Posted by Becky
What happens now? Now we wait. Although Day 0 was a major milestone, it's not a big clinical event, in the sense that there's not going to be a lot for the doctors to do or learn immediately; real news about how the transplant went is still weeks and months away.
Leif's blood counts are expected to go down for at least three more days. They're looking decent at the moment, decreasing pretty slowly. The infusion of stem cells hiked his blood counts, since they're a blood product. As they go down, he'll again be at a high risk for infection. The good news is that his bottom looks better than it's looked since he got to DHMC. The surgeon and transplant specialist are both quite pleased at how it looks, and it's continued to heal noticeably over the past week. There is still a small area of hardness (induration is the technical term), indicating infected tissue (cellulitis), about the diameter of a nickel or dime. Just over a week ago it was much bigger, so he's come a long way. We'd love to see it completely gone before Leif's neutrophil count drops below 500. Go, little neutrophils, go!
During the time that his blood counts are low, Leif will be once again be at high risk for infection. The nurses are watching him closely for any signs of fever, etc.
At about Day 16-17, the doctors hope to see signs that the cells have engrafted, in other words, that the transplant "took." At that point, Leif's blood counts should start to come back, and in addition to monitoring for infection, they will monitor for signs of graft-vs-host disease (GVHD), veno-occlusive disease, and all the other stuff we've been warned about. They will manage symptoms and monitor his levels of immune suppressant drugs. They will also be monitoring for signs of lymphoma. If they see signs of evil B-cells, depending on the timing, there are a variety of things they can do, from backing further off the immune suppressants, to more chemotherapy, even another transplant. As I mentioned before, Leif's champion donor collected so many cells, there are enough stored in the freezer for an entire other transplant plus (if I understood the conversation correctly - I wasn't taking notes) infusions of filtered T-cells.
Because Leif got a mini-transplant, the plan is to taper down his immune suppressant drugs relatively quickly; the donor cells have a big job to do, and the doctors want to give them as much rein as possible without endangering Leif too much with side effects. However, he will remain on some level of immune suppressant drugs for 9-24 months. It all depends on how things go.
Stepping back from the big picture to the details of today, this was a better day than yesterday. Yesterday Leif still had a lot of nausea and headache, wasn't able to eat or drink much, and had increasingly bad pain in his muscles, then bones throughout the day and overnight. He didn't have fever-type chills and his temperature was fine, but he felt chilly and generally miserable. So the doctors did two things:
First, at his request, they switched one of his immune suppresants, ciclosporin, from a pill to an IV. Leif is pretty sure that was the culprit in making him nauseated. He will need to switch back to the pill form before he goes home, but getting enough food is important too. Switching to an IV and back will help provide information about whether the nausea was being caused by the ciclosporin or something else.
Second, they told Leif to be less aggressive in tapering down his pain medication. His morphine dose has been quite high since he had that bad pain in his bottom and those infected nodules during the last hospital visit. The doctors want to protect his liver as much as possible, so they recommended that he start tapering off the morphine. Since the infections were clearing up so nicely and he was feeling so good, Leif felt OK decreasing his dose by about 15 mg per day for the last 3 days. Although his "pain sites" continued to feel fine at that level of painkiller, the doctors think that his muscle/bone pain, chilliness, and possibly the nausea are withdrawal symptoms. So, they've gone back up to nearly his original dose, and will taper by 15 mg every three days. That helped - Leif was able to go for a good walk today, cleaned his plate at dinnertime, and seems to be pain and nausea free this evening. I say "seems to be" because he slept poorly last night since he felt so badly, and he's asleep at the moment.
We met with an oncology nutrition expert yesterday. She's personally a vegetarian, so she was able to come up with a lot of Leif-friendly guidance and recommendations.
We're in the path of Nor'easter Nemo, so I am planning to stay at the hospital until Sunday. I bought some groceries based on Leif's requests. One of the things I bought, Marmite, turns out to be on the Do Not Eat list, so I will be returning it and reading the "little blue booklet" again. Oops. I can return the unopened package to the co-op, so no harm done.
