The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Sitting Here In Limbo…..

Forums General Melanoma Community Sitting Here In Limbo…..

  • Post
    mrsaxde
    Participant

      "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.

      -Bill

    Viewing 2 reply threads
    • Replies
        mrsaxde
        Participant

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

            casagrayson
            Participant

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

              WithinMySkin
              Participant
                Yes! Keep squeaking and advocating for yourself!
              lkb
              Participant

                Glad you've got a song!

                VinceMart
                Participant

                  Hoping things get rolling soon for you.  Vince

                    Mark_DC
                    Participant

                      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

                Viewing 2 reply threads
                • You must be logged in to reply to this topic.
                About the MRF Patient Forum

                The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                Popular Topics