Wednesday, November 20, 2013
Thursday, November 14, 2013
Memorial for Leif
We'll be holding a memorial for Leif this Saturday, November 16. We apologize for the late notice, but we'd like to do it while everyone is in town. That means that we need help getting the word out. If you think someone would like to be there, they're invited.
We'll hold it at Waterfall Arts in Belfast, 256 High Street, Belfast, ME starting at 6:00pm.
Please bring your favorite Leif story to share. We'll have a microphone and a pretty easy audience.
This is a potluck. Please bring something to eat and drink, and enough to share. Family-friendly, and alcohol allowed. Special bonus points will be awarded for things that Leif liked, but anything will do. There is a kitchen on-site, so if you need to warm it up, we can accommodate.
UPDATE: Flowers are welcome tonight, but perhaps better would be donations to Big Brothers Big Sisters of Mid-Maine, the Leukemia and Lymphoma Society, or the science education nonprofit of your choice.
If you need to ask any questions, feel free to contact Mike at 410-350-5000 or Scott at 207-323-0609.
Update with hotel info compiled by Erica Buswell and Becky:
Posted by Mike Aaron
We'll hold it at Waterfall Arts in Belfast, 256 High Street, Belfast, ME starting at 6:00pm.
Please bring your favorite Leif story to share. We'll have a microphone and a pretty easy audience.
This is a potluck. Please bring something to eat and drink, and enough to share. Family-friendly, and alcohol allowed. Special bonus points will be awarded for things that Leif liked, but anything will do. There is a kitchen on-site, so if you need to warm it up, we can accommodate.
UPDATE: Flowers are welcome tonight, but perhaps better would be donations to Big Brothers Big Sisters of Mid-Maine, the Leukemia and Lymphoma Society, or the science education nonprofit of your choice.
If you need to ask any questions, feel free to contact Mike at 410-350-5000 or Scott at 207-323-0609.
Update with hotel info compiled by Erica Buswell and Becky:
Some things you should know about getting to Belfast
Travel Arrangements
Belfast and Brooks are in lovely mid-coast Maine. If you are flying here, the major airports that serve the area are in Portland (PWM) and Bangor (BGR). Portland is located about 2 hour’s drive from Belfast; Bangor is located about 1 hour’s drive from Belfast. Flights to PWM are generally cheaper than flights to BGR. Smaller regional airports in Rockland (45 min.) and Augusta (1 hour from Belfast) are also served by Cape Air.
Travel Accommodations
Belfast has a number of different places to stay, ranging from cheap and simple, to more luxurious and expensive. Here’s a few suggestions.
Cheap(er):
- The Gull Motel: http://www.thegullmotel.com/
- Tke Yankee Clipper: http://www.yankeeclippermotelbelfast.com/
- Belfast Harbor Inn: http://www.belfastharborinn.com/index.html
More luxurious:
- Comfort Inn, Ocean’s Edge: http://belfastmainehotel.com/
- Alden House B & B: http://www.thealdenhouse.com/Site/Welcome.html
- The Jeweled Turret Inn B & B: http://www.jeweledturret.com/index.html
Other things to do while you are in the area
There’s lots of lovely shops and fun hangouts in downtown Belfast. Good eats, too, especially the Belfast Food Coop, and Chase’s Daily. Belfast is also a convenient distance from day trips all over Maine!
- 1.5 hours from Acadia National Park
- 30 minutes from excellent hiking in Camden Hills State Park
Posted by Mike Aaron
Leif has died.
Leif died this morning a little after 11:00am. He's been surrounded by friends, family and lots of love. We're now sitting around telling Leif stories. We might finish in several years.
We are working on a memorial for this Saturday night in Belfast. We'll post details soon.
He was an amazing man and an amazing friend. We will all miss him deeply.
Posted by Mike Aaron
We are working on a memorial for this Saturday night in Belfast. We'll post details soon.
He was an amazing man and an amazing friend. We will all miss him deeply.
Posted by Mike Aaron
Tuesday, November 12, 2013
Right now . . .
