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Disappointed but not giving up
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Disappointed but not giving up

› Forums › General Melanoma Community › Disappointed but not giving up

  • Post
    • April 7, 2017 at 12:29 pm
    rabbits68
    Participant

      Yesterday was my screening at NIH for TIL trial.  I was impressed with the campus and staff, but I didn't qualify for the trial.  My blood work did not meet the requirements, mainly my white/ tcells and liver counts.  They didn't feel like my cells would grow or be viable for the treatment.  I was disappointed, but glad I went.  I guess we will next go to Sloan Kettering for other options. My physician is considering some type of combo therapy like ipi/nivo but wants a melanoma specialists to see me.  Still hoping and trusting there is something out there for me.  God's Got This!

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        • April 7, 2017 at 12:49 pm
        David McCaw
        Participant

          I am sorry, you did not pass the assessment.  I will be going through a similar exercise in Canada,  starting on April 25.  Ipi/nivo  failed for me, although i did 4 combos and 2 monos.  I have been on MEK inhibitors cotellic for two weeks,  but no shrinkage yet. I have a rare braf mutation,  k601n.  I wish you well in your journey at MSK,  I might be down there or another location if the Tils trial does not pan out. Since all i am being offered later is tvec which probably won't help my liver or lungs.  Don't give up hope.  keep going.

            • April 8, 2017 at 12:20 pm
            rabbits68
            Participant

              Thank you for the encouraging words.   I also hope you are able to find something that works for you.  I know they are working hard at finding a cure, but we have to keep going until that day comes.  Maybe our paths will cross some day.  Lisa

            • April 7, 2017 at 10:25 pm
            David McCaw
            Participant
              Lisa, what are the WBC and liver minimums for the Tils trial? Which trial at msk is your onc recommending, possibly this one, NCT02535078, IMCgp100-201, Phase 1b/2 Study of the Combination of IMCgp100 With Durvalumab and/or Tremelimumab in Cutaneous Melanoma; the prime is Alexander N. Shoushtari from Memorial Sloan Kettering Cancer Center.

              Also, Ed Williams provided me information on an interesting trial in Salt Lake city, where they are working to getting patients that did not respond to pd1 and have got more than 40% according to an Asco report.NCT02493361, 15852, Trial of pIL-12/MK-3475 in Metastatic Melanoma, contact Tamara, (801) 587-4767,[email protected]

                • April 8, 2017 at 12:25 pm
                rabbits68
                Participant

                  I am seeing Dr Shoushtari but we are going for a consultation and they will try to match me to something if available.  I really don't know the minimums for the trial, but I just finished radiation  to the bone and chemo so I think my numbers will come up soon.  I will look into the trial in Salt Lake, thankeep you for passing that information to me.

                • April 9, 2017 at 12:30 am
                tschmith
                Participant

                  I hope your numbers come up!!!!  Will NIH reconsider if they do?  I was treated there for a Gene transfer therapy much like TIL.  (Oh…the trial was not considered a success.  I began Keytruda shortly thereafter and it worked.  I've been in remission since June of 2015.)

                  My best to you!

                  Terrie

                    • April 10, 2017 at 6:53 pm
                    rabbits68
                    Participant
                      I was told TIL, in their opinion, should be off the table for me. Will see what Dr In NYC says. I am so glad you have had success with your treatment. Hoping to find the right treatment for me.
                    • April 10, 2017 at 7:13 pm
                    BrianP
                    Participant

                      Lisa,

                      Just wondering if you've considered MDA for TIL.  They have a much less restrictive criteria for their TIL trials (NIH is known to have a very high criteria which is often critized.  Some say they have the best results because they only take the most carefully picked patients).

                      If you are willing to travel for a trial you might want to consider Duke.  3.5 hour drive from Greenville and they do seem to have a lot of different trials going on right now. 

                      Brian

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