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Clinical trial BMS936558 (MPDL3280A)(MDX1106)--you know, the anti-PDL1 drug!

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Comments

  • pjune127
    pjune127 Member Posts: 127
    garym said:

    Tumor sitter...
    Paula,

    I hope who ever the tumor sitters are around the world that they will be out of a job in our life times, which btw, I expect yours will be many many more years. i pray your wait is short and the results are what you want them to be. Hang in there kiddo.

    Godspeed,

    Gary

    Thanks, Gary!
    Waiting is the very hardest part in this kidney game! I figure I have been off meds for three weeks, since finding out the Inlyta didn't work. In order to participate in a trial, you must be off meds for one month. I went on Inlyta the beginning of July because the Sutent had quit working. So in all, I worry that I haven't been fighting this cancer effectively for nearly 4 months. I am READY to kick butt, but I think it will be at least another 2-3 weeks till I can start. Wait, wait, wait. There is no alternative. It is evil in my body, trying to gain ground every day. I do feel relatively well, but am working to keep my appetite up and not lose weight. I have begun sweating at night (again) and I know it's there. Gotta stay positive!!! Your thought and prayers make that easier. :)

    I'm going for the gusto gang! Glad to have you all along for the ride!

    Love, Paula
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    pjune127 said:

    Thanks, Gary!
    Waiting is the very hardest part in this kidney game! I figure I have been off meds for three weeks, since finding out the Inlyta didn't work. In order to participate in a trial, you must be off meds for one month. I went on Inlyta the beginning of July because the Sutent had quit working. So in all, I worry that I haven't been fighting this cancer effectively for nearly 4 months. I am READY to kick butt, but I think it will be at least another 2-3 weeks till I can start. Wait, wait, wait. There is no alternative. It is evil in my body, trying to gain ground every day. I do feel relatively well, but am working to keep my appetite up and not lose weight. I have begun sweating at night (again) and I know it's there. Gotta stay positive!!! Your thought and prayers make that easier. :)

    I'm going for the gusto gang! Glad to have you all along for the ride!

    Love, Paula

    Waiting
    Paula, it should be a little easier knowing that you're about to get onto the best chance yet for big, maybe huge, improvements and also joining the ranks of the Titans!

    There's a burst of activity on at KIDNEY-ONC at present, scrutinising new treatments that show promise - it's all happening these days and buying more time never made better sense, with prospects getting better and better. Staying stable or even losing ground slowly is good enough to stay in the game while things are improving so much. Let your lovely family and the rest of us here keep you in high spirits, ready for the good things to come soon.
  • one putt
    one putt Member Posts: 72
    pjune127 said:

    Thanks, Gary!
    Waiting is the very hardest part in this kidney game! I figure I have been off meds for three weeks, since finding out the Inlyta didn't work. In order to participate in a trial, you must be off meds for one month. I went on Inlyta the beginning of July because the Sutent had quit working. So in all, I worry that I haven't been fighting this cancer effectively for nearly 4 months. I am READY to kick butt, but I think it will be at least another 2-3 weeks till I can start. Wait, wait, wait. There is no alternative. It is evil in my body, trying to gain ground every day. I do feel relatively well, but am working to keep my appetite up and not lose weight. I have begun sweating at night (again) and I know it's there. Gotta stay positive!!! Your thought and prayers make that easier. :)

    I'm going for the gusto gang! Glad to have you all along for the ride!

    Love, Paula

    night sweats
    Paula, after completing my last dose of HDIL2 I also went thru night sweats, loss of appetite and constant tumor fevers until I began my MDX/VOTRIENT trial.I know from experience how difficult it is to keep one's appetite up but at this point it's the most important thing you can do for yourself.You need to show your cancer that you are in charge.The 3 month wait with no treatment,before my trial began,seemed like an eternity to me.Here's hoping your wait won't last much longer,and you will join those of us in these trials who are having a positive response.
  • pjune127
    pjune127 Member Posts: 127
    Thanks for all the encouragement!
    I wish I could have UPS track the progress of getting my tumor samples to the drug companies~At least I would know where I am in the system! LOL..I do know that Duke has sent them to SCRI. Now SCRI has to send them to the drug companies for testing. I'm figuring it will be another couple of weeks until I hear something. I really am feeling all right. At times it's more of a battle in my head than a battle in my body. One day at a time....

