Wednesday, November 05, 2014

Coming up on belief

Way back around infusion #3 (we're coming up on #8), Dr. Puzanov told us not to believe anything the CT scans showed us until week 18. This was in context of the tumor showing rapid growth during the early stages of treatment. That kind of expansion is normal, and even a good sign, since if the drug is working, the immune system attacks the tumor, and the tumor becomes inflamed. It's still pretty darned alarming to see a tumor that had been chugging along at about 3% a month for growth expand by 26% in three weeks.

So at the last CT scan (at infusion #6, the 15 week mark), the tumor showed no growth at all over the six week period. This is definitely a good sign, and we were excited about it - but still in the back of my mind is that little comment "Don't believe anything you see until week 18."

Well, week 18 was two weeks ago, but didn't come with a CT. A week from Thursday is our next infusion with a CT, marking week 21. I've got all my fingers and toes crossed - please let this be real, please let us have an actual tumor freeze. There's more to hope for from there - shrinkage is always to be desired - but a freeze is the first and most important thing.

Also hoping that Rob hasn't developed an allergy to the CT contrast dye. He had an interesting rash about 24 hours after his last CT, and no contrast dye will make tumor tracking definitely harder.

Life otherwise cranks on. After missing an awful lot of school to nausea the first few weeks, we got Aaron under enough control to remove the threat of the truancy people coming after us. And I, in a not so stellar mother moment, let things lie there from then until this last week. Aaron was still feeling crappy most mornings, and spending time lying down in the nurses office at least a couple mornings a week, but he wasn't missing school.

Then on Wednesday, he was feeling his usual moderately crappy getting ready for school, and threw up once before we headed out the door - so we brought a bowl along. And sitting in line to drop him off, he threw up again just as I was pulling forward to the drop-off zone, and I couldn't do it. I told him "This is ridiculous.", and pulled out of line, and we went to the pediatrician instead. I feel awful that it took that direct a reminder that we hadn't fixed the problem, just the legal consequences of the problem, to get me back in gear.

So, we still have no real answers, but Aaron has a battery of blood tests being run, a visit to an ENT scheduled this week (his dentist is seeing signs of too much open mouth breathing, and suspects issues there may lead to mucous, and a hyper gag reflex), and a visit to a counselor scheduled for the week following, since stress and school are definitely a major factor in this. During vacations, the rate of morning nausea drops precipitously - it doesn't go away altogether, but it becomes unusual, rather than 2-3 times a week.

I suspect, based on the last 14 years, that Aaron has a series of things going on, rather than a singular cause. He's always had a sensitive stomach and a hyper gag reflex, right from birth. Add to that, Dad is pretty sure (and I concur) that he started having abdominal migraines about three years ago, a case of reflux, a large double-dose of stress (Rob's situation of course, and 8th grade is proving socially miserable, due to 8th grade boys being at their maximum level of asshole), and chronic insomnia (when lack of sleep will make all of the above worse), and you have an absolute recipe for misery. I'm hoping that if we chase several of these things, we may be able to crank down the physical response several notches.

Even if it means missing a little more school. After all, our last appointment with the family court for truancy issues turned out to be hilarious in retrospect. It was 3 years ago, when Aaron first started having morning nausea issues. They gave us an 8am court time, and Aaron helpfully demonstrated to the court why he was missing so much school by throwing up all over the courthouse. They really couldn't say too much after that. So we kind of got a mumbled "School is important. Try to get him there more often." and they sent us on our way, with no further action. It probably helps that his grades are consistently excellent, despite the missed classroom time. He just took his reading evaluation last month and topped the grade. Not just best for his class, best score they've ever had for an 8th grader.

Robbie is chugging along through 11th grade without much commentary from anyone. He's a great kid, and very smart, but we do wish he'd show a little something. Drive? Ambition? He seems very willing to meander gently along through life, enjoying his drawing without pushing to improve it particularly hard, and also without showing any real interest in anything else. It's a bit frustrating.

