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I’m a cocky mother fucker. With my champagne chilled and ready to uncork. With my celebratory blogpost, not typed yet, but certainly drafted in my head. With every second of my month tied up with things completely unrelated to cancer.
A cocky mother fucker.
Let me start by saying that ultrasound imaging sucks. It’s simply no good. Blurry and blotchy and confusing to read. Yet that’s what we’ve been relying on for the past two years because it has no risks associated with it: no radiation exposure, no further damage to the already damaged kidney. So, today, on the ultrasound, it appears that something’s there. Something that wasn’t there before.
We’re not sure — of course. We’ll need to schedule additional testing. First a GFR, to see where his kidney function is so we can determine which test to do next. Assuming his GFR is above 30 (and his nephrologist estimates it’s at least 60), then he’s “well” enough to be able to have an MRI or CT with contrast (oh, the irony). Either of those ought to let us know if this thing is nothing or if it’s something.
But let’s be real here. It’s always something. Every fucking time this happens, we invent a thousand scenarios to explain why it might be nothing. We imagine every possible rare or random “nothing” it might be. But it’s never nothing. Every fucking time, it’s always something and the something it turns out to be every fucking time is CANCER.
It’s always something.
… one to go.
All went well today, except that everything took way longer than expected. But Austin was a trooper — it is so much easier to wile away half a day in waiting rooms at this age than it was when he was a baby!
His chest CT came back clear — no sign of any cancer in his lungs. His abdominal ultrasound remains unchanged, which means that unidentified spot we’ve been watching in his liver for almost a year has not grown or changed in any way, but is still there. It’s tricky because ultrasound doesn’t produce a perfectly clear image and the spot appears only when looking from certain angles but not others (as has been the case since we first noticed it). The radiologist said he highly doubts that it’s anything worth worrying about but would prefer to use an MRI or abdominal CT for a better look.
I discussed this possibility with Austin’s oncologist, because it would first require a repeat GFR to determine if Austin’s kidney can even handle an MRI or CT with contrast. We decided that, while a GFR might give us some comfort regarding his kidney (we haven’t had one since last May and I would love to see a number considerably better than 27), the day long procedure is difficult to do without a central line and, even if it was high enough to allow further testing, we’d then have to weigh the pros and cons of MRIs versus CTs, and then if we chose one over the other and were actually able to get a better look at this little blob, that still wouldn’t tell us definitively what it was, and then we’d have to decide if it was worth attempting a needle biopsy, which would be extremely difficult because this spot is only one centimeter in diameter and we’re obviously not going to do a surgical biopsy and then, and then, and then.
In truth, the potential information we could get by doing an MRI or CT isn’t really worth much. Even our oncologist said that doctors just like more information for the sake of information: “We want to know everything we can know.” And, “The radiologist is an image guy so he wants better images.” Needless to say, we decided to leave this little thing alone until there’s reason to worry about it.
His labs also came back good — creatinine its same steady low and CBC numbers all in safe ranges.
Numbers and medical jargon aside, all you really need to know is that we have made it one year cancer-free. Dr. Auletta said that 80% of Wilms tumor relapses occur within 18 months of stopping treatment. (That does not mean that 80% of children with Wilms tumor relapse! Just that if they do, it happens within the first 18 months.) So, six months from now, his chances of relapse go down significantly. And six months after that, we are almost free and clear.
The other piece of good news from today is that we learned that Austin is allowed to take Claritin. I know this may sound silly next to discussions of potentially cancerous spots on livers and all, but he has been miserable lately due to his seasonal allergies. Puffy eyes, sniffly nose, constant sneezing. I had always thought he shouldn’t take allergy medicines because they’re filtered through the kidney, but I was happily mistaken.
So as we were walking down the hallway back to the parking garage after nearly six hours at the hospital, Austin skipping along beside me, I said, “Honey, all your tests were good today. We can’t see any cancer in your body.”
He looked up at me and said, “And no more sniffles?”
I guess if that’s his greatest worry, we’re in a pretty good place.
As we near the one year mark since the end of Austin’s cancer treatment, he has a series of appointments, scans and lab work scheduled. Today was a visit with his kidney doctor, our first exclusively with her since early last summer.
