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  • #21924
    Violeta
    Participant

    Dear all, my sister is feeling very bad these days. she can hardly walk and the arm tumor is almost double, she is weak, anemic and recently developed hypercalcemia a condition which is linked always in her case with the progress of melanoma.. Pains are unbearable, despite all the strategies of her pain management doctor used. I am very worried and sad to see that she is progressing after a period of relative stability with nivolumab.

    We are scheduled for compassionate use with the hope to receive in the middle of May, dabrafenib and trametinib. But I am afraid will be too late. (…)Hoping for the best.

    #64124
    Catherine Poole
    Keymaster

    Violeta: Bettina is working on your sister’s situation in Romania and hopefully speeding up the braf/mek to her. Let us know how things are going and write me personally as well. take care of you!

    #64125
    Sue_forMike
    Participant

    Violeta,

    I can only offer empathy, as my husband is in similar situation. He has very low energy, little appetite, almost cannot walk, dry mouth etc. Thankfully the pain is currently controlled, radiation has helped with that, as well as the pain meds.

    It is so hard to watch. I wish you both healing and some peace.

    Sue

    #64126
    Violeta
    Participant

    Thanks Catherine and Sue.

    Her situation is even worst now, blood tests started to be more abnormal, last week she got low calcium and in the Easter day she went again in hospital. she is screaming of pains. we want to try radiotherapy asap if she is not able to reach Brussels on sunday. Is killing me she is suffering so much.. My younger sisters and her partner are there with her in romania and me here in netherlands I can only wait here to meet in brussells this sunday. she hope she will be able to travel to get CU for dabrafenib and trametinib, but my God looks like an impossible mission. I dont know what to do anymore for her, I dont know how to help her..she is dying, is dying, only this is in my mind and there is nothing that works for her anymore.It is too hard.

    #64127
    Catherine Poole
    Keymaster

    You will be in our thoughts and prayers and I do hope she makes the trip. This is always so hard. I hope you take care of you Violeta and know she is so lucky to have you, a caring sister doing all you can. Let us know how things go.

    #64128
    Anonymous
    Guest

    Violeta:

    I’m sorry to see both of you in pain. Your sister has the disease but those close to her suffer as well.

    I’m sorry. One important thing you can very much do is just be with her. I can tell you that means soooo much to her. But keep on the path you’re on to get the medication. You are a wonderful care giver.

    Jeff

    #64129
    Catherine Poole
    Keymaster

    Violeta,

    I was thinking of you and your sister today. I wondered how things were going. I hope better.

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