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Intro to MPIP! New diagnosis S2a

Forums General Melanoma Community Intro to MPIP! New diagnosis S2a

  • Post
    Bigdaddy5
    Participant

      Sorry. I really don't wish to be here reading all your posts. But I am. I'm really pissed  I appreciate your info – and I figured I should introduce myself and perhaps be able to find the good in all of this.

      Me: I'm a Caucasian male 46 years of age.  About 74 inches and 225 pounds.  Father of 5 with my oldest at 21 and youngest at 12 (three in college this September).  I own a small business with 10 employees.  Been very active past 2 years and got into shape and began using "Loseit" app to record every crumb of food I ate since 5/2014 through today.  I lost forty pounds at my peak weight of 215 last September.  My running progressed in that last year I ran two marathons (very slowly) but I managed to beat Oprah's time on my first try!

      I was diagnosed stage 2a on 2/16 based on t3a biopsy returned from a mole scraped off right front torso.  Had wide excision surgery with sentinel lymph node biopsy on 2/25 where two lymph nodes were removed from right armpit area.  I sit here in my bed reading all your stuff trying to see what path lay ahead for me and my squad.  Not clear at all.  Being treated at Inova Melanoma Center in Fairfax, VA.

      Thanks for letting me introduce myself!

      Neil D

       

    Viewing 5 reply threads
    • Replies
        Eileensulliv
        Participant

          Hi Neil,

          I'm sorry you are going through this! I know how angry and scared I get at times, as I'm sure many on this board can relate. I know others have better medical advice than I do usually, but I can tell you that a friend of mine did receive treatment at the same place as you (different type of cancer) and she is now cancer free for a few years. She speaks highly of the care she received. It is best that you see a melanoma specialist. I really hope you beat this!

          On a side note, I am not too far from you, as I am in Montgomery County, MD. I see Dr. Sharfman at Johns Hopkins for Stage IV. I was on the ipi/nivo trial, but trial closed and I was receiving just nivo until two weeks ago, due to complications. Hopefully will start again soon!

            Bigdaddy5
            Participant

              Nice to meet you Eileen. Thanks for your response. I'll be better when slnb biopsy result call comes regardless of result. Not knowing making me crazy. 

              Thanks!

              Neil D

              Bigdaddy5
              Participant

                Nice to meet you Eileen. Thanks for your response. I'll be better when slnb biopsy result call comes regardless of result. Not knowing making me crazy. 

                Thanks!

                Neil D

                Bigdaddy5
                Participant

                  Nice to meet you Eileen. Thanks for your response. I'll be better when slnb biopsy result call comes regardless of result. Not knowing making me crazy. 

                  Thanks!

                  Neil D

                Eileensulliv
                Participant

                  Hi Neil,

                  I'm sorry you are going through this! I know how angry and scared I get at times, as I'm sure many on this board can relate. I know others have better medical advice than I do usually, but I can tell you that a friend of mine did receive treatment at the same place as you (different type of cancer) and she is now cancer free for a few years. She speaks highly of the care she received. It is best that you see a melanoma specialist. I really hope you beat this!

                  On a side note, I am not too far from you, as I am in Montgomery County, MD. I see Dr. Sharfman at Johns Hopkins for Stage IV. I was on the ipi/nivo trial, but trial closed and I was receiving just nivo until two weeks ago, due to complications. Hopefully will start again soon!

                  Eileensulliv
                  Participant

                    Hi Neil,

                    I'm sorry you are going through this! I know how angry and scared I get at times, as I'm sure many on this board can relate. I know others have better medical advice than I do usually, but I can tell you that a friend of mine did receive treatment at the same place as you (different type of cancer) and she is now cancer free for a few years. She speaks highly of the care she received. It is best that you see a melanoma specialist. I really hope you beat this!

                    On a side note, I am not too far from you, as I am in Montgomery County, MD. I see Dr. Sharfman at Johns Hopkins for Stage IV. I was on the ipi/nivo trial, but trial closed and I was receiving just nivo until two weeks ago, due to complications. Hopefully will start again soon!

