Monday, December 27, 2010
Time for a new drug?
I was at a seminar a week or so ago about reversing the tolerance (the drug loses effect over time) to chemo drugs. It was about non-small cell lung cancer, but I was intrigued. I did a little PubMed (google for scientific articles) research. Briefly, a class of drugs called histone deacetlylase inhibitors (HDAC inhibitors or HDIs) can reverse the tolerance to receptor tyrosine kinase inhibitors (TKIs) (of which Sutent is one). They actually seem to work with other chemo drugs too, but most of the research has been with TKIs and HDAC inhibitors. They're doing clinical trials with a few types of cancer, not RCC to my knowledge, and the results are promising. Vorinostat, an HDAC inhibitor works with Temsirolimus (not a TKI, but an mTOR inhibitor) on RCC cells in culture (in a Petri dish). There are some other HDAC inhibitors that worked extremely well in culture for RCC, but they are not commercially available. The best part is that there are HDAC inhibitors approved by the FDA. Maybe it's time to start a clinical trial for HDAC inhibitors with Sutent in Little Rock, or maybe just go for off label use of a currently approved one?
Monday, November 15, 2010
If ifs and buts were candy and nuts....
we'd all have a Merry Christmas. I'm going on record BEFORE the ifs and buts as to not be cliche' if and when we are faced with ifs and buts. You understand, I'm sure.
So for the past 8? weeks Dad has gone relatively rogue with his Sutent doseage. By relative, I mean that he didn't dream up this protocal, he's just trying a different doseage schedule. Now I will give you information you didn't even know you wanted on the titration and permutation of sunitinib malate.
The Sutent people say that you should take 50mg. daily for 4 weeks, then take 2 weeks off to clear the toxicity out of your body. Since its breakout in early 2006, there have been modifications to the dosing schedule. Huh... look at that... dosage is not spelled doseage... though it should be. Thanks, gergle.
It is very individualized treatment as far as how side effects hit you and how much Sutent holds off your nasty tumor spread. So.... Dad started on 50mg 2 weeks on, 1 week off back in August of 09. Side effects in his feet got pretty bad.
He decided to try 50mg 1 week on, 1 week off, give or take afew days, to accomodate his busy social calendar, to see if that alleviated any of his foot symptoms.
So eight weeks ago, we... and by we I mean him, but with our full support, decided to take the risk of a decrease in dosage. The risk is that the decreased dose does not hold off metastatic growth. Remember, that's the gold medal...no growth... status quo. We, and by we I mean him, but with our full support, find out IF the reduced dose was worth it, on Friday the 19th. IF he still has stability, then of course it was worth it. BUT... if he does have growth, will we say the same thing?
I say yes. It was worth it. You know the feeling that you get when you know that something might hurt? It's almost worse than the real thing... the anticipation of the hurt?? This is pure assumption on my part as to its application of Sutent feet, but... I know I'm right. :)
You're placed on this drug that puts you in anticipated pain. You can measure it by the calendar. You know it's coming. Like when you think about work on Sunday afternoon, you might as well call your weekend over.... I think that part of the pain of the sore feet is knowing that you're going to have sore feet. There's a certain level of psychological pain in enforcing your own anticipated pain, by taking that pill every evening. Psyching yourself up to tolerate the pain may be as lonely and depressing as dealing with the pain itself.
And I think there should be a better description than "sore feet." I get sore feet when I've been standing in fantastic peep-toe pumps for too long. I imagine I'd get sore feet if I ran further than from this desk chair to the refrigerator (BUT THAT WILL NEVER HAPPEN?!) These aren't sore feet. These are dysfunctional throbbing nubs on the bottom of your legs. These are I'll-sit-here-real-still-'cause-my-feet-don't-hurt-and-won't-move-because-when- I -do- they-hurt- real-bad feet.
