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.
Monday, November 4, 2013
Blood counts down
Posted by Becky
Leif's blood counts are down today, probably because of the lymphoma. They are going to give him a second bag of platelets, and then a throacentesis. They can't take a whole lot out, up to 2 liters, which will be helpful but probably not as much as he needs to breathe comfortably.
Due to the low blood counts, Leif is not qualifying for the Ibrutinib study. His doctor is investigating getting the drug through "compassionate use;" some pharma companies will provide drugs to very sick patients who have no other options. In the meantime, they are discontinuing Revelimid in hopes that will help his blood counts come up, and giving him Bendamustine (chemotherapy) today and tomorrow in order to hopefully see a response and buy some time. Although it is not great at keeping the lymphoma in check, he did respond rapidly (though incompletely) last time he got it, so we hope it works again somewhat.
He's having quite a bit of trouble breathing, even on supplemental oxygen. His legs are also swelling due to the lymphoma.
Leif's blood counts are down today, probably because of the lymphoma. They are going to give him a second bag of platelets, and then a throacentesis. They can't take a whole lot out, up to 2 liters, which will be helpful but probably not as much as he needs to breathe comfortably.
Due to the low blood counts, Leif is not qualifying for the Ibrutinib study. His doctor is investigating getting the drug through "compassionate use;" some pharma companies will provide drugs to very sick patients who have no other options. In the meantime, they are discontinuing Revelimid in hopes that will help his blood counts come up, and giving him Bendamustine (chemotherapy) today and tomorrow in order to hopefully see a response and buy some time. Although it is not great at keeping the lymphoma in check, he did respond rapidly (though incompletely) last time he got it, so we hope it works again somewhat.
He's having quite a bit of trouble breathing, even on supplemental oxygen. His legs are also swelling due to the lymphoma.
Sunday, November 3, 2013
Baffles
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.
Friday, November 1, 2013
Oops, I posted the wrong phone number
I gave you the wrong phone number in the last post. I hope that having too many digits clued most of you in. It should have been:
(207) 619 4446
I will write more later. Very sleepy right now.
Leif
(207) 619 4446
I will write more later. Very sleepy right now.
Leif
Thursday, October 31, 2013
Kinetic failure of treatment.
It has been quite a while since my last post, and a lot has happened. The chemotherapy worked really well. My lymph-nodes got smaller, and my spleen shrank a little. My energy level was good. I was taking little walks every day.
The chemotherapy cycle last 21 days. I take the Revlimid that last for 14 days. The other two drugs are IV, but I only have them for the first 2 days of the cycle. Then I have a week to recover, before starting the next cycle
On day 18 of my cycle, four days after I stopped taking the RevLimid, I noticed that the lymph-node had started growing again. There were other signs that the lymphoma was shrugging off the treatment.
I had an appointment scheduled for today, Wednesday at DHMC to see Dr. Meehan, so I was not too worried about it. But on Monday, my labs, especially my white blood cells count was low enough that Dr. Connelly wanted to wait until she saw me before starting the next round of chemo.
Tuesday, I met with Dr. Connelly and mentioned that over the last two days or so, my energy levels have been dropping. We went over the blood labs that were drawn on Monday. It seems that I have picked up a fever - I am running at about 99.5 currently, but was 100 on Monday. I have some infection, but we don't yet know what it is. Probably something that something that a person with a working immune system would be able to shrug off and not even know that they had it.
The bad news is that this chemo regiment is not working. Each therapy knocks back the lymphoma, but the lymphoma gains more in the recovery week than I do. It is called kinetic failure. We currently have no back-up plan.
It is still worth staying on the treatment until we figure something out, because it at least slows the progress of the lymphoma. But I can not start my next round until I have this infection under control.
So I
I am stressed that Plan B did not work. On the bright side, such as it is, failure of treatment is one of the criterion for being accepted in the the Ibrutinib study, which is a more likely cure. It looks like my Graft vs Host disease is now under control, which is what was keeping out last time, and Dr. Meehan, Dr. Connelly and Dr. Sprague had a long conference call about the best way for me to enter the study.
But we will see what happens. So, currently, I am it Mid-coast Hospital for an indefinite period of time. Perhaps as little as three days, probably not longer than a week. They have better resources to take care of my infection. In fact, they have moved me into ICU. I feel pretty good, all things considering. I hurt in the morning, and have a hard time fulling waking up before about 11am. The nurses down at the special hematology/oncology unit, along with my fever and low blood pressure took this to mean that I was in rougher shape than I think that I am. I am certainly the most mobile patient in the ICU, and my insistence to get out of the room for even a little walk through them all for a loop. I did manage to get my walk in finally.
I only get one bar of cell service in here, so it is dicy to call out. You can call in using my new number:
(207) 619.4446
I am typically feeling up to chatting after about llam.
Leif
.
The chemotherapy cycle last 21 days. I take the Revlimid that last for 14 days. The other two drugs are IV, but I only have them for the first 2 days of the cycle. Then I have a week to recover, before starting the next cycle
On day 18 of my cycle, four days after I stopped taking the RevLimid, I noticed that the lymph-node had started growing again. There were other signs that the lymphoma was shrugging off the treatment.
I had an appointment scheduled for today, Wednesday at DHMC to see Dr. Meehan, so I was not too worried about it. But on Monday, my labs, especially my white blood cells count was low enough that Dr. Connelly wanted to wait until she saw me before starting the next round of chemo.
Tuesday, I met with Dr. Connelly and mentioned that over the last two days or so, my energy levels have been dropping. We went over the blood labs that were drawn on Monday. It seems that I have picked up a fever - I am running at about 99.5 currently, but was 100 on Monday. I have some infection, but we don't yet know what it is. Probably something that something that a person with a working immune system would be able to shrug off and not even know that they had it.
The bad news is that this chemo regiment is not working. Each therapy knocks back the lymphoma, but the lymphoma gains more in the recovery week than I do. It is called kinetic failure. We currently have no back-up plan.
