› Forums › General Melanoma Community › NIH in Bethesda… Any luck?
- This topic has 12 replies, 4 voices, and was last updated 10 years, 2 months ago by tschmith.
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- March 6, 2014 at 3:31 pm
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
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- March 6, 2014 at 9:26 pm
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.
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