So, Dad goes from the anticipated pain cycle to the let's see approach that most of us are still afforded. WORTH IT. He went pheasant hunting. Which is still a little strange, I think, from the man who can't look at a turkey carcass and cries when dogs die ( thenthitive thoul... we love him). I have seen him regularly over the past 8 weeks because of the integration of Razorback Football into his and Mom's Maslow's Heirarchy of Needs.
I'm the empath of the family. And I feeeeel he's a different psychological creature since the change in dosage.
Maybe it was shooting all those poor pheasants looking to get the hell out of that corn field. Maybe it's the regular visits with my precious face and witty charm over the past 8 weeks. Maybe its the new table he just got to buy Mom so everyone would have a place to sit at Thanksgiving. MAYBE IT'S BECAUSE HIS DAMN FEET DON'T HURT as much, and he doesn't have to dread them hurting, and he has some shred of percieved control in the destiny of his pain cycle...
Again. Worth it. If on Friday we see growth, I'll still say the same.
Lovey, E
Sidenote: I think we should change all medical literature to call it 'metadynamic' growth instead of 'metastatic.' Isn't the juxtoposition of static and growth in the same phrase an act of hypocricy? Not to be confused with Hippocratic? Think on it.
So for the past 8? weeks Dad has gone relatively rogue with his Sutent doseage. By relative, I mean that he didn't dream up this protocal, he's just trying a different doseage schedule. Now I will give you information you didn't even know you wanted on the titration and permutation of sunitinib malate.
The Sutent people say that you should take 50mg. daily for 4 weeks, then take 2 weeks off to clear the toxicity out of your body. Since its breakout in early 2006, there have been modifications to the dosing schedule. Huh... look at that... dosage is not spelled doseage... though it should be. Thanks, gergle.
It is very individualized treatment as far as how side effects hit you and how much Sutent holds off your nasty tumor spread. So.... Dad started on 50mg 2 weeks on, 1 week off back in August of 09. Side effects in his feet got pretty bad.
He decided to try 50mg 1 week on, 1 week off, give or take afew days, to accomodate his busy social calendar, to see if that alleviated any of his foot symptoms.
So eight weeks ago, we... and by we I mean him, but with our full support, decided to take the risk of a decrease in dosage. The risk is that the decreased dose does not hold off metastatic growth. Remember, that's the gold medal...no growth... status quo. We, and by we I mean him, but with our full support, find out IF the reduced dose was worth it, on Friday the 19th. IF he still has stability, then of course it was worth it. BUT... if he does have growth, will we say the same thing?
I say yes. It was worth it. You know the feeling that you get when you know that something might hurt? It's almost worse than the real thing... the anticipation of the hurt?? This is pure assumption on my part as to its application of Sutent feet, but... I know I'm right. :)
You're placed on this drug that puts you in anticipated pain. You can measure it by the calendar. You know it's coming. Like when you think about work on Sunday afternoon, you might as well call your weekend over.... I think that part of the pain of the sore feet is knowing that you're going to have sore feet. There's a certain level of psychological pain in enforcing your own anticipated pain, by taking that pill every evening. Psyching yourself up to tolerate the pain may be as lonely and depressing as dealing with the pain itself.
And I think there should be a better description than "sore feet." I get sore feet when I've been standing in fantastic peep-toe pumps for too long. I imagine I'd get sore feet if I ran further than from this desk chair to the refrigerator (BUT THAT WILL NEVER HAPPEN?!) These aren't sore feet. These are dysfunctional throbbing nubs on the bottom of your legs. These are I'll-sit-here-real-still-'cause-my-feet-don't-hurt-and-won't-move-because-when- I -do- they-hurt- real-bad feet.
So, Dad goes from the anticipated pain cycle to the let's see approach that most of us are still afforded. WORTH IT. He went pheasant hunting. Which is still a little strange, I think, from the man who can't look at a turkey carcass and cries when dogs die ( thenthitive thoul... we love him). I have seen him regularly over the past 8 weeks because of the integration of Razorback Football into his and Mom's Maslow's Heirarchy of Needs.
