Like A Frightened Turtle

Quick update and an introduction to my new hero.....

First of all, for those of you that don't get the title of the blog as fast as Jenny and Bart did, this is the Seinfeld reference...

So a quick recap.........4 tumors total in my neck, with the largest being 15mm.   I could feel all of them, and the biggest I could measure with a cool digital caliper that I bought from Lowes if I twisted my neck to a really odd angle.   I could tell in the last 3 weeks that the biggest tumor was getting smaller, or at least felt like it.   But in the last week it seems to have shrunk by about half of what it started.........like a frightened turtle!!   (see how I tied the title in?   I'll be teaching this important step in 4th grade writing soon)   Now, this is not scientific, but it sure seems like it's at least 50% smaller.   Great news and a HUGE praise!!!!!

I did go back to MD Anderson on Oct 12th, after the Oct 5th appointment was Aardvarked!   (ties to previous blog post, this is more of an advanced, 5th grade writing step)   The infusion went very smoothly, and I felt really good the week after.  This week is a little rougher, as I'm not 100%, and the stomach issues have been getting worse.    But going to Game 1 and Game 6 in Wrigley to watch the Cubs advance to the World Series helped!!!   (Thanks cousin Chris!!!)

On to the hero part.........    Texas Monthly has a cover story on Dr. Jim Allison, who is the chair and head of the Department of Immunology at MD Anderson.   It is one of the most fascinating and interesting articles I've ever read.   (and maybe the longest)   Mindy said "this article was written to and for you!!!!!!!"   It's about the research that has gone into developing and the science around the EXACT treatment I'm on!!!!   For most the article would make your head spin, but it discusses every treatment I've been on, from interferon, Sylatron, radiation and now nivo/ipi.    Dr. Allison developed ipi..........the wonder drug based on CTLA-4 molecules.  The article points out that he is expected to get the Nobel Peace Prize soon, and I for one, can't think of a better person.  His license plate on his Tesla is CTLA-4.......nerd alert maybe?   But it's OK little buddy, get back in that lab and keep up the great work!!!!!!    

I can't begin to thank everyone that has touched my life in the last few months......I'm humbled and blessed more than I can express.  

Mike

Let's Talk Aardvarks!!

No, this isn't going to be a blog about the little guy above......but I need a code word for poop (I was going to say 'diarrhea', but I think that is one of the most hated words in the English language, along with 'moist' for some reason, but I digress)....so AARDVARK it is!  

My alarm goes off Wednesday morning at 4:15 am for my trip/flight to Houston.    I get to MD Anderson at 7:45 for blood work and head up to wait for Dr. Patel.   Mindy shows up with her signature chocolate chip cookies, which are amazing, and we are called back within 30 minutes.   A nurse comes in and asks a few questions, and then Dr. Patel's side kick comes in and asks a ton of questions and does an exam.    Here is where the conversation takes a turn towards our odd friend pictured above.     "How many aardvarks are you having a day?"   "When was your last aardvark?"   "Does your stomach cramp before your aardvarks?"  "Is there a sense of urgency with your aardvarks?"     You get the picture.    A couple of those answers were yes, and here is where the problem arose.  

Dr. Patel comes in and says "yeah, so you aren't doing your nivo/ipi treatment today, but thanks for the cookie!!!"     Wait what????????    So I put on my 'sales' hat and say "Let me change the detailed description of my aardvarks, and convince you that I'm getting nivo/ipi in 2 hours."    Dr Patel:  "you can talk all you want, but you aren't getting nivo/ipi today.....and do you use a special margarine or something in these cookies, they are fantastic!!!"    I talk and beg for 15 minutes and she and Mindy finally convince me to head back to Hobby Airport and fly back to Big D.

So here is the basic reason why I didn't get an infusion yesterday.    In the clinical studies of nivo/ipi, they had a couple of people die........yeah, DEAD, because they ignored stomach issues that lead to intestines bursting and other nasty stuff like that.   So they take any stomach issues very seriously, to the point where if you are having 5+ aardvarks a day, they may pull you off the study/drug all together.   Nivo/ipi stay in your system for 60+ days, so no biggie to skip a week and see if we can take some "anti-aardvark" meds.  

By the time I got back to the office I already had new appointments set for next Wednesday, and the nurse has called 3 times today to get aardvark reports.    I can see it now.... Next on Fox News, we break from the hurricane coverage to give you a live update on Mike's aardvark!!!!!!

