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Viewing 15 posts - 1 through 15 (of 20 total)
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  • in reply to: Failed nivo now try keytruda? #67245
    Ninni
    Participant

    Catherine and Shane, I really appreciate your answers. Shane, I hope that you find a treatment that works all the way for you. I write again when I have any results from Keytruda.

    in reply to: Failed nivo now try keytruda? #67242
    Ninni
    Participant

    Mathew, thanks a lot for your answer! I see what you mean, now I look forward to begin the trial in July.

    in reply to: T-Vec EAP #66717
    Ninni
    Participant

    The injections can be done in my tumour in my sinus. It can’t be removed surgically but can easily be reached from outside by my surgeon.

    in reply to: T-Vec EAP #66715
    Ninni
    Participant

    Tanks a lot EvaMaria! Now I saw that it wasn’t eligable if primary was mucosal melanoma which mine was. There were no contact possible via email so I can’t ask them why. I thought T-Vec should be worth trying for me.

    in reply to: Happy 2015 to you.. #66007
    Ninni
    Participant

    Happy 2015 to you Cathrine! I am so happy for this forum, so thanks a lot!

    in reply to: Why is pain back after infusion of dacarbazine? #65985
    Ninni
    Participant

    Thank you Cathrine for your answer. My hope is that dacarbazine kills cancercells and the macrophages then come and clean up the dead cancercells. This would cause swelling which hurts cause there is not much place in the bones ( jaw, cheek and scullbase). Just like swelling after yervoy. Probably I am wrong but that would be nice.

    in reply to: Waiting for answer Merck EAP #65359
    Ninni
    Participant

    Thanks for your answers, it means a lot to me I feel quite lonely in this matter. My oncologist mailed me that the answer from Mercks was that they don’t allow pembrolinumab to patients who have had severe side-effects with other immunotherapies. She is going to send them some more information from the trial I was in so it wil take time until I know for sure. I have read at this forum about people who had severe sideeffects and still got pembro. I had my sideeffects from ipi (liverfunctions). I got nivo in the trial but progression forced me to quit. Then after one fusion of IPI I got severe sideeffects and had to quit that too. Now I have to put my faith in dacarbazine. Are there other options, I am braf wildtype.

    /Ninni

    in reply to: Waiting for answer Merck EAP #65355
    Ninni
    Participant

    Thank you Hejing for your answer!

    I have emailed my oncolgist and asked if she has got any kind of answer but she hasn’t replied. If any information is missing I suppose they have informed her. Now I mailed to idispharma and hope they wil answer.

    /ninni

    in reply to: Waiting for answer Merck EAP #65353
    Ninni
    Participant

    Yes Catherine, I live in Sweden. Mercks EAP has come to Sweden. I am so tired of waiting, all my life is about waiting this yeat. Tanks for your answer!

    /Ninni

    in reply to: Mercks EAP PD-1 to Sweden? #65301
    Ninni
    Participant

    Thansks a lot Cathrine for your answer! Suppose I just have to wait. Wonder why it wasn’t released in all countries in Europe at the same time.

    Ninni

    in reply to: Advice about treatment #65164
    Ninni
    Participant

    Thanks Jonathan for your informative input. I have read your previous posts and really hope that Mercks PD1 wil work for you!

    And thanks Cbs805, your comment was encouraging and thanks Mary, I hope the nivi-ipi-combination wil work for you.

    Thanks again Cathrine, I now hope I wil get Merck EAP. I always look for a plan B. Helledays trial can perhaps start next year http://www.helleday.org” class=”bbcode_url”>http://www.helleday.org

    ninni

    in reply to: Advice about treatment #65160
    Ninni
    Participant

    Thanks Cathrine and Shane for your answers. I saw my oncologist yesterday and had a long discussion with her (almost one hour). She appreciates that I am updated on the new treatments, mostly thanks to this forum which I check every day.

    I had a CT this monday and it showed that the melanona in my sinus had grown 1mm since april and the metastas in the lung had also grown 1 mm. My oncologist would say they were stable. But I had a new spot in the liver. Because of that she means that Nivo Pd1 had no effect on me but she would try to get me into Mercks EAP if I want that. I too am uncertain it would help but I can’t help wanting to try it. I have mucosal melanoma in my nose and sinus now inoperable but I read that PD1 is not as god with mucosal melanoma. If I get Mercks EAP and it doesn’t work I wil take my last option, dacarbazine. Somewhere I read that you can get Mercs EAP PD1 even if you have failed with Nivo, am I wrong? Mercs EAP hasn’t come to Sweden yet but is expected soon. If it takes a long time perhaps I can take dacarbazine first.. My oncologist is going to check it all up.

    Cathrine: Everytime I have tried to go under 10 mg cortisone my liver or the thyroidea reacts and I have to take a higher dose again. But I am still trying to scale down (I began with 160 mg for two weeks in hospital). I am so tired of all this and sometimes I want to give it all up but life is wonderful and I just got my second grandshild.

    Ninni

    in reply to: Advice about treatment #65154
    Ninni
    Participant

    Thanks a lot for your quick answer Celeste! Thats what I wanted to hear. Now I hope it’s possble for me to get Mercs EAP.

    Ninni

    in reply to: Global EAP PD1 Program opens #64627
    Ninni
    Participant

    I can go to Germany. But i am still on cortisol I’am trapping down and hopefully out of it in october. First then I can begin with EAP I think. And hopefully it is in Sweden then. Thanks again Cathrine for your support. I learn to be my own advocacy by this site.

    in reply to: Global EAP PD1 Program opens #64625
    Ninni
    Participant

    Thank you Cathrine! My oncologist has contact with Merc she is melanoma specialist and had led many studies. She is one of the best in Sweden but doesn’t know when EAP is given in Sweden. I thought I should ask you who are always first with the answers. I tell you if and when I get EAP.

Viewing 15 posts - 1 through 15 (of 20 total)