Posted by Becky
I apologize for the long silence - Leif and I have been enjoying some much-appreciated time off from hospitals, doctors, and blogging. Leif's been getting a little bit stronger every day, going for a daily 40 minute walk, eating as much good healthy food as he can, and getting plenty of rest. He's been reading and working on a few little projects, but feeling pretty fatigued.
Last Wednesday, we had a meeting with Dr. Meehan, the transplant specialist, about the plans for his upcoming treatment.
The goal is for Leif to get an allogenetic stem cell transplant; that means they will give him a new immune system in the form of bone marrow stem cells from a healthy adult volunteer donor. A donor has been identified and is in the process of going through qualification. They are also contacting additional potential donors as backups. The transplant coordinator has assured us that there are plenty of good (ten-out-of-ten) matches for Leif in the donor database.
Before transplant, though, Dr. Meehan thinks Leif needs some more chemo. He tolerated the most recent chemo regimen, which is nearly transplant-level chemo in terms of its strength, relatively well. The recent biopsy showed that Leif's marrow had a "great" response, but there is still mantle cell lymphoma present, so they'd like to hit it again.
The CAT scan taken the week previously showed that his spleen and enlarged nodes are about the same size as before. During the physical exam, it looked like his spleen had gotten smaller since the CAT scan.
The plan is to give Leif the same chemo regimen as before. It would be ideal to give him a different regimen, but they're running out of regimens. In Dr. Meehan's experience, patients do relatively well if they're given this regimen twice, so he's comfortable doing it again.
Leif's experience with this chemo regimen is that it's not super bad while he's getting it; the nausea and neurological effects are not as bad as some other regimens he's gotten. The challenge is that afterwards, it takes his body a long time to recover, during which time he's susceptible to infection, bleeding, etc. However, the doctors believe that the benefits of this second round of strong chemo outweigh the risks.
The confounding issue is the wound where Leif had the abscess; they only want to give him this chemo once it's as healed as possible. They'll want to start the chemo as soon as it's safe to do so, though. Leif has a meeting with three sets of doctors (Infectious Disease, Surgery, and Hematology Oncology) on Wednesday, when they will evaluate how he looks and decide when to admit him for the next chemo round, possibly by the end of this week. He's still taking antibiotics and cleaning the incision twice a day with a warm epsom-salts bath. A surgeon checked it on Friday and was pleased with how it looks. He also gave Leif a nice compliment. Leif commented that he needs the abscess to heal because he's going to be getting more chemo soon, and the surgeon did a double-take and said, "I didn't know you had cancer - I thought you were just going for the bald look!" I appreciate that Leif is looking pretty good, although I think that doctor should spend a little more time with patients' charts before seeing them.
After the next round of chemo, Leif will get the transplant. Timing will depend on how the next round of chemo goes. If things are stable and they can give Leif a 2-week mental-health break before the transplant, they will. But, they won't compromise his outcome to do so; so if the next hospital stay runs long, Leif may wind up staying as an inpatient until after the transplant.
After meeting with Dr. Meehan, we met with the transplant coordinator again. She updated us on the donor status, and told us that they're rescheduling stem cell collection for the early/mid January timeframe.
She gave us a little information about what to expect from the transplant. We're not looking too far ahead into the future, since we don't want to get overwhelmed. But, the doctors recommend that we stay in the area for the first 100 days post-transplant. The reason is that after Leif gets out of the hospital, the transplant team will want to see him for a full day once a week during that time period. If we go back to Maine, we'd be looking at a full day in the hospital, with 3.5 hours of driving time (early and late, through the mountains, in the winter) on each end, every week. We think that it will be healthier to stay here rather than doing all that driving during a time when Leif will probably not be feeling great. At any rate, we'll stay here at least until mid-March, and then start thinking about transitioning home (or, rather, to Brunswick) depending on how Leif is doing at that time.
I apologize for the long silence - Leif and I have been enjoying some much-appreciated time off from hospitals, doctors, and blogging. Leif's been getting a little bit stronger every day, going for a daily 40 minute walk, eating as much good healthy food as he can, and getting plenty of rest. He's been reading and working on a few little projects, but feeling pretty fatigued.
Last Wednesday, we had a meeting with Dr. Meehan, the transplant specialist, about the plans for his upcoming treatment.
The goal is for Leif to get an allogenetic stem cell transplant; that means they will give him a new immune system in the form of bone marrow stem cells from a healthy adult volunteer donor. A donor has been identified and is in the process of going through qualification. They are also contacting additional potential donors as backups. The transplant coordinator has assured us that there are plenty of good (ten-out-of-ten) matches for Leif in the donor database.
