That's great news and bodes well for the future (fingers crossed)!
Let's hope. In a week, I'm meeting with my local oncologist for several reasons, one of which is how to prepare for the chemo they give me for the week before the T-cell infusion.
Apparently "shouting and swearing" are not part of the standard practice.
So here's the update. In late September I had recovered enough to sign up for the second part of my clinical trial (the chemo/infusion/recovery one that take 5-6 weeks). First, they expected me to fly down to Houston to sign paperwork and then fly back. (Uh, no.) I was then told that they had had some people quit so they weren't able to process as many people. My scheduled time was moved from December to February, which didn't really bother me that much, and given Christmas, ...
I called back in early November to ask about something or other and the trial nurse told me that it was "on hold". Apparently more people had quit and they can't process anyone now.
So my wife and I spent 10+days in Houston (at our own expense for flights, meals, and lodging), her missing work and our teenagers being teenagers back home; I had abdominal surgery which, during recovery, required a daily shot in the stomach that my wife had to administer; I had two months of PT (again, no at their expense) to get into shape for the second part; and I find out the trial is "on hold" only because I called about an administrative question.
What's more: the trial still shows up on their web site and clinicaltrials.gov as "recruiting", we're offered no compensation, and I do no, apparently, own my own T-cells to have them transferred elsewhere.
Can I just say that I am very pissed off at MD Anderson right now?
For now I'm getting the "standard of care" treatment, immunotherapy with a combination of ipilimumab (the one I had on my clinical trial in 2013) and nivolimumab. The first has an efficacy of 3%, the second 5%, but in combination it's 17%. And all I really need now is for this to slow down the tumors until I get to another clinical trial.
Comments
Let's hope. In a week, I'm meeting with my local oncologist for several reasons, one of which is how to prepare for the chemo they give me for the week before the T-cell infusion.
Apparently "shouting and swearing" are not part of the standard practice.
I called back in early November to ask about something or other and the trial nurse told me that it was "on hold". Apparently more people had quit and they can't process anyone now.
So my wife and I spent 10+days in Houston (at our own expense for flights, meals, and lodging), her missing work and our teenagers being teenagers back home; I had abdominal surgery which, during recovery, required a daily shot in the stomach that my wife had to administer; I had two months of PT (again, no at their expense) to get into shape for the second part; and I find out the trial is "on hold" only because I called about an administrative question.
What's more: the trial still shows up on their web site and clinicaltrials.gov as "recruiting", we're offered no compensation, and I do no, apparently, own my own T-cells to have them transferred elsewhere.
Can I just say that I am very pissed off at MD Anderson right now?