What happens now? Now we wait. Although Day 0 was a major milestone, it's not a big clinical event, in the sense that there's not going to be a lot for the doctors to do or learn immediately; real news about how the transplant went is still weeks and months away.
Leif's blood counts are expected to go down for at least three more days. They're looking decent at the moment, decreasing pretty slowly. The infusion of stem cells hiked his blood counts, since they're a blood product. As they go down, he'll again be at a high risk for infection. The good news is that his bottom looks better than it's looked since he got to DHMC. The surgeon and transplant specialist are both quite pleased at how it looks, and it's continued to heal noticeably over the past week. There is still a small area of hardness (induration is the technical term), indicating infected tissue (cellulitis), about the diameter of a nickel or dime. Just over a week ago it was much bigger, so he's come a long way. We'd love to see it completely gone before Leif's neutrophil count drops below 500. Go, little neutrophils, go!
During the time that his blood counts are low, Leif will be once again be at high risk for infection. The nurses are watching him closely for any signs of fever, etc.
At about Day 16-17, the doctors hope to see signs that the cells have engrafted, in other words, that the transplant "took." At that point, Leif's blood counts should start to come back, and in addition to monitoring for infection, they will monitor for signs of graft-vs-host disease (GVHD), veno-occlusive disease, and all the other stuff we've been warned about. They will manage symptoms and monitor his levels of immune suppressant drugs. They will also be monitoring for signs of lymphoma. If they see signs of evil B-cells, depending on the timing, there are a variety of things they can do, from backing further off the immune suppressants, to more chemotherapy, even another transplant. As I mentioned before, Leif's champion donor collected so many cells, there are enough stored in the freezer for an entire other transplant plus (if I understood the conversation correctly - I wasn't taking notes) infusions of filtered T-cells.
Because Leif got a mini-transplant, the plan is to taper down his immune suppressant drugs relatively quickly; the donor cells have a big job to do, and the doctors want to give them as much rein as possible without endangering Leif too much with side effects. However, he will remain on some level of immune suppressant drugs for 9-24 months. It all depends on how things go.
Stepping back from the big picture to the details of today, this was a better day than yesterday. Yesterday Leif still had a lot of nausea and headache, wasn't able to eat or drink much, and had increasingly bad pain in his muscles, then bones throughout the day and overnight. He didn't have fever-type chills and his temperature was fine, but he felt chilly and generally miserable. So the doctors did two things:
First, at his request, they switched one of his immune suppresants, ciclosporin, from a pill to an IV. Leif is pretty sure that was the culprit in making him nauseated. He will need to switch back to the pill form before he goes home, but getting enough food is important too. Switching to an IV and back will help provide information about whether the nausea was being caused by the ciclosporin or something else.
Second, they told Leif to be less aggressive in tapering down his pain medication. His morphine dose has been quite high since he had that bad pain in his bottom and those infected nodules during the last hospital visit. The doctors want to protect his liver as much as possible, so they recommended that he start tapering off the morphine. Since the infections were clearing up so nicely and he was feeling so good, Leif felt OK decreasing his dose by about 15 mg per day for the last 3 days. Although his "pain sites" continued to feel fine at that level of painkiller, the doctors think that his muscle/bone pain, chilliness, and possibly the nausea are withdrawal symptoms. So, they've gone back up to nearly his original dose, and will taper by 15 mg every three days. That helped - Leif was able to go for a good walk today, cleaned his plate at dinnertime, and seems to be pain and nausea free this evening. I say "seems to be" because he slept poorly last night since he felt so badly, and he's asleep at the moment.
We met with an oncology nutrition expert yesterday. She's personally a vegetarian, so she was able to come up with a lot of Leif-friendly guidance and recommendations.
We're in the path of Nor'easter Nemo, so I am planning to stay at the hospital until Sunday. I bought some groceries based on Leif's requests. One of the things I bought, Marmite, turns out to be on the Do Not Eat list, so I will be returning it and reading the "little blue booklet" again. Oops. I can return the unopened package to the co-op, so no harm done.
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