My father-in-law drove me out here to Burlington, VT. last Tuesday. We took Rt. 2, which was a gorgeous drive. I am not big on long drives - it is a good 5 1/2 hrs - 6 hrs to get out here, but you can't beat the scenery.
Anyway, I am in Burlington in order to get access to a promising new drug called Ibrutinib. It is a targeted drug for blood cancer - lymphoma and leukemia. One side has a part that fools the lymphoma into thinking that it is glucose, and the other side has a protein that destroys an important enzyme in the lymphoma, and causes the lymphoma to self-destruct. It does very little damage to other cells in the body. As an added bonus, it appears that it may work even better on my rare, aggressive form of lymphoma than it does on other lymphomas because the type that I have is especially aggressive with the take-up of glucose.
When I went in to be approved for the study, on Wednesday, I was in the process of being treated for Graft vs Host disease, with a medicine called prednisone. It turns out that this medicine is prohibited by the study, so for a while it looked like they were not going to be able to take me after all. However, after some long discussions between the Dr Sprague (the doctor leading the study), the people funding the study, and my primary oncologist, Dr. Meehan, they were able to come to an agreement. I was immediately taken off Prednisone (which is pretty rough), and put on another drug to combat GvH disease. Unfortunately, that drug is Cyclosporine, which is my least favorite drug I have ever taken. It tastes like spoiled asian mushrooms. It is also an immune-suppressant, so I am back to being neutropenic for all practical purposes. At least I am not likely to have to take it very long - only until my GvH is under control - probably for a couple of weeks. Last time it was about 8 months.
Anyway, that seems to be all sorted out, and I am meeting with them at 9:00am to be officially accepted into the study, and given my first dose of Ibrutinib. I will be coming back to Burlington once a month until the end of the study, which for me, means either: (A) I am cured (vanishingly unlikely), or (B) the drug has become commercially available, which is likely to happen sometime early next year.
I heard through the grapevine that Dr. Meehan is considering the possibility that if the Ibrutinib gets me into full remission, that the best therapy would be another bone marrow transplant. I have not discussed this with him, and can not say that I am particularly excited by the idea. There will be plenty of time later to have that discussion and to talk about the best next steps if I do go into full remission. Right now, just the possibility of getting to full remission would be pretty great.
In other news, my fatigue, which was grueling over the last 3 weeks or so has let up somewhat, and I can mostly get through a full day. My appetite is back, and I have managed to put on about 15 pounds, so I am back up to a more reasonable 170. Probably 5 pounds of that is fluid retention from the Prednisone, but I have put on some muscle, and am able to go for *very* short walks. I lost a lot of muscle the last time I was in the hospital. Or rather, not a lot of muscle, just a high percentage of the little that I had left.
2-3 hundred yards is a pretty tough hike for me right now, but that is up from one hundred yards last week. I can also manage a flight of stairs, which I couldn't last week. Little gains, but important. I have some hope that I will be out of the hospital long enough again to get back to walking 4 miles a day, which is what I had gotten up to earlier this summer. I love to hike, and there is still quite a bit of time before it gets too cold. My neuropathy is such that last winter, I could not really get outside much because I just don't get any heat in my hands and feet. Warmer gloves help a little, but without circulation, your hands just start losing heat until they feel like blocks of ice. I think my neuropathy is a little worse this year than it was last year, so if anyone has a good idea on what might help, let me know. I have tried the hand warmers, but they didn't work out very well. I have heard that there are gloves that actually have little battery-powered electric heaters. Has anyone tried them?
All for now,
Leif
Anyway, I am in Burlington in order to get access to a promising new drug called Ibrutinib. It is a targeted drug for blood cancer - lymphoma and leukemia. One side has a part that fools the lymphoma into thinking that it is glucose, and the other side has a protein that destroys an important enzyme in the lymphoma, and causes the lymphoma to self-destruct. It does very little damage to other cells in the body. As an added bonus, it appears that it may work even better on my rare, aggressive form of lymphoma than it does on other lymphomas because the type that I have is especially aggressive with the take-up of glucose.
When I went in to be approved for the study, on Wednesday, I was in the process of being treated for Graft vs Host disease, with a medicine called prednisone. It turns out that this medicine is prohibited by the study, so for a while it looked like they were not going to be able to take me after all. However, after some long discussions between the Dr Sprague (the doctor leading the study), the people funding the study, and my primary oncologist, Dr. Meehan, they were able to come to an agreement. I was immediately taken off Prednisone (which is pretty rough), and put on another drug to combat GvH disease. Unfortunately, that drug is Cyclosporine, which is my least favorite drug I have ever taken. It tastes like spoiled asian mushrooms. It is also an immune-suppressant, so I am back to being neutropenic for all practical purposes. At least I am not likely to have to take it very long - only until my GvH is under control - probably for a couple of weeks. Last time it was about 8 months.
Anyway, that seems to be all sorted out, and I am meeting with them at 9:00am to be officially accepted into the study, and given my first dose of Ibrutinib. I will be coming back to Burlington once a month until the end of the study, which for me, means either: (A) I am cured (vanishingly unlikely), or (B) the drug has become commercially available, which is likely to happen sometime early next year.
I heard through the grapevine that Dr. Meehan is considering the possibility that if the Ibrutinib gets me into full remission, that the best therapy would be another bone marrow transplant. I have not discussed this with him, and can not say that I am particularly excited by the idea. There will be plenty of time later to have that discussion and to talk about the best next steps if I do go into full remission. Right now, just the possibility of getting to full remission would be pretty great.
In other news, my fatigue, which was grueling over the last 3 weeks or so has let up somewhat, and I can mostly get through a full day. My appetite is back, and I have managed to put on about 15 pounds, so I am back up to a more reasonable 170. Probably 5 pounds of that is fluid retention from the Prednisone, but I have put on some muscle, and am able to go for *very* short walks. I lost a lot of muscle the last time I was in the hospital. Or rather, not a lot of muscle, just a high percentage of the little that I had left.
2-3 hundred yards is a pretty tough hike for me right now, but that is up from one hundred yards last week. I can also manage a flight of stairs, which I couldn't last week. Little gains, but important. I have some hope that I will be out of the hospital long enough again to get back to walking 4 miles a day, which is what I had gotten up to earlier this summer. I love to hike, and there is still quite a bit of time before it gets too cold. My neuropathy is such that last winter, I could not really get outside much because I just don't get any heat in my hands and feet. Warmer gloves help a little, but without circulation, your hands just start losing heat until they feel like blocks of ice. I think my neuropathy is a little worse this year than it was last year, so if anyone has a good idea on what might help, let me know. I have tried the hand warmers, but they didn't work out very well. I have heard that there are gloves that actually have little battery-powered electric heaters. Has anyone tried them?
All for now,
Leif
Crossing my fingers for the new drug to work and glad the fatigue is a bit better. Keep up the good fight, Leif!
ReplyDeleteBummer about the Prednisone conflict and the yucky solution, but fingers crossed it'll all be worth it. Go new drug! Leif, I'm celebrating both your physical gains since the last hospital stay and your celebration of those gains. Celebrating all there is to be grateful for is probably one of the best medicines around (good reminder for me since I can be prone to grousing!). Love and hugs!
ReplyDeleteIt's 3:15 here in Maine. Hope the first day of the trial is behind you and you are on your way home enjoying the scenery as it rolls by backwards.
ReplyDelete