I'm the empath of the family. And I feeeeel he's a different psychological creature since the change in dosage.
Maybe it was shooting all those poor pheasants looking to get the hell out of that corn field. Maybe it's the regular visits with my precious face and witty charm over the past 8 weeks. Maybe its the new table he just got to buy Mom so everyone would have a place to sit at Thanksgiving. MAYBE IT'S BECAUSE HIS DAMN FEET DON'T HURT as much, and he doesn't have to dread them hurting, and he has some shred of percieved control in the destiny of his pain cycle...
Again. Worth it. If on Friday we see growth, I'll still say the same.
Lovey, E
Sidenote: I think we should change all medical literature to call it 'metadynamic' growth instead of 'metastatic.' Isn't the juxtoposition of static and growth in the same phrase an act of hypocricy? Not to be confused with Hippocratic? Think on it.
Wednesday, October 20, 2010
The Rotten Kidney takes a week off
Hey y'all.
This week the keeper of the Rotten Kidney is on vacation.
Earlier this year, my brother, Barett, invited me to go along with him
on his annual trip to the opening week of Pheasant season in Kimball,
South Dakota. Not having been a hunter in the past didn't stop me and so
over a period of a few months I have now transformed myself into what appears
to be a Cabela's hunting clothing model complete with a piece of art that is
in the form of a 12 gauge shotgun made by an obvious artisan in Italy. I did some trap shooting with Bobby Raney and so now I can load a shotgun and hit a clay target from time to time.
On Sunday we drove 900+ miles to Kimball and joined with a couple dozen other hunters from Louisiana, Arkansas, Arkansas , DC, and TX for a week of hunting wild pheasant
at the HorseshoeK Ranch. Some of these guys have hunted wild pheasant for decades and some for only a few years, but they are willing to holler at me and help me learn how.
The main thing is to not pull a Dick Cheney and shoot your fellow hunter. You will see by some pictures that I actually can hit a flying pheasant too. Those seasoned hunters don't mind letting you know when you missed too....AFTER they shoot your bird for you.
This week the keeper of the Rotten Kidney is on vacation.
Earlier this year, my brother, Barett, invited me to go along with him
on his annual trip to the opening week of Pheasant season in Kimball,
South Dakota. Not having been a hunter in the past didn't stop me and so
over a period of a few months I have now transformed myself into what appears
to be a Cabela's hunting clothing model complete with a piece of art that is
in the form of a 12 gauge shotgun made by an obvious artisan in Italy. I did some trap shooting with Bobby Raney and so now I can load a shotgun and hit a clay target from time to time.
On Sunday we drove 900+ miles to Kimball and joined with a couple dozen other hunters from Louisiana, Arkansas, Arkansas , DC, and TX for a week of hunting wild pheasant
at the HorseshoeK Ranch. Some of these guys have hunted wild pheasant for decades and some for only a few years, but they are willing to holler at me and help me learn how.
The main thing is to not pull a Dick Cheney and shoot your fellow hunter. You will see by some pictures that I actually can hit a flying pheasant too. Those seasoned hunters don't mind letting you know when you missed too....AFTER they shoot your bird for you.
Remember when you were 20 and largely indestructable? Well I'm 20 with almost 40 years of experience and still get that indestructable feeling now and then. On Tuesday afternoon, after hunting , four of us jumped in a truck and drove like hell for 250 miles so we could see Mount Rushmore before dark.... eat a steak on the western edge of South Dakota... then drive back 250 miles to the Horseshoe K so we could get up and go hunting again on Wednesday..... Piece of cake. Got the picture.....got the t-shirt.
We got back in about 2 Am
but apparently didn't wake anybody up...they were all up anyway making their first bathroom run. Old guys get up in the night for some reason !!!!