All in all, he’s doing very well and is perfectly positioned in the fiftieth percentile for both height and weight. This is a really good sign since kidney disease can negatively impact growth and I was getting a bit worried that he hadn’t been gaining enough weight. Turns out he has stretched from his once chubby short self to a new long lean self (sounds nice, doesn’t it?).
We reviewed his blood pressure medicines and decided to take him off one in favor of another. I’m pleased about this because the one he’ll soon stop is a diuretic, making my four-and-a-half-year old very dependent on nighttime diapers. He pees like crazy between dinner (when he takes that particular med) and midnight, often leaking through his diaper . . . and sometimes leaking through two diapers! Mark and I have considered this as a minor and manageable side effect (I mean, really, if washing his sheets every other day is my biggest worry, I can’t complain much), but Austin himself has been increasingly concerned about needing a diaper. In fact, when he went to his cousin’s eighth birthday sleepover, with boys much bigger than him, he told me ahead of time that he was going to change in a different room so “nobody would see.” Of course, as a parent, making sure your child feels that he belongs and won’t be made fun of is of utmost importance, so I’m eager to try this new route.
She ordered a bunch of labs — the renal panel we usually get, plus some measures of bone density and vitamin health — but we won’t get them done until his next blood draw in a month, so there are no new numbers from today. She did say that based on his recent creatinine levels, his kidney function is around 50% (as estimated GFR of 53). Not bad considering it was below 30% last spring and summer. Of course, there’s no way to know if the kidney will continue to function this well or if we’re in something of a honeymoon phase, but we’ve learned to take what we can get. If it’s the same at the golden two-year mark (when, from an oncological perspective, he would be eligible for transplant), we would not transplant him. Transplants aren’t allowed, or covered by insurance, unless a patient’s kidney function is below 20%. So, hopefully (always, always, everything is tempered by hope), we have a ways to go yet before that step.
Another day, week, month, another appointment, scan, test . . . we have our Austin, he has his kidney, and all is good.
Well, now, that puts us between a rock and a hard place, doesn’t it?
Yesterday, I briefly mentioned today’s GFR and its “enormously consequential” results. Perhaps that got lost in my (self) motivational running analogy, but here’s the deal: Austin had another GFR today, the kidney function test we’ve been using to dose-adjust his chemo. As you may remember, his last results were a pretty dismal 34. If it dips below 15, he will begin thrice-weekly hemo-dialysis. This will necessitate another surgery, almost immediately, to place a dialysis catheter in his right sub-clavicle vein. It may also necessitate the removal of his remaining kidney.
Usually, when someone has chronic kidney disease and their kidney(s) fails, that non-working organ is just left inside them to shrink and wither away. In Austin’s case, because his kidney is the point of origin for all his cancer, we obviously don’t want to let it just sit in there if it’s not doing us any good. However, there is a possibility that he could regain some kidney function once the stress of chemo is removed. Sooooooo, you can see that we might find ourselves in another sticky dilemma: Do we keep a non-functioning potentially cancerous kidney inside his body in the hopes that it might work again in a few months or do we cut our losses and just remove the damn thing?
Ugh, not fun choices.
The other possible outcome from today’s test (results of which should come sometime tomorrow) is that he falls somewhere between 15 and 30, which means his kidney is still chugging along and would still work in the “outside world,” but that it’s not strong enough to filter out the chemo we’re about to pump through his bloodstream. Hmmmm, then what to do? Forgo chemo — and risk yet another relapse — or jump in and speed up something we hope never happens?
Again, not fun choices.
There may be a chance to do temporary dialysis just on the days he receives chemo, although that’s not standard protocol and not strongly recommended by the oncologists. They think we should stop trying to delay the inevitable and just get rid of it. We’re not ready to do that yet. I strongly believe that he and his body (and his family) need a break, more than two days away from the hospital at a time. And as long as that doesn’t cause obvious harm, we should do all we can to give him that. When does the risk outweigh the benefit? Can we ever really know? God, haven’t we been having this same conversation for the past six months?
Of the many possible results from today, there is only one that is any good: that his GFR has stayed the same, a nice steady number in the low 30s. Not great, but certainly good enough. It may not be the most realistic outcome, but at least we have something to wish for.
