It’s back……2nd recurrence…..a few thoughts/questions????
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It’s back……2nd recurrence…..a few thoughts/questions????

› Forums › General Melanoma Community › It’s back……2nd recurrence…..a few thoughts/questions????

  • Post
    • November 3, 2015 at 3:03 pm
    jenny22
    Participant

    Hi All-

    Just as I was approaching the ONE YEAR mark from my first recurrence….coming up around NOV. 15th…..On Saturday evening I felt a little "bump" just above, but right near the incision….It looked and felt completely  different from the first one, which was hard….this one was soft and "squishy", so I was hopeful it may have been something else.

    First phone call  Monday morning was to my wonderful DOC, Anna Pavlick's office…..they said to come in  as soon as i could get there….as soon as she felt it she said it could be 50/50 and sent me upstairs for an FNA, they had the results by the time i got back to her office and it was positive for Melanoma, so my hopes of it being nothing were now gone…..She simultaneously set up CT scans for Head, neck, chest, abdomen and pelvis that same afternoon…..I got home at around 7 pm, and at 8:45 Dr. Pavlick called to tell me they didn't  have the NECK report back yet, but all others were CLEAN….such incredible relief…..am still waiting to hear  results from neck scan today.  SUCH  AN AMAZING DOCTOR AND PRACTICE,  unthinkable to have had all that done in one day, at a major NYC institution….I am now scheduled for tomorrow to see Dr. Coit and MSK who had done all my past surgeries…and hoping NECK scan wont show anything more than this new 5mm "bump"…

    OK, so now on to my question…Dr. Pavlick thinks we should now do radiation this time, as this is 2nd recurrence in same place, first one was last year almost same  time (I'm starting to HATE NOV/DEC….)  Her WORDS; she wants to "sterilize that neck area"

    I asked about doing IPI, especially now that its been approved in the adjuvant setting…she isnt in favor of that as thinks it still very small stuff, and toxity profile so high with IPI….also noting i did VACCINE trial at NYU this past spring, and had severe reaction at last treatment, and ended up with diahhrea and microscopic colitis for 2 months after the last injection, so she is afraid i'd end up in the hosiptal with IPI….

    I am just worried now, about when it is going to end up elsewhere….

    She is still so encouraging, and said this doesnt change my prognosis…..but still so scary.

    As Josh says, "this shit is unreal".

    Any thoughts anyone?

    Thanks ofr any input.

    best,

    jenny

Viewing 8 reply threads
  • Replies
      • November 3, 2015 at 4:25 pm
      arthurjedi007
      Participant

      Too bad you can't get pd1. It seems to be less toxic than ipi. I've had a lot of radiation and as long as they are talking 30 gray or less I would go for it in hopes of taking care of that area.

      Artie

      • November 3, 2015 at 4:25 pm
      arthurjedi007
      Participant

      Too bad you can't get pd1. It seems to be less toxic than ipi. I've had a lot of radiation and as long as they are talking 30 gray or less I would go for it in hopes of taking care of that area.

      Artie

        • November 3, 2015 at 5:07 pm
        jenny22
        Participant

        Thanks Artie-

        I am going to talk more with her regarding stystemic treatment.  As far as radiation, I will know more when i meet with someone.  Will get surgury scheduled first…..looks like wil happen within next week to 10 days or sooner if i can get that done..

         

        tks for your note, and hope you are doing OK.

         

        j.

        • November 3, 2015 at 5:07 pm
        jenny22
        Participant

        Thanks Artie-

        I am going to talk more with her regarding stystemic treatment.  As far as radiation, I will know more when i meet with someone.  Will get surgury scheduled first…..looks like wil happen within next week to 10 days or sooner if i can get that done..

         

        tks for your note, and hope you are doing OK.

         

        j.

        • November 3, 2015 at 5:07 pm
        jenny22
        Participant

        Thanks Artie-

        I am going to talk more with her regarding stystemic treatment.  As far as radiation, I will know more when i meet with someone.  Will get surgury scheduled first…..looks like wil happen within next week to 10 days or sooner if i can get that done..

         

        tks for your note, and hope you are doing OK.

         

        j.

      • November 3, 2015 at 4:25 pm
      arthurjedi007
      Participant

      Too bad you can't get pd1. It seems to be less toxic than ipi. I've had a lot of radiation and as long as they are talking 30 gray or less I would go for it in hopes of taking care of that area.

      Artie

      • November 3, 2015 at 5:32 pm
      BrianP
      Participant

      Sorry Jenny.  Does sound like you have an amazing team up there.  Not sure what I'd do in your shoes.  I think Pavlick's radiation suggestion does sound reasonable but I'd be having some of your same thoughts.  I Had radiation to my armpit area after my CLND and it was fairly uneventful for me.

      Brian

      • November 3, 2015 at 5:32 pm
      BrianP
      Participant

      Sorry Jenny.  Does sound like you have an amazing team up there.  Not sure what I'd do in your shoes.  I think Pavlick's radiation suggestion does sound reasonable but I'd be having some of your same thoughts.  I Had radiation to my armpit area after my CLND and it was fairly uneventful for me.

      Brian

      • November 3, 2015 at 5:32 pm
      BrianP
      Participant

      Sorry Jenny.  Does sound like you have an amazing team up there.  Not sure what I'd do in your shoes.  I think Pavlick's radiation suggestion does sound reasonable but I'd be having some of your same thoughts.  I Had radiation to my armpit area after my CLND and it was fairly uneventful for me.