It is still worth staying on the treatment until we figure something out, because it at least slows the progress of the lymphoma. But I can not start my next round until I have this infection under control.
So I
I am stressed that Plan B did not work. On the bright side, such as it is, failure of treatment is one of the criterion for being accepted in the the Ibrutinib study, which is a more likely cure. It looks like my Graft vs Host disease is now under control, which is what was keeping out last time, and Dr. Meehan, Dr. Connelly and Dr. Sprague had a long conference call about the best way for me to enter the study.
But we will see what happens. So, currently, I am it Mid-coast Hospital for an indefinite period of time. Perhaps as little as three days, probably not longer than a week. They have better resources to take care of my infection. In fact, they have moved me into ICU. I feel pretty good, all things considering. I hurt in the morning, and have a hard time fulling waking up before about 11am. The nurses down at the special hematology/oncology unit, along with my fever and low blood pressure took this to mean that I was in rougher shape than I think that I am. I am certainly the most mobile patient in the ICU, and my insistence to get out of the room for even a little walk through them all for a loop. I did manage to get my walk in finally.
I only get one bar of cell service in here, so it is dicy to call out. You can call in using my new number:
(207) 619.4446
I am typically feeling up to chatting after about llam.
Leif
.
Saturday, October 12, 2013
I feel good.
I had my thoracentesis yesterday. Since Wednesday, I have had less fluid draining into my lung, so I was in much better shape than I thought I would be. Usually, I have to be pushed around in a wheelchair by this time of the week, but yesterday, I was able to walk everywhere.
And by "walking" I really mean "ambling forward". I was still struggling for air, but it was faster than going and getting a wheelchair. In fact, my doctor and I had a fairly long conversation on whether it was worth doing the draining, or whether it made sense to wait. I was not sure that I would make it all the way to Monday though, and did not want to be stuck having to come into the emergency room for it. We decided to go ahead and take off as much as we could, and if the plural effusion is slowing down, then I just get a lot longer before I need the next treatment. Plus, I get extra air all weekend.
So we went ahead and he drained 2.5 liters. Which is a lot. My follow-up x-ray showed that we had drained nearly ALL the fluid from the lung. In fact, I am a little sore because that part of my lung has not seen any air for a long long time. I can sort of feel the lung work at re-inflating with every breath I take. Yesterday was pretty much a long coughing fit, as I worked out the phlegm that had pooled down there. That was probably TMI.
Air is GREAT. I have been a little high from the extra oxygen. Also, it is fantastic that my chemo seems to be working already. I did not expect to get any real benefit for at least several treatments because my form of lymphoma is so well known not to respond to light chemo.
There are some side effects. I have been having a lot of trouble sleeping. My appetite has been suppressed, and food mostly tastes bad. My neuropathy (tingling and numbness) in my hands and feet has gotten worse, and now I have a little in my face.
And, of course, this "I feel good" is on a baseline of unbelievable crappy, but I don't care. Any improvement feels great. The way up is WAY better than the way down. It feel good to be able to breath, walk a little, and be able to do a few little things. When getting dressed for the day does not take ALL your energy for the day, it is a good day.
Leif
And by "walking" I really mean "ambling forward". I was still struggling for air, but it was faster than going and getting a wheelchair. In fact, my doctor and I had a fairly long conversation on whether it was worth doing the draining, or whether it made sense to wait. I was not sure that I would make it all the way to Monday though, and did not want to be stuck having to come into the emergency room for it. We decided to go ahead and take off as much as we could, and if the plural effusion is slowing down, then I just get a lot longer before I need the next treatment. Plus, I get extra air all weekend.
So we went ahead and he drained 2.5 liters. Which is a lot. My follow-up x-ray showed that we had drained nearly ALL the fluid from the lung. In fact, I am a little sore because that part of my lung has not seen any air for a long long time. I can sort of feel the lung work at re-inflating with every breath I take. Yesterday was pretty much a long coughing fit, as I worked out the phlegm that had pooled down there. That was probably TMI.
Air is GREAT. I have been a little high from the extra oxygen. Also, it is fantastic that my chemo seems to be working already. I did not expect to get any real benefit for at least several treatments because my form of lymphoma is so well known not to respond to light chemo.
There are some side effects. I have been having a lot of trouble sleeping. My appetite has been suppressed, and food mostly tastes bad. My neuropathy (tingling and numbness) in my hands and feet has gotten worse, and now I have a little in my face.
And, of course, this "I feel good" is on a baseline of unbelievable crappy, but I don't care. Any improvement feels great. The way up is WAY better than the way down. It feel good to be able to breath, walk a little, and be able to do a few little things. When getting dressed for the day does not take ALL your energy for the day, it is a good day.
Leif
Wednesday, October 9, 2013
Dr. visit and Surprise Chemo!
Met with Dr. Connelly this morning. Got a bunch of questions resolved, and got a good visual check. It is nice to have a MD look me over and get a professional appraisal of my condition. She felt that the chemo was already having an effect vs. the last time I had seen her. I sort have thought so too, even though it usually takes a week or so to kick in. It is so easy to be a little in denial and try to look at all the good signs, that I am never quite sure if I am fooling myself or not. So having her look me over and be please felt really good.
So a visit that I thought would take no more than 45 min. or so came with quite the surprise. Apparently, there were three compounding errors in the pharmacy and the notes on Bendamustine from DHMC. For this particular therapy, I am supposed to have Rituxan on day 1, Bendamustine on day 1 AND 2, and Revlimid on days 1-14. No-one at the Oncology clinic knew about the day 2 of Bendamustine. So I had it today. No harm done at all - a day doesn't make any real difference here. I am just glad that Dr. Connelly caught it, and it was only delayed by a day.