Posted by Erica
We are in the 2nd Floor South Med/Surge family waiting room at MidCoast Hospital, visitor command center for the time being, mostly waiting for more details about what to do next. As many of you have been informed, it looks like Leif's liver is beginning to fail. He is jaundiced, and sometimes agitated and confused, but his pain levels have improved. Nothing is clear right now, not even a clear path forward. If you have something you are moved to share with Leif, now, right now, would be a good time to be in touch.
For the time being, it sounds like Leif may likely be up for taking brief phone calls: you may call his google voice # which is 619-4446 (this is also just the phone # to the room).
Cards and notes (but no flowers, please!) can be sent to Leif c/o MidCoast Hospital, 123 Medical Center Drive, Brunswick, ME, 04011. You can also send Leif an e-mail c/o the hospital; this is probably the best way to get in touch as Leif and Becky are not reliably checking e-mail under the circumstances. If you are interested in visiting, please call Leif's phone to check-in. There should always be someone at the other end of the line to let you know whether its a good time to do so.
We are in the 2nd Floor South Med/Surge family waiting room at MidCoast Hospital, visitor command center for the time being, mostly waiting for more details about what to do next. As many of you have been informed, it looks like Leif's liver is beginning to fail. He is jaundiced, and sometimes agitated and confused, but his pain levels have improved. Nothing is clear right now, not even a clear path forward. If you have something you are moved to share with Leif, now, right now, would be a good time to be in touch.
For the time being, it sounds like Leif may likely be up for taking brief phone calls: you may call his google voice # which is 619-4446 (this is also just the phone # to the room).
Cards and notes (but no flowers, please!) can be sent to Leif c/o MidCoast Hospital, 123 Medical Center Drive, Brunswick, ME, 04011. You can also send Leif an e-mail c/o the hospital; this is probably the best way to get in touch as Leif and Becky are not reliably checking e-mail under the circumstances. If you are interested in visiting, please call Leif's phone to check-in. There should always be someone at the other end of the line to let you know whether its a good time to do so.
Sunday, November 10, 2013
Sunday afternoon doctor visit
Posted by Becky
I was mistaken about Leif's steroids; Dr. Connelly has left them at 30 mg, which was the amount they tapered down to a few days ago. She thinks there is more going on with Leif's liver than GVHD. She has a call in to Dr. Meehan to discuss this further. Specifically, his ALK and ALT levels have come down, but his bilirubin is going up. That's not typically a sign of GVHD. It could be a medication effect, or it could be caused by blockage of a bile duct (e.g. by a swollen lymph node), in which case it is possible to put a stent in. She has ordered a CT scan for tomorrow, which will give her a good look at what might be going on in his liver and also a look at the fluid around his lungs, which appears to be continuing to diminish. They've changed his antibiotics from every 8 hours to every 12 hours to see if that helps.
She was pleased to see that Leif's platelets have come up slightly, from less than 5 to 7. Although patients typically get a platelet transfusion when they are below 10, if one is not actively bleeding, it's not clear that platelet levels in this range are harmful. They are given as a preventative measure. Due to the cannula (little plastic doohickey) that delivers supplemental oxygen to his nose, plus the low platelets, Leif's had some minor nose bleeding. That's pretty common, and not the kind of bleeding they're worried about. The oxygen is bubbling through water to make it gentler on his nose, but it's still drying to have oxygen blowing up your nose 24/7. The platelet shortage is due to a recall, and is affecting all of New England. More platelets are being shipped in from around the country and should be here tomorrow.
Let's hear it for blood donors everywhere. Let's also hear it for Eliza, who generously changed her Sunday plans and is bringing Leif's cyclosporin (and my Kindle) down to us this afternoon. I am grateful that there are so many people who love Leif and who are helping us through this in ways large and small.
Otherwise, Leif has been having a quiet day resting up after seeing a lot of visitors yesterday. His pain is being controlled okay now, and mostly consists of back pain. We're using a heating pad and I've been giving him back rubs (gently, since his platelets are low). I'm also having a quiet day resting up, after a quiet day resting up yesterday.
