Wednesday, September 24, 2014

Endocrine Assessment- Part 2: Blood Calcium

(pic: Bert and KC having a beer at Harry's in Alpine!)

Now it's time for a story...

Most of you are aware that MD Anderson is a teaching hospital.  So the normal process is that a Physician's Assistant will come into the room and go through the visit as though they are the primary doctor.  Ask questions, examine the patient; the whole nine yards.

Then s/he will leave the room, have a briefing with the doctor, and we don't see them again.  Sometimes never, because the PAs are transitional as they are still basically in school.  Later, the 'real' doctor enters the room and we start all over again. 

Most of the time, the PAs are spot on.

This time, she couldn't have been more wrong.  Albert's doctor came into the room and basically said...yeah, whatever she told you...DON'T DO IT!

It almost felt like we were being punked and I swear we must have been on candid camera, because he had an urgency when he told us.  I had him restate his words and so did was so weird.

Then we asked him a million and three questions because we were sooo caught off guard.

Even his side-kick student (the one that is not allowed to speak, but only observes), was looking surprised by what the PA had told us.

Basically, Bert is being taken off of some meds to see what his body does on it's own.  With the meds his blood calcium is perfect...the doc wants it to be perfect without meds!

Never a dull moment!!

Thanks for checking in!  

Endocrine Assessment- Part 1

Our current mission is to manage Albert's MEN-1 (Multiple Endocrine Neoplasia-Type 1).

For the next six months, and the REST OF HIS LIFE, we are monitoring disease activity through symptom awareness, frequent blood work and periodic scans (CT and MRI)

Remember, LEAST INVASIVE is always the preferred treatment!


Let's go back to the pituitary tumor we told y'all about this summer.

Tuesday's labs indicate that the pituitary tumor is a prolactinoma.  (an adenoma that is producing the hormone, prolactin)

The only reason they think it is a prolactinoma is that his prolactin level is infinitesimally elevated; barely out of normal range. AND there are no other hormones out of normal range, so this is a theory based on experience.

If this tiny tumor is producing prolactin, which is not needed, Albert's testosterone level will drop.

BUT THAT'S NOT HAPPENING HERE!!  His testosterone level is excellent...and honestly, I didn't need a lab test to tell me that!! LOL



They will do more lab work in December to see if there are any hormone level changes AND they will re-scan the tumor in early Spring.

The good news is that the tumor is NOT affecting his parathyroids and PTH production like previously suspected.  More on that later, but for now, it's good news.

Thanks for checking in with us, we are truly enjoying our family time...


(pic: Kasey's 'new' Honda Rebel, AKA: Graduation Gift)

Back in June,  one of the results I neglected to share is the genetics research on Albert's DNA.

His DNA has been traveling for 7 months; across the country, then out to Sweden and back!!

The reason he is getting all these tumors (thymus, parathyroid, and pituitary) has been detected/confirmed.

He has a syndrome called MEN-1 (Multiple Endocrine Neoplasia-Type 1).

MEN-1 is NOT CANCER.  However, it causes tumors to develop throughout the endocrine system.  Sometimes the tumors are innocuous, sometimes benign but troublesome, and sometimes cause cancer.

About now, you may be asking: How on earth did he get that????

I'm soooo glad you asked!!!!!

He got it in one of two ways:

     1. genetically from one or both parents
     2. he has a first generation gene mutation that occured in utero (while he was in his mama's belly).

The only way to know for sure how he got it is to have his parents and siblings tested for the same gene mutation.  The family has the option to be tested. (simple blood test)

The scary part for us is that since he has it, our children have a 50% chance of inheriting it from him.

The kids are here with us this week because they are getting their turn becoming MD Anderson patients.  They were assigned to the Endocrine Center for genetics testing.  By simply giving blood samples, a whole battery of tests can be run to determine if either of them inherited the genetic mutation, AND if so, determine if they have any indications of possible (and hopefully early) disease activity.

Remember, MEN-1 is NOT CANCER.  However, if either of the kids does have the syndrome, we will be able to proactively and aggressively prevent lots of problems!  Through routine blood work and occasional  scans, we will be able to address anything that comes up, while it's still small, before it becomes a bigger problem.

For more information on Multiple Endocrine Neoplasia, please visit the MD Anderson Website:

I think we are all caught up from the June visit...let's move on to the here and now...

Tuesday, September 23, 2014

Back in Houston!

Back in Houston, but this time...with our sweet kids!

Today was a doozie...started at 4:30AM, and just kept going.

Snuck in some family time and a movie!

Today included a head to toe CT scan and labs, meeting with the endocrine team, and setting a schedule for the next few months.

Apparently, I stole the show when I fell asleep in the waiting room during Albert's scan.  According to my daughter I was causing a scene as I was sleeping in a recliner so soundly,  that I was snoring with my mouth open...LOUDLY...and causing people to stare.  A kindhearted nurse took pity on me and covered me with a warm blanket.  I subsequently began to snore LOUDER!  All I know is that I had a pretty good and interesting dream.

Unfortunately, Albert's day tuckered him out and he took an afternoon nap while the kids and I did our grocery shopping.

He woke up this evening, worked, yes, I said WORKED, then passed out again, not too long ago.

I'll let y'all know the medical stuff tomorrow, I'm wiped out as well!

Nite-nite and thanks for checking in!