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.
Becky & Leif,
ReplyDeleteBased on the comment about Plan B and waiting for FDA approval, I just looked up Ibrutinib in the clinical trials site.
They are actively recruiting for a Phase 3 trial now - Mantle Cell Lymphoma is a qualification.
http://clinicaltrials.gov/ct2/results?term=Ibrutinib+&Search=Search
Sending love,
Stacey