Participant

        I understand what you are saying but I intend to follow up with ultasound and if it so happens that something is found elsewhere then i will take appropriate action.

        Also I dont think it is clear that CLND extends overall survival and there are a lot of downsides to losing all your lymph nodes in your groin.

        I mean the average recurrence time for people who do CLNDs stage 111 is something like 22months which really lends weight to the theory that it is a systemic disease and that by undergoing surgery you are in many cases only delaying things and of course compromising quality of life.

        Those who have very small amounts or microscropic disease who undergo CLNDs may well have taken quite a few years to develop to the stage where their nodes where palpable anyway or disease may not have progressed at all.

        I like the idea of clinical trials or other therapies instead of radical surgery. The CLND is also a surgery that can severely deplete your immune systen which of course gives any dormant melanoma cells a chance to activate themselves.

        In my case it is almost a year since I had my initial excision at which time I didnt do a sentinel node biopsy because my initial biopsy was termed atypical and the plastic surgeon didnt think it looked like melanoma so it was treated as benign. So I have been doing follow up with ultrasound every three months since that time. Unfortunately this time was bad news but I am really reluctant to take out a whole lot of potentially healtlhy lymph nodes. I dont want to do it unless I know there is disease there for sure.

         

         

         

        Squash
        Participant

        I understand what you are saying but I intend to follow up with ultasound and if it so happens that something is found elsewhere then i will take appropriate action.

        Also I dont think it is clear that CLND extends overall survival and there are a lot of downsides to losing all your lymph nodes in your groin.

        I mean the average recurrence time for people who do CLNDs stage 111 is something like 22months which really lends weight to the theory that it is a systemic disease and that by undergoing surgery you are in many cases only delaying things and of course compromising quality of life.

        Those who have very small amounts or microscropic disease who undergo CLNDs may well have taken quite a few years to develop to the stage where their nodes where palpable anyway or disease may not have progressed at all.

        I like the idea of clinical trials or other therapies instead of radical surgery. The CLND is also a surgery that can severely deplete your immune systen which of course gives any dormant melanoma cells a chance to activate themselves.

        In my case it is almost a year since I had my initial excision at which time I didnt do a sentinel node biopsy because my initial biopsy was termed atypical and the plastic surgeon didnt think it looked like melanoma so it was treated as benign. So I have been doing follow up with ultrasound every three months since that time. Unfortunately this time was bad news but I am really reluctant to take out a whole lot of potentially healtlhy lymph nodes. I dont want to do it unless I know there is disease there for sure.

         

         

         

      Momrn5
      Participant

      I am all for changing diet and trying alternative therapies in conjunction with some sort of established medical treatment for melanoma.  From the research I have done, it's advisable to have a groin dissection when nodes are found by ultrasound.   I had a partial groin dissection for just micromets undetectable by ultrasound.  There is a much higher chance of spread when the nodes are found by ultrasound and they along with their mates should come out.  Are they the inguinal nodes?  Maybe the MD would consider just removing them. That is called a partial lymph node dissection.  I have a small amount of lymph edema that has not affected my quality of life at all except for I don't like my chubby ankle. Small price to pay for a much higher increased chance of surviving to a ripe old age.  I fly frequently, go in jucuzzi's, and am generally working or moving 16 hours per day.  It hasn't  affected my quality of life at all.  I don't think you will find many people on this board who would make the decision you have made as most of them are alive today because  they accepted standard melanoma treatments for their disease.  But, you have to do what you think is best for you. Good luck and best wishes to you.

      Momrn5
      Participant

      I am all for changing diet and trying alternative therapies in conjunction with some sort of established medical treatment for melanoma.  From the research I have done, it's advisable to have a groin dissection when nodes are found by ultrasound.   I had a partial groin dissection for just micromets undetectable by ultrasound.  There is a much higher chance of spread when the nodes are found by ultrasound and they along with their mates should come out.  Are they the inguinal nodes?  Maybe the MD would consider just removing them. That is called a partial lymph node dissection.  I have a small amount of lymph edema that has not affected my quality of life at all except for I don't like my chubby ankle. Small price to pay for a much higher increased chance of surviving to a ripe old age.  I fly frequently, go in jucuzzi's, and am generally working or moving 16 hours per day.  It hasn't  affected my quality of life at all.  I don't think you will find many people on this board who would make the decision you have made as most of them are alive today because  they accepted standard melanoma treatments for their disease.  But, you have to do what you think is best for you. Good luck and best wishes to you.