Thanks to everyone for the prayers, calls, texts and especially to Aunt Emmy and Uncle Bill who keep arranging flights to Houston, that is a huge answer to prayers!

Love to everyone!     Next week possum talk!!!!!!!!

Mike

A Piece of Cake or Nivo/Ipi???

So Mindy has been bossing me around.........uh......"helping" me keep track of things since I was, well, born.    From letting Mom know that my apple fell from the tree when I was in Kindergarten (in K we had a tree on the bulletin board and each of us had an apple with our name on it, when you got in trouble, your apple fell from the tree), to going with me to MD Anderson yesterday.   She is a trooper, minus the "Apple incident of 1973 in Austin, TX".

So I fly to Houston Tuesday afternoon, grab an Uber to take me to MD Anderson, and about 5 minutes from the airport I get a text from Dave........."Hey, I'm your Uber, I'm sitting outside, call me when you land".   Sorry Dave.......    I get blood work and then head to the odd building where they do the brain MRI......and I see Dave sitting in the lobby!   Again, sorry buddy.   Tuesday goes smoothly and I head to dinner with Mindy and Dave, I eat well when I'm in Houston!!!

I worked Wednesday morning at Mindy and Dave's house where my mission is to make Max the yellow lab like me, had lunch with M&D, and Mindy and I headed back to MD Anderson. We had a 2:15 appointment with Dr. Patel, she was running an hour behind but she and her team gave us great info about what was coming.    At one point Mindy asks me:   "Are you nervous about starting the nivo/ipi combo thingy?"   Me:  "If I had the choice of eating a piece of cake, or getting an infusion of nivo/ipi, I'll take the cake".   I think that sums it up.     One side note, the 11mm tumor is not 15mm........Dr. Patel doesn't seem concerned, and will keep a close eye on it, measuring each time.

We head downstairs and wait for 45 minutes to be called back into the Infusion center.   They put us in a small room and almost immediately hand us a menu for dinner.   Hey, I'm not one to turn down a free meal, so I order a sandwich.   IV started by Dana, the nurse with angelic IV starting hands and we waited another 15 min for Nivo to show up from the pharmacy.   That arrives and Nivo is flowing.  Here is where we are told Nivo is an HOUR, and Ipi is 90 minutes......ruh roh, I'm not going to make my flight.   So a quick call to Southwest Airlines and I'm on the 10:00 pm flight, but that doesn't look good.   Nivo finishes and we wait 30 min before starting Ipi.   90 min on the clock starts and we start doing math on if I can make that late flight.........not looking good.

Now, here is where the "Great Sandwich Incident of 2016" starts.   MY dinner arrives, Mindy's does not.   I do what any good twin brother would do, OFFER to split my sammich, NEVER thinking Mindy will take food out of the mouth of a Stage III cancer patient, who by the way is hooked up to 4 IV bottles of poison.   But Mindy grabs the sandwich so fast I thought I was going to lose a hand........she scarfed it like a fat kid on Halloween.   

Back to Ipi flowing, the late night nurse comes in and says I have another 5 minutes, then 30 min of observation starts.   IF we do 30 min, NO chance I make my flight, so I ask if we can forgo ALL of the observation, and amazingly she agrees!   A quick check of vitals, and I'm dismissed....and we RUN to the car.   I make the 10:00 pm SWA flight by 10 min and I'm the last one to board.   Home at 11:50 and I'm officially tired.   

Today I'm sore and minor flu like symptoms, but nothing major.   I don't feel great, but not miserable.     One HUGE praise, and an answer to prayer......after the 4 combo doses I start on Nivo every 2 weeks for two years.    Dr. Patel said I could look for a place to do those infusions up here, and just come down there for scans and check ups.   That is BIG!!!

Thank you VERY much again to Uncle Bill and Aunt Emmy for flying me to Houston on SWA, thank you to Mindy and Dave for the hospitality, to Mindy for being by my side for 48+ years........I'll split a sandwich with you any day, and thank you to everyone for the prayers, calls and well wishes....it means more to me than I can every tell you.

Mike

Yeah Science!!!

I know what you are wondering as you woke up this morning, sipping your coffee...."Hey Mike, now that you are Programmed death-ligand 1 (PD-L1) also known as cluster of differentiation 274 (CD274) or B7 hololog (B7-H1) negative, are you going with ipilimumab and nivolumab?"     

Yeah Science!!!    

