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.
Sunday, June 08, 2014
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.
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.
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.
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