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Are all stage IIIBs created equal?
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Are all stage IIIBs created equal?

› Forums › General Melanoma Community › Are all stage IIIBs created equal?

  • Post
    • December 20, 2014 at 12:27 am
    jenny22
    Participant

      Hi All-I promised myself I would try and take a break and not read so much, but i am having a particulary bad afternoon today.

      As I am preparing for another surgery, and then a decision for next setps I find myself reading, and reading and reading….

      I am most likley going to participate in a Vaccine trial.  But its so scary and disconcerting to read from some that vaccine trials havent really wokred, nor whons any clear data….only other options are Interfeon or IPI, whcih i am not sure about.

      I would welcome any comments on the above, but also had another question…..i've read varying aritcles, abstracts, publications etc about the managment and prognosis of Intransit mets…

      I've actually found a few that say, in the absence of LN involvement they have a better prognosis  than overal stage IIIB, and also have read the oppositie that they are worse prognostically.So, are stage IIIBs, equal?

      All the Oncologists I've seen (Sloan, NYU, Mt. Sinai, UPENN, and Rutgers) all seem failry encouraging that this is still "beatable" ….or at least that i stand a chance to be hear a good number of years down the road.

      I know i am  probably no different than anyone else here, but I can't seem to get that positive attitude just yet, and  still focusing on the negative and the overhwleming fears of what lies ahead…..

      I would love to hear anyones thoughts on the IIIB/intransit question as well how to get that postive "mojo" going.

      Thanks in advance and best to all.

      j

       

       

       

       

    Viewing 5 reply threads
    • Replies
        • December 20, 2014 at 6:33 pm
        5dives
        Participant

          Jenny, 

          I'm thinking of you, and am sorry you're struggling with worry. I'm also 3B, have a tendency toward stressing out about this whole situation, and would be glad to talk to you more if having a "buddy" in the same boat would be helpful. I saw the same doc as you at Sloan, and I am being (not) treated in Chicago. Right now I'm worried about a possible new primary on my arm. Trying to get through the holidays.  Email if you like. 🙂

          Best, 

          Elaine

           

           

           

           

          • December 20, 2014 at 6:33 pm
          5dives
          Participant

            Jenny, 

            I'm thinking of you, and am sorry you're struggling with worry. I'm also 3B, have a tendency toward stressing out about this whole situation, and would be glad to talk to you more if having a "buddy" in the same boat would be helpful. I saw the same doc as you at Sloan, and I am being (not) treated in Chicago. Right now I'm worried about a possible new primary on my arm. Trying to get through the holidays.  Email if you like. 🙂

            Best, 

            Elaine

             

             

             

             

            • December 20, 2014 at 6:33 pm
            5dives
            Participant

              Jenny, 

              I'm thinking of you, and am sorry you're struggling with worry. I'm also 3B, have a tendency toward stressing out about this whole situation, and would be glad to talk to you more if having a "buddy" in the same boat would be helpful. I saw the same doc as you at Sloan, and I am being (not) treated in Chicago. Right now I'm worried about a possible new primary on my arm. Trying to get through the holidays.  Email if you like. 🙂

              Best, 

              Elaine

               

               

               

               

              • December 20, 2014 at 8:47 pm
              BrianP
              Participant

                Jenny,

                I'm afraid I don't really know the answer to your question.  I know in my case I was IIIB with nodal involvement.  My node also had extranodal tumor extension which did put me on the bad side of IIIB.  I'd be curious to see the stats for your question. 

                As far as the mental side of it try to hang in there.  Sounds like you are still in the shock phase of all this which we all were at one time.  I'm sure you'll gradually start to get your "mojo" going.  I congratulate you on the effort you made so far with all the outstanding facilities you have been to.  You are right that vaccines haven't had the best results in the past but I think they are getting better and better all the time. I think I'd also be looking at a PD-1 adjuvant trial or PD-1 combo adjuvant trial.  Have you looked into any of those?  I get treated at UVA and my clinical trial coordinator just told me they are about to start some so I'm sure other places are also. 