I was mistaken about Leif's steroids; Dr. Connelly has left them at 30 mg, which was the amount they tapered down to a few days ago. She thinks there is more going on with Leif's liver than GVHD. She has a call in to Dr. Meehan to discuss this further. Specifically, his ALK and ALT levels have come down, but his bilirubin is going up. That's not typically a sign of GVHD. It could be a medication effect, or it could be caused by blockage of a bile duct (e.g. by a swollen lymph node), in which case it is possible to put a stent in. She has ordered a CT scan for tomorrow, which will give her a good look at what might be going on in his liver and also a look at the fluid around his lungs, which appears to be continuing to diminish. They've changed his antibiotics from every 8 hours to every 12 hours to see if that helps.
She was pleased to see that Leif's platelets have come up slightly, from less than 5 to 7. Although patients typically get a platelet transfusion when they are below 10, if one is not actively bleeding, it's not clear that platelet levels in this range are harmful. They are given as a preventative measure. Due to the cannula (little plastic doohickey) that delivers supplemental oxygen to his nose, plus the low platelets, Leif's had some minor nose bleeding. That's pretty common, and not the kind of bleeding they're worried about. The oxygen is bubbling through water to make it gentler on his nose, but it's still drying to have oxygen blowing up your nose 24/7. The platelet shortage is due to a recall, and is affecting all of New England. More platelets are being shipped in from around the country and should be here tomorrow.
Let's hear it for blood donors everywhere. Let's also hear it for Eliza, who generously changed her Sunday plans and is bringing Leif's cyclosporin (and my Kindle) down to us this afternoon. I am grateful that there are so many people who love Leif and who are helping us through this in ways large and small.
Otherwise, Leif has been having a quiet day resting up after seeing a lot of visitors yesterday. His pain is being controlled okay now, and mostly consists of back pain. We're using a heating pad and I've been giving him back rubs (gently, since his platelets are low). I'm also having a quiet day resting up, after a quiet day resting up yesterday.
Liver enzymes elevated, platelet shortage
Posted by Becky
A couple of days after reducing Leif's steroids, yesterday his liver enzyme levels were elevated quite a bit. This was disappointing.They have increased his steroid dose again and* the numbers have started to come down.
Plan B (which is not very good, otherwise it would be Plan A) is to hope for FDA approval of Ibrutinib sooner rather than later. I don't know how long it takes between FDA approval and drug being available to buy (assuming the company has to set pricing, scale up manufacturing, and commence distribution of drug to pharmacies). If any of my pharma friends have experience with this, please drop me a line.
His platelets are at 7 today (yesterday they were below 5). Normally they try to keep Leif above 10, but there is a platelet shortage. So they are going to hold off and see how his levels are tomorrow.
If anybody has time today to drive from Brooks/Belfast down to Brunswick - Leif's cyclosporin bottle is running dry (it has bubbles in it when he draws up a dose), and we can't tell how many doses are left in the bottle. Maybe not one, although he had enough for his morning dose. My cell phone just broke (every time I open it, it tries to speed-dial 7, and none of the other keys work), so I can't call anybody unless I have their phone # memorized, which is basically nobody. If I don't hear from someone within an hour or two, I will drive up to Brooks to get the medicine and bring it back down. Before I leave I will stop by the local US Cellular store and see if they are open on Sundays (the Belfast one isn't) to replace my phone.
*They have kept his steriods steady. See the post from later today for more information.
A couple of days after reducing Leif's steroids, yesterday his liver enzyme levels were elevated quite a bit. This was disappointing.
Plan B (which is not very good, otherwise it would be Plan A) is to hope for FDA approval of Ibrutinib sooner rather than later. I don't know how long it takes between FDA approval and drug being available to buy (assuming the company has to set pricing, scale up manufacturing, and commence distribution of drug to pharmacies). If any of my pharma friends have experience with this, please drop me a line.
His platelets are at 7 today (yesterday they were below 5). Normally they try to keep Leif above 10, but there is a platelet shortage. So they are going to hold off and see how his levels are tomorrow.
