Update on NIH Trial

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  • #78716
    lainy
    Member

    Dear Melinda, you have taken a ride on the CC roller coaster and I am so glad the ride seems to have stopped. I am wishing for you to have great results this week and hoping for you to stick to skis instead of roller coasters! Best of luck on the check up.

    #78715
    marions
    Moderator

    Melinda…don’t be sorry – we are over the moon hearing from you. So glad you have recovered and these 127 T cells are working wonders for you.
    When you are up to it, dear Melinda, you might want to place your caringbridge site in our blog thread. This way it won’t get lost in the postings.
    http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=31

    Looking forward to your update next week.
    Hugs
    Marion

    #9404
    mbachini
    Moderator

    Hi everyone!

    I am so sorry it has been so long since I have posted…..no good excuse. I will do my best to catch you all up on what has been happening.

    I believe the last I posted was that my tumors were just starting to grow after a great year on this trial…..last August when I went in for my checkup the team of doctors deemed progression and became urgent to repeat the TIL protocol for me. They explained that my DNA mutates somewhere around 20 times before it turns to cancer and that they had identified a specific T cell of mine that recognized a specific mutation. I am sure that I am probably not explaining this exactly as they did, but this is how my simple mind understood it. This was discovered after my first treatment. They wanted to retreat me as soon as possible and I was all for it!!!

    In September 2013, they removed 3 of the larger tumors from my right lung this time….now I have matching scars on each side:) They harvested the lymphocytes and grew them in the lab again for 3 weeks, specifically growing the cell that is reactive to my tumor.

    In October my husband and I returned to NIH for treatment. I felt stronger going into this treatment than the first but I have to admit it was harder this time around…..the week of chemo to suppress my immune system sucked as usual but was tolerable. This time I received 127 BILLION cells back into me with about 90-95% of them being that “special T cell”…..compared to the 42 Billion the first time with only about 25% of them being that ” special cell”. I again only made it through 4 doses of IL2, which hit me harder this time around. IL2 helps to facilitate the cells to be active or something like that, all I know is it gave me some pretty comical hallucinations and sent my creatinine through the roof. It also was harder this time just because of the number of cells infused. It was a huge immune response…which is what makes you feel yucky when you are sick. I made it, and my counts came back enough to go home on November 8th. Recovery was a bit harder this time but within 2 weeks I was up and at it and each day got a little better.

    My first checkup was December 5th, 2013….with GREAT results. My liver tumors had shrunk and most of my lung tumors as well….they estimated about a 15% overall shrinkage in the first month. I am due to head back to NIH in the morning and I will have results of my second checkup on Thursday. I am expecting great results again. I have felt awesome, even skied on Christmas day and kept up with the kids!

    I invite you all to look at my caring bridge site http://www.caringbridge.org/visit/melindabachini ….I tried to document this treatment as best I could this time around.

    I will update with results this week….you are all always in my thoughts and prayers …..hugs, Melinda

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