NIH in Bethesda… Any luck?
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NIH in Bethesda… Any luck?

› Forums › General Melanoma Community › NIH in Bethesda… Any luck?

  • Post
    • March 6, 2014 at 3:31 pm
    odonoghue80
    Participant

    Hi, I am just curious if many out there have ever went to study at the NIH in Bethesda, MD. I don't see often posts about going to the NIH and their experiences. About 1.5 years ago I started a correspondence with the research nurses there, but everything was so slow. I faxed all my records and spoke to them a few times over the phone. They would never reply to me. And when I would press them, they would ask for my records again. I would told them, 'You have my records, you have my confirmations of them'. Bottom line it was so difficult, I went through other avenues.

    Now, I'm at the point where I need to make decisions again, and get as many options out there that I can. To me, going for the TIL treatment seems attractive to me, but I can't find a faster track to communicate with the nurses at NIH. 

    If anybody has went for study at NIH, can you share your experiences and what they were like. I'm aware it's not a "normal" consultation, but I can't seem to understand how they operate.

    Thanks,

    Shane

     

Viewing 8 reply threads
  • Replies
      • March 6, 2014 at 3:45 pm
      JC
      Participant

      Are you in Illinois?  What Dr/hospital do you see in Illinois?

      • March 6, 2014 at 3:45 pm
      JC
      Participant

      Are you in Illinois?  What Dr/hospital do you see in Illinois?

      • March 6, 2014 at 3:45 pm
      JC
      Participant

      Are you in Illinois?  What Dr/hospital do you see in Illinois?

      • March 6, 2014 at 5:03 pm
      Cooper
      Participant

      Well NIH is kind of slow on the newest treatments, they do a lot of IL2 and TIL treatment.  Then when folks fail that they send them to find PD1 trials.  Our tax dollars arent being spent good there.

      • March 6, 2014 at 5:03 pm
      Cooper
      Participant

      Well NIH is kind of slow on the newest treatments, they do a lot of IL2 and TIL treatment.  Then when folks fail that they send them to find PD1 trials.  Our tax dollars arent being spent good there.

      • March 6, 2014 at 5:03 pm
      Cooper
      Participant

      Well NIH is kind of slow on the newest treatments, they do a lot of IL2 and TIL treatment.  Then when folks fail that they send them to find PD1 trials.  Our tax dollars arent being spent good there.

      • March 6, 2014 at 9:26 pm
      Mat
      Participant

      Shane, best to have your oncologist deal with them (June Kryk?) directly.  When I was initially diagnosed, my oncologist called and I was seen within 2-3 weeks.  Didn't work out for me at that time, but not because of bureaucratic issues.

      • March 6, 2014 at 9:26 pm
      Mat
      Participant

      Shane, best to have your oncologist deal with them (June Kryk?) directly.  When I was initially diagnosed, my oncologist called and I was seen within 2-3 weeks.  Didn't work out for me at that time, but not because of bureaucratic issues.

      • March 6, 2014 at 9:26 pm
      Mat
      Participant

      Shane, best to have your oncologist deal with them (June Kryk?) directly.  When I was initially diagnosed, my oncologist called and I was seen within 2-3 weeks.  Didn't work out for me at that time, but not because of bureaucratic issues.

        • March 7, 2014 at 11:12 am
        tschmith
        Participant

        My doctor referred me and I will soon be participating in a gene therapy trial at NIH.  I think it's best to have your doctor do the footwork.  I've been very happy with the quality of care I've received.

        Terrie

        • March 7, 2014 at 11:12 am
        tschmith
        Participant

        My doctor referred me and I will soon be participating in a gene therapy trial at NIH.  I think it's best to have your doctor do the footwork.  I've been very happy with the quality of care I've received.

        Terrie

        • March 7, 2014 at 11:12 am
        tschmith
        Participant

        My doctor referred me and I will soon be participating in a gene therapy trial at NIH.  I think it's best to have your doctor do the footwork.  I've been very happy with the quality of care I've received.

        Terrie

Viewing 8 reply threads
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