Still, it made for a long day. I expected to get out by noon, and with the pre-treatment drugs and the Bendamustine, I did not get out of there until 4. I know that when I enter a hospital, I have no expectation of my schedule, and I brought my computer, and got just as much done there as I would have anywhere. Be that as it may, "Surprise Chemo" is low on the list that one wants to hear. :)
I am still feeling better, and it is clear to me that my plural effusion is already slowing down. I am not nearly as winded today as I expected to be. I am still getting a thoracentesis on Friday, because I will not be able to hold out over the weekend, but Dr. Connelly and I both expect that I will not have to be coming in every 4 days, but it will start stretching to 6 days next time, and after only a few more draws, may likely become resolved. I can't express how much I am hoping for that outcome.
I also learned that the stuff that they take out of my lung is not just heavy in fluid, but high in protein, so Dr. Connelly insisted that I start taking protein supplements. I went for one that has both soy and whey protein, has one of the higher protein amounts per serving, and is guaranteed to "taste great". It tastes pretty industrial to me, but it is drinkable, and as medicine, not that bad. I might get used to the taste after a while. It certainly explains why I have not put on any muscle since I have gotten home though. I had been wondering about that. I try pretty hard to get back in some sort of shape after each hospital visit, and I have not made hardly any progress for more than a month.
Leif
So a visit that I thought would take no more than 45 min. or so came with quite the surprise. Apparently, there were three compounding errors in the pharmacy and the notes on Bendamustine from DHMC. For this particular therapy, I am supposed to have Rituxan on day 1, Bendamustine on day 1 AND 2, and Revlimid on days 1-14. No-one at the Oncology clinic knew about the day 2 of Bendamustine. So I had it today. No harm done at all - a day doesn't make any real difference here. I am just glad that Dr. Connelly caught it, and it was only delayed by a day.
Still, it made for a long day. I expected to get out by noon, and with the pre-treatment drugs and the Bendamustine, I did not get out of there until 4. I know that when I enter a hospital, I have no expectation of my schedule, and I brought my computer, and got just as much done there as I would have anywhere. Be that as it may, "Surprise Chemo" is low on the list that one wants to hear. :)
I am still feeling better, and it is clear to me that my plural effusion is already slowing down. I am not nearly as winded today as I expected to be. I am still getting a thoracentesis on Friday, because I will not be able to hold out over the weekend, but Dr. Connelly and I both expect that I will not have to be coming in every 4 days, but it will start stretching to 6 days next time, and after only a few more draws, may likely become resolved. I can't express how much I am hoping for that outcome.
I also learned that the stuff that they take out of my lung is not just heavy in fluid, but high in protein, so Dr. Connelly insisted that I start taking protein supplements. I went for one that has both soy and whey protein, has one of the higher protein amounts per serving, and is guaranteed to "taste great". It tastes pretty industrial to me, but it is drinkable, and as medicine, not that bad. I might get used to the taste after a while. It certainly explains why I have not put on any muscle since I have gotten home though. I had been wondering about that. I try pretty hard to get back in some sort of shape after each hospital visit, and I have not made hardly any progress for more than a month.
Leif
Tuesday, October 8, 2013
Long, but good day yesterday.
I feel SO much better.
I had so much going on, so many things were up in the air about what was going to happen next, and I was really low on air. Lack of oxygen was making me extremely foggy, and I had not been sleeping well as my back has been hurting when I lay down, so I was also somewhat sleep deprived. Makes for a hard morning when you need to make sure that certain very important procedures are done, and no-one else at the hospital had yet heard of my plan (to check first to see if I could get into the Ibrutinib study). It was not much different than the current plan - mostly about timing on the labs, but they had not scheduled my thoracentesis (the surgery where I get my lungs drained). So I had to be sharp to get that all taken care of by 8:30am. Whew.
So, we took my labs and they were able to schedule the thoracentesis immediately afterwards. They removed 2.8 liters of fluid. When you see it sitting in the jar - it is a LOT of fluid. It is no wonder my back has been hurting. It weighs just over 6 pounds, and is in sort of an awkward place for you body to be carrying extra weight. It also made me think that I really ought to be drinking more liquid. They are taking that much out about every 5 days. It has to come from somewhere. My body should be USING that stuff, you know? 2.8 Liters on top of what I ought to be drinking to keep my kidneys flushed from my medications, on top of what people ought to be drinking every day. I probably should have something to sip at all day long.
Anyway, the thoracentesis went really well, and within an hour or so, my color came back, I could THINK again, I had the oxygen to walk. I don't feel "normal" of course, but I feel pretty darn good all things considering.
When I got back to Oncology, they had my test results, and I still have Graft vs. Host Disease. This was the most likely outcome, despite my plan, so I was not disappointed. I just think that if I had not given the other a try, I would have regretted not knowing if I could have made it into the Ibrutinib study. Also, it was nice that my lab was not close. I had to be under "43" and I tested at "91". The GvHD is under control - that is a lower number than my last test, but it was not a "45" or something that would have been SO close as to keep PLAN A into effect. It was a relief.
We started my chemo immediately afterwards. My chemo consists of Rituxin, Bendamustine, and a new pill called Revlimid. Historically, I have had reactions to Rituxin. Everything from full-blown rigors to relatively mild chills. This time went very smoothly. I had a few moments of slight shortness of breath, but other than that, I did not even notice that I was getting chemo. We put the Rituxin in pretty slowly - it took about 4 hrs, and we waited longer with the pre-meds. I did not get out of the hospital until 6:30pm, so it was a long day, but it went really well. This chemo plan is similar to the one that I had at Dartmouth-Hitchcock, and there it was able to get my lymphoma suppressed enough to for the DLI (the Donor-lymphocyte infusion, where they give you more donor T-Cells to help your body's immune system fight the lymphoma). So we are pretty confident that it will help considerably, although we are also pretty sure that it will not actually put me into remission - which is why trying to get into the Ibrutinib study had been so important.
We believe that this chemo regiment will hold me over until Ibrutinib is approved by the FDA and becomes available as a general treatment. That is supposed to happen in late spring, although I heard a rumor recently that it could be as early as December.
