Posted by Becky
Leif had an appointment September 6th with the transplant specialist, Dr. Meehan, at Dartmouth. He wanted to see Leif again before determining his treatment path from here. So Leif, my brother Doug, and I drove up to New Hampshire on Thursday, after seeing Leif's cardiologist in Brunswick (not much to report there) and staying with Rhonda on Wednesday night. Thursday night we had a fun dinner with my aunt Prue in Hanover, and she gave us a quick tour of the Lebanon/Hanover/Norwich area. I appreciated getting a feel for where we will be staying while Leif has his stem cell transplant. I was glad to see that the area is chock-full of food co-ops.
Dr. Meehan has been talking with Leif's primary oncologist, Dr. Connelly, several times a month, so he's up to date on how Leif has been doing. The PET scan results look good enough that they've decided an autologous (using Leif's own cells) stem cell transplant is the way to go, as opposed to using cells from a donor. Only if he relapses after transplant, which could potentially happen 6 months or more down the road, would he need a transplant of stem cells from a donor. This is good news, because donor transplants bring another level of risk with them.
The reason they do a donor transplant is if they can't get the lymphoma into remission (aka resistant disease). This is what they were worried about at Leif's last Dartmouth meeting, but it looks like his disease has responded well enough to the chemotherapy he's gotten so far, that they are more confident an autologous transplant will be successful.
They are still keeping an eye on his spleen; they were hoping it would be smaller than it is by now, but spleens don't have a mechanism for shrinking fast. The concern is that mantle lymphoma cells could still be hiding in there.
We discussed Dartmouth-Hitchcock's experience treating mantle cell lymphoma patients. As we've mentioned before, MCL is not a common diagnosis, especially in people as young as Leif. Dr. Meehan oversaw the first stem cell transplant in an MCL patient in the nineties, back before they had a specific name for MCL or were 100% sure what it was; they thought it was a type of leukemia. In the last decade or so, Dr. Meehan has overseen transplants in about 30 patients with MCL. Transplants are pretty effective if done during the first remission; if the lymphoma comes back prior to transplant, the results are generally poor.
Leif's form of MCL is the most aggressive type. Normal white blood cell counts are around 90, and when Leif was diagnosed, his were around 9000. So they have been treating the cancer very aggressively as well.
The standard treatment from here would be to put Leif back into the hospital (Midcoast) for another 5 days of an aggressive chemotherapy regimen using the chemo drugs Cytarabine and Etoposide. After that, patients' blood counts (the number of red and white blood cells and platelets present in his body) are low for about 3 weeks; during that time they give shots of Neupogen, a drug which causes the marrow to produce extra blood stem cells. Neupogen combined with low blood counts induce the body to release stem cells into the bloodstream - that entire process is called "chemo mobilization" (that is, mobilization of the stem cells). When counts come back up, they collect stem cells from the blood and freeze them. After 2-4 weeks, when the patient has recovered from chemo, they do the transplant.
However, because Leif got so sick after his last chemo treatment, they don't think he's ready to get such an aggressive regimen. They still aren't sure why he got so sick, so there's no way to know he won't get even sicker if his blood counts are low for 3 weeks straight. However, since Leif's cancer is so aggressive, they have to do some kind of chemo to keep it in remission until they harvest stem cells and do the transplant, because as I mentioned above, transplant after relapse has poor outcomes.
There are other chemo treatments they can give him, or they could possibly just hit him with Neupogen and collect stem cells without prior chemotherapy. (That's what they do with healthy stem cell donors.) They could give him another set of the A and B cycles he's gotten heretofore. There are many options.
The doctor is still mulling over the pros and cons of different regimens; once he's made up his mind, he'll contact us and Dr. Connelly and we'll go from there.
