One Saturday, I started loosing lung capacity. Fluid in the lung. When I left for Burlington, I had a capacity of about 3.00 L. (I have a little device from the hospital that I use to test and help keep up my lung capacity). When I got back, that had dropped to about 2.50 L. On Saturday, I lost another .50 L, and on Sunday I lost .25 L. At that point I was down to 1.75 L. I was having a issues with shortness of breath for pretty minor tasks. Don't forget, I am also down on my hemoglobin, so that doesn't help at all.
The last time I had to go to the hospital, it was for fluid in the lung, and I ended up calling 911, and getting an ambulance. I am not sure what my lung capacity was at that time, because I did not yet have my little device, but it was probably between 1.25 L and 1.00 L. So I knew that I was getting close to being in trouble. I called Dartmouth and talked to the Oncologist on call (because of course this happens on a weekend). We discussed the issue, and I was pretty confident that I would be fine until Monday, but probably not Tuesday. We made arrangements to get things rolling to get my lung drained (the procedure is called thoracentesis) first thing on Monday.
Monday morning, I had lost a little bit more, but things got rolling and I had an appointment for 10:30am. The thoracentesis went really well. It is a much less painful procedure than it sounds. Not fun, but not as bad as a bone marrow biopsy. Honestly, it is the least painful actual surgical procedure that I have had done. They drained 2.0 L, which is the maximum they drain at a time, because the risk of the collapsing a lung climbs if they drain too much. I feel pretty good, all things considered.
The fluid comes from the fact that we have not been treating my lymphoma. I can expect to have to have another thoracentesis by the end of the week. Until I get a treatment program, I can expect to have to have a procedure about every 5 days. There is the option to get a permanent drain put in with a little spigot that I can drain when I want. While that sounds convenient, having a little
So, when can I get into the Ibrutinib study? Well, the other thing that I did today was to have my labs drawn to check my liver enzymes. There is one enzyme that needs to have a marker of about 100 in order to get into the study and the last time we drew it was 140, down from 170 a few days before. Today, beyond all reason, it tested at 173. Moving in the wrong direction. I am DEFINITELY not going to be able to get into the study this week.
Some of the issues that we are trying to balance are:
1) I am not currently treating the lymphoma.
2) The lymphoma has progressed to the point that my lungs are filling with fluid regularly.
3) I have Graft vs Host disease, which bad in of itself, is preventing me from getting in the study.
4) Ibrutinib looks to be the most promising long-term treatment currently available.
5) If we put me on another treatment, I will not be eligible to get into the Ibrutinib study for at least 6 - 8 weeks. Perhaps, not at all.
We do not have any obvious best path. The current plan is to be assessed for thoracentesis on Wednesday by Dr. Connelly here in Waldo, and we are more than doubling the medicine I am taking to try to fight the Graft vs Host Disease. We are going to retake my labs on Friday, and with luck, I will be within the study parameters, or at least close enough to believe that we will be with study parameters by the following Monday. If so, then off to Burlington again to get some Ibrutinib. If not, then I will probably have to go on a treatment of light chemo and hope that it controls my lymphoma and that I might be able to get into the study in a couple of months. It is definitely a poor plan B, but it is the best we have.
On the other hand, my overall prognosis has not changed. My doctors believe that the light chemo will minimize the lymphoma and my worst-case scenario is still "several years". So this setback is not too harmful in the big scheme of things.
Leif
The last time I had to go to the hospital, it was for fluid in the lung, and I ended up calling 911, and getting an ambulance. I am not sure what my lung capacity was at that time, because I did not yet have my little device, but it was probably between 1.25 L and 1.00 L. So I knew that I was getting close to being in trouble. I called Dartmouth and talked to the Oncologist on call (because of course this happens on a weekend). We discussed the issue, and I was pretty confident that I would be fine until Monday, but probably not Tuesday. We made arrangements to get things rolling to get my lung drained (the procedure is called thoracentesis) first thing on Monday.
Monday morning, I had lost a little bit more, but things got rolling and I had an appointment for 10:30am. The thoracentesis went really well. It is a much less painful procedure than it sounds. Not fun, but not as bad as a bone marrow biopsy. Honestly, it is the least painful actual surgical procedure that I have had done. They drained 2.0 L, which is the maximum they drain at a time, because the risk of the collapsing a lung climbs if they drain too much. I feel pretty good, all things considered.
The fluid comes from the fact that we have not been treating my lymphoma. I can expect to have to have another thoracentesis by the end of the week. Until I get a treatment program, I can expect to have to have a procedure about every 5 days. There is the option to get a permanent drain put in with a little spigot that I can drain when I want. While that sounds convenient, having a little
So, when can I get into the Ibrutinib study? Well, the other thing that I did today was to have my labs drawn to check my liver enzymes. There is one enzyme that needs to have a marker of about 100 in order to get into the study and the last time we drew it was 140, down from 170 a few days before. Today, beyond all reason, it tested at 173. Moving in the wrong direction. I am DEFINITELY not going to be able to get into the study this week.
Some of the issues that we are trying to balance are:
1) I am not currently treating the lymphoma.
2) The lymphoma has progressed to the point that my lungs are filling with fluid regularly.
3) I have Graft vs Host disease, which bad in of itself, is preventing me from getting in the study.
4) Ibrutinib looks to be the most promising long-term treatment currently available.
5) If we put me on another treatment, I will not be eligible to get into the Ibrutinib study for at least 6 - 8 weeks. Perhaps, not at all.
We do not have any obvious best path. The current plan is to be assessed for thoracentesis on Wednesday by Dr. Connelly here in Waldo, and we are more than doubling the medicine I am taking to try to fight the Graft vs Host Disease. We are going to retake my labs on Friday, and with luck, I will be within the study parameters, or at least close enough to believe that we will be with study parameters by the following Monday. If so, then off to Burlington again to get some Ibrutinib. If not, then I will probably have to go on a treatment of light chemo and hope that it controls my lymphoma and that I might be able to get into the study in a couple of months. It is definitely a poor plan B, but it is the best we have.
On the other hand, my overall prognosis has not changed. My doctors believe that the light chemo will minimize the lymphoma and my worst-case scenario is still "several years". So this setback is not too harmful in the big scheme of things.
Leif
Ugh. Stupid pleural effusion. I'm sorry you're having to deal with that. And unpredictable liver values, too. Sigh. Hopefully, things will improve on the recheck and you can get into the study. *fingers crossed*
ReplyDeleteOne day at a time. Thinking love and warmth and big hugs and puppy piles and french union soup and Canada geese honking and low elfin liver enzymes in your general direction. And more love. And a couple more hugs. Ad infinitum, but not ad nauseum.
ReplyDeleteSo grateful that the latest round of awfulness hasn't pulled down your long-term prognosis. Sent you a barrage of emails today, before I had the sense to check you blog. Please ignore them until you feel like reading them!! Ditto everything that Mike said, and, since he said it so beautifully, let's double it (which perhaps quadruples it depending how you count), and while we're doing mathematical operations, let's multiply it all by one of my favorite numbers, infinity, and since favorite numbers are fun, for the fun of it, let's multiply the result by one of your favorite numbers, pi. Speaking of such things, yet completely changing the subject, would you like some pie? I bet I could arrange to have a yummy one sent over in honor of pi and infinity and love. Hugs, hugs, and more hugs. <3 (heart)
ReplyDelete