If anybody has time today to drive from Brooks/Belfast down to Brunswick - Leif's cyclosporin bottle is running dry (it has bubbles in it when he draws up a dose), and we can't tell how many doses are left in the bottle. Maybe not one, although he had enough for his morning dose. My cell phone just broke (every time I open it, it tries to speed-dial 7, and none of the other keys work), so I can't call anybody unless I have their phone # memorized, which is basically nobody. If I don't hear from someone within an hour or two, I will drive up to Brooks to get the medicine and bring it back down. Before I leave I will stop by the local US Cellular store and see if they are open on Sundays (the Belfast one isn't) to replace my phone.
*They have kept his steriods steady. See the post from later today for more information.
Friday, November 8, 2013
Quiet day getting blood and platelets
Posted by Becky
It continues to look like the bendamustine and revelimid got a response; Leif's chest xray from yesterday shows no additional fluid accumulation around his lungs, and it seems to me that the swelling in his legs is less than it was, although it's still significant. Now we are basically going to sit around and wait while he adjusts to lower steroid doses, and his platelet count comes back up. That will take an undetermined number of days; different chemo regimens suppress bone marrow for different amounts of time, and of course Leif's bone marrow has taken a beating. He'll have to hang out in the hospital until his pain is under control by oral medication, and presumably until he doesn't need quite so many transfusions every day, and is done with the IV antibiotics.
Leif's pain level is still high, but not as bad as it was yesterday. Dr. Connelly says that it is likely due to coming off the steroids, which had been preventing him from feeling the pain so much. She increased his painkiller dose, but also says that his pain should lessen as the chemotherapy continues to take effect. He's been sleeping since he finished taking his pills this morning. He's getting two units of platelets and two of blood today, so he'll be hooked up to an IV all day anyway.
Because his painkiller is on a PCA, and blood products can't go through the same line as anything else, he had to have an IV put in his arm this morning for the painkillers, while the blood goes into his port. He's not thrilled about that, but you've gotta do what you've gotta do.
I was up late last night keeping an eye on Leif's respiration - he was doped up and loopy, and the nurses were worried. If his respiration dropped too low, they would need to give him medication that would drop all the painkillers out of his body at once. Ouch. At about 3 AM, one of his narcotics wore off and he seemed to be just asleep, as opposed to knocked out, so I was able to get some sleep at that point. I'm going to try to take a nap now.
It continues to look like the bendamustine and revelimid got a response; Leif's chest xray from yesterday shows no additional fluid accumulation around his lungs, and it seems to me that the swelling in his legs is less than it was, although it's still significant. Now we are basically going to sit around and wait while he adjusts to lower steroid doses, and his platelet count comes back up. That will take an undetermined number of days; different chemo regimens suppress bone marrow for different amounts of time, and of course Leif's bone marrow has taken a beating. He'll have to hang out in the hospital until his pain is under control by oral medication, and presumably until he doesn't need quite so many transfusions every day, and is done with the IV antibiotics.
Leif's pain level is still high, but not as bad as it was yesterday. Dr. Connelly says that it is likely due to coming off the steroids, which had been preventing him from feeling the pain so much. She increased his painkiller dose, but also says that his pain should lessen as the chemotherapy continues to take effect. He's been sleeping since he finished taking his pills this morning. He's getting two units of platelets and two of blood today, so he'll be hooked up to an IV all day anyway.
Because his painkiller is on a PCA, and blood products can't go through the same line as anything else, he had to have an IV put in his arm this morning for the painkillers, while the blood goes into his port. He's not thrilled about that, but you've gotta do what you've gotta do.
I was up late last night keeping an eye on Leif's respiration - he was doped up and loopy, and the nurses were worried. If his respiration dropped too low, they would need to give him medication that would drop all the painkillers out of his body at once. Ouch. At about 3 AM, one of his narcotics wore off and he seemed to be just asleep, as opposed to knocked out, so I was able to get some sleep at that point. I'm going to try to take a nap now.
