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.


Anonymous said...

I've had a lot of people asking me (or my mother) if I am going to be involved in any clinical trials. So far, I've not felt comfortable going that route.

Are there any particular reasons that you guys are pursuing trials over some of the more standard treatments?

(I know, every cancer is different!)

All my best to you and yours.


Perpetual Beginner said...

Hi Lisa - glad you found your way over here.

There are a few reasons we're aiming for a PD-1 trial if we can get one.

Firstly, we're making a lot of our clinical decisions on the general principle of leaving as many future options open as possible. Participating in one of these trials won't mean he can't move to IL2 or TKI's at some point in the future, but once he's had another drug, several of these studies close to him.

Secondly, our local oncologist already uses PD-1 for bladder cancer, and is very interested and excited about it for renal cell carcinoma. I suspect it will be on his offered menu of treatments roughly 30 seconds after it gets FDA approval for RCC.

Thirdly, Rob tends to prefer more direct, more aggressive, and even yes, more experimental treatments. Probably something to do with the mentality that makes him an excellent engineer. It didn't take him more than a couple of days of reading up on PD-1 for him to decide it was what he wanted to try if he could, even without the numbers from the first trials.

Fourthly, and probably hardest to say how much it had with the decision, but we have some connection to the medical research field. My father has been an MS researcher and doctor for 50+ years, and I used to work in a neuropharmacology lab. This sort of research is something I've been around my whole life, and there's a distinct appeal in being able to potentially help other patients behind him, and make our lousy situation serve a larger cause, as it were.

And last but not least, we had been about ready to go for IL2 as our first line treatment, and frankly it scares the hell out of us. This was something else to try first that still left the IL2 open.