Home Forums Melanoma Diagnosis: Stage IV short update – my sister anti PD1 trial (BMS)

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    Dear all,

    I did not write for an while, but I was reading you and hoping everyday to hear good news.

    We lived a very tensioned in December last year during my sister evaluation for a Nivolumab clinical trial. Her health had deteriorated a lot in that period and we were thinking she cannot make it. The main problem was/is a very big tumor/open wound on the upper left arm. Linked to this she had repeated crises of hypercalcemia and she was three times hospitalized.

    Luckily, Lumi resisted and was randomized on the Nivo arm within this trial! She have done for now her 5th infusion of nivolumab and because her Melanoma did not progress, she is allowed to go further with the Nivo infusions. I do not have yet the detailed translation of her CT (the evaluation scan) but -as far as her doctor said- she is stable. I can see this in her general status, which is clearly improved. Thinking back I was really scared that she will not be alive in March 2014, but here we are, she is alive and relatively active (she partly returned to the work). We hope for now to see more effects of this treatment.

    Some of adverse effects: leucocites/limphocites very low count, 5 times increase in the value of lipase (a pancreatic enzyme) and a light anemia. These were reversible. She did treatment to increase white blood cells and kept a strict diet for decreasing lipase. Not counting as side effect, but traveling every two weeks from Bucharest to Germany is extremely tiring for her.. However she is resisting, she has hopes now and this is doing a lot..Last time she even had courage to travel alone in order to save some money.

    So this is the story for now. I will come back to you as soon as I will have her last CT report, made after the 4th infusion with nivo (BMS).

    Wish you all the best!


    Catherine Poole

    Hope you get good news! Let us know.

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