Saturday, August 02, 2014

Infusion #2

Things went much faster this time around, largely because this wasn't a set of appointments wedged into already full-up schedules less than 24 hours ahead of time. We checked in about 1:30, and Rob was called in for his first stop (blood draw) at just a smidge after 2:30, which was his actual appointment time. We got out of that, were called back for the appointment with Dr. Puzanov less than five minutes later, filled out the various forms they make Rob do every time. Spent some time with Dr. Puzanov going over the symptoms from last week, which he opines might actually have been a straight-up reaction to the MPDL drug, rather than an interaction of drug and virus. He also firmly agrees that the increase in tumor size is inflammation and a good sign. Actually much of his visit could be summarized as "Please, please, please don't panic and leave the study! It's fine, I promise!" Rob and I found this pretty funny, because we weren't even considering leaving the study as an option at this point.

After Puzanov it was time to go up to the infusion clinic. Again, things were much quicker this time, because we were part of the original schedule, rather than wedged in at at the last second. Infusion time is still an hour (plus 15 minutes either side for IV fussing), but we only had to wait an hour before they did the final blood draw and let us go this time. I was also able to run over to the hospital cafeteria and grab some food for both of us, since Rob had been fasting for the first blood draw, and I hadn't had much because it seemed cruel to be munching in front of him if he couldn't eat. The cafeteria is pretty decent as hospital cafeterias go, and actually had decent sushi in their refridgerator case (cooked sushi, I'm not that much of a daredevil!)

The whole thing finished about 7pm, and we were able to hit the road home in time to get home before midnight. The hour time change here to there is really nice in the morning when heading down, less so coming back home.

So far no side-effects once again. If last week is a repeating side effect, I guess we'll find out in nine days or so.

In other news, the kids have now had their first two days of school. Aaron is really liking his classes and teachers so far, and doesn't seem to share any classes with the kids who were pestering him last year (Yay!). Robbie has no complaints, but I've already gotten an e-mail from his math teacher about him sleeping in class. Their friend Samuel will be able to drop by tomorrow and play for the first time in over a year (he lives 2 hours away), so both of them are very excited for this weekend.

Saturday, July 26, 2014

That was the week that was

It was the last week before school starts again. It was also pretty much a dead loss. Rob caught a virus, and his hyped-up immune system decided to go full nuclear option. Fever, shakes, sweats, sore throat, swollen lymph nodes, inflamed spleen, throwing up - you name the symptom, he had it. This culminated in a nine hour day spent in the ER, because we couldn't keep the hydration up with the fluid loss. They put in 2 1/2 litres of fluid, which is probably the biggest reason for why he felt better, but while he was there they also ran him through a massive series of tests, because they really didn't want to think that this was just some random virus. So there was blood and urine analysis, a mono test, strep test, chest X-ray (in case of pneumonia), CT scan (in case his adrenal gland had ruptured), and then when they discovered his bilirubin was elevated (which made his urine an amazing shade of neon orange), a set of liver function tests.

The upshot of all this? He had a virus, his immune system freaked out, and then the dehydration spiral got him. They sent him home rehydrated with an anti-nausea pill and some pain-killers (after much back and forth with Vanderbilt about which drugs won't interfere with the trial protocol).

We did find out two interesting things though.

#1 - Rob has a benign condition called Gilbert's Syndrome. It apparently causes his liver to produce excess amounts of bilirubin when stressed (E.g. - when he has an infection and is dehydrated). It's otherwise harmless, but does make him a little yellow when he's sick, and occasionally scare ER workers.

#2 - The CT scan showed that in the three weeks since his last CT, the adrenal tumor has increased from 2.8cm to 3.3cm. The doctor at the ER was very unhappy about this, but when he called in Dr. Rez, our local oncologist, Dr. Rez was very nearly giddy with excitement (for his own personal levels of giddy - he's a really lovely person, but not exactly highly excitable). According to Dr. Rez, it is basically impossible that the tumor could have started growing that fast, which means the tumor is inflamed - which means that Rob's immune system has found it and started attacking it. He's quite adamant that it's the best possible sign, and that we should start seeing shrinkage within the next couple of months. (Please, please, please let him be right!)