Thursday, November 7, 2013
Pain day; update on Ibrutinib
Posted by Becky
We just met with Leif's main local oncologist, Dr. Connelly. She has spoken extensively with the people in Vermont who are involved in the Ibrutinib study. She explained to them that if Leif is going to meet the inclusion criteria, that time will be very short. He needs to be on no more than 20 mg of any steroid, so she will begin tapering Leif's prednisone starting today. His liver numbers are completely fine, so any GVHD is being managed well by the immune suppressants he's taking. And, his platelets need to be at 50. They are now around 10. Platelets are the first blood cells to recover after chemotherapy. He needs to pass the screening labs in Vermont, so the plan is to keep close tabs on his labs here, and as soon as he meets the inclusion criteria, we are jumping in the car and driving at speed to Burlington, where he will re-consent, get screened again, and, if - no, when - he passes, get the medication within 48 hours. Dr. Connelly has asked them to do what they can to have as little time lag as possible within passing the screening and getting the pills.
Leif continues to breathe okay thanks to the Bendamustine he got yesterday and the day before. He's on 3-4 liters of supplemental oxygen, down from 4-5. A noticeable node in his chest is smaller, according to Dr. Benton, Dr. Connelly's partner who is in the hospital on the days she's in Belfast.
He's having a bad pain day today, with pain in his abdomen (probably because his poor spleen keeps growing and shrinking; bad bounts of constipation are not helping there) and back, which often flares up when he can't move around much. He still has quite a bit of edema in his legs and feet as well. Dr. Connelly is prescribing a PCA pump, those lovely machines where patients can self-administer painkiller until they're on top of the pain. Leif is a pro now at knowing what works to get on top of pain and then manage if from there.
A thousand thank-yous to everyone who's putting feelers out about an alternative method of getting Leif some Ibrutinib if he doesn't squeak by the study parameters. What may help is a site that might be slightly more flexible about inclusion/exclusion criteria, or something along those lines. The stress of not knowing whether he will be able to get timely access to this promising drug has been taking its toll on us. Other than the lymphoma, he's still in good shape - young, no complications like diabetes or cardiovascular disease or out-of-control GVHD. He's super methodical and compliant taking his medications, eating healthily and exercising as he's able, and of course he has the legendary Leif tenacity. So I feel like he's a great patient to include in a study.
(Details for people with friends and colleagues in the industry - the drugmaker is Janssen, a subsidiary of Johnson and Johnson. Pharmacyclics did the early drug development. The contract research organization running the study is INC Research, and the local IRB is the Committe on Human Research at the University of Vermont. This is the study, and here is the press release describing its status as an expanded access study.)
We just met with Leif's main local oncologist, Dr. Connelly. She has spoken extensively with the people in Vermont who are involved in the Ibrutinib study. She explained to them that if Leif is going to meet the inclusion criteria, that time will be very short. He needs to be on no more than 20 mg of any steroid, so she will begin tapering Leif's prednisone starting today. His liver numbers are completely fine, so any GVHD is being managed well by the immune suppressants he's taking. And, his platelets need to be at 50. They are now around 10. Platelets are the first blood cells to recover after chemotherapy. He needs to pass the screening labs in Vermont, so the plan is to keep close tabs on his labs here, and as soon as he meets the inclusion criteria, we are jumping in the car and driving at speed to Burlington, where he will re-consent, get screened again, and, if - no, when - he passes, get the medication within 48 hours. Dr. Connelly has asked them to do what they can to have as little time lag as possible within passing the screening and getting the pills.
Leif continues to breathe okay thanks to the Bendamustine he got yesterday and the day before. He's on 3-4 liters of supplemental oxygen, down from 4-5. A noticeable node in his chest is smaller, according to Dr. Benton, Dr. Connelly's partner who is in the hospital on the days she's in Belfast.
He's having a bad pain day today, with pain in his abdomen (probably because his poor spleen keeps growing and shrinking; bad bounts of constipation are not helping there) and back, which often flares up when he can't move around much. He still has quite a bit of edema in his legs and feet as well. Dr. Connelly is prescribing a PCA pump, those lovely machines where patients can self-administer painkiller until they're on top of the pain. Leif is a pro now at knowing what works to get on top of pain and then manage if from there.