                Trying to stay positive is tough.  I read a book called "Anti-cancer: A new way of life".  I think it's a great book for getting yourself to focus on the positive.  It's so easy to look at the stats and read "X% of people die at 2 years and X% of the people die at 5 years" and by doing so you kinda get yourself sucked into the glass 1/2 empty mindset.  The book helped me focus on the percentage of people who survive and ways I can help myself get into that percentage.  It's also a good book because it kinda empowered me with things I can do to help myself.  So often you feel like you are at the mercy of your doctors or the experimental drug and it makes you feel so helpless.  Feeling like you can do stuff to help yourself is a huge mental boost. 

                Hope you can still find ways to enjoy your holidays.  It sounds to me like you are doing all the right stuff so take solace in that.

                Brian

                • December 20, 2014 at 8:47 pm
                BrianP
                Participant

                  Jenny,

                  I'm afraid I don't really know the answer to your question.  I know in my case I was IIIB with nodal involvement.  My node also had extranodal tumor extension which did put me on the bad side of IIIB.  I'd be curious to see the stats for your question. 

                  As far as the mental side of it try to hang in there.  Sounds like you are still in the shock phase of all this which we all were at one time.  I'm sure you'll gradually start to get your "mojo" going.  I congratulate you on the effort you made so far with all the outstanding facilities you have been to.  You are right that vaccines haven't had the best results in the past but I think they are getting better and better all the time. I think I'd also be looking at a PD-1 adjuvant trial or PD-1 combo adjuvant trial.  Have you looked into any of those?  I get treated at UVA and my clinical trial coordinator just told me they are about to start some so I'm sure other places are also. 

                  Trying to stay positive is tough.  I read a book called "Anti-cancer: A new way of life".  I think it's a great book for getting yourself to focus on the positive.  It's so easy to look at the stats and read "X% of people die at 2 years and X% of the people die at 5 years" and by doing so you kinda get yourself sucked into the glass 1/2 empty mindset.  The book helped me focus on the percentage of people who survive and ways I can help myself get into that percentage.  It's also a good book because it kinda empowered me with things I can do to help myself.  So often you feel like you are at the mercy of your doctors or the experimental drug and it makes you feel so helpless.  Feeling like you can do stuff to help yourself is a huge mental boost. 

                  Hope you can still find ways to enjoy your holidays.  It sounds to me like you are doing all the right stuff so take solace in that.

                  Brian

                  • December 20, 2014 at 8:47 pm
                  BrianP
                  Participant

                    Jenny,

                    I'm afraid I don't really know the answer to your question.  I know in my case I was IIIB with nodal involvement.  My node also had extranodal tumor extension which did put me on the bad side of IIIB.  I'd be curious to see the stats for your question. 

                    As far as the mental side of it try to hang in there.  Sounds like you are still in the shock phase of all this which we all were at one time.  I'm sure you'll gradually start to get your "mojo" going.  I congratulate you on the effort you made so far with all the outstanding facilities you have been to.  You are right that vaccines haven't had the best results in the past but I think they are getting better and better all the time. I think I'd also be looking at a PD-1 adjuvant trial or PD-1 combo adjuvant trial.  Have you looked into any of those?  I get treated at UVA and my clinical trial coordinator just told me they are about to start some so I'm sure other places are also. 

                    Trying to stay positive is tough.  I read a book called "Anti-cancer: A new way of life".  I think it's a great book for getting yourself to focus on the positive.  It's so easy to look at the stats and read "X% of people die at 2 years and X% of the people die at 5 years" and by doing so you kinda get yourself sucked into the glass 1/2 empty mindset.  The book helped me focus on the percentage of people who survive and ways I can help myself get into that percentage.  It's also a good book because it kinda empowered me with things I can do to help myself.  So often you feel like you are at the mercy of your doctors or the experimental drug and it makes you feel so helpless.  Feeling like you can do stuff to help yourself is a huge mental boost. 

                    Hope you can still find ways to enjoy your holidays.  It sounds to me like you are doing all the right stuff so take solace in that.

                    Brian

                Viewing 5 reply threads
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