Update on My Status – From a Stage IV Survivor
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Update on My Status – From a Stage IV Survivor

› Forums › General Melanoma Community › Update on My Status – From a Stage IV Survivor

  • Post
    • February 29, 2012 at 7:52 pm
    Eileen L
    Participant

    Hello to everyone. I haven't been on the board lately, but wanted to let folks know what was happening. I had my six month scans a few weeks ago and unfortunately an adrenal gland tumor that had been there for three years and fairly inactive decided to almost double in size to 5.4cm. So I am off for a FNB this afternoon and depending on results will probably be looking at some change in treatment. Right now I am leaning towards getting the sucker out since it seems to be the only active tumor in my body, but have been in conversations with Dr.

    Hello to everyone. I haven't been on the board lately, but wanted to let folks know what was happening. I had my six month scans a few weeks ago and unfortunately an adrenal gland tumor that had been there for three years and fairly inactive decided to almost double in size to 5.4cm. So I am off for a FNB this afternoon and depending on results will probably be looking at some change in treatment. Right now I am leaning towards getting the sucker out since it seems to be the only active tumor in my body, but have been in conversations with Dr. Daud at UCSF about perhaps trying a trial of BRAF and MEK. Could be a benign tumor, but since the beast likes the adrenal gland I am thinking more probably mel than not.

    For those of you who don't know me, I was diagnosed Stage IV in September, 2007 and my initial treatment was chemotherapy coupled with Nexavar. I was one of the lucky few that responded to this regime.  I have continued to take the Nexavar. I have two tumors in my lungs which shrung and then haven't  grown in about three years so unsure if they are even active. The pesky adrenal tumor showed up in February, 2009 and has been slowly growing until it had its recent little growth spurt.

    There is hope, life and joy after a stage IV diagnosis! I am feeling very positive and belief that I will be around for quite awhile. Love and prayers always are gratefully accepted.

    Thanks to everyone on this board who have been so supportive and kind. This is an amazing place.

    Love and gratitude,

    Eileen L

     

     

Viewing 32 reply threads
  • Replies
      • February 29, 2012 at 8:04 pm
      aldakota22
      Participant

      Eileen you have my prayers .YOU will be around for a very long time.My love to you and your partner in this endeavor.  Al

      • February 29, 2012 at 8:04 pm
      aldakota22
      Participant

      Eileen you have my prayers .YOU will be around for a very long time.My love to you and your partner in this endeavor.  Al

      • February 29, 2012 at 8:04 pm
      aldakota22
      Participant

      Eileen you have my prayers .YOU will be around for a very long time.My love to you and your partner in this endeavor.  Al

      • February 29, 2012 at 8:53 pm
      jag
      Participant

      Eileen,

      Thanks for the update, sorry to hear that you are going to have to get ready for another round, but it definitely sounds like you have the right attitude. Now get in there and put up your dukes!

      J.

      • February 29, 2012 at 8:53 pm
      jag
      Participant

      Eileen,

      Thanks for the update, sorry to hear that you are going to have to get ready for another round, but it definitely sounds like you have the right attitude. Now get in there and put up your dukes!

      J.

      • February 29, 2012 at 8:53 pm
      jag
      Participant

      Eileen,

      Thanks for the update, sorry to hear that you are going to have to get ready for another round, but it definitely sounds like you have the right attitude. Now get in there and put up your dukes!

      J.

      • February 29, 2012 at 9:00 pm
      runnergirl
      Participant

      My stage IV husband's oncologist recommends surgical tx of individual melanomas and chemo after the surgery is no longer an option.  Thanks for the name of the chemo that you were on; something new for us to look up.

      • February 29, 2012 at 9:00 pm
      runnergirl
      Participant

      My stage IV husband's oncologist recommends surgical tx of individual melanomas and chemo after the surgery is no longer an option.  Thanks for the name of the chemo that you were on; something new for us to look up.

        • February 29, 2012 at 9:01 pm
        runnergirl
        Participant

        Misspelled one word:  MELASUCKANOMA!

        • February 29, 2012 at 9:01 pm
        runnergirl
        Participant

        Misspelled one word:  MELASUCKANOMA!

        • February 29, 2012 at 9:01 pm
        runnergirl
        Participant

        Misspelled one word:  MELASUCKANOMA!

      • February 29, 2012 at 9:00 pm
      runnergirl
      Participant

      My stage IV husband's oncologist recommends surgical tx of individual melanomas and chemo after the surgery is no longer an option.  Thanks for the name of the chemo that you were on; something new for us to look up.

      • February 29, 2012 at 9:09 pm
      hope4cure1
      Participant

      Hi Eileen,

      Looks like your melanoma can be kept in check.  Good luck on your next round.  Thank you for your inspiration!

      Hope

      • February 29, 2012 at 9:09 pm
      hope4cure1
      Participant

      Hi Eileen,

      Looks like your melanoma can be kept in check.  Good luck on your next round.  Thank you for your inspiration!

      Hope

        • February 29, 2012 at 9:17 pm
        Erinmay22
        Participant

        Thanks so much for your update.  It gives us stage iv folks hope!  I agree with the first approach of if it's just one – cut the sucker out! 