Anyway at this point, Rob is feeling better, if still easily exhausted. The first day of school is Thursday, and Rob's next infusion is Wednesday, which gives us Monday and Tuesday to get all the school supplies, hair cuts, and generally get things ready to go for school. Gonna be a close one!

Friday, July 18, 2014

Where We Wait

I was going to call this post "Where We Stand", but honestly our lives are mostly waiting right now, so that seemed more apropos.

I had a grand time in Okinawa. Shimabuku-sensei and Tokumura-sensei both kicked my butt, if in somewhat metaphorical fashion. I learned a ton about bo, tekko and tetchu, had my front snap kick absolutely dissected, and generally had an awesome but exhausting time at the two dojo. My broken foot is definitely healed - Shimabuku-sensei opened each class with about 15 minutes of running laps of the dojo barefoot, and then followed that up with technique drills, including kicks to focus bags in batches of 50. So if there were anything still wrong with the foot, it would have showed.

In between the training portions of the trip, we visited the Budokan - a giant dojo/martial arts convention center, Shurijo (Shuri castle), Katsuranjo (Katsuran castle - in ruins), went to Kokusaidori, which is the main Okinawan shopping area and tried several different kinds of foods. Went to Shureido (martial arts equipment store) and bought a gi, dojo bag, and several other random items. Went out to Hamahiga Island. Stayed in a traditional Japanese-style hotel room, complete with tatami mats, futon for sleeping, low table with cushions instead of chairs, and a set of toilet/bathing rooms that has to be seen to be believed.

 Skype is awesome, as Rob and I were able to talk daily, and able to see each other any time he wasn't at work (the work data protocols muck with Skype's video).

My hard-won Japanese seems to be just enough to get me into trouble. Apparently, while my vocabulary and grammar are still limited, my pronunciation is excellent, leading people to think I speak and understand much more than I do. And since disclaiming any ability is only polite in Japan, no matter how good you are, me saying "No, no! I'm still very bad." is just taken as proper modesty. So people kept exchanging a couple of sentences with me, and then launching in to full-on, full-speed Japanese, and being surprised when I would get lost half a sentence in.

I'll probably say more about the Okinawa trip in later posts as things occur to me, but for now, onto the Rob update.

It took a while to finalize everything, but as of last week, Rob is officially in the Vanderbilt study on MPDL3280A/Bevacizumab. He's in the study cohort that receives the PDL-1 drug by itself, rather than the combined medications, which is right where we were hoping he would land. He had the first dose a week ago, and will continue to get doses every third week for the next year, provided the cancer responds in some positive way. If it doesn't then he'll be moved into the dual drug cohort, and if that still doesn't work, it's out of the study and on to conventional treatments.

In unhappy news, the CT scan they did to finalize his acceptance into the study - the first we've had since March 10, when we first found the tumors - showed about 30% growth in the right adrenal tumor. There are still no other metastases showing, which is good, but 30% over four months is a lot more aggressive than we were hoping for.

The actual first infusion was fine, though I hope future visits are a little more smoothly planned out. This time we didn't get our go ahead and appointment time until less than twelve hours before we had to leave to get there. Then once we did get there, there was a lot of waiting around between portions, because he'd been wedged in at the last second. Entirely understandable under the circumstances, but I hope it gets more predictable when they have more lead time.

The day started out with drawing 18 vials of blood for the baseline blood work. Rob seems to have excellent blood chemistry, with the only complaint being that he's mildly anemic - which the 18 vials of blood is hardly going to help, unfortunately. From there we went to the intake interview and final signings of papers - which included the study nurse having to chase the doctor around room to room trying to find him so he could sign the last bit of permission. While she did this, Rob filled out the various "How are you feeling today?" forms, which he'll have to do with each visit, and then we were off to the infusion.