My current chemo schedule will be ever 21 days. I had thought that I was supposed to go in weekly, so that was also a pleasant surprise. Hopefully, I should see some improvement in my plural effusion (the liquid going into my lungs) in the next 2 weeks. I am looking forward to that.
I thought I would be just beat today, and I am tired. Yesterday was a long day. But so much stress has been lifted that while I am tired, and not going to tackle anything big. I feel pretty darn good.
Leif
I had so much going on, so many things were up in the air about what was going to happen next, and I was really low on air. Lack of oxygen was making me extremely foggy, and I had not been sleeping well as my back has been hurting when I lay down, so I was also somewhat sleep deprived. Makes for a hard morning when you need to make sure that certain very important procedures are done, and no-one else at the hospital had yet heard of my plan (to check first to see if I could get into the Ibrutinib study). It was not much different than the current plan - mostly about timing on the labs, but they had not scheduled my thoracentesis (the surgery where I get my lungs drained). So I had to be sharp to get that all taken care of by 8:30am. Whew.
So, we took my labs and they were able to schedule the thoracentesis immediately afterwards. They removed 2.8 liters of fluid. When you see it sitting in the jar - it is a LOT of fluid. It is no wonder my back has been hurting. It weighs just over 6 pounds, and is in sort of an awkward place for you body to be carrying extra weight. It also made me think that I really ought to be drinking more liquid. They are taking that much out about every 5 days. It has to come from somewhere. My body should be USING that stuff, you know? 2.8 Liters on top of what I ought to be drinking to keep my kidneys flushed from my medications, on top of what people ought to be drinking every day. I probably should have something to sip at all day long.
Anyway, the thoracentesis went really well, and within an hour or so, my color came back, I could THINK again, I had the oxygen to walk. I don't feel "normal" of course, but I feel pretty darn good all things considering.
When I got back to Oncology, they had my test results, and I still have Graft vs. Host Disease. This was the most likely outcome, despite my plan, so I was not disappointed. I just think that if I had not given the other a try, I would have regretted not knowing if I could have made it into the Ibrutinib study. Also, it was nice that my lab was not close. I had to be under "43" and I tested at "91". The GvHD is under control - that is a lower number than my last test, but it was not a "45" or something that would have been SO close as to keep PLAN A into effect. It was a relief.
We started my chemo immediately afterwards. My chemo consists of Rituxin, Bendamustine, and a new pill called Revlimid. Historically, I have had reactions to Rituxin. Everything from full-blown rigors to relatively mild chills. This time went very smoothly. I had a few moments of slight shortness of breath, but other than that, I did not even notice that I was getting chemo. We put the Rituxin in pretty slowly - it took about 4 hrs, and we waited longer with the pre-meds. I did not get out of the hospital until 6:30pm, so it was a long day, but it went really well. This chemo plan is similar to the one that I had at Dartmouth-Hitchcock, and there it was able to get my lymphoma suppressed enough to for the DLI (the Donor-lymphocyte infusion, where they give you more donor T-Cells to help your body's immune system fight the lymphoma). So we are pretty confident that it will help considerably, although we are also pretty sure that it will not actually put me into remission - which is why trying to get into the Ibrutinib study had been so important.
We believe that this chemo regiment will hold me over until Ibrutinib is approved by the FDA and becomes available as a general treatment. That is supposed to happen in late spring, although I heard a rumor recently that it could be as early as December.
My current chemo schedule will be ever 21 days. I had thought that I was supposed to go in weekly, so that was also a pleasant surprise. Hopefully, I should see some improvement in my plural effusion (the liquid going into my lungs) in the next 2 weeks. I am looking forward to that.
I thought I would be just beat today, and I am tired. Yesterday was a long day. But so much stress has been lifted that while I am tired, and not going to tackle anything big. I feel pretty darn good.
Leif
Saturday, October 5, 2013
Long morning, new thought about the Ibrutinib study.
Slow to get going this morning. I did not sleep very well. When I lay down, I get wheezing in my lungs, which is not uncomfortable, but is actually loud enough to keep me awake. I hope that this is a temporary thing caused by the constant agitation of my lungs filling with fluid and being drained, and once my plural effusion is under control, it will calm down and stop. In the meantime, it can make for a long night.
It occurred to me today that since I have been on the Prednisone for a full week since my last lab, I might be completely over my Graft vs Host Disease (GvHD), and that it still might make sense to take the lab, show that it is under control. Get off the Prednisone until Friday - send THAT lab to the Ibrutinib study people, and if it shows that I am indeed over the GvHD, drive out Monday the 13th to get on the Ibrutinib. It would mean one more week without treatment, but it might still be worth it. I would definitely need solid assurance from the Ibrutinib study director that this would be acceptable, but since it was the plan that he suggested, it is possible that the third time would be the charm.
I think that it is worth a call to Dr. Meehan monday morning. I could have the labs drawn at 8:30, get my thoracentesis, and know whether my GvHD was cured by the time I got back from the surgery. If it is not COMPLETELY cured, it is obvious to me to go ahead with the treatment that Dr. Meehan and I discussed on Friday. But if it is COMPLETELY cured, perhaps it makes sense to take one more stab at the Ibrutinib study. I could even delay taking my Prednisone until after my lab came back, so if I am clear, Monday would count as a day off Prednisone. That means that potentially, I could get a lab on Thursday sent off and get treatment on Friday.
Something to think about tomorrow. It is important to look at every possibility and think things through. Even though I did not get into the study last time, I should not close the door if the benefit of waiting 4 days outweigh going on the Rituxin treatment immediately. If I take 15 mg of Prednisone tomorrow (instead of 70 mg) , then Sunday will count as a day that it is under control and I could potentially get treatment on Thursday. You have to take your doctor's knowledge seriously, but at the same time, I am the one that is finally responsible for my health and treatment.