Dr. Meehan told us who will be on Leif's team at Dartmouth, and we met with the transplant coordinator, who gave us a tour of the stem cell collection unit and and bone marrow transplant unit. She's from Maine, which of course makes Leif happy. The Dartmouth-Hitchcock Medical Center is huge! It has a bank and a food court. While visiting Leif there, I will need a pocketful of bread crumbs. Sanitized, mold-free bread crumbs. The bone marrow transplant unit has 7 rooms, and is staffed at 2-3 patients per nurse. Patients are encouraged to bring pictures and stuff from home to make their rooms comfortable.
Patients in the bone marrow transplant unit can get visitors, but visitors need to self-screen for being sick with anything. No fresh fruit or flowers are allowed in the unit due to the potential for mold spores. We can bring food in from outside as long as it meets certain guidelines, which the hospital will provide to us beforehand. We're hoping to use Skype for virtual visits while Leif is in the unit.
Leif got his veins checked for the stem cell collection procedure - they can't use his port for that. The collection procedure is similar to the procedure for donating platelets - they put needles in both arms, draw the blood out of one arm, pass it through a machine that collects the stem cells, then put the rest of the blood back in the other arm. The process can take one to several days of 4-5 collection hours per day; they need a certain volume of stem cells, and will just keep collecting until they get enough. He will need to hydrate beforehand and wear comfortable clothing.
The pre-transplant workup will consist of an echocardiogram, pulmonary function test, and a chest xray. These can all be done near home. They also do viral tests; Leif got blood drawn for those tests at Dartmouth on Friday morning.
A general overview of the transplant process is:
Leif had an appointment September 6th with the transplant specialist, Dr. Meehan, at Dartmouth. He wanted to see Leif again before determining his treatment path from here. So Leif, my brother Doug, and I drove up to New Hampshire on Thursday, after seeing Leif's cardiologist in Brunswick (not much to report there) and staying with Rhonda on Wednesday night. Thursday night we had a fun dinner with my aunt Prue in Hanover, and she gave us a quick tour of the Lebanon/Hanover/Norwich area. I appreciated getting a feel for where we will be staying while Leif has his stem cell transplant. I was glad to see that the area is chock-full of food co-ops.
Dr. Meehan has been talking with Leif's primary oncologist, Dr. Connelly, several times a month, so he's up to date on how Leif has been doing. The PET scan results look good enough that they've decided an autologous (using Leif's own cells) stem cell transplant is the way to go, as opposed to using cells from a donor. Only if he relapses after transplant, which could potentially happen 6 months or more down the road, would he need a transplant of stem cells from a donor. This is good news, because donor transplants bring another level of risk with them.
The reason they do a donor transplant is if they can't get the lymphoma into remission (aka resistant disease). This is what they were worried about at Leif's last Dartmouth meeting, but it looks like his disease has responded well enough to the chemotherapy he's gotten so far, that they are more confident an autologous transplant will be successful.
They are still keeping an eye on his spleen; they were hoping it would be smaller than it is by now, but spleens don't have a mechanism for shrinking fast. The concern is that mantle lymphoma cells could still be hiding in there.
We discussed Dartmouth-Hitchcock's experience treating mantle cell lymphoma patients. As we've mentioned before, MCL is not a common diagnosis, especially in people as young as Leif. Dr. Meehan oversaw the first stem cell transplant in an MCL patient in the nineties, back before they had a specific name for MCL or were 100% sure what it was; they thought it was a type of leukemia. In the last decade or so, Dr. Meehan has overseen transplants in about 30 patients with MCL. Transplants are pretty effective if done during the first remission; if the lymphoma comes back prior to transplant, the results are generally poor.
Leif's form of MCL is the most aggressive type. Normal white blood cell counts are around 90, and when Leif was diagnosed, his were around 9000. So they have been treating the cancer very aggressively as well.
