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Bad news yesterday, Stage IIIa, now what???

Forums General Melanoma Community Bad news yesterday, Stage IIIa, now what???

  • Post
    davekarrie
    Participant

    I posted yesterday that they thought my lymph nodes were negative, but found out yesterday that they found melanoma cells in 1 lymph node on my right side, now they must go in and remove many more. Now I have to go back to mayo for more surgery, then what?  Just a rollercoaster ride that is tough, not to mention that we found out we are expecting and we are trying to buy/sell a house, what a crazy month it has been. I am young and healthy though so I know I will beat this.  Wanted to get advice for others with stage IIIa to see what treatments are available and/or useful.

    I posted yesterday that they thought my lymph nodes were negative, but found out yesterday that they found melanoma cells in 1 lymph node on my right side, now they must go in and remove many more. Now I have to go back to mayo for more surgery, then what?  Just a rollercoaster ride that is tough, not to mention that we found out we are expecting and we are trying to buy/sell a house, what a crazy month it has been. I am young and healthy though so I know I will beat this.  Wanted to get advice for others with stage IIIa to see what treatments are available and/or useful. have read many things about inferon and the like.  Also, should they put me through  a PET scan and check LDH levels as I haven't had those yet. thanks for any input/advice.

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  • Replies
      kristylee92
      Participant
      My best advice is to stay on top of all your appointments and either take someone with you or record your appointments so that you do not miss out on any information. Gather all treatment information including duration and side effects so that you can make an informed decision. My father was offered IL2 treatment for a course of 3 rounds, he decided to do more conventional treatment first such as Interferon, surgery, and radiation. He also tried other therapies. He finally decided to try IL2 and completed 2 rounds but his body was too depleted to fight back by that time. You are young and healthy, fight this aggressively. Don’t be afraid to try some of the new drugs, they have had good results with a small percentage of people, you may fall into that percentage! Don’t forget that you are your own best advocate, you have rights as a patient and know your body better than anyone else.

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      kristylee92
      Participant
      My best advice is to stay on top of all your appointments and either take someone with you or record your appointments so that you do not miss out on any information. Gather all treatment information including duration and side effects so that you can make an informed decision. My father was offered IL2 treatment for a course of 3 rounds, he decided to do more conventional treatment first such as Interferon, surgery, and radiation. He also tried other therapies. He finally decided to try IL2 and completed 2 rounds but his body was too depleted to fight back by that time. You are young and healthy, fight this aggressively. Don’t be afraid to try some of the new drugs, they have had good results with a small percentage of people, you may fall into that percentage! Don’t forget that you are your own best advocate, you have rights as a patient and know your body better than anyone else.

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      makedoandmend
      Participant

      It sucks that you have to go throught his but you would much rather catch this at iii than iv to put it bluntly.  You already seeem like like are dealing with a good place ( mayo) and they will help you with a good game plan.  The LND dissection is a much more invasive procedure than than SNB.  Did they take the nodes from your going?

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      makedoandmend
      Participant

      It sucks that you have to go throught his but you would much rather catch this at iii than iv to put it bluntly.  You already seeem like like are dealing with a good place ( mayo) and they will help you with a good game plan.  The LND dissection is a much more invasive procedure than than SNB.  Did they take the nodes from your going?

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      JakeinNY
      Participant

      Whatever you do, get your advice from a place that is big on Melanoma treatment.

      I'm stage III and my doctor was not a big fan of interferon.

      My stage III was in my parotid…surgery at Sloan Kettering, radiation at NYU and NED for 3 years since.

      My regimen is:

      Back to my faith…I love church now.

      Have not touched sweets since my surgery…diet is vegetables, brown rice, oatmeal, nuts, blueberries, free range chicken, wild salmon, almond butter, ezekiel bread, ezekiel sprouted cereal with organic soy milk (soybeans and water only), turmeric on my vegetables, flaxseed oil on my salad, lots of olive oil on my rice and veggies, cinnamon on my oatmeal.