Why yes......that IS the plan!    Dr. Patel emailed last Friday and said my PD-L1 test came back negative.   (I swear to you, my first thought was 'I failed another test!!!')    We were waiting for the PL-L1 test results to narrow down the 3 options that were available, and being PL-L1 negative did just that.    So here is the plan:

Flying down to Houston Tuesday afternoon
6:45 bloodwork
7:15 Brain MRI with contrast 
Wednesday 2:30 meeting with Dr. P
3:00 start infusion of nivo/ipi

The infusion takes 3 hours.   About 30-60 minutes for each drug, then they stare at me for an hour to make sure nothing odd is happening.

Last night at "Cousin's Dinner"........   (cousin's dinner is Sun night.   My cousin Chris and his family meet my fam, Jenny's family, Emily's family when they can make it, and the rare appearance from my parents for a very casual dinner, last night was at Fuddruckers.   We have been meeting for "Cuz dinner" for 15+ years).......some asked about nivo/ipi, so I'll give a brief breakdown.

nivo is nivolumad (Opdivo) and ipi is ipilimumab (Yervoy).   Several years ago they were approved to treat Stage III and Stage IV melanoma separately, and both had moderate success.   Last October they were approved to be used in combination.    Think of it like this, nivo is chicken, and ipi is steak......I just ordered the combo fajita plate!    Both are immunotherapy drug, or checkpoint inhibitors.   Here is a good article on the nivo/ipi combo when the FDA approved them.   chicken/steak combo fajita platter FDA approved

So I now wait for Wednesday at 3:00.   In the past I've known exactly what to expect.   Surgery at 7:00 am at the Carroll Clinic......arrive at 5:30, don't eat anything.  Sadly I can say "hi" to about half of the people at the Carroll Clinic, but the good thing is it's a known entity.   I've got that surgery routine down to a science.   (hit 'yeah science' link above again)   This is a different animal, and doing it in Houston adds to the unknown.  Hopefully the sides effects are as easy as Shane Buechele dropping a perfect pass to a streaking receiver down the sideline, and not as difficult as a Texas Tech defensive stand.

So there is the latest update.   Thank you VERY much to Uncle Bill and Aunt Emmy for the flights to Houston!   Thank you everyone for your kind notes and prayers.

Mike

Giddy Up take 5!!!!!!!

Friends, Romans, countryman, lend me your ears.......

There are a few reasons why the world famous blog would be back up and running.

1. The Cubs won the World Series
2. I won Top Chef 
3. I spun the Melanoma wheel of fun again

The top 2 haven't happened........YET.   (shout out to Isbell and the "YET" theme!!!)    So #3 is the big winner for now!     Several weeks ago I called the great Nurse Terry at Dr. Beitsch's office, and told her I felt a couple of bumps in my neck.   Her response was simple......"Do you want the 9:15 or 3:00 Wednesday".    A sonogram and a needle biopsy confirmed that melanoma was back.    This time we agreed to leave it, and head to MD Anderson to check options.   If we cut it out, again, the options are very limited because MD Anderson doesn't have anything to measure, so I'm not eligible for clinical studies, ect...    A quick email to Dr. Ross and Dr. Patel at MD and I had an appt a week later.    A quick recap of last week........I drove down to MD early on Aug 29th, and had a PET scan at 1:00.    Tuesday I had a neck CT scan with contrast at 6:20 am, then met with Dr. Ross and his team at 9:30.   CT scan confirmed 4 tumors in my neck, Dr. Ross could feel all of them with my head contorted to angles I only thought a Muppet could achieve.    Then I met with Dr. Patel and her team Wednesday and they did a biopsy on a tumor on my jaw line.

Dr. R has clinical studies that are available, with TVEC, chemo, TVEC + Ipi (Yervoy), and any combination and surgery all being options.   Most of those are being ruled out, as there is a chance I could be randomized into the surgical side of the study, and we don't want that.   (been there, done that, got the cool MD Anderson shirt)

Dr. P has studies and everything has a really cool name, like PDI, CTLA4, LEEO11, MEK162, ect...   (feel free to make up your own, nobody will know)   And she has some NRAS targeted therapies also available.   Most people are BRAF positive or negative, I had to be "special" and am NRAS positive.  NRAS+ offers up some trials that are new and hopefully have great success soon, if needed.   Here is some light reading on the BRAF gene if you are bored:   BRAF cool info   Dr. P also had a biopsy done on Wednesday (I have a cool 3mm incision and 3 tiny stitches to prove it) and they will be testing to see if I'm PD-L1 positive or not.    What you say, you want a link to read about PD-L1????    Boom.....

