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Stage 3.5

› Forums › General Melanoma Community › Stage 3.5

  • Post
    • September 15, 2014 at 8:41 pm
    magnus31
    Participant

      Dear all,

      We all probably once believed that cancer would not hit ourselves but instead unfortunate others. Yet here you are, reading this post. And yet here I am, after having browsed through hundreds of messages posted in this forum over the course of the years, posting my very first message on this melanoma forum.

      I was diagnosed with IIIA melanoma on my upper right arm in late 2012 at the age of 29. Luckily, only my sentinel node showed signs of disease after a lymph node dissection in my right armpit. Twelve months of Interferon treatment and close monitoring followed with no signs of recurrence.

      But that was until April 2014 when a regular CT scan identified a few millimetric nodules in both lungs. A follow-up scan in July 2014 revealed little change in these. My oncologists still recommended a lung biopsy to identify the nature of these nodules. This biopsy was carried out last week for which I shall expect results in three days.

      So, here I am. Still young. So much I want to do in life. Feeling fit. But nervous. And tense. Trying to balance fear with rationality. Keeping my family and friends unaware for fear of over-reactions. Trying to understand what a potential transition to Stage IV really means.

      How did you guys deal with taking the step from stage III to stage IV? How should I go about understanding which are my possible treatment options? How do you handle living with a stage IV diagnosis? 

      Thanks all,

      Magnus

       

       

    Viewing 8 reply threads
    • Replies
        • September 16, 2014 at 2:50 am
        JoshF
        Participant

          Magnus-

          Wow….I know how tough this is. It has been just over a year since I was rediagnosed from what they think was Stage 3 to Stage 4 with metastasis to lungs. I originally was diagnosed a few days before my 40th birthday in 2011. I went 2.5 years with nothing, then…. Well you can read my timeline on profile as I want to address how I dealt with it.

          I lived 2.5 years of waiting for show to drop….and it did. I lived in such fear of going to Stage 4 that when it happened I wasn't as devastated as I was from intial diagnosis. That being said…I still struggle with balancing fear and rationality…not sure I'll ever be good at this but I somehow manage and I've realized a few things:

          1) Death isn't what I'm afraid of…it's how I die that really gets to me….we'd all to go peacefully in our sleep at old age. So I decided I will fight…

          2) What I am scared of is what I leave behind…2 young kids and a wife. I still have my dad and at 43 I can't imagine life without him. Much like him, I'm a good parent and feel that "not being there" is worst thing that can happen to my kids…this makes me lose all rartionality.

          3) Being Stage 4 is a scar…it never goes away but hopefully over time it will fade. I'm neurotic as hell. I have neck pain now and I think I have some kind of metastasis. I'm so hyper-sensitive that like you…I keep it from everyone because it can cause hysteria or I feel I'm looked at as hypochondriac. I feel like I deserve this….only us who have been diagnosed with melanoma or another cancer know what it feels like. I use this site as my sounding board…I never feel like I'm judged and get sound advice. I'm still waiting for scar to fade….

          As far as treatment, there are more options out there and there are many here who can give you sound advice. I did a trial of 2 approved drugs….Yervoy and IL-2. I did the Yervoy last Oct-Dec and did IL-2 in January. I had immediate response with Yervoy and did 22 of the 24 bags of IL-2. So far I'm NED and have my 6 month scan of NED coming Oct 3rd which creates all kinds of anxiety….I ask myself daily…is this a durable response. I've just come to grips with that this is my life…not ideal but still good. I cherish everyday but still live in fear of what may be…we all cope differently and my hope is that whatever the outcome of your biopsy is that you stay strong and move forward. Wishing you all the best…

           

          Josh

           

          • September 16, 2014 at 2:50 am
          JoshF
          Participant

            Magnus-

            Wow….I know how tough this is. It has been just over a year since I was rediagnosed from what they think was Stage 3 to Stage 4 with metastasis to lungs. I originally was diagnosed a few days before my 40th birthday in 2011. I went 2.5 years with nothing, then…. Well you can read my timeline on profile as I want to address how I dealt with it.