On July 31, 2007, our very first night on the pediatric oncology floor, our pediatrician came to visit with me and Mark to help prepare us for what lay ahead. He described the journey we were about to embark on as a marathon, one we had not trained for (except that we’d been training since the moment we became parents), one we didn’t sign up for, but one we had to run nonetheless.
I know a thing or two about running, having completed four full marathons and countless half marathons, including Cleveland’s half this morning. I know that no matter how well-trained you are, there is always something beyond your control, some seemingly small sore spot that can cripple your run. I know that no matter who you train with or start out with or chat with along the way, the race is yours alone and no one else can take a single step for you. I know that you have moments when you feel completely unprepared, cowed by the hill in front of you or the almost endless stretch of road still to come, when you wonder what you got yourself into and how you’ll ever get yourself out of it. And I know you have moments when you feel strong, on a slight downhill, wind at your back, like you can fly, like you can do anything.
Without question, this cancer journey has been our marathon. There’ve been twists and turns we never anticipated, there have been steady even stretches where we get into such a groove we almost forget what we’re up against. There’ve been steep uphills where continuing seemed impossible and bursts of speed to push us forward. And there’ve been fans.
Race fans may not know their impact (and judging by today’s strangely quiet crowds, they may not know how much they’re needed). But fans are a completely necessary component of a long race. Perfect strangers calling out your name and urging you onward, giving you strength and hope and courage, make a huge difference. As do the “fans” we’ve acquired along this journey. You may at times watch silently from the sidelines but we see you there and we know that when you’re really needed, you’ll speak up and cheer us on, reminding us of the strength we already have inside.
This race of ours is certainly not over. We’re due for five days of chemo starting this Thursday, pending the enormously consequential results of tomorrow’s GFR (kidney function test). And then three more rounds of chemo after that, with an estimated finish in early August. We’re more than halfway, which is a huge accomplishment, but just like in full marathons, that last half is always harder than you think.
We’re a little beat down, muscles sore and tired from overuse, chasing an ever-moving finish line. But we’ve been training for years now and we’ve learned an awful lot, and oh I do love to run, so we set our sights a little farther down the road and we dig a little deeper and we let the cheers of our fans lift us forward. And we know that we will finish strong.
Oh, and in case you’re wondering: 1h52m. Strong enough.
Austin’s GFR results were 34. Right . . . no typo there: 34. Almost as bad as the result last month that necessitated a retest. And not nearly the still-not-fabulous-but-definitely-acceptable 66.
Here’s what this means in the world of kidneys: He can still get this next chemo, which is scheduled to start on Thursday, but it needs to be further dose-modified. If his GFR dips below 30, which we assume it will next month, he either has to stop this particular drug or (maybe — this hasn’t been confirmed yet by his docs but it makes sense to me) get dialyzed after each dose. We’ve already explored the possibility of doing only two of the three drugs in his protocol but have been told that their effectiveness lies in the specific combination and leaving one out would render any of them much less useful. So it’s sort of an all-or-nothing thing: either we stop chemo altogether or we continue and add dialysis to the mix.
For someone who doesn’t have cancer but suffers from regular old kidney disease, a GFR of 30 makes them eligible for transplant. Austin, of course, won’t be eligible for transplant until two years after the end of treatment (not two years after March 30’s clear scans, as I had hoped). And a GFR of 15 means thrice-weekly dialysis.
The path ahead seems a bit inevitable right now. I suppose the descent could slow or stop and we could hover here with a GFR of 34 for weeks or months or years, but we’re not holding our breath for that one. There are many many discussions to be held with our doctors when we’re in-patient this week; many questions to ask and answer; many scenarios to play out.
But no matter what we end up with, no matter which thorny path emerges from the forest, we will walk it.
Okay. That just about covers it: okay. It’s not fantastic like it was in January. And it’s definitely not horrible like the score from last Thursday. It’s okay. And that’s good enough.
I’ll give you the hard numbers, so you can make some sense of this roller coaster we’re forced to ride each day. Austin’s first GFR score following his December surgery was 83. Then it rose to 99 in January. Last week’s results? 30. Yeah, 30. Today it was 66.
This is pretty much what we expected. I would have been disappointed if 66 was what we were told after last week’s test. It’s not great; it proves that we are indeed harming that kidney with chemo and radiation. But after what we thought we might be up against with a 30 (removing the kidney, starting a long two years of dialysis), 66 is good enough. It’s all relative after all.
