Posted by Becky
Leif's infection is under control, as is the liver GVHD; the new goal is to get his platelets up to the level required to get Ibrutinib. There's always something.
His last thoracentesis was not very effective, so he's having a lot of trouble breathing. Apparently if a person has a pleural effusion (fluid building up around the lungs) for long enough, their body starts creating baffles within that cavity - which, if the fluid is coming in from a single location, is a great idea. But in Leif's case, where the fluid is coming from everywhere, it means that a thoracentesis (or a chest tube) can't drain more than one small pocket at a time. It also means that instead of having positive pressure (i.e. the fluid wants to drain on its own) you start getting negative pressure (the fluid doesn't want to come out). Once this baffle-making process starts, it can't be stopped. The pulmonologist wants him to get a surgery that will glue some membranes together with talcum powder, which will stop the process. If the baffle creation goes on too long, they can no longer do this surgery to correct the issue. However, his Maine oncologists would rather see Leif get Ibrutinib to treat the underlying cause. They feel that the surgery, although routine, is still surgery, and thus risky when his platelets are low and he's neutropenic. It's not something they can do at Midcoast Hospital - he'd have to go where there is a thoracic surgery specialist. Leif has an email in to his contacts at DHMC, asking for their opinion. We tend to want to go with the oncology team's recommendation. In the meantime, Leif is uncomfortable, breathing shallowly, and using supplemental oxygen. He's in a lot of pain and rather foggy-headed. Another thoracentesis is planned for Monday, and he may be getting platelets tomorrow as well.
I'm down at the hospital now, and Leif's parents are dog-sitting.
Leif's infection is under control, as is the liver GVHD; the new goal is to get his platelets up to the level required to get Ibrutinib. There's always something.
His last thoracentesis was not very effective, so he's having a lot of trouble breathing. Apparently if a person has a pleural effusion (fluid building up around the lungs) for long enough, their body starts creating baffles within that cavity - which, if the fluid is coming in from a single location, is a great idea. But in Leif's case, where the fluid is coming from everywhere, it means that a thoracentesis (or a chest tube) can't drain more than one small pocket at a time. It also means that instead of having positive pressure (i.e. the fluid wants to drain on its own) you start getting negative pressure (the fluid doesn't want to come out). Once this baffle-making process starts, it can't be stopped. The pulmonologist wants him to get a surgery that will glue some membranes together with talcum powder, which will stop the process. If the baffle creation goes on too long, they can no longer do this surgery to correct the issue. However, his Maine oncologists would rather see Leif get Ibrutinib to treat the underlying cause. They feel that the surgery, although routine, is still surgery, and thus risky when his platelets are low and he's neutropenic. It's not something they can do at Midcoast Hospital - he'd have to go where there is a thoracic surgery specialist. Leif has an email in to his contacts at DHMC, asking for their opinion. We tend to want to go with the oncology team's recommendation. In the meantime, Leif is uncomfortable, breathing shallowly, and using supplemental oxygen. He's in a lot of pain and rather foggy-headed. Another thoracentesis is planned for Monday, and he may be getting platelets tomorrow as well.
I'm down at the hospital now, and Leif's parents are dog-sitting.
Ugh! I hope the doc's opinion is that waiting on surgery for a few weeks won't be a huge risk. Treating the underlying cause is the way to go if at all possible. The question will be how bad can this get before the study drug can kick in. Let us know of course when you find out about getting this study drug - everything I've read sounds so promising. I'm still thinking about y'all all the time. -Karen
ReplyDeleteThinking of you and sending love.
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