      Brian

      • November 3, 2015 at 6:26 pm
      JoshF
      Participant

      Jenny-

      Sorry to hear this!!! I'm glad they act so quickly, really helps alleviate the anxiety and getting on with a plan! I have a good team but this Dr. Pavlick sounds amazing. I've heard the name but not familiar with her outside of being a melanoma specialist. Ask her if she's got room for me 🙂

      From day 1 I've always been hopeful I could do something ajuvant to prevent recurrence. Unfortunately as we know, there hasn't been much and know we're in the infancy of seeing what these drugs can do to rpevent recurrence. You have to do what makes you comfortable….the only advice I give is remain diligent. If you can get to it early it may help your prognosis….stay on top of it!!! Your neck scan will be good!!!! I'm hours aways from getting my scan results…oh joyous times!!!

      Be well!

      Josh

      • November 3, 2015 at 6:26 pm
      JoshF
      Participant

      Jenny-

      Sorry to hear this!!! I'm glad they act so quickly, really helps alleviate the anxiety and getting on with a plan! I have a good team but this Dr. Pavlick sounds amazing. I've heard the name but not familiar with her outside of being a melanoma specialist. Ask her if she's got room for me 🙂

      From day 1 I've always been hopeful I could do something ajuvant to prevent recurrence. Unfortunately as we know, there hasn't been much and know we're in the infancy of seeing what these drugs can do to rpevent recurrence. You have to do what makes you comfortable….the only advice I give is remain diligent. If you can get to it early it may help your prognosis….stay on top of it!!! Your neck scan will be good!!!! I'm hours aways from getting my scan results…oh joyous times!!!

      Be well!

      Josh

        • November 3, 2015 at 6:43 pm
        jenny22
        Participant

        Hi Josh-

        I know you are waitng for yor results…I kept checking to see if you'd posted anything….I am SOOO hoping for you its only  (only????) a dermal subq and nothing more. 

        Dr. Pavlick is honsety one of the most amazing DOCs Ive ever HAD to know.  Have had too much experience  too….my husband is a 6.5 year STAGE IIIA lung cancer survivor…we had great docs for him too, but i dont think ANY comapre to Pavlick and her entire staff.

        When I was there yesterday i saw jeff weber roaming around too, it was his first day there…..they have some real heavy hitters there now.

        I had my intial surgery at MSK with Dan Coit, another notable one…..Pavlick wants me to stay with him for all future surgery…..speaks highly of him too!

        I am always vigilent, but still want to further discuss adjuvant systemic treatment in addtion to the radiation.

        Will pursue more once srugery is completed.

        Josh- please post as soon as you have your scan results.

        Best to us all.

        jenny

        • November 3, 2015 at 6:43 pm
        jenny22
        Participant

        Hi Josh-

        I know you are waitng for yor results…I kept checking to see if you'd posted anything….I am SOOO hoping for you its only  (only????) a dermal subq and nothing more. 

        Dr. Pavlick is honsety one of the most amazing DOCs Ive ever HAD to know.  Have had too much experience  too….my husband is a 6.5 year STAGE IIIA lung cancer survivor…we had great docs for him too, but i dont think ANY comapre to Pavlick and her entire staff.

        When I was there yesterday i saw jeff weber roaming around too, it was his first day there…..they have some real heavy hitters there now.

        I had my intial surgery at MSK with Dan Coit, another notable one…..Pavlick wants me to stay with him for all future surgery…..speaks highly of him too!

        I am always vigilent, but still want to further discuss adjuvant systemic treatment in addtion to the radiation.

        Will pursue more once srugery is completed.

        Josh- please post as soon as you have your scan results.

        Best to us all.

        jenny

        • November 3, 2015 at 6:43 pm
        jenny22
        Participant

        Hi Josh-

        I know you are waitng for yor results…I kept checking to see if you'd posted anything….I am SOOO hoping for you its only  (only????) a dermal subq and nothing more. 

        Dr. Pavlick is honsety one of the most amazing DOCs Ive ever HAD to know.  Have had too much experience  too….my husband is a 6.5 year STAGE IIIA lung cancer survivor…we had great docs for him too, but i dont think ANY comapre to Pavlick and her entire staff.

        When I was there yesterday i saw jeff weber roaming around too, it was his first day there…..they have some real heavy hitters there now.

        I had my intial surgery at MSK with Dan Coit, another notable one…..Pavlick wants me to stay with him for all future surgery…..speaks highly of him too!

        I am always vigilent, but still want to further discuss adjuvant systemic treatment in addtion to the radiation.

        Will pursue more once srugery is completed.

        Josh- please post as soon as you have your scan results.

        Best to us all.

        jenny

      • November 3, 2015 at 6:26 pm
      JoshF
      Participant

      Jenny-

      Sorry to hear this!!! I'm glad they act so quickly, really helps alleviate the anxiety and getting on with a plan! I have a good team but this Dr. Pavlick sounds amazing. I've heard the name but not familiar with her outside of being a melanoma specialist. Ask her if she's got room for me 🙂

      From day 1 I've always been hopeful I could do something ajuvant to prevent recurrence. Unfortunately as we know, there hasn't been much and know we're in the infancy of seeing what these drugs can do to rpevent recurrence. You have to do what makes you comfortable….the only advice I give is remain diligent. If you can get to it early it may help your prognosis….stay on top of it!!! Your neck scan will be good!!!! I'm hours aways from getting my scan results…oh joyous times!!!

      Be well!

      Josh

Viewing 8 reply threads
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