                    Maria C
                    Participant

                      Hi Neil – 

                      I'm sorry you're dealing with all this too, and in that way know how you feel. Last type of online community I ever wanted to join would be a rare cancer one….yet here we are. And we're not supposed to be angry but rather grateful – for all the support, for the competency of our doctors and the breakthroughs in cancer research and therapy. And I am grateful, very grateful (I keep a gratitude journal), but I get the anger piece too… Unfortunately, there's no where to direct the anger, because it's really no one's "fault."

                      Regarding treatment, my best advice would be to seek second, third, fourth opinions, if possible. I saw Dr. Sharfman at John Hopkins as a second opinion and he was extremely helpful. He helped convince me that the nivo/ipi was my best shot at beating this, and helped me understand why. Fortunately, right when I was making these decisions that combo became FDA approved for Stage IV melanoma, so there's a lot more flexibility than others might have had on the clinical trials (which are much stricter to enter). I don't know, however, if it's been approved for Stage 2a, or that's more of a wait and see stage?

                      Best of everything Neil, as you navigate through this difficult journey ahead.

                       

                        Bigdaddy5
                        Participant

                          Hi Maria:

                          thanks for your response.  I will look into Dr. Sharfman based on the recommendations here and the results of the slnb and the need to interpret a treatment plan from my oncologist as I potentially slip to stage 3 in week 2. 

                          thanks for your kind words and I'll add you and Eileen to my prayers. 

                          Kindest regards,

                           

                          Neil D

                          Bigdaddy5
                          Participant

                            Hi Maria:

                            thanks for your response.  I will look into Dr. Sharfman based on the recommendations here and the results of the slnb and the need to interpret a treatment plan from my oncologist as I potentially slip to stage 3 in week 2. 

                            thanks for your kind words and I'll add you and Eileen to my prayers. 

                            Kindest regards,

                             

                            Neil D

                            Bigdaddy5
                            Participant

                              Hi Maria:

                              thanks for your response.  I will look into Dr. Sharfman based on the recommendations here and the results of the slnb and the need to interpret a treatment plan from my oncologist as I potentially slip to stage 3 in week 2. 

                              thanks for your kind words and I'll add you and Eileen to my prayers. 

                              Kindest regards,

                               

                              Neil D

                            Maria C
                            Participant

                              Hi Neil – 

                              I'm sorry you're dealing with all this too, and in that way know how you feel. Last type of online community I ever wanted to join would be a rare cancer one….yet here we are. And we're not supposed to be angry but rather grateful – for all the support, for the competency of our doctors and the breakthroughs in cancer research and therapy. And I am grateful, very grateful (I keep a gratitude journal), but I get the anger piece too… Unfortunately, there's no where to direct the anger, because it's really no one's "fault."

                              Regarding treatment, my best advice would be to seek second, third, fourth opinions, if possible. I saw Dr. Sharfman at John Hopkins as a second opinion and he was extremely helpful. He helped convince me that the nivo/ipi was my best shot at beating this, and helped me understand why. Fortunately, right when I was making these decisions that combo became FDA approved for Stage IV melanoma, so there's a lot more flexibility than others might have had on the clinical trials (which are much stricter to enter). I don't know, however, if it's been approved for Stage 2a, or that's more of a wait and see stage?

                              Best of everything Neil, as you navigate through this difficult journey ahead.

                               

                              Maria C
                              Participant

                                Hi Neil – 

                                I'm sorry you're dealing with all this too, and in that way know how you feel. Last type of online community I ever wanted to join would be a rare cancer one….yet here we are. And we're not supposed to be angry but rather grateful – for all the support, for the competency of our doctors and the breakthroughs in cancer research and therapy. And I am grateful, very grateful (I keep a gratitude journal), but I get the anger piece too… Unfortunately, there's no where to direct the anger, because it's really no one's "fault."

                                Regarding treatment, my best advice would be to seek second, third, fourth opinions, if possible. I saw Dr. Sharfman at John Hopkins as a second opinion and he was extremely helpful. He helped convince me that the nivo/ipi was my best shot at beating this, and helped me understand why. Fortunately, right when I was making these decisions that combo became FDA approved for Stage IV melanoma, so there's a lot more flexibility than others might have had on the clinical trials (which are much stricter to enter). I don't know, however, if it's been approved for Stage 2a, or that's more of a wait and see stage?

                                Best of everything Neil, as you navigate through this difficult journey ahead.

                                 

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