A thousand thank-yous to everyone who's putting feelers out about an alternative method of getting Leif some Ibrutinib if he doesn't squeak by the study parameters. What may help is a site that might be slightly more flexible about inclusion/exclusion criteria, or something along those lines. The stress of not knowing whether he will be able to get timely access to this promising drug has been taking its toll on us. Other than the lymphoma, he's still in good shape - young, no complications like diabetes or cardiovascular disease or out-of-control GVHD. He's super methodical and compliant taking his medications, eating healthily and exercising as he's able, and of course he has the legendary Leif tenacity. So I feel like he's a great patient to include in a study.
(Details for people with friends and colleagues in the industry - the drugmaker is Janssen, a subsidiary of Johnson and Johnson. Pharmacyclics did the early drug development. The contract research organization running the study is INC Research, and the local IRB is the Committe on Human Research at the University of Vermont. This is the study, and here is the press release describing its status as an expanded access study.)
Wednesday, November 6, 2013
Port issue
Posted by Becky
Leif's port is having issues. They can get flushes in, but they can't get a "blood return" out. Last night they tried accessing it several times, which of course makes Leif sore. They tried putting in a bunch of heparin to clear any clogs, to no avail. They were hoping to be able to do a port scan today to maek sure it is still in the right place, but the machine is booked all day, so instead they are soaking the port with "cath-flow," a heparin-like solvent. They can do that twice. If they still can't get the port going, they'll put an IV in Leif's arm and give him the medication he needs today though that, and scan the port tomorrow.
Leif's breathing seems about the same as yesterday.
UPDATE 1:43 EST: A second cath-flow soak did the trick. No need for a peripheral IV. Phew.
Leif's port is having issues. They can get flushes in, but they can't get a "blood return" out. Last night they tried accessing it several times, which of course makes Leif sore. They tried putting in a bunch of heparin to clear any clogs, to no avail. They were hoping to be able to do a port scan today to maek sure it is still in the right place, but the machine is booked all day, so instead they are soaking the port with "cath-flow," a heparin-like solvent. They can do that twice. If they still can't get the port going, they'll put an IV in Leif's arm and give him the medication he needs today though that, and scan the port tomorrow.
Leif's breathing seems about the same as yesterday.
UPDATE 1:43 EST: A second cath-flow soak did the trick. No need for a peripheral IV. Phew.
Tuesday, November 5, 2013
Waiting for Chemo
Posted by Becky
Leif's thoracentesis yesterday afternoon has given him some breathing relief, although he still needs suppemental oxygen. They took out as much fluid as they were able to, about 1500 ccs, which is about what they got on Friday. The remaining fluid is thick and locked up in small pockets, so they would not be able to remove it without surgery, which is not a good idea right now. The pulmonologist plans to do another xray and thoracentesis on Thursday. The hope is that the chemotherapy (Bendamustine) which Leif will be getting today will help stop the fluid from getting blocked by lymphoma and backing up into the space around his lungs. Leif has also switched to an extremely low-fat diet; some researchers think that can reduce production of the substance, chyle, that's getting backed up into his chest cavity. That's fine with Leif; he is comfortable on a very low-fat diet, so he won't feel deprived eating steamed broccoli and bean soup.
He got a unit of red blood cells and the plan is still to give him Bendamustine today and tomorrow, now that the infection is under control. The nurse is starting his pre-medications now.
Leif's thoracentesis yesterday afternoon has given him some breathing relief, although he still needs suppemental oxygen. They took out as much fluid as they were able to, about 1500 ccs, which is about what they got on Friday. The remaining fluid is thick and locked up in small pockets, so they would not be able to remove it without surgery, which is not a good idea right now. The pulmonologist plans to do another xray and thoracentesis on Thursday. The hope is that the chemotherapy (Bendamustine) which Leif will be getting today will help stop the fluid from getting blocked by lymphoma and backing up into the space around his lungs. Leif has also switched to an extremely low-fat diet; some researchers think that can reduce production of the substance, chyle, that's getting backed up into his chest cavity. That's fine with Leif; he is comfortable on a very low-fat diet, so he won't feel deprived eating steamed broccoli and bean soup.
He got a unit of red blood cells and the plan is still to give him Bendamustine today and tomorrow, now that the infection is under control. The nurse is starting his pre-medications now.
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