    You all are my life blood. Stay with me.

    Paula
  • garym
    garym Member Posts: 1,647
    pjune127 said:

    Thanks for all the encouragement!
    I wish I could have UPS track the progress of getting my tumor samples to the drug companies~At least I would know where I am in the system! LOL..I do know that Duke has sent them to SCRI. Now SCRI has to send them to the drug companies for testing. I'm figuring it will be another couple of weeks until I hear something. I really am feeling all right. At times it's more of a battle in my head than a battle in my body. One day at a time....

    You all are my life blood. Stay with me.

    Paula

    With you all the way!!!
    Paula,

    It doesn't seem to matter what we are waiting for, the waiting game is always the worst. Our imaginations and emotions run wild, but you've been through it and you know the drill. Keep busy, find things to occupy your mind, the time will pass much faster and taking it one day at a time is a very good approach. You are in my thoughts and prayers.

    Hang in there,

    Gary
  • angec
    angec Member Posts: 924
    pjune127 said:

    Thanks for all the encouragement!
    I wish I could have UPS track the progress of getting my tumor samples to the drug companies~At least I would know where I am in the system! LOL..I do know that Duke has sent them to SCRI. Now SCRI has to send them to the drug companies for testing. I'm figuring it will be another couple of weeks until I hear something. I really am feeling all right. At times it's more of a battle in my head than a battle in my body. One day at a time....

    You all are my life blood. Stay with me.

    Paula

    Mind plays tricks..
    Paula, hang in there. Even if some time goes by the MDX will make up for it. I can tell you the mind does play tricks on you. My mom,now 80, was doing great, feeling great, gaining weight and looked better than me. Until she found out she had two small lung mets. Then suddenly she started saying she couldn't breath and has breathing issues.. almost immediately after she found out. She stopped eating, started sleeping more etc. I attribute that to the mind because the doctor said that right now her mets are still so small that they would not cause her any problems at the moment. So being a female, just maybe the night sweats are hormones? (even though you claim you are 60 or so SMILE!) But try to keep busy and focus on positive thoughts. Picture the soldiers in your body lining up to take charge over the tumors and eliminating them. Stay positive and know that soon you will be heading for treatment! Prayers going out to you... xxoo
  • pjune127
    pjune127 Member Posts: 127
    angec said:

    Mind plays tricks..
    Paula, hang in there. Even if some time goes by the MDX will make up for it. I can tell you the mind does play tricks on you. My mom,now 80, was doing great, feeling great, gaining weight and looked better than me. Until she found out she had two small lung mets. Then suddenly she started saying she couldn't breath and has breathing issues.. almost immediately after she found out. She stopped eating, started sleeping more etc. I attribute that to the mind because the doctor said that right now her mets are still so small that they would not cause her any problems at the moment. So being a female, just maybe the night sweats are hormones? (even though you claim you are 60 or so SMILE!) But try to keep busy and focus on positive thoughts. Picture the soldiers in your body lining up to take charge over the tumors and eliminating them. Stay positive and know that soon you will be heading for treatment! Prayers going out to you... xxoo

    Kind words
    angec, thanks so much for the encouragement. It is an incredible boost to me right now. Waiting, waiting, waiting....Good things come to those who wait, right? Prayers are so appreciated. God bless y'all!

    XO Paula
  • angec
    angec Member Posts: 924
    pjune127 said:

    Kind words
    angec, thanks so much for the encouragement. It is an incredible boost to me right now. Waiting, waiting, waiting....Good things come to those who wait, right? Prayers are so appreciated. God bless y'all!

    XO Paula

    Good things ....
    Good things are on the horizon I am sure!! The prayers continue for comfort and good, positive thoughts. You will be fine! I can't wait to read your posts after your treatment. Xxoo