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Sitting Here In Limbo…..

Forums General Melanoma Community Sitting Here In Limbo…..

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      "Sitting here in limbo….but I know it won't be long…." So sang Jimmy Cliff. In my case I'm starting to wonder how long.

      I saw Dr. Sharfman on 12/6. He ordered a brain MRI because the one I had at NIH showed two questionable new spots but somebody there goofed and the scan was done without contrast. It took until this past Tuesday morning for his secretary who handles insurance to get all the records she needed to send to Blue Cross so they could farm them out to the outfit that decides for them whether they should pay for "high tech" imaging. She said she expected to hear back from them by Wednesday or Thursday. I still haven't heard anything. Nothing scheduled yet. Yeah, let's talk about "wait times" in other countries.

      NIH is supposed to be testing my cells to see if I qualify for the MAGE protocol. Two weeks and I've heard nothing from them, after being told it would be about a week. Frankly I'm not too concerned about this because I've largely decided not to go through that — the same procedure as the TIL trial, sans surgery — again.

      Everybody agrees that I need some sort of treatment. But Dr. Sharfman can't look for a trial until it has been determined whether I need more brain radiation, and that can't be determined until I get this damned MRI that my insurance seems to be in no hurry to do anything with. (This isn't an end of year scenario where they're trying to have me pay more by not approving it until after 1/1. My insurance year starts 7/1.) For want of a nail, the horse was lost….

      At least I've been feeling better the last few days. I'd be losing it by now if I wasn't feeling good.

      "Sitting here in limbo, but I know it won't be long.

      "Sitting here in limbo, like a bird without a song.

      "They're putting up resistance, but I know that my faith will lead me home."

      Thanks for the chance to vent.


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          Every time I post something here things get done. I should try it more often. My MRI is scheduled for Tuesday afternoon. 🙂


              It's always the squeaky wheel …. even if you only squeaked to us!

                Yes! Keep squeaking and advocating for yourself!

                Glad you've got a song!


                  Hoping things get rolling soon for you.  Vince


                      Hoping that you are approved for the MRI by now and thatresults are good. Not sure why they didnt use contrast – was the order not clear? My scan orders are often confusing too.

                      Two weeks ago my hospital called me to say they had lost my bloodwork from the previous day and could I come back and retake? I had a fllight that evening so could not go back. i didnt know what to think! (Not exactly confidence inspiring)so i know the feeling Bill and hope something by now is working out

                      best wishes Mark

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