eirie

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  • in reply to: Update on NIH Trial #78787
    eirie
    Participant

    Hi,

    I thought I would let folks know that I am now in this NIH trial as well. In July I went to Bethesda for final screening and was accepted into the trial. Two weeks later I went back for surgery to remove 3 tumors from my right lung. I’m now waiting for my cells to grow (the protocol is now to grow them for 3-4 months), but I’ve been told they are doing nicely.

    In the mean time I’ve started on the Pembrolizumab (Keytruda) plus GM-CSF clinical trail back home at UCSF. I’ll get scans in 2 months to see if it’s doing anything good for me. I’ll stay on this trial as long as it helps, but if/when it doesn’t, I’ll plan on going back to NIH for the cell infusion. They say they can freeze my cells in the mean time.

    Ellen

    in reply to: Novartis BGJ 398 Clinical Trial #87992
    eirie
    Participant

    I’m really curious to know how others are doing and how long you are being able to stay on the drug. I am just finishing up eight cycles. Each cycle my dosage has been reduced to deal with a slew of side effects. In the last two months I’ve been doing one week on one week off with a 75 mg dosage. The side effects have been much more limited and I feel mostly like a normal person, which is awesome. But I’ve been concerned whether I’m getting enough of the drug. I just got my CT results of my liver tumor is stable at about 2 cm but there is growth inthe many little nodules in my lungs. They are still small – biggest is 9mm having grown from 6 mm, but there are over 20 of them. I’ll see my doctor on Monday to see what is next. I wish I had a clue how long to expect that this job will work for me. But I’m so thankful that I’ve been doing pretty well, so I’m not complaining.

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