Even Cooler PD-L1 Link

So.........what does all this mean and what is the plan????

Dr. R is presenting my "case" to the Tumor Board (this group would be a blast at a party) on Monday, Sept 12th.   Dr. P is waiting for the PD-L1 results (you should be an expert after clicking on the above link).   And I have another appt at MD Sept 14th.   By then a plan should be set.   I was hoping to hear back this week, but it's now going to be next Wednesday before all the results are in, and everyone has talked.

The Cubs Magic number is 10, Hook 'em Horns, where can I buy a life size cut out of Shane Buechelle, hashtags are so 2015, thanks for all your thoughts and prayers!!!!!!!!!

Mike

MD Anderson Day 2 and a HUGE announcement

The evening after Day 1 was spent at the Farace mansion in Katy, TX.   The highlight was Audra doing a dramatic reading of the last blog post, and she has been chosen as the official reader for the audio version of the blog, coming in the summer of 2016, immediately following my interview with Matt Lauer on the Today show.

Day 2 started with a mid-morning call from MD Anderson letting us know that Dr. Patel and the team was running ahead of schedule, and that I was free to come in earlier than my scheduled 2:00 appt.   Having anyone at MD "running ahead of schedule" is like seeing Halley's Comet every Tuesday for a month...it just doesn't happen.   After a short wait, we were called back and did the blood pressure thingy, and weight (3 pounds less than yesterday....SCORE!!!!)  and met with Dr. Patel's nurse and she went through a rough history and general medical questions.    Then the very cool Dr. Baez entered and spent about 30 minutes going through a complete history of surgeries and treatments.  Side note:   Dr. B is freaking cool, like the flip side of the pillow and you want to invite him to dinner at Flemings when the Bradleys are paying cool.   Grew up in Puerto Rico, went to Stanford, worked on Wall Street with Goldman for two years before going to med school back in PR, and then doing his residency and fellowship at MD Anderson.   Yeah, about like my path and story, we could be twins.   So Dr. B had an interesting focus on the questions....he wanted to know the dates of each surgery and reoccurrence, but wanted to know the specific treatments, length, how I tolerated, ect...    After beating him down with "no really, we should be best friends" he left to go update Dr. Patel.    About 12 minutes gave me just enough time to watch the best Ted Talks ever.....Amy the Unicorn...watch it here if you've never seen it, you can thank me later:

Best Ted Talk Ever-Shawn Achor

So then the great Dr. Patel enters and we are reminded why MD Anderson is so great.   Her bedside manner, like everyone at MD is impeccable.   She is friendly, attentive, knows every date and person's name along my journey off the top of her head and wants to have a discussion, not just tell me what she thinks.  At the end of the day she suggests doing nothing at this point, other than monitoring and checking scans quarterly.  She gave a concrete reason for not doing Yervoy at this point, the 10% uptick in pushing back reoccurrence is not worth the terrible side effects.  They are basically waiting for the 'next time', then LEAVING the cancer in place, so they can have something to monitor to see if the treatment is working.   The tumor or cancer is shrinking, great, stay on whatever drug or in whatever trial, if it's not, then try something else or remove it.   The other interesting thing coming out of this is I'm somewhat of a Melanoma Rock Star!!!   Having an initial diagnosis, then reoccurrence, reoccurrence, and reoccurrence puts me in rare company....so MD will send a private jet to Addison Airport so I can travel in luxury each quarter to make MD my home base.   Ok, so I made up the private jet part, but my agent is working on that, right after making sure Matt Lauer doesn't get 'handsie' during my Today Show interview.

So now for the big announcement.....thanks to the generous offer from Mrs. D (you know who you are you Scandal loving principal.....even thought the acting and story line in Scandal is terrible) I will be teaching 4th grade writing at Isbell Elementary starting this Spring.    So expect a generation of writers that like to use "..." to join run on sentences, put anything and everything in "quotes' to draw attention because you can't see me doing air quotes while I'm typing, and a smarmy attitude and understanding that sometimes comedy makes people uncomfortable.  (see Emily and Mike's rehearsal dinner toast)

Thank you to Mindy and Dave for hosting us for two nights, and buying two of the most expensive meals I've ever eaten.  (Mitch, we still hold first place with Nobu NY)   And to Craig and Audra for a great dinner, company, and keeping the girls for two days.

