Slow to get going this morning. I did not sleep very well. When I lay down, I get wheezing in my lungs, which is not uncomfortable, but is actually loud enough to keep me awake. I hope that this is a temporary thing caused by the constant agitation of my lungs filling with fluid and being drained, and once my plural effusion is under control, it will calm down and stop. In the meantime, it can make for a long night.
It occurred to me today that since I have been on the Prednisone for a full week since my last lab, I might be completely over my Graft vs Host Disease (GvHD), and that it still might make sense to take the lab, show that it is under control. Get off the Prednisone until Friday - send THAT lab to the Ibrutinib study people, and if it shows that I am indeed over the GvHD, drive out Monday the 13th to get on the Ibrutinib. It would mean one more week without treatment, but it might still be worth it. I would definitely need solid assurance from the Ibrutinib study director that this would be acceptable, but since it was the plan that he suggested, it is possible that the third time would be the charm.
I think that it is worth a call to Dr. Meehan monday morning. I could have the labs drawn at 8:30, get my thoracentesis, and know whether my GvHD was cured by the time I got back from the surgery. If it is not COMPLETELY cured, it is obvious to me to go ahead with the treatment that Dr. Meehan and I discussed on Friday. But if it is COMPLETELY cured, perhaps it makes sense to take one more stab at the Ibrutinib study. I could even delay taking my Prednisone until after my lab came back, so if I am clear, Monday would count as a day off Prednisone. That means that potentially, I could get a lab on Thursday sent off and get treatment on Friday.
Something to think about tomorrow. It is important to look at every possibility and think things through. Even though I did not get into the study last time, I should not close the door if the benefit of waiting 4 days outweigh going on the Rituxin treatment immediately. If I take 15 mg of Prednisone tomorrow (instead of 70 mg) , then Sunday will count as a day that it is under control and I could potentially get treatment on Thursday. You have to take your doctor's knowledge seriously, but at the same time, I am the one that is finally responsible for my health and treatment.
That is a lot to try to coordinate Monday morning before 8:30am, especially since I know that I will be a little foggy (I always am on the day of my thoracentesis because I am just not getting enough oxygen to my brain for brilliant thought). I suppose I ought to call the oncologist on call, both at Dartmouth and at Midcoast and discuss it with them. If I go ahead, I need to get a sign-off that I only took 15mg of Prednisone on Sunday. 15 mg of Prednisone is acceptable in the Ibrutinib study parameters.
I can't really see a down-side to that. One day with a lower dose of Prednisone will not make a difference with GvHD, so I am not risking anything there if i find that it is not under control on Monday. Fluctuating one's Prednisone dose has the side effect of feeling horrible, and a usual taper from 70 mg would usually be over a couple of weeks, but this is a pretty minor discomfort in the scheme of things. If it works out, I will probably be better off in the long run.
You do the best you can with what you have to work with.
Leif
It occurred to me today that since I have been on the Prednisone for a full week since my last lab, I might be completely over my Graft vs Host Disease (GvHD), and that it still might make sense to take the lab, show that it is under control. Get off the Prednisone until Friday - send THAT lab to the Ibrutinib study people, and if it shows that I am indeed over the GvHD, drive out Monday the 13th to get on the Ibrutinib. It would mean one more week without treatment, but it might still be worth it. I would definitely need solid assurance from the Ibrutinib study director that this would be acceptable, but since it was the plan that he suggested, it is possible that the third time would be the charm.
I think that it is worth a call to Dr. Meehan monday morning. I could have the labs drawn at 8:30, get my thoracentesis, and know whether my GvHD was cured by the time I got back from the surgery. If it is not COMPLETELY cured, it is obvious to me to go ahead with the treatment that Dr. Meehan and I discussed on Friday. But if it is COMPLETELY cured, perhaps it makes sense to take one more stab at the Ibrutinib study. I could even delay taking my Prednisone until after my lab came back, so if I am clear, Monday would count as a day off Prednisone. That means that potentially, I could get a lab on Thursday sent off and get treatment on Friday.
Something to think about tomorrow. It is important to look at every possibility and think things through. Even though I did not get into the study last time, I should not close the door if the benefit of waiting 4 days outweigh going on the Rituxin treatment immediately. If I take 15 mg of Prednisone tomorrow (instead of 70 mg) , then Sunday will count as a day that it is under control and I could potentially get treatment on Thursday. You have to take your doctor's knowledge seriously, but at the same time, I am the one that is finally responsible for my health and treatment.
That is a lot to try to coordinate Monday morning before 8:30am, especially since I know that I will be a little foggy (I always am on the day of my thoracentesis because I am just not getting enough oxygen to my brain for brilliant thought). I suppose I ought to call the oncologist on call, both at Dartmouth and at Midcoast and discuss it with them. If I go ahead, I need to get a sign-off that I only took 15mg of Prednisone on Sunday. 15 mg of Prednisone is acceptable in the Ibrutinib study parameters.
I can't really see a down-side to that. One day with a lower dose of Prednisone will not make a difference with GvHD, so I am not risking anything there if i find that it is not under control on Monday. Fluctuating one's Prednisone dose has the side effect of feeling horrible, and a usual taper from 70 mg would usually be over a couple of weeks, but this is a pretty minor discomfort in the scheme of things. If it works out, I will probably be better off in the long run.
You do the best you can with what you have to work with.
Leif
Oi! So much to think on and decide! I don't know how you do it! You're truly an inspiration and I hope things are decided for you soon! Still crossing my fingers for the study drug, too.
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