Update
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Update

› Forums › General Melanoma Community › Update

  • Post
    • May 10, 2014 at 5:10 pm
    JoshF
    Participant

    Hi all-

    well it's been 3 months since I had scan after completing trial of ipi then HD IL-2. I did ipi Oct-Dec last year and then IL2 in Jan. Scan on Feb 17…NED. Scan yesterday….NED!!!! Obviously I'm very happy but I can never lose uncertainty. First question I ask is what is prognosis in comparison to other patients who've responded like me. Is it the IL2 or ipi…or both???? It's like I almost feel guilty or it's too good to be true. Am I crazy or is this normal? 

    So my oncologist gave me option of scan in mid August or push it out to beginning of Oct. she felt comfortable waiting as she said there is no disease to track. Am I crazy for doing this? The rationale is over exposure to radiation as like many of you…I've had my fair share of runs through the tube! The study I'm on requires scan in Oct-Nov as this is the 1yr time frame.

    i hope everyone here is well. This site and many of the people have been a tremendous resource & support. I can only hope that treatments that have a broader scope in helping people are in the near future….c'mon PD-1!!!!

    josh

Viewing 14 reply threads
  • Replies
      • May 10, 2014 at 5:57 pm
      SABKLYN
      Participant

      Great news Josh!  I don't think the 4-6 weeks would make much difference.  However, like many things we have to decide with this disease, it's all about what makes you most comfortable.  

      • May 10, 2014 at 5:57 pm
      SABKLYN
      Participant

      Great news Josh!  I don't think the 4-6 weeks would make much difference.  However, like many things we have to decide with this disease, it's all about what makes you most comfortable.  

        • May 10, 2014 at 8:51 pm
        sofistef
        Participant

        Josh,

        this is wonderful news! Congratulations and stay always NED! I followed your story closely, I also became stage 4 about the same time as you did, I'm not NED yet, I only have a tumor in a hilar node, that stayed the unchanged since the begining of treatment in November! I'm on Ippi/ Nivo/ippi +nivo trial and hope to see NED on my scans soon!

        Dana

        • May 10, 2014 at 8:51 pm
        sofistef
        Participant

        Josh,

        this is wonderful news! Congratulations and stay always NED! I followed your story closely, I also became stage 4 about the same time as you did, I'm not NED yet, I only have a tumor in a hilar node, that stayed the unchanged since the begining of treatment in November! I'm on Ippi/ Nivo/ippi +nivo trial and hope to see NED on my scans soon!

        Dana

        • May 10, 2014 at 9:42 pm
        MattF
        Participant

        Josh 

        Great news….

        Dana I too became stage IV last year…..

        I had a Scan yesterday May 9 2012…..get results next week.

         

        I'm on the BRAK combo…5th month on the Meds.

         

        last scan showed…..smaller lesions on femur, humurus, rib, cage, tail bone, etc….so hoping for continued  shrinkage or stable on this one.

        Stay Well.

        Matt

        • May 10, 2014 at 9:42 pm
        MattF
        Participant

        Josh 

        Great news….

        Dana I too became stage IV last year…..

        I had a Scan yesterday May 9 2012…..get results next week.

         

        I'm on the BRAK combo…5th month on the Meds.

         

        last scan showed…..smaller lesions on femur, humurus, rib, cage, tail bone, etc….so hoping for continued  shrinkage or stable on this one.

        Stay Well.

        Matt

        • May 10, 2014 at 9:42 pm
        MattF
        Participant

        Josh 

        Great news….

        Dana I too became stage IV last year…..

        I had a Scan yesterday May 9 2012…..get results next week.

         

        I'm on the BRAK combo…5th month on the Meds.

         

        last scan showed…..smaller lesions on femur, humurus, rib, cage, tail bone, etc….so hoping for continued  shrinkage or stable on this one.

        Stay Well.

