Friday I went in to be officially enrolled in the Ibrutinib study, but because of my liver enzyme test, I was rejected by the company that is running the trials. The study requires my liver enzymes to be 2.5x or less of normal, and we thought that I was within that limit. The problem turned out to be that Fletcher-Allen (where the study is being run) and Janssen (the company that is running the study) have different numbers for "normal" on the liver enzymes.
There was nothing to do at that point but to drive back to Maine. I am getting my bloodwork and liver enzymes tested on Monday, and if they fall within Janssen's range, then I will head back out to Burlington to be enrolled. If they are not within range on Monday, I will be getting tested again on Friday. Everyone expects them to be within range by then. So I will be headed out to Burlington again the week after next at the latest. At this point, this is the only thing keeping me out of the study, so as soon as it is resolved there are not expected to be any more problems.
The drive back was beautiful. We took Rt. 2, which is a pretty straight shot. I think that next week the colors in the mountains will all be peaking and it is one of the most scenic drives I have been on. Next week should just be breathtaking. The weather was so clear and nice, that we took a little detour and took the auto road up Mt. Washington. I am proud to say that I climbed all the way from the parking lot to the peak. :) It was about a 200 ft rise in elevation, and I probably walked a good half mile, which are both new records for me since I got out of the hospital last time. I have lost so much muscle, and it is so slow regaining it each time. It has been especially slow this time, but I think that the Graft vs Host disease probably has strongly effected how much energy my body has to build muscle.
It was a little hazy at the top, but for Mt. Washington it was clear and beautiful weather. It was 60 degrees at the top with a very light wind. We thought we could just make out Katahdin, 330 miles away. I took some pictures, but you really need a good camera to capture that sort of majesty in the mountains. Or at least be a much better photographer than I am.
So, it was disappointing to spend most of a week trying to get into this study, and then being rejected at the last moment. It is a long trip, so I am not terribly excited to drive out there next week, but this is just part of being sick and doing what needs to be done to get better. I am confident that it will all be taken care of soon and the lymphoma seems to be pretty stable, so the week delay is not likely to be a problem with my health.
I am looking for someone to road-trip out with me next week (or the week after). It will be a day driving out, and a day coming back. I will pick up the cost of the room and meals. I may be in a position to do some or even most of the driving, but on the other hand, I may not be able to do any, so you have to be able to do 2 6-hour drives, as well as all the drop-offs and pick-ups at the hospital and probably some small errands. If we stay at Hope Lodge (which I expect) that may include cooking a breakfast.
Leif
There was nothing to do at that point but to drive back to Maine. I am getting my bloodwork and liver enzymes tested on Monday, and if they fall within Janssen's range, then I will head back out to Burlington to be enrolled. If they are not within range on Monday, I will be getting tested again on Friday. Everyone expects them to be within range by then. So I will be headed out to Burlington again the week after next at the latest. At this point, this is the only thing keeping me out of the study, so as soon as it is resolved there are not expected to be any more problems.
The drive back was beautiful. We took Rt. 2, which is a pretty straight shot. I think that next week the colors in the mountains will all be peaking and it is one of the most scenic drives I have been on. Next week should just be breathtaking. The weather was so clear and nice, that we took a little detour and took the auto road up Mt. Washington. I am proud to say that I climbed all the way from the parking lot to the peak. :) It was about a 200 ft rise in elevation, and I probably walked a good half mile, which are both new records for me since I got out of the hospital last time. I have lost so much muscle, and it is so slow regaining it each time. It has been especially slow this time, but I think that the Graft vs Host disease probably has strongly effected how much energy my body has to build muscle.
It was a little hazy at the top, but for Mt. Washington it was clear and beautiful weather. It was 60 degrees at the top with a very light wind. We thought we could just make out Katahdin, 330 miles away. I took some pictures, but you really need a good camera to capture that sort of majesty in the mountains. Or at least be a much better photographer than I am.
So, it was disappointing to spend most of a week trying to get into this study, and then being rejected at the last moment. It is a long trip, so I am not terribly excited to drive out there next week, but this is just part of being sick and doing what needs to be done to get better. I am confident that it will all be taken care of soon and the lymphoma seems to be pretty stable, so the week delay is not likely to be a problem with my health.
I am looking for someone to road-trip out with me next week (or the week after). It will be a day driving out, and a day coming back. I will pick up the cost of the room and meals. I may be in a position to do some or even most of the driving, but on the other hand, I may not be able to do any, so you have to be able to do 2 6-hour drives, as well as all the drop-offs and pick-ups at the hospital and probably some small errands. If we stay at Hope Lodge (which I expect) that may include cooking a breakfast.
Leif
Bleh... one of those hurry up and wait things! I am glad there is a study now you might be eligible for instead of waiting longer (there's another next summer?) Regardless, there are many hopeful things for cancer on the horizon. It's just that horizon sometimes can feel as elusive as the end of a rainbow. It's always there though - and techinically, with Earth curvature, the distance to the horizon is:
ReplyDeletesquareroot(elevation / 0.5736)
I'm sending happy enzyme vibes, here are some now...
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Love,Karen (down in the swamps wising I was in a New England autumn)
Leif, your positive attitude through all this never ceases to amaze me. And if I would local, I'd do that drive for you in a heartbeat. Hm...maybe work will let me off and I can fly up? (I wish!)
ReplyDeleteThe liver values are just from the pred, yeah? That should resolve soon if so, and then it's onward and hopefully upward, right?
Hang in there! Wishing you the best from Texas.
Wait -- Texas? What part of Texas are you in?
DeleteNot Austin. ;) If I remember correctly, you and Leif have some relations somewhat near me, though. I'm in DFW. Moved back in 2011 after five years in ME. Sigh.
DeleteYes, maybe we can see you this fall - I am hopeful that we can visit my parents in DFW over Thanksgiving.
DeleteLeif has my email. Let me know if you're around, but please do not stress about it. I understand how stressful the huge demands trying to keep everyone happy around the holidays can be. Hugs to all and keep fighting the good fight!
DeleteI normally hate driving to Vermont (just because it's a long drive), but I would LOVE to drive you there and back if I was around! That Route 2 route sure is sweet though--goes a long way to compensate for the hours sitting in the car. I hope you get great weather for the two upcoming drives. Wishing you continued healing and continued gumption!
ReplyDelete