Hello! It’s been a while! I feel like a fair amount of things have happened over this past month, although nothing earth-shattering or treatment-changing.
I got the results of my mammogram—negative for any concerns. That was good news of course. It’s not something I dwell on (honestly, I don’t dwell on much), but of course with my mother’s history of breast cancer, when it’s time for a mammogram, I do think, “What if?” But … cleared for a year, or maybe six months if I can remember to talk to my PCP about more frequent mammograms given my gene testing.
I mentioned before about how at the entrance to the building that houses the cancer clinic, they had changed their screening protocol within two days. The last time I went there, no (human) screener, but there was a QR code we were supposed to scan to answer the typical COVID screening questions. Nice idea, I guess? I don’t know. Didn’t matter since it didn’t work. For me or the two people behind me. Oh well. After walking 50 feet into the cancer clinic, they asked me the same questions anyway.
Over the last month, my creatinine has been up and down. Obviously there will be variations, but I was encouraged when it dropped down to 1.3 after it had been around 1.5/1.6 for the few previous weeks. But then the following week it jumped back up to 1.7. That was a week ago yesterday. Then this past Saturday I had to have more bloodwork done, and it had dropped to 1.37. That seems like a pretty big change in three days. My eGFR has fluctuated between a low of 31 and a high of 44 over the past month. So… the lesson is I need to try to not get discouraged when the numbers trend in the wrong direction for a week or three. First of all, there’s nothing I can do about it, and secondly, things are just going to fluctuate from day to day and from lab to lab. I have to remind myself of this at times, but it’s easier said than done.
Last Wednesday, I asked one of the nurses about some of the side effects of Kyprolis. During that conversation, she said I’m the only one there getting Kyprolis. That surprised me. Maybe they don’t have others there with multiple myeloma at this time? Or if they do, they’re on different medications? She did say that if it stops working, there are other medications available. It dawned on me then that she probably thinks I have multiple myeloma (and not this funky kidney disease) simply based on the medication I’m taking. I didn’t ask her if that was the case. They are so busy; there’s really no need for her to know my exact condition as long as I get the right meds.
The side effect of the Kyprolis I was questioning was swollen gums. I have two spots in my mouth where my gums are swollen. You know how sometimes if you’ve flossed too vigorously, your gums will be sensitive and swollen for a bit? It’s like that. But no pain at all. “Bleeding gums” is listed as a side effect of Kyprolis, but I’m not having that issue. My oral hygiene hasn’t changed but the swelling has been present for at least a few months. I had a dental appointment earlier this month. They did x-rays, and the hygienist as well as the dentist poked around in those two areas quite a bit but no sign of infection and nothing abnormal on the x-rays. The dentist said there’s nothing to be done about it, and he suspects maybe it is due to the meds, although he wasn’t at all familiar with Kyprolis (no reason he would be).
Last week I had a consultation with the gastroenterologist for the colonoscopy. It was completely different than the previous consult I had. Both were at Lovelace, but the first one was at Women’s Hospital, and this one was at the medical towers at the downtown Lovelace location. The first time, I met with a nurse who asked me some questions, and that was about it. This time, I met with the actual doctor who will be doing the procedure. He asked a lot of questions, did a quick exam, and we discussed the prep methods. I was thrilled that I was able to talk him into prescribing me tablets instead of drinking that god-awful stuff.
Listen, I’ll admit right up front I’m a super big baby when it comes to the idea of drinking that nasty stuff. I already know I would throw it up. I have some serious texture issues. I can’t eat melted ice cream or drink stuff like Orange Juliuses so I sure as hell can’t choke down that crap. I’ve psyched myself out about it. Luckily, I had done my research. There are LOTS of options now—lots of low volume prep stuff. But I happened to read about these pills, and I was all in. AND… bonus, they’re actually safer for kidney patients. The doc rattled off a few different options, and I just kept saying, “But what about the pills?” He relented.
The assistant who got me scheduled for the procedure didn’t have the instructions for the pills (Sutab, if you’re interested) so apparently she will email them to me. I tried to get the colonoscopy scheduled for a Thursday per the oncologist’s recommendation so I could get some extra fluids during my chemo treatment the day before, but no Thursdays available. Instead it’s scheduled for Friday, June 3rd.
(The Sutabs, by the way, are not covered by my insurance, but I found a coupon on their website that brought the price down from $70.00 to $40.00. Trust me, I would have happily paid $70.00, but $40.00 was even better.)