We can continue with in-patient chemo as planned this Thursday, Friday and Saturday. The dose will have to be adjusted, as this particular drug is the hardest on the kidney. But we can carry on, at least through April, to the end of our scheduled 18 weeks.
And then? Well, and then we’ll have to sit down with our doctors and look long and hard at the benefits versus the risks of adding another 12-week round. We’ll have to make those awful decisions again, trying to peer into a cloudy crystal ball and predict whether more chemo will do more good or more harm, whether the cancer is gone or just in hiding, at what cost the kidney is worth saving, at what cost the cancer is worth attacking.
Not really looking forward to that. But for today, it’s good enough.
I know that this stuff can be confusing. And of course scary. And sometimes being scary makes it more confusing or being confusing makes it more scary, so let me give you a little more information.
This test, the GFR (glomerular filtration rate, words you can quickly forget) or nuclear scan, is one of the best measures of kidney function. Better than, say, the weekly blood tests of Austin’s creatinine level. And it’s a test that he must have prior to getting the particular chemo he’s scheduled for this weekend. So he’s had this test twice before and, as I mentioned yesterday, we were pleasantly surprised with the results both times.
This time we were expecting it to be a little worse. A little worse. We have put that kidney under major stress after all, with both radiation and twelve weeks of chemo. And there have been red flags in the past weeks: his blood pressure medication has quadrupled since December, he’s been spilling small amounts of blood and protein into his pee. So we’ve been realistic, aware that the aggressive nature of this treatment will not doubt put the kidney at risk.
But — and this is a big but — he still is not showing signs of being in kidney failure. He’s peeing regularly, he’s not at all puffy or lethargic. And there are other valid explanations for the blood in his pee, most notably the blood thinner he was taking twice daily for that clot (the dreaded shot which has thankfully been discontinued since the clot has thankfully cleared) and the Heparin he has flushed in his PICC line three times a day (also a blood thinner). Plus the acute trauma of the chemo itself, all of which is flushed out through the kidneys. I mean, kidney.
So, there are excuses for these other bad signs. (Can you see who I’m trying to convince here?) And, importantly, his creatinine (a measure of kidney function we’ve been watching for years) has remained relatively steady. It did go up from its pre-chemo baseline, but hit a plateau still within the normal range.
And mistakes happen in medicine. All the time, unfortunately. One tiny thing goes awry and the whole test is rendered irrelevant. The man I spoke with today to reschedule the test said that they’ve ordered new contrast from California in case there was something wrong with their current batch. And he said this “happens sometimes.”
So, we’re still hopeful. I mean, my mind has definitely started to go down those roads, so well-traveled in October and November, of save-the-kidney versus attack-the-cancer. But we’re hopeful. The test will be done tomorrow and we should have results by evening or Wednesday morning at the latest.
Until then, we hope. And after that, we deal. As always.
After last week’s emotional high, we’ve begun that speedy descent downward. Well, no, that’s not true, we haven’t begun it yet. It’s more like we’re perched at the top of the roller coaster, having slowly crept up with the creak creak creak of the wheels and are now poised at the top, awaiting the plunge. Only this plunge is not for fun.
Last Thursday, Austin had another of those major kidney function tests, a GFR, where they take a series of blood draws over the course of the day to see just how well the kidney can filter out the test-fluid they first inject into his blood stream. This is the one (also called a “nuclear scan”) that we were so pleased was normal back in December following the kidney-sparing surgery and then were even more pleased in January when it was even more normal. Well, his result on Thursday was so far from that, so totally not normal, that they think there was some sort of “interference.” I have no idea what might have interfered with the results, but I hope something did because if that score is correct, the kidney is pretty much done for. As in just-go-ahead -and-remove-the-damn-thing-now-so-we-can-finish-chemo done for.
Not panicking yet. Worrying? Yes. But not panicking. He doesn’t appear to be in kidney failure, for what that’s worth. I mean, I think we’d notice something. His weekly lab results are fine, he’s not puffy, still peeing, the whole bit. So we wait for the repeat test, which will happen on Tuesday, and take it from there.
Perched at the top of that roller coaster, not sure when we’ll fall.