      Janner
      Participant

      My elderly father chose not to do the SNB for a stage II lesion.  Then a few years later, he had a palpable lymph node (armpit).  Because of his age and physical condition (and also because he didn't want major surgery), we just cherry picked that lymph node knowing it wasn't a cure.   He didn't end up having other palpable nodes, but he did have subcutaneous spread within a year.  (You could see the dark lines on his chest under his armpit).  His melanoma was apparently slower growing, most likely just because of age (87 at the time of subcutaneous spread).  He passed away at age 89.  For him, cherry picking was the right choice given his situation.  But had he been younger, I don't think he would have gone that route.

      Janner
      Participant

      My elderly father chose not to do the SNB for a stage II lesion.  Then a few years later, he had a palpable lymph node (armpit).  Because of his age and physical condition (and also because he didn't want major surgery), we just cherry picked that lymph node knowing it wasn't a cure.   He didn't end up having other palpable nodes, but he did have subcutaneous spread within a year.  (You could see the dark lines on his chest under his armpit).  His melanoma was apparently slower growing, most likely just because of age (87 at the time of subcutaneous spread).  He passed away at age 89.  For him, cherry picking was the right choice given his situation.  But had he been younger, I don't think he would have gone that route.

      Janner
      Participant

      My elderly father chose not to do the SNB for a stage II lesion.  Then a few years later, he had a palpable lymph node (armpit).  Because of his age and physical condition (and also because he didn't want major surgery), we just cherry picked that lymph node knowing it wasn't a cure.   He didn't end up having other palpable nodes, but he did have subcutaneous spread within a year.  (You could see the dark lines on his chest under his armpit).  His melanoma was apparently slower growing, most likely just because of age (87 at the time of subcutaneous spread).  He passed away at age 89.  For him, cherry picking was the right choice given his situation.  But had he been younger, I don't think he would have gone that route.

      SABKLYN
      Participant

      Many people in your situation faced the same decision.  I chose the CLND because I wanted to be as aggressive as possible to stave off recurrence.  I did it, had a few minor complications but after two years am glad I did.  I think alternative diets, therapies, etc., can certainly be part of your plan.  If the lesions are confirmed malignant and they are identifiable and resectable , give some thought to removing it.  Also, wherever you're being treated, maybe you could look into the Integrative Medicine department if they have one.  I've received some good advice on so e of the diet exercise and supplement options to help support my treatment. I personally would not entrust my total treatment to lifestyle changes.  Of course, age, other physical conditions and overall health are considerations prior to deciding on surgery.  Good luck with your decision!!

       

      SABKLYN
      Participant

      Many people in your situation faced the same decision.  I chose the CLND because I wanted to be as aggressive as possible to stave off recurrence.  I did it, had a few minor complications but after two years am glad I did.  I think alternative diets, therapies, etc., can certainly be part of your plan.  If the lesions are confirmed malignant and they are identifiable and resectable , give some thought to removing it.  Also, wherever you're being treated, maybe you could look into the Integrative Medicine department if they have one.  I've received some good advice on so e of the diet exercise and supplement options to help support my treatment. I personally would not entrust my total treatment to lifestyle changes.  Of course, age, other physical conditions and overall health are considerations prior to deciding on surgery.  Good luck with your decision!!

       

      SABKLYN
      Participant

      Many people in your situation faced the same decision.  I chose the CLND because I wanted to be as aggressive as possible to stave off recurrence.  I did it, had a few minor complications but after two years am glad I did.  I think alternative diets, therapies, etc., can certainly be part of your plan.  If the lesions are confirmed malignant and they are identifiable and resectable , give some thought to removing it.  Also, wherever you're being treated, maybe you could look into the Integrative Medicine department if they have one.  I've received some good advice on so e of the diet exercise and supplement options to help support my treatment. I personally would not entrust my total treatment to lifestyle changes.  Of course, age, other physical conditions and overall health are considerations prior to deciding on surgery.  Good luck with your decision!!

       

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