"Don't make me call Mindy"

Quick post to let everyone know that I'm not going to MD Anderson tomorrow (12/7) for treatment.   Side effects have been acting up in the last week or so, and I've been acting like they are no big deal.   But they have been getting worse, and bordering on what Dr. Patel would say is 'worrisome'.   Dasha said "Don't make me call Mindy".   That is the ultimate threat!!!!!!!   It's like President Trump getting ready to hang up the phone with North Korea, and saying "where is that nuclear football??" just loud enough so Kim Jong-bad haircut can hear him.  So I emailed Dr. Patel and her nurse, and they said to wait at least a week.   I'm in Washington DC next week for 2 days on business, so this is a probably a good thing and a blessing.   I gave the nurse the week of the 19th go get me back down to Houston, and I'll update when I have the appointments lined out.

Speaking of blessings..........I've tried to think of a way to express my gratitude for the Go Fund Me page, and after going through 10+ ideas, I decided to honestly tell a story......

So, I've had a stack of bills in my backpack for a while.  (yes I'm too old for a backpack, but I work with 20-30 somethings, and they give everyone a Splunk backpack when we start)   Some are from the surgery in November of 2015, some from MD Anderson, some from random treatment stuff.   As anyone who has had a bunch of surgeries or treatments knows, you get all kinds of bills long after the surgery.   (example......a company in Oklahoma that makes the surgical socks that compress and release on your feet during surgery)   So that stack had grown to a solid inch and a half plus if I set it on my desk.   I took that entire stack out and wrote checks to each and every one of them.   I can't express the lingering stress that stuff like that creates, and the GFM allowed me to pull them out, and be 100% done with them.   What a blessing......thank you.

Mike and Dasha

A LONG Day

The last couple of weeks have been a blur.   My beloved Chicago Cubs....wow.   I woke the girls up to watch the last 3 outs, and they asked why Daddy had tears in his eyes.   I smacked them both in the back of the head and sent them back to bed.   (I kid)   I could do 3 blogs on the Cubs, but I'll save that for another time.    A beautiful wedding in Hilton Head for Samantha and Ryan could not have been more perfect!    Then I drove to the North Central Missouri to the Kossmeyer farm......my happy place.   This could be another 4 page blog, but with Chris over my shoulder filming for Buckmen TV, I shot a 154 1/2" buck with my bow and it will be a show next year sometime.   Crazy.

So the 3rd of 4 nivo/ipi treatments was scheduled for 2 weeks ago and was pushed back because of some stomach issues and a bad cough.   Dr. Patel said it's from a 'lung toxicity called pneumonitis' and she started me on a Medrol DosePak.   That was finished last week, and the cough is better but still acting up.   Yesterday I was back in Houston at MD Anderson for the 3rd infusion.    Early flight out of Dallas and I did blood work at 9:00 am.   Then waited 4 hours and 20 minutes to be called back to see a doctor in the melanoma clinic.  (Dr. Patel was on vacation yesterday)   90 minutes in the little room in back and they sent me for a chest x-ray.   Then an hour later we are waiting for the doctor again.   She really left it up to me, asking about side effects, ect....and we (I say 'we' because Mindy really makes the final decision...........and no, I'm not kidding) decided we were good to go.   

Another 2 hour plus wait at the infusion center and a surprise visit from Dave, and we were called back at 5:15.   Luckily the nurse was on her A game when I explained we needed to go fast, but at the end of the day the nivo takes an hour, then 30 min observation, and the ipi takes 90 minutes.   Also time for getting drugs from phamacy, ect...   Finally finishing and running to the airport, I barely caught my 10:00 pm flight home.   Getting to the house around midnight.........that is a long day.   Thanks to Mindy for being my wing man, and always showing up with snacks!

One thing I wasn't going to mention, because I feel very odd about it, but I feel compelled to say thanks to so many people.    A few weeks ago my buddy Scott Posavitz sends me an email explaining he's already set up a go fund me account to offset expenses, and sends me a link.  How do I feel about this I kept wondering, then Mindy asks me about the last 5 surgeries and treatments, and how much we've spent over the last 8 years.   She said "God has this all under control, relax."     Soooooooooooo..........I get home that night and open a $1380 bill from MD Anderson.   The next morning I get an alert from Go Fund Me that the balance is $1630.     I think.......oh cool......a little more than that exact bill!   The NEXT morning I get an email from GFM........"one of the deposits into your account came from an unknown source, it will take a 7-10 business days to sort out, and we reduced the total to $1380."   Uh.........yeah........HE has this under control.    Thank you to friends and family and people I've never met.  I am humbled and blessed, and it means more to me than I could ever express in a blog.

Next week I'll post again, and the side effects should be in full swing......and with side effects you get COMEDY on the blog!!!!!!!!!

Mike
Go Cubs Go

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