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!

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

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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

**Treatment**

TIME WILL TELL

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...

MEN-1

(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

OR

     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: 

http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/multiple-endocrine-neoplasia/index.html

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

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!

It's a Jeep thing!

Caught my guy working on his Jeep in the hot sun!

He bought this baby in November of 2001!  It was one of those model year close-out sales.  

It has over 203,000 miles on it, is on its second engine, and Lord knows how many 'rescues'.

He almost always does the work himself, and when he doesn't, he regrets it!

This Jeep is still racking up the miles...

More catching up! -MRI results

During our last visit to MD Anderson (June), Albert had another MRI.

This time the MRI was looking at his brain! and specifically, his pituitary.  The neuro-endocrinologist suspected that Bert may have a tumor on or near his pituitary gland.  If so, the tumor may be causing pressure on the pituitary and ultimately, the actual cause of the hyperparathyroidism.

Let me backtrack a bit.

Remember that Albert was diagnosed with hyperparathyroidism way back?  This was before we knew he had cancer, and honestly, before he was even taking any of this stuff seriously.

Hyperparathyroidism is when the body is overproducing the PTH hormone.  To make a long explanation short, over time, it caused his hypertension, osteopenia and osteoporosis.

Usually hyperthyroidism is caused by:

     *the parathyroids malfunctioning

     *one or more parathyroids developing benign tumors

     *the pituitary could be sending erroneous signals to the perfectly healthy parathyroids

Initially, the doctors thought one of Bert's parathyroids had developed a tumor.  It took several tests to isolate the correct one, in fact, one of those tests led to finding the cancer.

Last December, (the same day they removed 10 lb Walter White) they also removed one of his parathyroids.

Fingers were crossed that the hyperparathyroidism would go away with it.  But it didn't.  In fact, it's as active as ever, making it very difficult to treat his osteoporosis.  His bone calcium keeps leaking out into his blood and eventually drains out through his urine.

That leaves two options, either one or more of his remaining parathyroids also has a tumor OR, the problem is coming from somewhere else.

The doctors believe it is being caused by another tumor, but not in the parathyroids, on the brain!

Ultimately, the MRI is helping answer the question, what is causing the hyperparathyroidism?

Man, I hope you guys are still with me!

Drum roll, please!  The results are POSITIVE.  Albert does have a 2mm tumor near his pituitary that is putting pressure on the gland and causing problems with his parathyroids.  Whew!!

So what does that mean?  

Best case scenario, he takes medication to hopefully shrink the tumor.

Worse case scenario, they surgically remove it through his nose (septum).

And just so we can prolong the suspense...we won't meet with the doctor to come up with a plan of action until September, possibly December.

Believe me, it has taken much processing on our parts to try to accept that this is where we are.  It's hard to comprehend that the big surgery in December was really just the beginning of our ride.  Funny how life is like that!  Lots of twists, lots of turns, none of the ones you expected.

Maybe that's why Albert loves riding his motorcycle through all those HillCountry back roads like The Devil's Back Bone.  All the unexpected curves and hills make it exciting and adventurous.  They get your heart racing and make you feel alive.

We will keep on taking it one day at a time, leaning into every turn, together.  You guys just keep cheering us on, thinking of us, sending happy thoughts, commenting, praying, etc.  it all helps!

A few more posts should get you all caught up...yes, there's more!

Thanks for checking in!

-Becca 

Initial test results!

Remember I told you that Albert recently had a CT scan of his radiated chest area? 

Well we got "results".

The radiation oncologist told us that the tumor still on his heart is smaller in size.

Before we jump for joy, let's agree to be optimistically cautious about that statement.

Prior to the test, we were told that the tumor could be smaller, larger, or even the same size.  However, size is neither an indicator of improvement, nor lack thereof.  And what does that mean?  It means that the size means NOTHING.  If you're thinking, Huh?  You are not alone.

Apparently, we are looking for 'cancer activity'.

AND, it currently appears that there is no activity.

Yay! Jump for joy, right!?!?

Not exactly.

The doc says that the radiation is still active and working.  Yep, Bert's still glowing!

Soooo, more waiting!  In September, he gets another scan, AND THEN we will know what all this cryptic talk means.

Still confused?  Yeah, us too.

Sometimes, news is just news.

So let's all collectively YAY!!!  No bad news!!!

Thanks for checking in...more catch-up posts coming soon...

Really, this is ridiculous!

My last post was June 6th?  Shameful, ridiculous, inexcusable!!!!!!

I owe you guys a post or six to catch you up on Albert's progress.

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So I'll start with our last visit to Houston, June 21st - 26th.

It was weird in that his appointments were scheduled for a Saturday.  That day included blood work, and a CT scan of the radiated chest area.  The place was like a ghost town!  

***NOTE TO ALL VISITING MD ANDERSON ON THE WEEKEND***

Patients with weekend appointments get FREE valet parking for the day!  Would have been nice to know that tidbit ahead of time, but at least now we know, and YOU do too!

We treated ourselves to a movie afterwards, and boy! Can I pick 'em!?!

Movie theater: hands down! The best we have ever been to!  

Movie itself:  Absolutely the most timely, yet so close to home that it took us a while to leave the theater...waiting for my nose to stop running and my tears to stop flowing.

The fault in our stars was incredible, and incredibly painful to watch.

The true gift was the profound conversations that took place all that evening.  We talked, we laughed, we planned, we cried.  Our reality is in front of us, Albert has a terrible cancer, with an über bleak prognosis.  But our lives are still filled with hope, and laughter, and plans for a future!  He's right here, right now and that's good enough.

Sunday, we relaxed and visited with our friend and wonderful hostess!

Monday thru Wednesday was a whirlwind of appointments with doctors and more scans.  We thought we would get more "news" but were disappointed.

Most notably, Bert had his last chemo cycle!!!  YAY!!

That last cycle was pretty brutal.  He had lots of nausea, exhaustion, stomach pain, coughing, and couldn't decide if he felt more like he had the flu or had gotten hit by a Mack truck.  Either way, the side effects lasted for about a week and a half, maybe a little longer.  

So, still not as bad as they could of been, or according to doctors, should have been!  Yay Albert, a real survivor!!

To end the visit, he received another injection to boost his immune system.  More than likely, the cause of much of the pain he was feeling.

Today, his only complaints are the persistent exhaustion, painful coughing, and shortness of breath when he attempts even the simplest of tasks.

Thanks for hanging in there and continuing to be part of our support team!

-Becca