      Reiki a couple of times per month.

      Massage almost once per week.

      Gym twice a week.

      Change your lifestyle.

      Read the book "The Enzyme Factor".

      Don't shortchange yourself…ensure that your immune system is at it's best.

      Best wishes for a long life.

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      JakeinNY
      Participant

      Whatever you do, get your advice from a place that is big on Melanoma treatment.

      I'm stage III and my doctor was not a big fan of interferon.

      My stage III was in my parotid…surgery at Sloan Kettering, radiation at NYU and NED for 3 years since.

      My regimen is:

      Back to my faith…I love church now.

      Have not touched sweets since my surgery…diet is vegetables, brown rice, oatmeal, nuts, blueberries, free range chicken, wild salmon, almond butter, ezekiel bread, ezekiel sprouted cereal with organic soy milk (soybeans and water only), turmeric on my vegetables, flaxseed oil on my salad, lots of olive oil on my rice and veggies, cinnamon on my oatmeal.

      Reiki a couple of times per month.

      Massage almost once per week.

      Gym twice a week.

      Change your lifestyle.

      Read the book "The Enzyme Factor".

      Don't shortchange yourself…ensure that your immune system is at it's best.

      Best wishes for a long life.

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      BethA in VA
      Participant

      Slow down.  Expecting…congratulations.  Trying to sell/buy house…good luck.  More treatments…do what you need to do and get in good shape for a busy life with your child.  Make sure you trust your Dr and if not, find another one.  Hope all goes well for you.  It is not easy, but you can and will be ok.  Beth 3/B

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      BethA in VA
      Participant

      Slow down.  Expecting…congratulations.  Trying to sell/buy house…good luck.  More treatments…do what you need to do and get in good shape for a busy life with your child.  Make sure you trust your Dr and if not, find another one.  Hope all goes well for you.  It is not easy, but you can and will be ok.  Beth 3/B

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      LynnLuc
      Participant

      Hi! I don't know which Mayo you are going to…but I went to the Mayo Clinic in Minnesota…my primary onc was a breast cancer specialist although I was seen by her nurse excluding the initial and the final app'ts…They had no trials to recommend to me other than Leukine injections and gave me 6-9 months ( I am stage 4)…They have a great thoracic surgeon there…Dr Shen and he is awesome…

      It's a great hospital for most everything…but I knew I needed a melanoma specialist…I go to Moffitt now. I am stage 4 NED nearing 8 months…

      I had PET's every 3 months from June 2009 to April 2010 and a final one before I began the trial.. My LDH was checked with every blood test and is still checked at every blood test…my LDH hangs around  325-360 since my diagnosis.. Mayo always checked it and Moffitt always checks it…I had it explained that  some foods and infections can make it go up and down…but mainly it's used to see if major organ damage has occurred…I was told it really isn't a predictor  yet they always check it…go figure…

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      LynnLuc
      Participant

      Hi! I don't know which Mayo you are going to…but I went to the Mayo Clinic in Minnesota…my primary onc was a breast cancer specialist although I was seen by her nurse excluding the initial and the final app'ts…They had no trials to recommend to me other than Leukine injections and gave me 6-9 months ( I am stage 4)…They have a great thoracic surgeon there…Dr Shen and he is awesome…

      It's a great hospital for most everything…but I knew I needed a melanoma specialist…I go to Moffitt now. I am stage 4 NED nearing 8 months…

      I had PET's every 3 months from June 2009 to April 2010 and a final one before I began the trial.. My LDH was checked with every blood test and is still checked at every blood test…my LDH hangs around  325-360 since my diagnosis.. Mayo always checked it and Moffitt always checks it…I had it explained that  some foods and infections can make it go up and down…but mainly it's used to see if major organ damage has occurred…I was told it really isn't a predictor  yet they always check it…go figure…

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