First Follow up from TIL Trial
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First Follow up from TIL Trial

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  • Post
    • May 25, 2018 at 1:20 pm
    mrsaxde
    Participant

    Well, I spent the last three days getting scanned at NIH, and met with my doctors yesterday. I got a decidedly mixed bag of results.

    The good news is there is nothing new growing anywhere. The so-so news is that out of the two tumors in my chest lymph nodes, one is slightly smaller but the other is slightly larger. They told me during treatment that this first follow up would not give them definitive news about my response. So right now I'm at "stable disease."

    Now the less than thrilling news…I have two small brain mets. One they found on the MRI they did before treatment, and they hoped that it would resolve from the TIL therapy. But it didn't. The other was also apparently there before, but it was small and situated in such a way that Dr. Shindorf said it looked to her like a blood vessel.

    So now it's on to radiation for the brain mets, and to hope for better news at my next follow up. Of course this news isn't devastating, but I would have liked it to have been better.

    I hope everyone has a pleasant weekend!

    -Bill

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  • Replies
      • May 25, 2018 at 5:49 pm
      Mat
      Participant

      Bill, sorry to hear–but still early as you know.  I don't recall if you've had brain mets before, but gamma-knife is a very easy procedure.

      • May 25, 2018 at 5:55 pm
      Bubbles
      Participant

      Well, YAY!!!   And…Poo!  But, overall way to go!  Very much hoping that things will only continue to improve.  Sorry you have to do it, but Mat is right, after all you've been through brain zappage will be a breeze!  Hang in there and keep us posted.  C

      • May 26, 2018 at 12:05 am
      ed williams
      Participant

      Always good to get them when they are small, I had 3 about 4-5 mm in size and cyberknife blew them away!!! You got this Bill, just another bump in your melanoma journey!!!All the best!!!Ed

        • May 26, 2018 at 1:20 am
        mrsaxde
        Participant

        Thanks Ed. That's good to know. My two are about the same size yours were.

      • May 26, 2018 at 1:48 am
      TexMelanomex
      Participant

      Hang in there Bill! I have a hunch that things will continue to improve and the Gamma Knige will take the fight to the brain mets hard! Keep warrioring on my friend and keep us posted!

       

        • May 26, 2018 at 2:36 am
        Mark_DC
        Participant

        Am wishing you the best Bill, too. Three days of scans cant have been fun either 🙁

        While its not great news, as everyone here says, the brain mets can be fixed relatively easily, and seems they were there before treatment. So you have stable disease and hope there will be an improvement next scans. will be wishing and praying for this.

        best wishes Mark

        • May 26, 2018 at 8:56 pm
        mrsaxde
        Participant

        Thanks Mark. Driving to Bethesda three times in three days was the most tiring part (although we took the Metro from New Carrollton 2 of the 3). They had to spread out the scans due to the MRI contrast, which is why it took 3 days. Still, not too bad overall. Now to get this radiation set up and finished by the end of June. I've hit my max out of pocket for my insurance this year (my plan renews on July 1), so anything I get done before July costs me exactly $0.00.

      • July 7, 2018 at 2:51 pm
      bjeans
      Participant

      Hi Bill – 

      I was AWOL here for about a month and realized I hadn’t read any posts by you after your lovely time at NIH, so went looking. A mixed bag, indeed, but certainly some real good and as people say, it’s early, plus it seems I’ve read quite a few posts where there was a bit of initial progression before regression. 

      Keep up the good work and hoping for great results – 

      Beth 

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