On the way back on Saturday, they dropped me off in Fayetteville so I could meet Debbie for the Arkansas/Ole Miss football game. There was a lightning delay during the 3rd quarter and we retreated to Erin's house. I got to play with Ethan and Elliot for a while before they went to bed. We stayed with Matt and Rachel so we could sleep in. 10AM Sunday .....stretch / well rested.
I had a great time. Thanks to my brother, Barett, for introducing me to pheasant hunting. Now that I have all the stuff, it will be much, much cheaper next year... NOT !
Now i'm in Austin, Texas. I'm exhibiting tile at a nationl meeting of the National Trust for Historical Preservation. I'll be home Friday night in time to head for Fayetteville for the
Arkansas/Vanderbilt game.
I'm managing the Sutent.... trying to control the sore feet and balancing treatment and quality of life with the modified protocall. New scans will be in late November. Life is Good!
October was busy ! Happy Halloween y'all.
Bryan
Wednesday, September 29, 2010
Goin' Rogue
Hey Guys, It's Fall. I see that Erin has called me out.
Busy summer...lots of same ol' same ol'. Now we're into Fall and why not get out of the same ol' same ol' mode.
You've heard me complain and complain about the sore feet issue side effect. I even started an analysis so I could track the severity of sore feet and track when it was happening within the parameters of the Sutent dosage. I called it the Fujiama scale, but never came up with a suitable acronym. The schedule yielded 10 good feet days followed by 10 sore feet days. I talked to the Doc about it to see if I could draw any conclusions and he said "You're over anal-izing this".
Soooooo. I'm going a little Rogue on the Sutent schedule. Instead of the 2 weeks on - 1 week off. I'm trying 1 week on - 1 week off. This essentially lowers the dosage 25%. This schedule is not unheard of...it's not original to me... we'll see how it goes. Everything is on Google..for better or for worse !
Based on the above sore feet index, I think it may change the sore feet index to 10 good feet days and 4 sore feet days; or, it might essentially eliminate sore feet. Now THAT is quality of life ! Scans come up the third week of November...we'll see if I got away with it. In life, we are not used to settling for a draw. In RCC , playing to a draw (stability) is like winning a medal.
We've had a busy Fall so far. Football is back! Our opportunities to go see grandbabies in NW Arkansas and take in a Razorback game (in that order) is upon us again. By the way, we get to see Rachel and Matt as well as Erin and Shaun.
We had a game in Little Rock too. We invited Don and Lee Bell down for the game and a night at Debbie's Bed and Get Your Own Breakfast. In 40 years....they had never been to a game in Little Rock. We had a good visit and got a game in the win column. They're like my Dad... he only saw games in Little Rock and never saw the Hogs lose a game.
I'm still working most days. I've learned how to go in late...even without a reason! Now all I have to do is work on leaving early. I've had excursions to Emily's school for grandparents week and a couple of lunch dates with Eli at school. Life is good. I'm fine.
Bryan
Busy summer...lots of same ol' same ol'. Now we're into Fall and why not get out of the same ol' same ol' mode.
You've heard me complain and complain about the sore feet issue side effect. I even started an analysis so I could track the severity of sore feet and track when it was happening within the parameters of the Sutent dosage. I called it the Fujiama scale, but never came up with a suitable acronym. The schedule yielded 10 good feet days followed by 10 sore feet days. I talked to the Doc about it to see if I could draw any conclusions and he said "You're over anal-izing this".
Soooooo. I'm going a little Rogue on the Sutent schedule. Instead of the 2 weeks on - 1 week off. I'm trying 1 week on - 1 week off. This essentially lowers the dosage 25%. This schedule is not unheard of...it's not original to me... we'll see how it goes. Everything is on Google..for better or for worse !
Based on the above sore feet index, I think it may change the sore feet index to 10 good feet days and 4 sore feet days; or, it might essentially eliminate sore feet. Now THAT is quality of life ! Scans come up the third week of November...we'll see if I got away with it. In life, we are not used to settling for a draw. In RCC , playing to a draw (stability) is like winning a medal.