Mike

PS  I'm kidding about teaching at Isbell.......after the 5th person asked either when I was starting, or if I was still working at Splunk, I figured I needed to clarify!  haha

#Blessed  #TrevoneBoykinisanidiot  #TCUquarterbacksliketohavefelonies  #StillwishTexashadaQB #Scandalisterrible  #LittleSweetslidingdownthebannistermakesmelaugheverytime  #Ilovedrpepper  #MancrushonDrBaez  #MancrushonKirkHerbstreit  #Alabamadefenseisprettygood   #Idon'tproofreadIjusthitpublish   #Untilnexttime  

Souvenir MD Anderson T-Shirt

MD Anderson is amazing.    Literally, amazing.   For starters, it's huge.  Just like going to a sporting event or trying to park in downtown San Francisco for dinner, parking is the first thing you think of when approaching the complex.   After circling and seeing multiple "Full" signs on 15 story parking garages, we found a spot and made it into the "primary" MD Anderson building.    Asked the front desk that was next to the "Aquarium", "Bookstore", big "Souvenir" shop and "Art Display" (because who doesn't want a "My mom and dad went to MD Anderson and all I got was this crummy t-shirt") where to go, and she pointed at Elevator T, 9th floor.    When you walk off the elevator there is a huge waiting room with "MD Anderson Melanoma Clinic" above the entrance.........ahhhhh, my people!!!   "Paperwork" on an iPod, and I was called back......super nice nurse, and a somewhat pushy and over the top "nice" research nurse and then the GREAT Adam entered the room.    Adam is Dr. Ross' PA, or wing man, right hand man, just all around great dude.   We chat for 15 min, and he gets all the pertinent info down to present to Dr. Ross in some super top secret room where I envision Dr. Ross sitting on a big throne with scantily clad nurses fanning him and feeding him grapes.   Then the smell of freshly cut grapes filled the air, as a heavenly glow shown under the door, and after an angelic knock, Dr. Ross entered the room to a huge ovation.   Dr. Ross is the man, super great guy, and all round great doctor.   He has known Dr. B from med school, and asked Adam to try and get him on the phone after questioning me about why the melanoma was removed, instead of keeping the mass intact, and monitoring it versus various treatments or trials.   Adam sticks his head in the door two minutes later with Dr. B on hold.......Dr. Ross steps in the hall to discuss.    They have a good discussion, have a plan if it comes back, and Dr. Ross comes back in.    He wants to do a sonogram on both sides of my neck, and a needle biopsy on anything that doesn't look normal.    He sends me off to the Ross Clinic, which is a 1.3 mile walk through the Sky Bridge system connecting all the buildings.    Literally there is a "golf cart" side of the Sky Bridge, and a "walking" side of the bridge.   Side note/question:   Why do people in white doctors coats look smart.   I could go the Drag in Austin, grab a homeless dude, shower and quick shave before putting him in navy slacks and a white doctors coat that says "Dr. Wilkins, Emergency Trauma Medicine" and he would INSTANTLY look like he knows what he's doing.     So back to the walk......I get to the Ross Clinic and check in for the sonogram.     A really nice tech lady does the very thorough sonogram, and walks down the hall with the results.   A really smart guy (no clue if he was smart or not, but he had a white dr. coat on) appears and says he would like to do a needle biopsy on the left side, he thinks he can tell which lymph node was 'of concern' on the report from last month.   So they set up for the needle biopsy, make me sign consent forms, and another VERY smart guy enters the room......he must have been smart because he had a white coat on AND scrubs.........ooooooooooooohhhhh, impressive.    He jabs me and pokes me with multiple needles, and drops it on some slides.    The nurse hands me an ice pack and a big wad of gauze and they disappear to the floor below us, to have the slide read, right then and there....again, MD Anderson is the real deal.   20 minutes later the doctor sticks his head back in the room and says "Not malignant, you are free to go."     AMEN........finally a sliver of good news!!!!!!!!!     A 1.3 mile walk back to the car and we are on our way back to Mindy and Dave's house to get the girls.  

Tomorrow I have a 2:00 appt with the oncology team.    Dr. Ross had some interesting opinions on the treatment options, but we will wait to hear what the team has to say tomorrow.    And I'll update the blog again tomorrow night.

Thanks everyone for your thoughts and prayers!

Mike "I'm wearing a white coat to the office next week" Peters