I need more hours in my days!

My new Franchi..... finally got here. Debbie said something about "the last one" whaaaat?
It will be all ready for pheasant later this fall. Can't wait to take it to the range and knock down some clay pigeons.
Maybe it's my lucky day....I bought a Megaball ticket to $76 Million... I could stand it.


Y'all saw Erin's blog....well, I was the recipient of a chemistry cocktail today! I haven't quite figured out the PV=nRT of that yet....but it's in there, or at least my kids are sure that it is.
I took my first intravenious Avastin today along with an injection of low dose Interferon.
Ten hours out, not feeling bad at all.... that's a good thing.

Amazingly, the damned sore feet are as good as they have been in 15 months. I need to massage my data and Damn Sore Feet logs vs. Sutent dosage , but first brush says that probably 6 weeks ago I got a clue that something was different with the Sutent....the feet were not going to their peak..... I was paying attention to the number of bad days instead of the magnitude... the last round, they never got above a V (roman numeral) .

What I expect tonight is flu symtoms... fever, chills, aches and pains. I'll trade sore feet for that any day. The IV took longer than normal because it was the first time, it will speed up over the next couple of times until it's down to about 30 minutes. Dosage is Avastin every other Tuesday, and an injection of Interferon every week at the same time. Blood work and see Doctor Baltz every week.

I happened to mention a little angina when I was trudging up the hill in the snow and carrying firewood to the porch last week. Doc says, "Damn, are you gonna have a heart attack while I'm trying to control this cancer?"
"Who's your cardiologist?" Whaaat? you don't have a cardiologist? So he called a friend of mine, Dr. Ben Johnson. Got me right in.... we're gonna do a catheterization on Thursday morning to make sure things are as they should be and fix them if they are not. I think my ticker is ok, but I've been on some pretty strenuous chemistry for a while and I haven't been doing the gym like I did before. I promised Joe Henry that I'll get back to it... I have missed our bike rides to nowhere.

About enough for one day, don't you think? I'll go to work tomorrow and get a little rest.

Thank you all for the support of my family as we trudge through this unplowed ground.
I'm fine....life is good. Daffodils are up, pear trees blooming, my bees are active.

Love you all,
Great Speckled Byrd

The space shuttle blasted off for the VERY LAST TIME yesterday. NASA failed us in July when we were there and they rescheduled the trip. And today we find out that SUTENT has failed us. Failure. Failure. Failure.

I shouldn't be so hard on Sutent. She (I give anything with remarkable strength, tenacity, and wicked side effects a feminine personification) has been good to us. She's given us a chance to be in the lucky crowd, the chosen ones for whom the drug works, the elite class of stable disease...

Not today. Today we're like those other people. People who are told that they have "failed" a drug. We're not sure of the reason, but it doesn't matter. We are on to the next drug cocktail...Avastin and Interferon. Sutent is tired of blocking the blood flow to the branching arms of baby metastases and she's tagging off to her bitchy friends to take the lead. You've been great Sutent, take a break. Have a beer. Enjoy your vacation. We may need you again later.

Dad's scans today said he had "slight growth" in his lil' lung mets and "a couple of new small nodules ...along the right hemidiaphragm" and 3 small nodes in the paracaval region near the "expected region of the renal hilum which are new and felt to be metastatic." You grow something new and you're a failure. Tough room.
It's not that we didn't expect it, we knew it would happen eventually. Just sucks when you're no longer the lucky bastards.

We're a family of problem solvers. Question answerers. Dad's first response to the spectrum of child interrogation was a chemical equation.

Why does the toilet flush? Because, honey... PV=NRT.
Why can't I live at the mall? Why? Because PV=.....NRT.
Why does the tile go in the kiln green and come out red? Simple. PV=NRT.



Low and behold, in 11th grade Chemistry, Mrs. Dyer wrote the answer to all my questions on the board?!

My mouth dropped, my eyes wide... I was nodding.... My dad in-ven-ted that! Like oh my gawd, yall! My Daaaaaaaad seyyyyyz thaaaaaa!

And I counted the minutes 'til dinner when I could have a real answer to the question of "didja learn anything?"

So why... if microwaves work, and space shuttles fly, and for God's sake, my cell phone knows where I am, and drugs exist that make sad people happy! Why can't there be an answer for RCC?????

NED= RCC-{[(26*sumA)+B)]}/9

There. Just in case.

Blah,
E

Where've you been?

Friends and family came to the porch to help celebrate Bryan's 60th birthday. We had good food, a fabulous cake, and lots of people. All of our kids and grandkids were here. Mike and Diana Roller and Talmon Preyer came from Mountain Home. Jerry Smith and his wife Brenda came. Jerry and Mike were Bryan's college roommates. Don and Lee Bell, Jeff and Sarah Koenig all came from Northwest Arkansas. Gail and Vic Sutcliffe came from Frisco, Texas. Terry Joe Shaw, Joe and Mary Helen Henry, Cliff and SanDee Clifton, Carl and Judy Chipman were the locals. The weather was good enough to sit on the porch, and we all visited until late.

On January 20, we flew to Honolulu where we took off on a cruise around the Islands. It was warm, beautiful, and relaxing, a time apart. We came back to Little Rock just in time for all these snow events.

Medical news? Not much. Bryan took an extra week off of Sutent during the cruise to be sure he could walk! He will have his next scans on February 24 and his appointment for the results on the 25th. The nurse asked at the last doctor's appointment whether he was anxious about the upcoming scans. No. Not really.

After the trip to Hawaii, Bryan went to the Greater Philadelphia Historical Home Show. He stayed in the hotel where the show was so that he would be close by. He flew back home during the Super Bowl, arriving back home about 10:00 pm. In March he's going to Las Vegas to Coverings, the annual trade show of all things for floors. Erin and Rachel are going along to be his beautiful booth support staff. I think they're actually going for the shows, food, and time away from their day jobs. (I'll be stuck in the classroom, having used up all my PTO for the year.)

I tried to post some Hawaii pictures, but my computer froze. Picture blue Gatorade--that's the color of the water. Feel 80 degree air, not humid, just a slight breeze. Hear cliche Hawaiian music--it's real. Now, this is how much I love the Gulf of Mexico beaches: they're better than Hawaii's. Really. Best news yet: a new airline is flying a nonstop flight from LR to Destin for $89. I'll be on it soon.

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?

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.

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.

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

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