We've had a busy Fall so far. Football is back! Our opportunities to go see grandbabies in NW Arkansas and take in a Razorback game (in that order) is upon us again. By the way, we get to see Rachel and Matt as well as Erin and Shaun.
We had a game in Little Rock too. We invited Don and Lee Bell down for the game and a night at Debbie's Bed and Get Your Own Breakfast. In 40 years....they had never been to a game in Little Rock. We had a good visit and got a game in the win column. They're like my Dad... he only saw games in Little Rock and never saw the Hogs lose a game.
I'm still working most days. I've learned how to go in late...even without a reason! Now all I have to do is work on leaving early. I've had excursions to Emily's school for grandparents week and a couple of lunch dates with Eli at school. Life is good. I'm fine.
Bryan
Tuesday, September 28, 2010
SOMEBODY NEEDS TO WRITE A POST
No no, not her.... the guy creepin' in the background.
Bwa ha ha ha ha ha.
Possible Titles:
1. Going Rogue; 1:1 baybeeee!
2. This papercut on my finger really hurts.... must be the Sutent.
3. I never leave the house without my polarfleece jacket.
4. Why do I wear little white ankle socks with my sandles?
5. No I'm not in liver failure, I spent $84,000 dollars last year to look this yellow.
6. Remember when I tried to stop drinking Diet Coke? Pfffft!
7. That's all I can think of, Dad.
Don't disappoint.
No pressure.
Lervy dervy, Erv
Saturday, August 28, 2010
Monday, August 23, 2010
Look For Cardinals and Live Like Bryan
When "we" first got the diagnosis of RCC, I thought I would have penned a fantastic eulogy by now. Google stats aren't encouraging. It've had everyone in tears, but leaving with a sense of goodness and calm and acceptance and peace. Have we run out of things to talk about? Hell no. Besides, this blog is what I do when my laundry pile becomes daunting.
We just need to talk about larger things, weightier things. All the comments have ceased to exist. My followers are bored. Therefore; I now switch to WEIGHTY PHILOSOPHICAL PERSPECTIVE. I might stay in this mode for a while. I might not.
I called around for suggestions for this evening's entry. Dad agrees with the switch. I'll get the latest scan stats out of the way. I'm afraid now that I'm setting up the latter part of the blog too grandly, and I hope that I don't let down.
Anyway, Sutent Stud went for scans on the 19th. Everything came back stable. The radiologist got a little careless on his report, and reported the size of one met (the scrawny one) as 1.2 x 0.1 when it measured in at 1.2 x 0.7 three months ago. CHECK YOUR WORK, SUCKER! Now, many people don't appreciate math like we do, BUT, if those numbers were correct, and not a typo, then that woulda been an 85.714% reduction in the scrawny met. I mighta wasted my money and taken Dad out for dinner because his met shrank?! Hmmm. Baltzy said it was a typo. I'll forgive the radiologist in time.
Mom thinks its funny that they always report that the right kidney, is, infact, still missing. She also says, or used to, that "God is Math." I don't really know what that means, but it got all of us kids thru some calculus homework back in the day.
WEIGHTY PHILOSOPHICAL PERSPECTIVE
I think about the bigger picture alot. Dad told me that today while he was driving to work (before he helped himself to a largish spread of breakfast items at 1pm in a Waffle House- why the hell not?!) his thoughts wandered to "well I wonder who died today?"
I do wonder- how many people died today? Some of them might not have been noticed... how sad. Some of them will be missed profoundly... how sad. Some of them were thankful that their suffering was over... how sad. Some of them decided that the best bet to stop their pain was death... how sad. Where am I going with this? Death, the universal equalizer. It's going to happen to us all. This is getting cliche'.
I'll switch.