That is a lot to try to coordinate Monday morning before 8:30am, especially since I know that I will be a little foggy (I always am on the day of my thoracentesis because I am just not getting enough oxygen to my brain for brilliant thought). I suppose I ought to call the oncologist on call, both at Dartmouth and at Midcoast and discuss it with them. If I go ahead, I need to get a sign-off that I only took 15mg of Prednisone on Sunday. 15 mg of Prednisone is acceptable in the Ibrutinib study parameters.
I can't really see a down-side to that. One day with a lower dose of Prednisone will not make a difference with GvHD, so I am not risking anything there if i find that it is not under control on Monday. Fluctuating one's Prednisone dose has the side effect of feeling horrible, and a usual taper from 70 mg would usually be over a couple of weeks, but this is a pretty minor discomfort in the scheme of things. If it works out, I will probably be better off in the long run.
You do the best you can with what you have to work with.
Leif
It occurred to me today that since I have been on the Prednisone for a full week since my last lab, I might be completely over my Graft vs Host Disease (GvHD), and that it still might make sense to take the lab, show that it is under control. Get off the Prednisone until Friday - send THAT lab to the Ibrutinib study people, and if it shows that I am indeed over the GvHD, drive out Monday the 13th to get on the Ibrutinib. It would mean one more week without treatment, but it might still be worth it. I would definitely need solid assurance from the Ibrutinib study director that this would be acceptable, but since it was the plan that he suggested, it is possible that the third time would be the charm.
I think that it is worth a call to Dr. Meehan monday morning. I could have the labs drawn at 8:30, get my thoracentesis, and know whether my GvHD was cured by the time I got back from the surgery. If it is not COMPLETELY cured, it is obvious to me to go ahead with the treatment that Dr. Meehan and I discussed on Friday. But if it is COMPLETELY cured, perhaps it makes sense to take one more stab at the Ibrutinib study. I could even delay taking my Prednisone until after my lab came back, so if I am clear, Monday would count as a day off Prednisone. That means that potentially, I could get a lab on Thursday sent off and get treatment on Friday.
Something to think about tomorrow. It is important to look at every possibility and think things through. Even though I did not get into the study last time, I should not close the door if the benefit of waiting 4 days outweigh going on the Rituxin treatment immediately. If I take 15 mg of Prednisone tomorrow (instead of 70 mg) , then Sunday will count as a day that it is under control and I could potentially get treatment on Thursday. You have to take your doctor's knowledge seriously, but at the same time, I am the one that is finally responsible for my health and treatment.
That is a lot to try to coordinate Monday morning before 8:30am, especially since I know that I will be a little foggy (I always am on the day of my thoracentesis because I am just not getting enough oxygen to my brain for brilliant thought). I suppose I ought to call the oncologist on call, both at Dartmouth and at Midcoast and discuss it with them. If I go ahead, I need to get a sign-off that I only took 15mg of Prednisone on Sunday. 15 mg of Prednisone is acceptable in the Ibrutinib study parameters.
I can't really see a down-side to that. One day with a lower dose of Prednisone will not make a difference with GvHD, so I am not risking anything there if i find that it is not under control on Monday. Fluctuating one's Prednisone dose has the side effect of feeling horrible, and a usual taper from 70 mg would usually be over a couple of weeks, but this is a pretty minor discomfort in the scheme of things. If it works out, I will probably be better off in the long run.
You do the best you can with what you have to work with.
Leif
Thursday 10/3, in limbo for most of the day.
Had a nice breakfast of leftover indian food, and a volenteer came in to Hope Lodge and made a nice breakfast of pancakes and eggs for everyone that was staying there that day. Real maple syrup for the pancakes. I had one even though I was already pretty full from saag paneer.
I met with Hannah (the Ibrutinib nurse coordinator) at 8:30am. She was so upset that she had called me and confirmed that I was in this study and then it turned out that I was not. She hoped that I would be able to go one more week, show that the Graft vs Host Disease (GvHD) was under control, and enter the study anyway. I explained that in my case, that was probably not an option.
Unfortunately, I could not just start a new treatment, get the lymphoma under control and then switch over to the study. The point of an access study is to get the treatment to patients that are NOT responding to other treatment. If I start a treatment, and respond to it then I can not get into the study. We have to show FAILURE of the treatment to be able to get back on list for the Ibrutinib study. She had talked to Dr. Sprague about it, and Dr. Sprague (who was not in that day), had discussed it with the study director. They had decided that they were willing to use a pretty flexible definition of "not responding" to treatment. For example, I have a reaction to Rituxin (one of the drugs that is in my plan B treatment). We mitigate it by giving me the Rituxin VERY slowly. We don't have to. We could give it to me just fast enough to elicit a reaction, and that might be construed as failure of treatment. This gives some possibility to get back on the Ibrutinib study in a couple of months. Definitely not a PLAN A sort of path, but you search for solutions when you can.
I wrote Dr. Sprague a nice note, thanking him for arguing my case to the study director. If he did all he could have, he will appreciate it, but if he weaseled a bit, I think he will try harder next time. :) The Prednisone / Ibrutinib conflict may well be more serious than I appreciate, and that it really is in my best interest not to be on both drugs at the same time. For example, brain hemorrhage is listed as a possible side effect of Ibrutinib.
It was SO nice to get my thoracentesis. I hate surgery, but this is relatively minor and painless, and I really love being able to breath. It was nice to be getting some oxygen to my head. Here I am, it is 10:30 am. I am not in a treatment program. Dr Meehan (my primary oncologist) assumed that I WOULD be in a treatment program - the Ibrutinib study, and there is no back-up plan in place ready to go. I have lived long enough with this disease to be in uncharted territory. No one know what treatment plan might work. There is no proscribed plan. I know that at this point, Dr. Meehan is calling his colleagues around the country (he excels at collaboration) and working to come up with the best possible plan, given the circumstance.