            I lived 2.5 years of waiting for show to drop….and it did. I lived in such fear of going to Stage 4 that when it happened I wasn't as devastated as I was from intial diagnosis. That being said…I still struggle with balancing fear and rationality…not sure I'll ever be good at this but I somehow manage and I've realized a few things:

            1) Death isn't what I'm afraid of…it's how I die that really gets to me….we'd all to go peacefully in our sleep at old age. So I decided I will fight…

            2) What I am scared of is what I leave behind…2 young kids and a wife. I still have my dad and at 43 I can't imagine life without him. Much like him, I'm a good parent and feel that "not being there" is worst thing that can happen to my kids…this makes me lose all rartionality.

            3) Being Stage 4 is a scar…it never goes away but hopefully over time it will fade. I'm neurotic as hell. I have neck pain now and I think I have some kind of metastasis. I'm so hyper-sensitive that like you…I keep it from everyone because it can cause hysteria or I feel I'm looked at as hypochondriac. I feel like I deserve this….only us who have been diagnosed with melanoma or another cancer know what it feels like. I use this site as my sounding board…I never feel like I'm judged and get sound advice. I'm still waiting for scar to fade….

            As far as treatment, there are more options out there and there are many here who can give you sound advice. I did a trial of 2 approved drugs….Yervoy and IL-2. I did the Yervoy last Oct-Dec and did IL-2 in January. I had immediate response with Yervoy and did 22 of the 24 bags of IL-2. So far I'm NED and have my 6 month scan of NED coming Oct 3rd which creates all kinds of anxiety….I ask myself daily…is this a durable response. I've just come to grips with that this is my life…not ideal but still good. I cherish everyday but still live in fear of what may be…we all cope differently and my hope is that whatever the outcome of your biopsy is that you stay strong and move forward. Wishing you all the best…

             

            Josh

             

            • September 16, 2014 at 2:50 am
            JoshF
            Participant

              Magnus-

              Wow….I know how tough this is. It has been just over a year since I was rediagnosed from what they think was Stage 3 to Stage 4 with metastasis to lungs. I originally was diagnosed a few days before my 40th birthday in 2011. I went 2.5 years with nothing, then…. Well you can read my timeline on profile as I want to address how I dealt with it.

              I lived 2.5 years of waiting for show to drop….and it did. I lived in such fear of going to Stage 4 that when it happened I wasn't as devastated as I was from intial diagnosis. That being said…I still struggle with balancing fear and rationality…not sure I'll ever be good at this but I somehow manage and I've realized a few things:

              1) Death isn't what I'm afraid of…it's how I die that really gets to me….we'd all to go peacefully in our sleep at old age. So I decided I will fight…

              2) What I am scared of is what I leave behind…2 young kids and a wife. I still have my dad and at 43 I can't imagine life without him. Much like him, I'm a good parent and feel that "not being there" is worst thing that can happen to my kids…this makes me lose all rartionality.

              3) Being Stage 4 is a scar…it never goes away but hopefully over time it will fade. I'm neurotic as hell. I have neck pain now and I think I have some kind of metastasis. I'm so hyper-sensitive that like you…I keep it from everyone because it can cause hysteria or I feel I'm looked at as hypochondriac. I feel like I deserve this….only us who have been diagnosed with melanoma or another cancer know what it feels like. I use this site as my sounding board…I never feel like I'm judged and get sound advice. I'm still waiting for scar to fade….

              As far as treatment, there are more options out there and there are many here who can give you sound advice. I did a trial of 2 approved drugs….Yervoy and IL-2. I did the Yervoy last Oct-Dec and did IL-2 in January. I had immediate response with Yervoy and did 22 of the 24 bags of IL-2. So far I'm NED and have my 6 month scan of NED coming Oct 3rd which creates all kinds of anxiety….I ask myself daily…is this a durable response. I've just come to grips with that this is my life…not ideal but still good. I cherish everyday but still live in fear of what may be…we all cope differently and my hope is that whatever the outcome of your biopsy is that you stay strong and move forward. Wishing you all the best…

               

              Josh

               

              • September 16, 2014 at 4:23 pm
              ed williams
              Participant

