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.

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.