But I am in complete limbo. I definitely wanted to start treatment on Friday, if possible, rather than have to wait through the weekend and start on Monday, or even Tuesday. Tuesday (the day that Dr Connelly - my local oncologist is at my local hospital - otherwise she is at Midcoast, down in Brunswick). Do I drive to Dartmouth-Hitchcock? It is only a couple hours from Burlington. I definitely did not want to drive back to Brooks and then have to drive out to Dartmouth on Friday. Or Monday, for that matter. Did I need to go to Midcoast, down in Brunswick? That is a 6 hr drive, and I would need to get a hotel room. Do I just head back to Brooks? I had no idea. I called Kate (the nurse coordinator at Dartmouth Hitchcock), and she assured me that they were working to get something in place and would let me know as soon as possible.
For the meantime, I went ahead and reserved another night at Hope Lodge. It is free to cancer patients seeking treatment at Fletcher-Allen (the hospital in Burlington), and I decided, close enough. Also, the manager of Hope Lodge called me to let me know that a volunteer was coming in to cook indian food for supper that night. Isn't that sweet of him? Calling me to let me know because he knew that I liked indian food, so that I wouldn't make other plans without knowing about it.
Liza, my temporary caregiver for the trip, and I went and got Vietnamese food from this little food market that also has a restaurant, where the waitress is clearly the owner's 12 year-old daughter. The ambiance is horrible (being in the middle of a grocery shop with a large-screen tv permanently on the Disney channel), but the food is delicious. We took our order to go and ate back at Hope Lodge.
I got a call about 3:00 pm. While I was hoping to go to Dartmouth-Hitchcock and be seen by Dr. Meehan (I really just wanted some hand-holding here - it had been an unsettling day), the plan was to start a treatment of Rituxin, Bendamustine, and a new drug that had been released in March called Revlamid. Revlamid is a pill and has been shown to be effective with lymphoma, but no-one know the mechanism that it works on. It is related to thalidomide, so there are tons of restrictions about the dangers of getting pregnant, none of which apply to me. Thankfully. It was developed for myeloma, and just recently was found to have a benefit for lymphoma. This treatment could all be done at Waldo Hospital, and I am schedule to start on Monday at 8:30. This will be a long day because I have to take the Rituxan so slowly. Also I am having labs drawn and a thoracentesis. Unfortunately, I will not have a chance to talk with Dr. Connelly, but it better to start right away, and I will probably meet with her on Wednesday.
Dinner was good, went to bed early, and had nice drive home. thought the scenery was nice on the way out, but on the way back it was just peak. I wanted to close my eyes and rest for a while, but everything was so gorgeous that I just stared out the window and the colors and the looming blue mountains in the backgrounds, the dark of the conifers, the sparkling little brooks. One of the most beautiful autumn scenes I have seen in the last 10 years or so - and it is not like where I live is not breath-taking. It was a lovely drive back, and it was good to get home.
Leif
I met with Hannah (the Ibrutinib nurse coordinator) at 8:30am. She was so upset that she had called me and confirmed that I was in this study and then it turned out that I was not. She hoped that I would be able to go one more week, show that the Graft vs Host Disease (GvHD) was under control, and enter the study anyway. I explained that in my case, that was probably not an option.
Unfortunately, I could not just start a new treatment, get the lymphoma under control and then switch over to the study. The point of an access study is to get the treatment to patients that are NOT responding to other treatment. If I start a treatment, and respond to it then I can not get into the study. We have to show FAILURE of the treatment to be able to get back on list for the Ibrutinib study. She had talked to Dr. Sprague about it, and Dr. Sprague (who was not in that day), had discussed it with the study director. They had decided that they were willing to use a pretty flexible definition of "not responding" to treatment. For example, I have a reaction to Rituxin (one of the drugs that is in my plan B treatment). We mitigate it by giving me the Rituxin VERY slowly. We don't have to. We could give it to me just fast enough to elicit a reaction, and that might be construed as failure of treatment. This gives some possibility to get back on the Ibrutinib study in a couple of months. Definitely not a PLAN A sort of path, but you search for solutions when you can.
I wrote Dr. Sprague a nice note, thanking him for arguing my case to the study director. If he did all he could have, he will appreciate it, but if he weaseled a bit, I think he will try harder next time. :) The Prednisone / Ibrutinib conflict may well be more serious than I appreciate, and that it really is in my best interest not to be on both drugs at the same time. For example, brain hemorrhage is listed as a possible side effect of Ibrutinib.
It was SO nice to get my thoracentesis. I hate surgery, but this is relatively minor and painless, and I really love being able to breath. It was nice to be getting some oxygen to my head. Here I am, it is 10:30 am. I am not in a treatment program. Dr Meehan (my primary oncologist) assumed that I WOULD be in a treatment program - the Ibrutinib study, and there is no back-up plan in place ready to go. I have lived long enough with this disease to be in uncharted territory. No one know what treatment plan might work. There is no proscribed plan. I know that at this point, Dr. Meehan is calling his colleagues around the country (he excels at collaboration) and working to come up with the best possible plan, given the circumstance.
But I am in complete limbo. I definitely wanted to start treatment on Friday, if possible, rather than have to wait through the weekend and start on Monday, or even Tuesday. Tuesday (the day that Dr Connelly - my local oncologist is at my local hospital - otherwise she is at Midcoast, down in Brunswick). Do I drive to Dartmouth-Hitchcock? It is only a couple hours from Burlington. I definitely did not want to drive back to Brooks and then have to drive out to Dartmouth on Friday. Or Monday, for that matter. Did I need to go to Midcoast, down in Brunswick? That is a 6 hr drive, and I would need to get a hotel room. Do I just head back to Brooks? I had no idea. I called Kate (the nurse coordinator at Dartmouth Hitchcock), and she assured me that they were working to get something in place and would let me know as soon as possible.
For the meantime, I went ahead and reserved another night at Hope Lodge. It is free to cancer patients seeking treatment at Fletcher-Allen (the hospital in Burlington), and I decided, close enough. Also, the manager of Hope Lodge called me to let me know that a volunteer was coming in to cook indian food for supper that night. Isn't that sweet of him? Calling me to let me know because he knew that I liked indian food, so that I wouldn't make other plans without knowing about it.
