Last Friday I had a video visit with the Pennsylvania nephrologist. She asked if I had found a local kidney doc, so I filled her in on the appointment I had with the new doc, Dr. G. I told her I would message her his contact information soon.
She went through all my meds. I told her I was thinking of dropping the nighttime dose of nifedipine (one of my many blood pressure meds). I know I’m being somewhat ridiculous in playing around with these meds but I just want to cut them down if I can. Obviously I would monitor my blood pressure at home to see how it responds to a med change. But then I think, what difference does one fewer pill make anyway? Plus I recently added in that alpha lipoic acid, so I’ve just zeroed it all out. On the average day, I take five pills in the morning and seven pills in the evening. On Wednesdays, add three more pills to that; Thursdays, one. It’s just so many.
Sorry if this is a repeat: When I saw the local nephrologist a couple weeks ago, I asked him if I needed to continue taking the high potency iron. Because I take that, I have to take vitamin C and folic acid (they help with absorption of iron). Is that iron really making a difference? He said yes, keep taking it. Drat. That would have allowed me to stop taking three pills a day.
Anyway, Dr. A, the PA nephrologist, agreed with the plan to stop taking the PM nifedipine (I take it in the morning too), but she wants to bump my lisinopril back up to 40 mg. Not because of my blood pressure [which has been great: 116/70 today], but because of the kidney protection properties it has. So that’s the dealio now. My past efforts to completely stop lisinopril (because it raises creatinine levels) is dead. Long live lisinopril!
I told her of Dr. T’s plan to start weaning me off the Kyprolis in six months if all proceeds as planned. She said she is going to discuss with him and Dr. G (the local nephrologist) about possibly speeding up this timeline so I would be weaned off sooner. There is a small chance of acute kidney injury with the use of Kyprolis (which I knew), along with the potential for neuropathy in the extremities (which I definitely knew!). She said if Dr. T prefers his original plan, she’s okay with that since I’m monitored so frequently, but that it would just be better to get off the chemo sooner if possible.
I can see both sides of this. Chemo is hard on the body, no doubt, even though this particular drug does not have the side effects of “typical” chemo drugs I suspect most of us think of. Obviously it serves a purpose, and it saves lives. But it’s also toxic. For me personally, it’s also incredibly hard on my work schedule. Having my Wednesdays back? Sounds dreamy. On the other hand, it’s keeping this disease at bay, and there are so many unknowns if I go off it. Well, more accurately, it’s ALL unknown once I go off it.
Dr. A echoed that: “You’re considered in remission now because your urine protein is under 500 mg. But we won’t know for how long until you’re off the Kyprolis.” [And what’s the plan if it starts trending upward again? Back on the Kyprolis?? For how long? I didn’t ask. I will ask at some point, but this just wasn’t the day. She likely wouldn’t know the answer anyway.]
She would prefer I have another kidney biopsy before weaning off the Kyprolis so we can see the level of inflammation in the kidneys. Sounds fine to me BUT… I don’t care HOW much inflammation there is. She comes at me with the word “prednisone” again, well, we’re gonna have a chat. She’s going to have to come up with a Plan B because that will NOT be happening. Try to kill me once, shame on you. Try to kill me twice, shame on me. Throw as many “fire extinguisher” analogies at me as you wish. Not. Happening.
She said there was no rush on the biopsy, maybe in September because she’s on leave for three weeks coming up soonish. I said October would be better as I have some time off then unless it can be done on a Friday. (I can’t remember if this is one of those procedures they don’t like to do on Fridays in case there is a complication.)
I saw that by the time she finished her note that was accessible to me in myChart, she had already reached out to my local nephrologist and had left a message for the oncologist. Dang. She’s on it. The local nephrologist is in agreement and on board with her plan. I see him early October for a follow up anyway. I haven’t heard anything from the oncologist.
Wednesdays are stressful. I’m usually in one of two clinics an hour outside of Albuquerque. I see patients until noon, finish up the chart notes by 12:30, pack up all my gear, and head back into town. I have to stop back by my house to swap out cars, change clothes if I have time, and grab my insulated lunch bag with my iced booties and gloves in it. Today because my lab appointment was at 2:40 instead of the typical 2:10, I had a brief window of time to run by the office to put out some fires. Then off to the lab. I arrived at the front desk at exactly 2:40.
It’s my fault for this: I’m the one scheduling myself for these half-day clinics on Wednesdays. But we are just SO busy right now, I feel I don’t have a choice. Like I said, I would love to have my Wednesdays back.
Today I also had a video visit with the endocrinologist. Oy. That appointment was scheduled several months ago for 3:40 today. At a later date, today’s chemo appointment was scheduled for 2:50. No big deal, I’d just have the video visit while I was getting chemo. Time management, baby. But they were running behind at the cancer center. The waiting room was PACKED when I got there. That’s not typical. When I got back to the infusion area, it wasn’t as packed but it was also really busy.
