I feel SO much better.
I had so much going on, so many things were up in the air about what was going to happen next, and I was really low on air. Lack of oxygen was making me extremely foggy, and I had not been sleeping well as my back has been hurting when I lay down, so I was also somewhat sleep deprived. Makes for a hard morning when you need to make sure that certain very important procedures are done, and no-one else at the hospital had yet heard of my plan (to check first to see if I could get into the Ibrutinib study). It was not much different than the current plan - mostly about timing on the labs, but they had not scheduled my thoracentesis (the surgery where I get my lungs drained). So I had to be sharp to get that all taken care of by 8:30am. Whew.
So, we took my labs and they were able to schedule the thoracentesis immediately afterwards. They removed 2.8 liters of fluid. When you see it sitting in the jar - it is a LOT of fluid. It is no wonder my back has been hurting. It weighs just over 6 pounds, and is in sort of an awkward place for you body to be carrying extra weight. It also made me think that I really ought to be drinking more liquid. They are taking that much out about every 5 days. It has to come from somewhere. My body should be USING that stuff, you know? 2.8 Liters on top of what I ought to be drinking to keep my kidneys flushed from my medications, on top of what people ought to be drinking every day. I probably should have something to sip at all day long.
Anyway, the thoracentesis went really well, and within an hour or so, my color came back, I could THINK again, I had the oxygen to walk. I don't feel "normal" of course, but I feel pretty darn good all things considering.
When I got back to Oncology, they had my test results, and I still have Graft vs. Host Disease. This was the most likely outcome, despite my plan, so I was not disappointed. I just think that if I had not given the other a try, I would have regretted not knowing if I could have made it into the Ibrutinib study. Also, it was nice that my lab was not close. I had to be under "43" and I tested at "91". The GvHD is under control - that is a lower number than my last test, but it was not a "45" or something that would have been SO close as to keep PLAN A into effect. It was a relief.
We started my chemo immediately afterwards. My chemo consists of Rituxin, Bendamustine, and a new pill called Revlimid. Historically, I have had reactions to Rituxin. Everything from full-blown rigors to relatively mild chills. This time went very smoothly. I had a few moments of slight shortness of breath, but other than that, I did not even notice that I was getting chemo. We put the Rituxin in pretty slowly - it took about 4 hrs, and we waited longer with the pre-meds. I did not get out of the hospital until 6:30pm, so it was a long day, but it went really well. This chemo plan is similar to the one that I had at Dartmouth-Hitchcock, and there it was able to get my lymphoma suppressed enough to for the DLI (the Donor-lymphocyte infusion, where they give you more donor T-Cells to help your body's immune system fight the lymphoma). So we are pretty confident that it will help considerably, although we are also pretty sure that it will not actually put me into remission - which is why trying to get into the Ibrutinib study had been so important.
We believe that this chemo regiment will hold me over until Ibrutinib is approved by the FDA and becomes available as a general treatment. That is supposed to happen in late spring, although I heard a rumor recently that it could be as early as December.
My current chemo schedule will be ever 21 days. I had thought that I was supposed to go in weekly, so that was also a pleasant surprise. Hopefully, I should see some improvement in my plural effusion (the liquid going into my lungs) in the next 2 weeks. I am looking forward to that.
I thought I would be just beat today, and I am tired. Yesterday was a long day. But so much stress has been lifted that while I am tired, and not going to tackle anything big. I feel pretty darn good.
Leif
I had so much going on, so many things were up in the air about what was going to happen next, and I was really low on air. Lack of oxygen was making me extremely foggy, and I had not been sleeping well as my back has been hurting when I lay down, so I was also somewhat sleep deprived. Makes for a hard morning when you need to make sure that certain very important procedures are done, and no-one else at the hospital had yet heard of my plan (to check first to see if I could get into the Ibrutinib study). It was not much different than the current plan - mostly about timing on the labs, but they had not scheduled my thoracentesis (the surgery where I get my lungs drained). So I had to be sharp to get that all taken care of by 8:30am. Whew.
So, we took my labs and they were able to schedule the thoracentesis immediately afterwards. They removed 2.8 liters of fluid. When you see it sitting in the jar - it is a LOT of fluid. It is no wonder my back has been hurting. It weighs just over 6 pounds, and is in sort of an awkward place for you body to be carrying extra weight. It also made me think that I really ought to be drinking more liquid. They are taking that much out about every 5 days. It has to come from somewhere. My body should be USING that stuff, you know? 2.8 Liters on top of what I ought to be drinking to keep my kidneys flushed from my medications, on top of what people ought to be drinking every day. I probably should have something to sip at all day long.
Anyway, the thoracentesis went really well, and within an hour or so, my color came back, I could THINK again, I had the oxygen to walk. I don't feel "normal" of course, but I feel pretty darn good all things considering.
When I got back to Oncology, they had my test results, and I still have Graft vs. Host Disease. This was the most likely outcome, despite my plan, so I was not disappointed. I just think that if I had not given the other a try, I would have regretted not knowing if I could have made it into the Ibrutinib study. Also, it was nice that my lab was not close. I had to be under "43" and I tested at "91". The GvHD is under control - that is a lower number than my last test, but it was not a "45" or something that would have been SO close as to keep PLAN A into effect. It was a relief.
We started my chemo immediately afterwards. My chemo consists of Rituxin, Bendamustine, and a new pill called Revlimid. Historically, I have had reactions to Rituxin. Everything from full-blown rigors to relatively mild chills. This time went very smoothly. I had a few moments of slight shortness of breath, but other than that, I did not even notice that I was getting chemo. We put the Rituxin in pretty slowly - it took about 4 hrs, and we waited longer with the pre-meds. I did not get out of the hospital until 6:30pm, so it was a long day, but it went really well. This chemo plan is similar to the one that I had at Dartmouth-Hitchcock, and there it was able to get my lymphoma suppressed enough to for the DLI (the Donor-lymphocyte infusion, where they give you more donor T-Cells to help your body's immune system fight the lymphoma). So we are pretty confident that it will help considerably, although we are also pretty sure that it will not actually put me into remission - which is why trying to get into the Ibrutinib study had been so important.
We believe that this chemo regiment will hold me over until Ibrutinib is approved by the FDA and becomes available as a general treatment. That is supposed to happen in late spring, although I heard a rumor recently that it could be as early as December.
My current chemo schedule will be ever 21 days. I had thought that I was supposed to go in weekly, so that was also a pleasant surprise. Hopefully, I should see some improvement in my plural effusion (the liquid going into my lungs) in the next 2 weeks. I am looking forward to that.
I thought I would be just beat today, and I am tired. Yesterday was a long day. But so much stress has been lifted that while I am tired, and not going to tackle anything big. I feel pretty darn good.
Leif
It's really good being kept up to date like this. I am so happy to hear you are feeling better after the thoracentesis -- Ugh to all that weight to have to lug around. Glad the first round of chemo went well. You definitely don't need to tackle anything (else) big. You've already been wrestling with lions and tigers for days ....
ReplyDeleteGlad you're feeling better, Leif, and that a plan is in place. It's often such a relief to at least HAVE a plan. Being up in the air is hard on everyone. Here's hoping this chemo does what it should and that the Ibrutinib gets approved sooner rather than later.
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