Rachy's input was about cardinals. The cardinal is Dad's favorite bird. I don't know why we know this, or when it was spoken, but it is known. Hell, maybe it isn't even true?! She said that when she sees a cardinal, she thinks (now), that the cardinal will remind her of Dad when he's gone (not gone like- in the bathroom, like gone-dead). I have had the exact same thought when I've seen a cardinal post-diagnosis. Rachel added that today, though, she realized that when she sees a cardinal, it already makes her think of Dad, and that she shouldn't have to save it for when he's dead. We've already picked out our posthumous icon for him. That's creepy, not philosopical.
I'm not a philosopher, apparently. I can't get my words out. Bottom line, is that lots of people are suffering. Lots of people are living in a body that will fail them tomorrow. We're just fine. I'd say we're better than fine. He's just fine...he'd say better than fine. Perhaps the best measurment of the fine-ness is that he woulda stopped for a largish spread of breakfast items at 1pm at Waffle House two years ago. It had nothing to do with "livin' it up" just in case. He's always lived like that.
Look For Cardinals, Live Like Bryan.
Good thing I'm not a philosopher,
Erv
We just need to talk about larger things, weightier things. All the comments have ceased to exist. My followers are bored. Therefore; I now switch to WEIGHTY PHILOSOPHICAL PERSPECTIVE. I might stay in this mode for a while. I might not.
I called around for suggestions for this evening's entry. Dad agrees with the switch. I'll get the latest scan stats out of the way. I'm afraid now that I'm setting up the latter part of the blog too grandly, and I hope that I don't let down.
Anyway, Sutent Stud went for scans on the 19th. Everything came back stable. The radiologist got a little careless on his report, and reported the size of one met (the scrawny one) as 1.2 x 0.1 when it measured in at 1.2 x 0.7 three months ago. CHECK YOUR WORK, SUCKER! Now, many people don't appreciate math like we do, BUT, if those numbers were correct, and not a typo, then that woulda been an 85.714% reduction in the scrawny met. I mighta wasted my money and taken Dad out for dinner because his met shrank?! Hmmm. Baltzy said it was a typo. I'll forgive the radiologist in time.
Mom thinks its funny that they always report that the right kidney, is, infact, still missing. She also says, or used to, that "God is Math." I don't really know what that means, but it got all of us kids thru some calculus homework back in the day.
WEIGHTY PHILOSOPHICAL PERSPECTIVE
I think about the bigger picture alot. Dad told me that today while he was driving to work (before he helped himself to a largish spread of breakfast items at 1pm in a Waffle House- why the hell not?!) his thoughts wandered to "well I wonder who died today?"
I do wonder- how many people died today? Some of them might not have been noticed... how sad. Some of them will be missed profoundly... how sad. Some of them were thankful that their suffering was over... how sad. Some of them decided that the best bet to stop their pain was death... how sad. Where am I going with this? Death, the universal equalizer. It's going to happen to us all. This is getting cliche'.
I'll switch.
Rachy's input was about cardinals. The cardinal is Dad's favorite bird. I don't know why we know this, or when it was spoken, but it is known. Hell, maybe it isn't even true?! She said that when she sees a cardinal, she thinks (now), that the cardinal will remind her of Dad when he's gone (not gone like- in the bathroom, like gone-dead). I have had the exact same thought when I've seen a cardinal post-diagnosis. Rachel added that today, though, she realized that when she sees a cardinal, it already makes her think of Dad, and that she shouldn't have to save it for when he's dead. We've already picked out our posthumous icon for him. That's creepy, not philosopical.
I'm not a philosopher, apparently. I can't get my words out. Bottom line, is that lots of people are suffering. Lots of people are living in a body that will fail them tomorrow. We're just fine. I'd say we're better than fine. He's just fine...he'd say better than fine. Perhaps the best measurment of the fine-ness is that he woulda stopped for a largish spread of breakfast items at 1pm at Waffle House two years ago. It had nothing to do with "livin' it up" just in case. He's always lived like that.
Look For Cardinals, Live Like Bryan.
Good thing I'm not a philosopher,
Erv
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