Before transplant, though, Dr. Meehan thinks Leif needs some more chemo. He tolerated the most recent chemo regimen, which is nearly transplant-level chemo in terms of its strength, relatively well. The recent biopsy showed that Leif's marrow had a "great" response, but there is still mantle cell lymphoma present, so they'd like to hit it again.
The CAT scan taken the week previously showed that his spleen and enlarged nodes are about the same size as before. During the physical exam, it looked like his spleen had gotten smaller since the CAT scan.
The plan is to give Leif the same chemo regimen as before. It would be ideal to give him a different regimen, but they're running out of regimens. In Dr. Meehan's experience, patients do relatively well if they're given this regimen twice, so he's comfortable doing it again.
Leif's experience with this chemo regimen is that it's not super bad while he's getting it; the nausea and neurological effects are not as bad as some other regimens he's gotten. The challenge is that afterwards, it takes his body a long time to recover, during which time he's susceptible to infection, bleeding, etc. However, the doctors believe that the benefits of this second round of strong chemo outweigh the risks.
The confounding issue is the wound where Leif had the abscess; they only want to give him this chemo once it's as healed as possible. They'll want to start the chemo as soon as it's safe to do so, though. Leif has a meeting with three sets of doctors (Infectious Disease, Surgery, and Hematology Oncology) on Wednesday, when they will evaluate how he looks and decide when to admit him for the next chemo round, possibly by the end of this week. He's still taking antibiotics and cleaning the incision twice a day with a warm epsom-salts bath. A surgeon checked it on Friday and was pleased with how it looks. He also gave Leif a nice compliment. Leif commented that he needs the abscess to heal because he's going to be getting more chemo soon, and the surgeon did a double-take and said, "I didn't know you had cancer - I thought you were just going for the bald look!" I appreciate that Leif is looking pretty good, although I think that doctor should spend a little more time with patients' charts before seeing them.
After the next round of chemo, Leif will get the transplant. Timing will depend on how the next round of chemo goes. If things are stable and they can give Leif a 2-week mental-health break before the transplant, they will. But, they won't compromise his outcome to do so; so if the next hospital stay runs long, Leif may wind up staying as an inpatient until after the transplant.
There are two types of allogenetic transplants that they will choose between, when they review how Leif is doing after this next chemo round.
- A full transplant is more challenging up-front. If they go that route, they'll give Leif enough chemotherapy and radiation to completely obliterate his bone marrow, then infuse the donor cells. The chemo and radiation have some intense side effects including mucositis (injury to the inside of his GI tract, basically; sometimes this is so severe that they need to administer IV hydration), high risk for infection, and the need for platelet and blood transfusions. The entire transplant procedure will involve about 4 weeks in the hospital.
- A reduced intensity transplant (also called a mini transplant) involves gentler chemotherapy and radiation to start with, just enough to suppress his immune system. Then they infuse the donor cells, and basically let the donor immune system do a cleanup of his remaining immune cells. They will choose this option if they're concerned about Leif's ability to tolerate the severe chemo involved in a full transplant. The chemo and radiation for a reduced-intensity transplant are so gentle that they are sometimes given during outpatient visits instead of in the hospital. The donor stem cells take over the bone marrow space, and doctors rely on the new immune system to take out the remaining cancer cells via what is called a graft vs. disease effect. A healthy immune system normally recognizes cancer cells and destroys them. So in a reduced-intensity transplant, instead of taking out the cancer with chemotherapy and "rescuing" the patient with a donor immune system, they give the patient a donor immune system and rely on it to take out the cancer.
After meeting with Dr. Meehan, we met with the transplant coordinator again. She updated us on the donor status, and told us that they're rescheduling stem cell collection for the early/mid January timeframe.
She gave us a little information about what to expect from the transplant. We're not looking too far ahead into the future, since we don't want to get overwhelmed. But, the doctors recommend that we stay in the area for the first 100 days post-transplant. The reason is that after Leif gets out of the hospital, the transplant team will want to see him for a full day once a week during that time period. If we go back to Maine, we'd be looking at a full day in the hospital, with 3.5 hours of driving time (early and late, through the mountains, in the winter) on each end, every week. We think that it will be healthier to stay here rather than doing all that driving during a time when Leif will probably not be feeling great. At any rate, we'll stay here at least until mid-March, and then start thinking about transitioning home (or, rather, to Brunswick) depending on how Leif is doing at that time.
Thanks, Becky. That's still a long haul, but it's a plan that includes an endgame. Sending love,
ReplyDeleteMike
Wow, Becky, this is overwhelming just reading it -- I'm impressed with your putting it all down here. Thanks for keeping friends and family in the loop. It really does help to know what's going on -- I think of you both all the time. Sending you lots of love and fortitude, larkspur
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