        Matt

        • May 10, 2014 at 8:51 pm
        sofistef
        Participant

        Josh,

        this is wonderful news! Congratulations and stay always NED! I followed your story closely, I also became stage 4 about the same time as you did, I'm not NED yet, I only have a tumor in a hilar node, that stayed the unchanged since the begining of treatment in November! I'm on Ippi/ Nivo/ippi +nivo trial and hope to see NED on my scans soon!

        Dana

      • May 10, 2014 at 5:57 pm
      SABKLYN
      Participant

      Great news Josh!  I don't think the 4-6 weeks would make much difference.  However, like many things we have to decide with this disease, it's all about what makes you most comfortable.  

      • May 12, 2014 at 12:02 am
      joy_
      Participant

      So happy for you!! Thanks for sharing your good news!

      • May 12, 2014 at 12:02 am
      joy_
      Participant

      So happy for you!! Thanks for sharing your good news!

      • May 12, 2014 at 12:02 am
      joy_
      Participant

      So happy for you!! Thanks for sharing your good news!

      • May 12, 2014 at 12:54 pm
      Tina D
      Participant

      WOW! This is awesome 🙂

      Glad you shared!!

      No advice for the scans, that is always such a challenge to know. Pretty sure I glow when the lights are off.

      I am just so glad you have gotten such a tremendous report!!!

      Tina

      • May 12, 2014 at 12:54 pm
      Tina D
      Participant

      WOW! This is awesome 🙂

      Glad you shared!!

      No advice for the scans, that is always such a challenge to know. Pretty sure I glow when the lights are off.

      I am just so glad you have gotten such a tremendous report!!!

      Tina

      • May 12, 2014 at 12:54 pm
      Tina D
      Participant

      WOW! This is awesome 🙂

      Glad you shared!!

      No advice for the scans, that is always such a challenge to know. Pretty sure I glow when the lights are off.

      I am just so glad you have gotten such a tremendous report!!!

      Tina

      • May 12, 2014 at 3:28 pm
      kpcollins31
      Participant

      Congratulations, Josh – great news to hear!

      Kevin

       

      • May 12, 2014 at 3:28 pm
      kpcollins31
      Participant

      Congratulations, Josh – great news to hear!

      Kevin

       

      • May 12, 2014 at 3:28 pm
      kpcollins31
      Participant

      Congratulations, Josh – great news to hear!

      Kevin

       

      • May 13, 2014 at 12:29 am
      JerryfromFauq
      Participant

      Love it!!  I would give the combination a lot of credit.  Understand about the watching for excess radiation.  Even though I have innumerable stable tumors I only get scanned every six months.  (as long as the tumor on my neck doen't start growing again! I shrunk from a nodule to flat about 5 years ago!  Ssosmetimes the other shoe never drops!!!) 

       

       

      • May 13, 2014 at 12:29 am
      JerryfromFauq
      Participant

      Love it!!  I would give the combination a lot of credit.  Understand about the watching for excess radiation.  Even though I have innumerable stable tumors I only get scanned every six months.  (as long as the tumor on my neck doen't start growing again! I shrunk from a nodule to flat about 5 years ago!  Ssosmetimes the other shoe never drops!!!) 

       

       

        • May 13, 2014 at 6:03 pm
        Brendan
        Participant

        Great news, Josh!  Congratulations.  Thanks for sharing.

        Brendan

        • May 13, 2014 at 6:03 pm
        Brendan
        Participant

        Great news, Josh!  Congratulations.  Thanks for sharing.

        Brendan

        • May 13, 2014 at 6:03 pm
        Brendan
        Participant

        Great news, Josh!  Congratulations.  Thanks for sharing.

        Brendan

      • May 13, 2014 at 12:29 am
      JerryfromFauq
      Participant

      Love it!!  I would give the combination a lot of credit.  Understand about the watching for excess radiation.  Even though I have innumerable stable tumors I only get scanned every six months.  (as long as the tumor on my neck doen't start growing again! I shrunk from a nodule to flat about 5 years ago!  Ssosmetimes the other shoe never drops!!!) 

       

       

Viewing 14 reply threads
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