The infusion takes about 90 minutes all-told, with about an hour of the drug running, plus set-up time and time at the end. Then we have to hang around for another two hours, while the nurses stop by and check things like pulse and blood pressure every 20 minutes or so. Fortunately, he's allowed to eat and snacks are available, and we're never short on reading material. After the infusion they draw another two vials to check for drug levels in his blood, and then after the 2 hours are up, we're allowed to go. This first time, we finished right at five, so we went out to dinner first rather than fight Nashville traffic running north (one advantage to having lived in Nashville before, we know when and where traffic is likely to be bad).

Future visits, we can skip the intake interview and chasing around for signatures, plus they will apparently gradually increase the rate of the infusion if he tolerates it well (which he did this first time), so we should be able to get through the whole process a little faster. With any luck, we should be able to see the kids off to school, hit the road, make Vanderbilt by about 11am, and be home again by about 10pm. A long day, but manageable.

Oh - and the next infusion date is also the first day of school - so I really hope they can schedule us in such that we can get the kids off to their respective buses. It would really suck to have to leave the boys to see themselves off for the first day of school. Bad enough that we'll be coming home just about in time to say "Good night".

No noticeable drug side effects thus far. Rob was pretty tired the next day, but not in any way that was distinguishable from the normal tired you'd expect from driving six hours and having seven hours of hospital time in one day. The only day-to-day discomfort he's having at this point is a chronic upper-backache, which seems to be nothing directly cancer related, but rather a combination of his horrible posture, and a tendency to have tension backaches rather than tension headaches. So far we're keeping it down to a dull roar with Tylenol, massage, and Tiger's Balm.

And now we wait. We have another infusion in two weeks, and then a repeat CT scan the visit after that. Until then, all we can do is be as healthy as we can, and hope that all of this is doing some good.

Sunday, June 08, 2014

Want/Don't Want

I leave for Okinawa in the morning.

I've dreamed about this trip for literally years. I've worked on my Japanese, worked on my karate, spent lot of time, money, and energy to even be able to go on this trip. I'm not likely to get the opportunity again, and I don't want to miss it.

But now I'm terribly torn about going.

I know it will be all right. There isn't anything major medical happening for Rob in the next 12 days. He has one CT scan, and some papers to sign - that's it. We have Skype, so we'll be keeping in close touch. He wants me to go - has insisted repeatedly that I not cancel out. And yet, I don't want to go away - to walk off and leave him right now.

I guess, since I am going, that I had better get everything out of this trip I can. Bad enough to go right now, worse to leave and have a bad trip because I can't get my head to come with me. To both miss the point of the trip, and be apart from Rob would be a crying shame.

Deep breath. I'll post when I'm home again. See you all June 20th.

Friday, June 06, 2014

I Pronounce It "Eye-gore"

Well, not actually. The doctor's name down in Vanderbilt is Igor, pronounced the usual way. We're still getting a kick out of Rob potentially getting experimented on by an Igor, though.

The trip to Vandy was very good for our psyches. Firstly, Rob has been declared an excellent candidate for the trial. He needs to get a new CT scan, but unless it shows regression, he's in. If he does show regression, we don't want to mess with it anyway. Igor (actually Dr. Puzanov, but it's too much fun calling him Igor) was very informative, and was able to reassure us on what would happen if he ended up in the control group, and how they dealt with patients who weren't responding well to the treatment.

The trial has three branches: One gets the trial drug (MPDL4280A, or PD-1 for shorthand) alone. One gets PD-1 combined with bevacizumab, which is a TKI, or anti-angiogenic drug. One gets Sutent alone - which is the most commonly used of the TKIs in current therapy. Or in other words, branches A&B are the experimental groups, and C is the control. Thankfully these days cancer trials are run vs. the standard of care, rather than vs. a placebo.

Additionally, if the patient doesn't respond to the Sutent, they can be moved into the A group, since at that point they would be stopping Sutent therapy under the standard of care anyway. As to another concern of ours - that TKI therapy can inhibit later IL2 therapy by causing heart toxicity, Dr. P said that they had noted that, and had developed an in-house protocol for doing IL2 specifically for patients coming off of TKIs that has been working well for them.