(I’ll say again how much the nurses there work as a team. There’s no, “Hey, YOUR patient is beeping. Take care of it.” Whoever is free will go over and deal with whatever the issue is. It’s not unusual that I might have all the nurses perform various tasks on me in one visit: one takes vitals, one starts the IV, one comes back and runs the saline and drugs, one unhooks me, bandages me up, and sends me out the door. I really like that. Very efficient. They are all so good at their jobs. Everything just flows.)
My creatinine from last Friday was 1.67 but today it was 1.3. Probably lab variation. I still haven’t gone through and compared my creatinine levels from my “off weeks” to my “on weeks.” It’s on the list.
Anyway… I dutifully signed into the myChart app for the endocrinology video visit at 3:25, as I was told to do. Then my phone rang—from the endocrinologist’s office. It was the doctor’s nurse, who said a lot of the information I entered in my e-check in didn’t “transfer over.” When she said that, I remembered the same thing happened the last time too. What’s the dealio? Anyway, I had to give her a bunch of my vitals and resisted—RESISTED—saying that she could access all that in the Epic system they use. Instead I was nice and read them off to her. I mean, she couldn’t see I was rolling my eyes so it didn’t really happen, right? Okay. Off the phone with her and back in the electronic waiting room for the doc. Appointment time was 3:40. At this point it was about 3:35. Her nurse did say she was running “a little behind.”
3:45. No doc. 3:55. No doc. At this point, the oncology nurse told me that I’d be done in just a few more minutes. At around 4:00, I was unhooked, bandaged, and heading for the exit. Still no doc. Now what? Do I just give up? Do I get in the car and head home (about a 15 – 20-minute drive) and either hope I get home before she clicks on, OR carry on a video visit while driving? Seemed ill-advised. Plus I remembered I had to go to Walgreens to pick up prescriptions.
Instead I opted to just sit in the hall in the old St. Joe’s building and wait. Finally at 4:18, she clicked on. And I’m not kidding. I don’t think we talked for more than five minutes. I’d had lab work done for her a few days ago. She was pleased with my A1C at 6.2%, even though it was one-tenth of a percentage point higher than last time. (Lab variation! That’s what I’m going with.) She asked how my appetite and weight were. I said both were not where I would like them to be but that I haven’t been putting forth much effort. She said with Trulicity, it tends to suppress the appetite. Not for this girl! I’m powering through!
She said one thing we could consider is increasing the Trulicity dose, although she wasn’t saying it was necessary at this point, just an option. I said I would prefer to wait because of the recent changes I’ve had to my meds. I explained that I don’t like to change too many things at once because if something goes haywire with my kidney function, we’ll have a better idea of what the culprit is if we only have one or two med changes to consider. She understood my point but did say that Trulicity is safe for kidney patients. For now we’ll hold off on any changes.
She is reducing my thyroid med dosage. Even with taking only half a pill on Sundays, I’m still in a state of hyperthyroidism. The upside to hyperthyroidism is it can give a little boost to one’s energy. But it has lots of downsides, such as hair loss, nervousness, anxiety, sleep disturbances, etc. I can’t say I’m experiencing any of those at present, but no need to bring ‘em on. She said with the lower dose, I may feel a little more (say it with me here) FATIGUED. (Is there a point on the fatigue scale where you’re just dead? I mean, how tired can one get??) So I may have that to look forward to.
I’ll see her again in six months (or sooner if things go sideways) with repeat labs at that time.
(I’ll be honest. I am SO glad she didn’t ask me what my general blood sugar readings have been since I last saw her. I would have no idea since I cannot get into the habit of checking them. I’d say I’ll get better at that but that might be an out and out lie.)
I have saved the most interesting thing for almost last. The nephrologist in Pennsylvania asked me if I would agree to her writing a paper about my disease and this particular treatment with the Kyprolis. She said there is no research on Kyprolis (carfilzomib) and PGNMID. This I was not aware of. I knew there was limited research on Velcade (bortezomib) and therefore assumed there was something out there about Kyprolis, or I at least assumed they were sort of treated as one and the same. But nope. Her report will have an n of 1, but that 1 will be me! I said heck yeah! Get the word out! She assured me I would not be identifiable but I already knew that, and unless they put my full name and/or address (which, duh, they wouldn’t), count me in. So I’ll be “famous” in a completely anonymous and unidentifiable way! Exciting. Obviously it will be a while before the report is completed and published but I can’t wait to read it.
Oh, and I thought this was hilarious. She said, “Of course I’ll contact Dr. T [oncologist] to include him in the report.” Um, “include him”? He’s the one who created and implemented the regimen with this drug for me. Yes, please “include” him!! She doesn’t strike me as having a big ego or some need to steal his thunder. I think it’s just that she’s a practitioner/researcher and he’s a practitioner and not a researcher. But still, let’s give the man his due, hey?
My last note: I heard that a friend and longtime former colleague recently experienced a very serious health crisis that has the potential to affect him for the rest of his life. He is a reader of this blog and has been very supportive of me through this whole shebang. Obviously he and his wife have been on my mind, and of course I hope he makes a complete recovery. Sending you good vibes, friend.