eirie
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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
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.
