(no subject)
All the details of my pretty darn good meeting at Moffitt below
I just got back from my trip to Moffitt and I have to say I really like the doctors there. I first met with a fellow, Dr Crane, who spent 45 minutes or so going through my medical history with me. Then I spent over 30 minutes with Dr D'Amato. My first impression was extremely positive. One of the things that suprised me the most is she talked about some lab work she was doing with LMS cells (involving the PK13 pathway) - a marked contrast to MDA where no one is really looking at LMS. She has had a pretty good knowledge of some of the drugs in trials - not just the AP23573 trial either. We talked briefly about surgery and I felt that I was able to get my points across of why I'd like to strongly consider it if it's possible. She provided me with some details about the High dose Ifosomide treatment. According to her, the success rates can be as high as 29%. It involves 4 days in the hospital with infusions every 12 hours. She said that if I wanted to try a cycle of it that they could hold a spot in the AP23573 trial for me if it didn't work! I wish I'd known that was possible 3 weeks ago. That way I'd also be cleared for the Et-743 trial if I wanted to do that at some point.
She also said that the trial proviso that I had worried about in the Phase I trial at Mayo wasn't a big deal. When they say that "no standard treatment exists", they really mean that you've gone through at least a couple of the mainline treaments. She also had no problem with me pursuing trials at other places esp since the AP23573 start date is uncertain. She's frustrated by that but doesn't have any new information about when it will reopen.
They aren't particularly worried about the IVC and don't think it will exclude me from trials. Yes, there are risks of blood clots but they say that generally you just deal with risks. They won't install a filter unless I develop clots in the legs that they are worried that could go to the lungs because the side effects are pretty terrible.
I also got an answer to the weird, occassional and somewhat severe leg pains I've had below my left knee the past 10 days. Apparently the extra weight in my calves from the Taxotere induced fluid retention can cause tendonitis. I had hoped it was something like that, but as you all well know, when you are a cancer patient it's easy to become very worried about just about anything.
She also said that she was very aggressive and felt we should be as aggressive as possible. She did say that there might come a time when no treatment would help, but that is was definitely not now. I left with the distinct impression that she really wanted to keep my alive as long as possible. As I'm sitting here on the plane typing this, I find it amazing how much it helps to have a doctor who not only wants to save you but knows what they heck she is doing. What a change from my oncology experience at MDA. It's only one visit, but I have to say that if you want a doctor who really listens to her patients and goes above and beyond in answering questions and providing information that you should consider travelling to Moffitt. Even if I end up in a trial somewhere else, I definitely think I'll be back at Moffitt afterwords.
One other note about Moffitt is that they set up my next set of scans for the morning and a meeting with my oncologist in the afternoon. They don't make you wait two days for your results like MDA does.
The tumor board there will be meeting tommorrow and she'll call me after that. After I get that call, I'll decide whether to wait a week or two for the Mayo trial or go ahead and take High Dose Ifosomide and follow it up with AP23573. Of course, if the offer surgery I'll almost certainly do that.
Oddly enough, Dr D'Amato sat in on my initial consultation at MD Anderson last May. She was visiting there for a month and was one of those random people that they frequently have observe meetings. Small universe.
I just got back from my trip to Moffitt and I have to say I really like the doctors there. I first met with a fellow, Dr Crane, who spent 45 minutes or so going through my medical history with me. Then I spent over 30 minutes with Dr D'Amato. My first impression was extremely positive. One of the things that suprised me the most is she talked about some lab work she was doing with LMS cells (involving the PK13 pathway) - a marked contrast to MDA where no one is really looking at LMS. She has had a pretty good knowledge of some of the drugs in trials - not just the AP23573 trial either. We talked briefly about surgery and I felt that I was able to get my points across of why I'd like to strongly consider it if it's possible. She provided me with some details about the High dose Ifosomide treatment. According to her, the success rates can be as high as 29%. It involves 4 days in the hospital with infusions every 12 hours. She said that if I wanted to try a cycle of it that they could hold a spot in the AP23573 trial for me if it didn't work! I wish I'd known that was possible 3 weeks ago. That way I'd also be cleared for the Et-743 trial if I wanted to do that at some point.
She also said that the trial proviso that I had worried about in the Phase I trial at Mayo wasn't a big deal. When they say that "no standard treatment exists", they really mean that you've gone through at least a couple of the mainline treaments. She also had no problem with me pursuing trials at other places esp since the AP23573 start date is uncertain. She's frustrated by that but doesn't have any new information about when it will reopen.
They aren't particularly worried about the IVC and don't think it will exclude me from trials. Yes, there are risks of blood clots but they say that generally you just deal with risks. They won't install a filter unless I develop clots in the legs that they are worried that could go to the lungs because the side effects are pretty terrible.
I also got an answer to the weird, occassional and somewhat severe leg pains I've had below my left knee the past 10 days. Apparently the extra weight in my calves from the Taxotere induced fluid retention can cause tendonitis. I had hoped it was something like that, but as you all well know, when you are a cancer patient it's easy to become very worried about just about anything.
She also said that she was very aggressive and felt we should be as aggressive as possible. She did say that there might come a time when no treatment would help, but that is was definitely not now. I left with the distinct impression that she really wanted to keep my alive as long as possible. As I'm sitting here on the plane typing this, I find it amazing how much it helps to have a doctor who not only wants to save you but knows what they heck she is doing. What a change from my oncology experience at MDA. It's only one visit, but I have to say that if you want a doctor who really listens to her patients and goes above and beyond in answering questions and providing information that you should consider travelling to Moffitt. Even if I end up in a trial somewhere else, I definitely think I'll be back at Moffitt afterwords.
One other note about Moffitt is that they set up my next set of scans for the morning and a meeting with my oncologist in the afternoon. They don't make you wait two days for your results like MDA does.
The tumor board there will be meeting tommorrow and she'll call me after that. After I get that call, I'll decide whether to wait a week or two for the Mayo trial or go ahead and take High Dose Ifosomide and follow it up with AP23573. Of course, if the offer surgery I'll almost certainly do that.
Oddly enough, Dr D'Amato sat in on my initial consultation at MD Anderson last May. She was visiting there for a month and was one of those random people that they frequently have observe meetings. Small universe.