        Will keep you in my thoughts and prayers!

        Erin

        • February 29, 2012 at 9:17 pm
        Erinmay22
        Participant

        Thanks so much for your update.  It gives us stage iv folks hope!  I agree with the first approach of if it's just one – cut the sucker out! 

        Will keep you in my thoughts and prayers!

        Erin

        • March 2, 2012 at 8:45 pm
        boot2aboot
        Participant

        amen to that Erinmay ! thanks for letting us know

        boots

        • March 2, 2012 at 8:45 pm
        boot2aboot
        Participant

        amen to that Erinmay ! thanks for letting us know

        boots

        • March 2, 2012 at 8:45 pm
        boot2aboot
        Participant

        amen to that Erinmay ! thanks for letting us know

        boots

        • February 29, 2012 at 9:17 pm
        Erinmay22
        Participant

        Thanks so much for your update.  It gives us stage iv folks hope!  I agree with the first approach of if it's just one – cut the sucker out! 

        Will keep you in my thoughts and prayers!

        Erin

      • February 29, 2012 at 9:09 pm
      hope4cure1
      Participant

      Hi Eileen,

      Looks like your melanoma can be kept in check.  Good luck on your next round.  Thank you for your inspiration!

      Hope

      • February 29, 2012 at 10:39 pm
      lhaley
      Participant

      You know my thoughts are with you. Get that sucker cut out of you and keep on enjoying life!

      Linda

      • February 29, 2012 at 10:39 pm
      lhaley
      Participant

      You know my thoughts are with you. Get that sucker cut out of you and keep on enjoying life!

      Linda

      • February 29, 2012 at 10:39 pm
      lhaley
      Participant

      You know my thoughts are with you. Get that sucker cut out of you and keep on enjoying life!

      Linda

      • March 1, 2012 at 2:28 am
      MaryD
      Participant

      Hi Eileen,

      I remember you and we met at a CPMC melanoma symposium a couple of years ago.   So sorry to hear about the increase in size of the adrenal  tumor but overall, it sounds like you have been doing really well.   Depending on the outcome, I'm sure Dr. Daud will have some good ideas and if it is mel, it does sound like a good idea to get it out.

      Let us know how things work out and we'll be cheering you on!

      Mary

      • March 1, 2012 at 2:28 am
      MaryD
      Participant

      Hi Eileen,

      I remember you and we met at a CPMC melanoma symposium a couple of years ago.   So sorry to hear about the increase in size of the adrenal  tumor but overall, it sounds like you have been doing really well.   Depending on the outcome, I'm sure Dr. Daud will have some good ideas and if it is mel, it does sound like a good idea to get it out.

      Let us know how things work out and we'll be cheering you on!

      Mary

      • March 1, 2012 at 2:28 am
      MaryD
      Participant

      Hi Eileen,

      I remember you and we met at a CPMC melanoma symposium a couple of years ago.   So sorry to hear about the increase in size of the adrenal  tumor but overall, it sounds like you have been doing really well.   Depending on the outcome, I'm sure Dr. Daud will have some good ideas and if it is mel, it does sound like a good idea to get it out.

      Let us know how things work out and we'll be cheering you on!

      Mary

        • March 2, 2012 at 6:14 am
        Eileen L
        Participant

        Thanks for the encouragement Mary. I remember you from the conference! It's great to hear from you.

        Eileen

        • March 2, 2012 at 6:14 am
        Eileen L
        Participant

        Thanks for the encouragement Mary. I remember you from the conference! It's great to hear from you.

        Eileen

        • March 2, 2012 at 6:14 am
        Eileen L
        Participant

        Thanks for the encouragement Mary. I remember you from the conference! It's great to hear from you.

        Eileen

      • March 1, 2012 at 3:00 am
      King
      Participant

      Hi Eileen,

       

      It's good to hear from you.  I'm sorry to hear about the growth of the adrenal tumor but hopefully it can be taken care of quickly.  Are you BRAF positive?  I know your plan was to do some traveling and enjoy each day.  Stay positive and I'll keep you in my thoughts and prayers.  Keep us posted.

       

      Stay Strong
      King

      Stage IV  7/05  Liver mets

      • March 1, 2012 at 3:00 am
      King
      Participant

      Hi Eileen,

       

      It's good to hear from you.  I'm sorry to hear about the growth of the adrenal tumor but hopefully it can be taken care of quickly.  Are you BRAF positive?  I know your plan was to do some traveling and enjoy each day.  Stay positive and I'll keep you in my thoughts and prayers.  Keep us posted.

       

      Stay Strong
      King

      Stage IV  7/05  Liver mets

      • March 1, 2012 at 3:00 am
      King
      Participant

      Hi Eileen,

       

      It's good to hear from you.  I'm sorry to hear about the growth of the adrenal tumor but hopefully it can be taken care of quickly.  Are you BRAF positive?  I know your plan was to do some traveling and enjoy each day.  Stay positive and I'll keep you in my thoughts and prayers.  Keep us posted.