                Hi Magnus, welcome to the stage 4 club. Over the last year this club has come a long way with the approval of the first PD-1 drug by Merck. At this time last year I had two appointments, one with a lawyer to make out a will and the second one with a financial planner to organize my finances. It was really a crazy time in my life, with brain scans and lung biopsy followed by a thyroid hemithyroid removal. Then the fun began, cyberknife for the brain mets followed by lots of waiting. Finally by January I was in Bristol Myer Squibbs trial of Ipi and Nivolumab (Pd-1), which has reduced the size of my two lung mets and kept me stable with no new mets showing up. I am able to exercise and doing most things that I used to do. Fatigue is the really only issue that I have to deal with. These new drugs are really amazing and the stats are great, don't even look at the old data on the internet. Look up videos from ASCO 2014 on Melanoma and Pd-1 drugs. There are lots of great people on the forum to answer questions you may have, don't be afraid to ask!!!!  I hope you are able to get access quickly to Immunotherapy treatments. Best of luck.  Ed

                • September 16, 2014 at 4:23 pm
                ed williams
                Participant

                  Hi Magnus, welcome to the stage 4 club. Over the last year this club has come a long way with the approval of the first PD-1 drug by Merck. At this time last year I had two appointments, one with a lawyer to make out a will and the second one with a financial planner to organize my finances. It was really a crazy time in my life, with brain scans and lung biopsy followed by a thyroid hemithyroid removal. Then the fun began, cyberknife for the brain mets followed by lots of waiting. Finally by January I was in Bristol Myer Squibbs trial of Ipi and Nivolumab (Pd-1), which has reduced the size of my two lung mets and kept me stable with no new mets showing up. I am able to exercise and doing most things that I used to do. Fatigue is the really only issue that I have to deal with. These new drugs are really amazing and the stats are great, don't even look at the old data on the internet. Look up videos from ASCO 2014 on Melanoma and Pd-1 drugs. There are lots of great people on the forum to answer questions you may have, don't be afraid to ask!!!!  I hope you are able to get access quickly to Immunotherapy treatments. Best of luck.  Ed

                  • September 16, 2014 at 4:23 pm
                  ed williams
                  Participant

                    Hi Magnus, welcome to the stage 4 club. Over the last year this club has come a long way with the approval of the first PD-1 drug by Merck. At this time last year I had two appointments, one with a lawyer to make out a will and the second one with a financial planner to organize my finances. It was really a crazy time in my life, with brain scans and lung biopsy followed by a thyroid hemithyroid removal. Then the fun began, cyberknife for the brain mets followed by lots of waiting. Finally by January I was in Bristol Myer Squibbs trial of Ipi and Nivolumab (Pd-1), which has reduced the size of my two lung mets and kept me stable with no new mets showing up. I am able to exercise and doing most things that I used to do. Fatigue is the really only issue that I have to deal with. These new drugs are really amazing and the stats are great, don't even look at the old data on the internet. Look up videos from ASCO 2014 on Melanoma and Pd-1 drugs. There are lots of great people on the forum to answer questions you may have, don't be afraid to ask!!!!  I hope you are able to get access quickly to Immunotherapy treatments. Best of luck.  Ed

                    • September 17, 2014 at 1:06 am
                    Mat
                    Participant

                      Magnus, everyday, I'm thankful that the toughest battles I've had to fight so far are the psychological and emotional battles of living with this disease.  Like Josh, I wonder whether every ache, pain or pimple is a new met.  Then, my thoughts move on–and most of the time, it seems like I'm not a Stage IV cancer patient.  Such is my melanoma-altered life.  Different strokes for different folks, but I found that MBSR–mindfulness based stress reduction (meditation) is very helpful.  Most teaching hospitals offer courses.

                      • September 17, 2014 at 1:06 am
                      Mat
                      Participant

                        Magnus, everyday, I'm thankful that the toughest battles I've had to fight so far are the psychological and emotional battles of living with this disease.  Like Josh, I wonder whether every ache, pain or pimple is a new met.  Then, my thoughts move on–and most of the time, it seems like I'm not a Stage IV cancer patient.  Such is my melanoma-altered life.  Different strokes for different folks, but I found that MBSR–mindfulness based stress reduction (meditation) is very helpful.  Most teaching hospitals offer courses.

                        • September 17, 2014 at 1:06 am
                        Mat
                        Participant

                          Magnus, everyday, I'm thankful that the toughest battles I've had to fight so far are the psychological and emotional battles of living with this disease.  Like Josh, I wonder whether every ache, pain or pimple is a new met.  Then, my thoughts move on–and most of the time, it seems like I'm not a Stage IV cancer patient.  Such is my melanoma-altered life.  Different strokes for different folks, but I found that MBSR–mindfulness based stress reduction (meditation) is very helpful.  Most teaching hospitals offer courses.

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