So we came home with a pile of paperwork for Rob to read through and sign, and he should be getting his repeat CT within the next week or so. Entry into the trial won't be before I get back from Okinawa at the earliest.

The other exciting bit of news was from Dr. R - our local guy. He spent the weekend at the ASOCO annual meeting, and went to the presentation of results from the first trials of PD-1. Results are incredibly promising - 26% of patients with durable remission. Keep in mind, the durable remission numbers for IL2 are something like 4%, with another 15-20% getting a durable partial remission. PD-1 trials for melanoma were also presented, and apparently it's the first drug to show real life extension with advanced melanoma cases. He thinks that with numbers like those, it should be FDA approved for renal cell carcinoma and melanoma before the end of 2015. Knowing the FDA, I'm a little more dubious, but since it's already approved for some other cancers, it's possible.

In other random good bits, Dr. P commented that Rob's expected untreated lifespan wasn't "average of three years", which had been told to us a couple of times as the usual for stage IV RCC, but that given his blood markers and the nature of the spread, he would say "minimum of three years" if untreated. Which sounds a heck of a lot better to us. Particularly the "if untreated" part, since we're hardly going to leave this untreated. Not as good as "durable remission", but still a more upbeat take.

Three days to Okinawa! Packing! Last day of school! - busy, busy the rest of the week.

Monday, June 02, 2014

Plans for the week

Today is/was Rob's first full day back at work. He's not quite at the end of the day yet, but seems to be chugging along with no more complaint than a slight tension headache. Go Rob!

Tomorrow is also work, but he'll be cutting out a little early for his next appointment with the urologist. We don't expect any new information from this one, just a recheck to make sure everything is continuing to heal post-surgically. Also, Dr. P is supposed to be asking his friends at NIH about any other interesting studies being done with RCC in case the ones we're already pursuing don't pan out.

Wednesday we head out for Vanderbilt so they can evaluate Rob. We've gone back and forth with them a couple of times on this, where we thought we weren't going, because the study was closed, but then they called back and said we should come ahead. So we're less confident than before about Rob getting into the study, but it's apparently still possible. Dr. Rez is also looking into University of Chicago, as there is apparently another study recruiting patients there.

The more common name for the study drug we're looking at here appears to be PD-1 or PDL-1, rather than PLN1 - I'm not sure if that's me mishearing Dr. Rez, or an alternate name for the drug. The ASCO meeting presentation on it was supposed to be today. I'm hoping that one or another of the doctors we'll be seeing this week can tell us something of those results.

This is also the boys' last week of school (at least until they start up again on July 31 -short summer). They'll be on their own a lot next week, since Rob will be back at work, and I'll be in Okinawa, but the week after their Uncle Doug is coming (Thanks Doug!), which should help a lot. Fortunately at 15 and 13, they're capable of looking out for themselves during the day pretty well. They're both reacting to Rob's cancer in their own way - Robbie in the very helpful mode of suddenly taking his homework and responsibilities much more seriously. Actually, it's so helpful that I have to keep reminding myself that it is a stress response, and I need to give him attention and support too. Aaron seems to be reacting through his digestion, as always. He's been having a lot of morning nausea and vomiting, and then this morning, when it seemed like we had that under some control, he started having esophageal spasms - basically nasty cramping chest pains that would double him over. Fortunately they're basically benign - really uncomfortable but nothing that's doing harm. Suggested treatment from the pediatrician was ibuprofen and either cold or warm drinks - whichever better soothed the spasms down (cold seems to be doing the trick, so Brazilian frozen limeade has been most of his calorie consumption today, as solid food doesn't go down well unless really thoroughly chewed to a pulp).

For the curious: 5 T lime juice, 5 T sugar, 1 c. light coconut milk, 2 c. crushed ice: stick in a blender until smooth - serves 2.

Also this week, I need to set up stuff for Art on the Parish Green, which will happen while I'm gone. Rob will be manning the booth, so I need to set up everything I can ahead of time. Plus packing, getting some Yen, and all the other stuff that goes along with an overseas trip. Busy, busy week.