The standard treatment from here would be to put Leif back into the hospital (Midcoast) for another 5 days of an aggressive chemotherapy regimen using the chemo drugs Cytarabine and Etoposide. After that, patients' blood counts (the number of red and white blood cells and platelets present in his body) are low for about 3 weeks; during that time they give shots of Neupogen, a drug which causes the marrow to produce extra blood stem cells. Neupogen combined with low blood counts induce the body to release stem cells into the bloodstream - that entire process is called "chemo mobilization" (that is, mobilization of the stem cells). When counts come back up, they collect stem cells from the blood and freeze them. After 2-4 weeks, when the patient has recovered from chemo, they do the transplant.
However, because Leif got so sick after his last chemo treatment, they don't think he's ready to get such an aggressive regimen. They still aren't sure why he got so sick, so there's no way to know he won't get even sicker if his blood counts are low for 3 weeks straight. However, since Leif's cancer is so aggressive, they have to do some kind of chemo to keep it in remission until they harvest stem cells and do the transplant, because as I mentioned above, transplant after relapse has poor outcomes.
There are other chemo treatments they can give him, or they could possibly just hit him with Neupogen and collect stem cells without prior chemotherapy. (That's what they do with healthy stem cell donors.) They could give him another set of the A and B cycles he's gotten heretofore. There are many options.
The doctor is still mulling over the pros and cons of different regimens; once he's made up his mind, he'll contact us and Dr. Connelly and we'll go from there.
Dr. Meehan told us who will be on Leif's team at Dartmouth, and we met with the transplant coordinator, who gave us a tour of the stem cell collection unit and and bone marrow transplant unit. She's from Maine, which of course makes Leif happy. The Dartmouth-Hitchcock Medical Center is huge! It has a bank and a food court. While visiting Leif there, I will need a pocketful of bread crumbs. Sanitized, mold-free bread crumbs. The bone marrow transplant unit has 7 rooms, and is staffed at 2-3 patients per nurse. Patients are encouraged to bring pictures and stuff from home to make their rooms comfortable.
Patients in the bone marrow transplant unit can get visitors, but visitors need to self-screen for being sick with anything. No fresh fruit or flowers are allowed in the unit due to the potential for mold spores. We can bring food in from outside as long as it meets certain guidelines, which the hospital will provide to us beforehand. We're hoping to use Skype for virtual visits while Leif is in the unit.
Leif got his veins checked for the stem cell collection procedure - they can't use his port for that. The collection procedure is similar to the procedure for donating platelets - they put needles in both arms, draw the blood out of one arm, pass it through a machine that collects the stem cells, then put the rest of the blood back in the other arm. The process can take one to several days of 4-5 collection hours per day; they need a certain volume of stem cells, and will just keep collecting until they get enough. He will need to hydrate beforehand and wear comfortable clothing.
The pre-transplant workup will consist of an echocardiogram, pulmonary function test, and a chest xray. These can all be done near home. They also do viral tests; Leif got blood drawn for those tests at Dartmouth on Friday morning.
A general overview of the transplant process is:
- Pre-transplant workup, chemotherapy of some sort, at Midcoast - time frame unknown
- Stem cell collection at Dartmouth, as outpatient visits - 1 week or so
- Admit to the hospital on transplant day minus 6; administer chemotherapy to kill off all Leif's bone marrow (several days)
- Infuse the previously-collected stem cells, in a process that looks like a blood transfusion and takes several hours (day 0, transplant day)
- Keep Leif away from potential sources of infection, give transfusions as needed, and treat any infections that arise, until Leif's blood counts come back (1-2 weeks, usually).
- Send Leif home. He will still have a weakened immune system for the following 6-12 months or possibly longer, and will need frequent check-ups. Most patients experience road bumps during this period, but the majority of MCL patients who receive stem cell transplants make it through this recovery period okay.
Thank you, Becky, for the extensive background info. You obviously take a lot of time to research, but also to synthesize, and make for a readable, personal and understandable summary. And no typos. I'll know to be worried about YOU when I start seeing typos in your posts. ;-)
ReplyDeleteI REALLY appreciate these posts. They make me feel involved, even from a distance.
Lots of love,
Mike
Aw, thanks Mike!
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