Thursday, September 15, 2016

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 means more to me than I can every tell you.


Monday, September 12, 2016

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.


Wednesday, September 7, 2016

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.....

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!!!!!!!!!