I had an appointment with Dr. T, the oncologist, Wednesday. In anticipation of that, two weeks ago I turned in another giant jug o’pee for my 24-hour urine collection. Unfortunately, the amount of protein had increased instead of continuing its trend of dropping. However, I noticed after the results were posted in myChart that the volumes on the previous test and on this test were exactly the same: 2300 ml. What are the odds that I would pee the exact same amount over a 24-hour period two tests in a row?? Slim to none. When I pointed that out to the doc on Wednesday, he too was suspicious. He’s going to order another one sooner than later, and this time I’ll note the volume myself. Seems odd I’d have to, but it’s important to have an accurate result.
We discussed the fluctuations in the creatinine, and I mentioned that the Kyprolis itself could be causing that. (Oh, the thought just occurred to me that I should pay more attention to what the creatinine is after my off week to see if it’s a little lower. Hmm.) We also talked about the continuing fatigue. The Kyprolis can cause that as well, plus the fact that I’m still anemic. And I have a time-intensive job. Nope, I’m not out digging ditches but most days I work a minimum of 12 hours (except my Wednesday chemo days). I was talking with Kyle the other day about all the side effects of this disease and the treatment (whining as usual), and the fatigue is definitely the worst. Even after all this time, I’m still not used to being constantly tired.
Doc and I also talked about the colonoscopy. I asked if I should get scheduled to come in the Thursday before for fluids, but he said they can just move my entire chemo day to Thursday so I don’t have to come in two days in a row. Cool! I’m off work that week so that be nice not have to go there twice. Colonoscopy on my week off—I know how to live it up.
He also put in a referral for me to see a podiatrist. The sharp-shooting neuropathy is loads better but my feet just ache all the time. It doesn’t matter which shoes I wear. My faves that NEVER hurt my feet before all this kill me know. I’ll see if the podiatrist has any insight for me.
A very cool thing is that for the past three weeks, I have not had any heartburn!! The first of those three weeks was my “off” week, and I don’t typically have heartburn then anyway. But the following two weeks were my regular chemo days, and NONE! I was soooo happy. I don’t know if this will continue or if it was just a nice break, but I’ll take it. A full night’s sleep on a Wednesday… what a damn treat.
Kidneys in the news!
I have lots of alerts set up for articles that address my specific kidney disease. It goes by a lot of different names: Proliferative glomerulonephritis with monoclonal igG3 kappa deposits (abbreviated as PGNMID), monoclonal gammopathy of renal significance, and at least one more I can’t recall at the moment. I’ve been getting more alerts lately. Maybe it’s becoming more well-known since there were more cases brought on by COVID? Or maybe the research is just coming to light now? Who knows.
There was a very recent article (within the past few days) published about treatment for PGNMID with bortezomib. (Bortezomib is Velcade, which is the second chemo drug I was on until it was stopped due to the neuropathy.) In this particular case, it was to treat a person who had recurrent PGNMID after a kidney transplant. I mean, wouldn’t that suck? You go through all the trauma and recovery of a kidney transplant only to have this stupid disease come back. From what I read (and barely understood), the disease recurs due to “impaired eradication of small B-cell clones.” B-cells are a type of white blood cell that makes antibodies, and they originate in the bone marrow. It seems that even with the new kidney, the B-cells are still hanging around causing issues, one of which is recurrence of this disease. Again… that sucks. But this article stated the that use of bortezomib reduced the protein in the urine by more than 50%, at least in the one subject they studied. It also said using bortezomib may delay the progression of PGNMID in kidney transplant patients. This is a different study, but a similar outcome, from the one Dr. T directed me to a while back, and what led him to the starting me on Velcade to begin with.
Another article I read stated that there may soon be a new treatment for anemia caused by kidney disease. Currently the treatment is the shot I get when needed, which is to stimulate the bone marrow to produce more red blood cells. There may soon be an alternative in the form of a pill called daprodustat. Studies so far have shown a comparable increase in the hemoglobin and—I love how they word this—daprodustat was “non-inferior” when compared to the erythropoietin-stimulating shots in causing major cardiovascular events. Both dialysis and non-dialysis patients were tested. This would be quite a bit more convenient because it would eliminate the need to go to the clinic every two weeks or whatever to be administered a shot. It does appear that the hemoglobin still has to be fairly low before starting this drug—but how would they know what the hemoglobin level is without lab work? Hmm. Details. The drug is already being used in Japan and has been submitted to the FDA for approval. It will render its verdict in February 2023. Oh—and it’s already been added to the list of banned substances in sports. They don’t waste any time.