Liza, my temporary caregiver for the trip, and I went and got Vietnamese food from this little food market that also has a restaurant, where the waitress is clearly the owner's 12 year-old daughter. The ambiance is horrible (being in the middle of a grocery shop with a large-screen tv permanently on the Disney channel), but the food is delicious. We took our order to go and ate back at Hope Lodge.
I got a call about 3:00 pm. While I was hoping to go to Dartmouth-Hitchcock and be seen by Dr. Meehan (I really just wanted some hand-holding here - it had been an unsettling day), the plan was to start a treatment of Rituxin, Bendamustine, and a new drug that had been released in March called Revlamid. Revlamid is a pill and has been shown to be effective with lymphoma, but no-one know the mechanism that it works on. It is related to thalidomide, so there are tons of restrictions about the dangers of getting pregnant, none of which apply to me. Thankfully. It was developed for myeloma, and just recently was found to have a benefit for lymphoma. This treatment could all be done at Waldo Hospital, and I am schedule to start on Monday at 8:30. This will be a long day because I have to take the Rituxan so slowly. Also I am having labs drawn and a thoracentesis. Unfortunately, I will not have a chance to talk with Dr. Connelly, but it better to start right away, and I will probably meet with her on Wednesday.
Dinner was good, went to bed early, and had nice drive home. thought the scenery was nice on the way out, but on the way back it was just peak. I wanted to close my eyes and rest for a while, but everything was so gorgeous that I just stared out the window and the colors and the looming blue mountains in the backgrounds, the dark of the conifers, the sparkling little brooks. One of the most beautiful autumn scenes I have seen in the last 10 years or so - and it is not like where I live is not breath-taking. It was a lovely drive back, and it was good to get home.
Leif
Wednesday 10/2. Another day of "you have GOT to be kidding me?!!"
Wow, looked at my last post, and there is a lot to update. It has been a crazy week.
Last you all heard, I had barely made the study requirements, and we sent the blood to the independent testing lab and hoped that they would come up with the same numbers. By the time I needed to set off for Burlington, there still was no word on the lab test. So, with fingers crossed, off we went.
We had reached Farmington when I got the phone call. The study coordinator, Hannah, called to say that the liver enzyme number tested at 86! I am IN. Well within the study parameters. You can imagine the relief. It was such a good feeling to finally be out of this limbo and be getting treatment with a very promissing drug. On top of that, the drive out was just beautiful. Rt 2 winds through the mountains and the leaves were just about perfect. My good friend Liza was acting as my temporary caretaker for this trip, and we had a great time driving through the scenery, and looking forward to a pretty decent indian resteraunt in Burlington for dinner.
Not long after, Kate - my primary nurse coordinator from Dartmouth Hitchcock called to make sure that I knew the news, that Dr Sprague (the Doctor running the Ibrutinib study) had called Dr. Meehan (my primary hemo/oncologist) and that I was good to go.
At 4:30, about two hours out from Burlington, I got a phone-call from Dr. Sprague. He called to let me know that there was a problem. The study director - the Doctor that oversees the study for the company that makes Ibrutinib was concerned that I still had Graft vs Host Disease (GvHD). That by itself was not the problem, but the drug that one uses to treat GvHD, Prednisone, is restricted in the study. They allow a dose of 15mg, but I am on a dose of 140mg.
I pointed out that we knew this and had talked about it. On the day that I enter the study, I have to take 15 mg, and then the study allows for up to 10 days of a higher dose. The plan, I reminded Dr. Sprague, was that I get into the study, and then we return my dose to 70 mg. My liver enzyme numbers show a pretty clear trend that we will have successfully treated the GvHD with about another 4 days of treatment, and that I likely will not need any further Prednisone at all.
Statically though, it usually takes 6 weeks of treatment of Prednisone to cure GvHD. It is just a fluke that I respond dramatically. The study director was not buying the idea that I could possible get over the GvHD within the 10 days. And if I did not, I would be out of the study. Furthermore, I would have no possibility of being able to get BACK in the study if I had to be dropped. From his point of view, it would commit resources to a patient that clearly was going to be dropped, it would be bad for study, and it would be bad for me. There is a pretty short list of drugs that you should not be on if you are on Ibrutinib, and Prednisone is one of them.
I asked Dr. Sprague to show the Study director my numbers, talk with Dr. Meehan about how quickly I have responded to the drug before, and show that while on average it does take 60 days, in my personal case, that was highly unlikely. The most likely scenario is that by the time I started taking the drug on Thursday, my GvHD would probably already be in control (as that was 3 days from when I had my last blood draw). He agreed to call the Study director again and argue my case.
I called Dr. Meehan and gave him a heads up. I wanted to make sure that Dr. Sprague gained confidence that, in my specific case, the GvHD was going to be a non-problem.
At 5:45, Dr. Sprague called back. (We are still on the road to Burlington, about 45 minutes out at this point). He had talked to the Study director again, and the final answer was NO. The study director was NOT going to let me into the study at this point. I was going to be allowed into the study with another blood test only after I had been on 15mg of Prednisone or less for at least 5 days. That is to say, I had to prove that my GvHD was under control before I entered the study. I was upset, but in reality, this was not unreasonable. I claimed that it would be under control with 5 days, and they wanted me to prove that this was the case. This would set back my treatment by just a week - everyone would have confidence going forward, and the I would not be subject to whatever risk there is with the combination of Ibrutinib and Prednisone.
Still, I must say that I was pretty disappointed. The problem with this fairly reasonably request is that I have not had any treatment since my DLI, and my lymphoma is especially aggressive. I am having problems with plural effusion (fluid in my lung), and Dr. Meehan and I are not confident that I have an extra week before I have SOME sort of treatment. It is not like the Ibrutinib is magic - any treatment takes a while to kick in. We also want some wiggle room for a Plan B in the event that the Ibrutinib had no effect on me. I really should have started some sort of treatment 2 weeks ago, the first time that I was in Burlington. I talked to Dr Sprague for some time to see if there were any other options, to see if I could convince him to pressure the study director into moving forward anyway. I pointed out that this is not a Phase III trial, but an access trial. That is to say, a method of getting the drug to patients almost SPECIFICALLY in my situation. He felt that he had pushed his limit with the study director, and that nothing good would come out of trying to badger him into accepting me into the study.