       

      Stay Strong
      King

      Stage IV  7/05  Liver mets

        • March 2, 2012 at 6:15 am
        Eileen L
        Participant

        Hi, King. Yes, I am BRAF positive. Dr. Daud had one of my tumors tested a few years ago. Thanks for your thoughts and prayers. Always appreciated.

        Warmly,

        Eileen

        • March 2, 2012 at 6:15 am
        Eileen L
        Participant

        Hi, King. Yes, I am BRAF positive. Dr. Daud had one of my tumors tested a few years ago. Thanks for your thoughts and prayers. Always appreciated.

        Warmly,

        Eileen

        • March 2, 2012 at 6:15 am
        Eileen L
        Participant

        Hi, King. Yes, I am BRAF positive. Dr. Daud had one of my tumors tested a few years ago. Thanks for your thoughts and prayers. Always appreciated.

        Warmly,

        Eileen

      • March 1, 2012 at 3:57 pm
      Eileen L
      Participant

      Thanks to all for their good wishes. I am doing fine after the biopsy. It was so easy! In and out in less than an hour, the procedure itself took about ten minutes. Then about 45 minutes "recovering" from the drugs. Worse part was having to miss lunch. Was I ever hungry!

      Love to all!

      Eileen L

      Stage IV

      • March 1, 2012 at 3:57 pm
      Eileen L
      Participant

      Thanks to all for their good wishes. I am doing fine after the biopsy. It was so easy! In and out in less than an hour, the procedure itself took about ten minutes. Then about 45 minutes "recovering" from the drugs. Worse part was having to miss lunch. Was I ever hungry!

      Love to all!

      Eileen L

      Stage IV

      • March 1, 2012 at 3:57 pm
      Eileen L
      Participant

      Thanks to all for their good wishes. I am doing fine after the biopsy. It was so easy! In and out in less than an hour, the procedure itself took about ten minutes. Then about 45 minutes "recovering" from the drugs. Worse part was having to miss lunch. Was I ever hungry!

      Love to all!

      Eileen L

      Stage IV

      • March 1, 2012 at 4:56 pm
      davidfromsingapore
      Participant
      Eileen – i’ll be thinking about you and hoping for good outcomes. Stay strong and give this thing a serious battle. David
      • March 1, 2012 at 4:56 pm
      davidfromsingapore
      Participant
      Eileen – i’ll be thinking about you and hoping for good outcomes. Stay strong and give this thing a serious battle. David
      • March 1, 2012 at 4:56 pm
      davidfromsingapore
      Participant
      Eileen – i’ll be thinking about you and hoping for good outcomes. Stay strong and give this thing a serious battle. David
      • March 2, 2012 at 1:57 am
      JerryfromFauq
      Participant

      Remember your telling me  in 2007 about your aim to reach the birthday in 2009.  Well, you are half way thru the next 5 year group now.  Keep on rolling GAL !  Maybe one day we'll get to see each other again.

        • March 2, 2012 at 6:13 am
        Eileen L
        Participant

        Hi, Jerry. Just celebrated my 60th in January! I am now aiming for 65. I would definitely be up for another gathering if anyone has the time and energy to put something together. Hope you are doing well. I know you have had many challenges over the past year or so. I don't write on the board often, but I lurk on occasion.

        Take care. You are in my thoughts frequently!

        Warmly, Eileen

        • March 2, 2012 at 6:13 am
        Eileen L
        Participant

        Hi, Jerry. Just celebrated my 60th in January! I am now aiming for 65. I would definitely be up for another gathering if anyone has the time and energy to put something together. Hope you are doing well. I know you have had many challenges over the past year or so. I don't write on the board often, but I lurk on occasion.

        Take care. You are in my thoughts frequently!

        Warmly, Eileen

        • March 2, 2012 at 6:13 am
        Eileen L
        Participant

        Hi, Jerry. Just celebrated my 60th in January! I am now aiming for 65. I would definitely be up for another gathering if anyone has the time and energy to put something together. Hope you are doing well. I know you have had many challenges over the past year or so. I don't write on the board often, but I lurk on occasion.

        Take care. You are in my thoughts frequently!

        Warmly, Eileen

      • March 2, 2012 at 1:57 am
      JerryfromFauq
      Participant

      Remember your telling me  in 2007 about your aim to reach the birthday in 2009.  Well, you are half way thru the next 5 year group now.  Keep on rolling GAL !  Maybe one day we'll get to see each other again.

      • March 2, 2012 at 1:57 am
      JerryfromFauq
      Participant

      Remember your telling me  in 2007 about your aim to reach the birthday in 2009.  Well, you are half way thru the next 5 year group now.  Keep on rolling GAL !  Maybe one day we'll get to see each other again.

      • March 3, 2012 at 3:21 pm
      CLPrice31
      Participant

      Keep up that attitude! Best wishes for you on this latest adventure.

      • March 3, 2012 at 3:21 pm
      CLPrice31
      Participant

      Keep up that attitude! Best wishes for you on this latest adventure.

      • March 3, 2012 at 3:21 pm
      CLPrice31
      Participant

      Keep up that attitude! Best wishes for you on this latest adventure.

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