So... after sitting by the side of the road for a bit, we decided to go ahead to Burlington. We had reservation at Hope Lodge (which is a wonderful place - I will get around to describing it at some point), and we were still looking forward to dinner at the indian restaurant. Furthermore, even though my meeting for the Ibrutinib study was canceled, I wanted to see Hannah, and thank her for the work that she put in, talk about the possibiblity of getting into the study in a few months after I had some other treatment, and I also scheduled a thoracentesis (draining my lungs), which I desperately needed.
The indian food was pretty good, although not really worth a 6 hour drive in of itself. :)
Leif
Last you all heard, I had barely made the study requirements, and we sent the blood to the independent testing lab and hoped that they would come up with the same numbers. By the time I needed to set off for Burlington, there still was no word on the lab test. So, with fingers crossed, off we went.
We had reached Farmington when I got the phone call. The study coordinator, Hannah, called to say that the liver enzyme number tested at 86! I am IN. Well within the study parameters. You can imagine the relief. It was such a good feeling to finally be out of this limbo and be getting treatment with a very promissing drug. On top of that, the drive out was just beautiful. Rt 2 winds through the mountains and the leaves were just about perfect. My good friend Liza was acting as my temporary caretaker for this trip, and we had a great time driving through the scenery, and looking forward to a pretty decent indian resteraunt in Burlington for dinner.
Not long after, Kate - my primary nurse coordinator from Dartmouth Hitchcock called to make sure that I knew the news, that Dr Sprague (the Doctor running the Ibrutinib study) had called Dr. Meehan (my primary hemo/oncologist) and that I was good to go.
At 4:30, about two hours out from Burlington, I got a phone-call from Dr. Sprague. He called to let me know that there was a problem. The study director - the Doctor that oversees the study for the company that makes Ibrutinib was concerned that I still had Graft vs Host Disease (GvHD). That by itself was not the problem, but the drug that one uses to treat GvHD, Prednisone, is restricted in the study. They allow a dose of 15mg, but I am on a dose of 140mg.
I pointed out that we knew this and had talked about it. On the day that I enter the study, I have to take 15 mg, and then the study allows for up to 10 days of a higher dose. The plan, I reminded Dr. Sprague, was that I get into the study, and then we return my dose to 70 mg. My liver enzyme numbers show a pretty clear trend that we will have successfully treated the GvHD with about another 4 days of treatment, and that I likely will not need any further Prednisone at all.
Statically though, it usually takes 6 weeks of treatment of Prednisone to cure GvHD. It is just a fluke that I respond dramatically. The study director was not buying the idea that I could possible get over the GvHD within the 10 days. And if I did not, I would be out of the study. Furthermore, I would have no possibility of being able to get BACK in the study if I had to be dropped. From his point of view, it would commit resources to a patient that clearly was going to be dropped, it would be bad for study, and it would be bad for me. There is a pretty short list of drugs that you should not be on if you are on Ibrutinib, and Prednisone is one of them.
I asked Dr. Sprague to show the Study director my numbers, talk with Dr. Meehan about how quickly I have responded to the drug before, and show that while on average it does take 60 days, in my personal case, that was highly unlikely. The most likely scenario is that by the time I started taking the drug on Thursday, my GvHD would probably already be in control (as that was 3 days from when I had my last blood draw). He agreed to call the Study director again and argue my case.
I called Dr. Meehan and gave him a heads up. I wanted to make sure that Dr. Sprague gained confidence that, in my specific case, the GvHD was going to be a non-problem.
At 5:45, Dr. Sprague called back. (We are still on the road to Burlington, about 45 minutes out at this point). He had talked to the Study director again, and the final answer was NO. The study director was NOT going to let me into the study at this point. I was going to be allowed into the study with another blood test only after I had been on 15mg of Prednisone or less for at least 5 days. That is to say, I had to prove that my GvHD was under control before I entered the study. I was upset, but in reality, this was not unreasonable. I claimed that it would be under control with 5 days, and they wanted me to prove that this was the case. This would set back my treatment by just a week - everyone would have confidence going forward, and the I would not be subject to whatever risk there is with the combination of Ibrutinib and Prednisone.
Still, I must say that I was pretty disappointed. The problem with this fairly reasonably request is that I have not had any treatment since my DLI, and my lymphoma is especially aggressive. I am having problems with plural effusion (fluid in my lung), and Dr. Meehan and I are not confident that I have an extra week before I have SOME sort of treatment. It is not like the Ibrutinib is magic - any treatment takes a while to kick in. We also want some wiggle room for a Plan B in the event that the Ibrutinib had no effect on me. I really should have started some sort of treatment 2 weeks ago, the first time that I was in Burlington. I talked to Dr Sprague for some time to see if there were any other options, to see if I could convince him to pressure the study director into moving forward anyway. I pointed out that this is not a Phase III trial, but an access trial. That is to say, a method of getting the drug to patients almost SPECIFICALLY in my situation. He felt that he had pushed his limit with the study director, and that nothing good would come out of trying to badger him into accepting me into the study.
So... after sitting by the side of the road for a bit, we decided to go ahead to Burlington. We had reservation at Hope Lodge (which is a wonderful place - I will get around to describing it at some point), and we were still looking forward to dinner at the indian restaurant. Furthermore, even though my meeting for the Ibrutinib study was canceled, I wanted to see Hannah, and thank her for the work that she put in, talk about the possibiblity of getting into the study in a few months after I had some other treatment, and I also scheduled a thoracentesis (draining my lungs), which I desperately needed.
The indian food was pretty good, although not really worth a 6 hour drive in of itself. :)
Leif
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