Today is the day...we are all checked-in and ready to get rid of a NET tumor behind his lung and several nodules on his diaphram...
Gonna kick cancer's ass, again...
Showing posts with label MEN1. Show all posts
Showing posts with label MEN1. Show all posts
Thursday, January 7, 2016
Wednesday, March 25, 2015
Endocrine check-up
( pic from: http://faculty.mdanderson.org/Mouhammed_A_Habra/ )
Can I start off with an AMEN!?!?!
I love me some Dr. Habra!! He is an amazing doctor!!
His first comment to Albert was..."You look great". He stated that compared to the last time we saw him, last summer, Albert was looking tired and haggard, but this time, he looked sooo much better.
Think about it! How many doctors would remember how you looked 9 months ago?
Albert was very impressed and happy to know that this doctor took that much time to review his previous notes and jot down enough detail in his notes in the first place! MD Anderson does a great job of acquiring superb doctors/nurses/staff.
All in all, the preliminary lab results showed that everything was looking great and the doctor was pleased with Bert's progress. More detailed lab results would be available after the visit AND the bone density scan was also scheduled for after, but Dr. Habra was very happy with Albert's overall status. If anything of significance comes from those data, we would be hearing from him, but then again, we always get the actual written reports from every procedure.
It was a quick, but very pleasant and positive appointment.
We are so lucky to be in such a wonderful cancer center.
Thanks for checking on us!
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More clinical information:
Remember that this syndrome is a very complicated and very rare disease that is inherited.
It has a knack for affecting most patients in the parathyroids, the pancreas, and/or the pituitary gland.
Albert's disease chose to first present in an even rarer spot, his thymus (cancerous: Neuroendocrine Carcinoma). Additionally, he had more traditional symptoms including: an enlarged parathyroid (non-cancerous: Adenoma) and still has a very small growth on his pituitary gland (non-cancerous: Prolactinoma).
The most effective, least invasive way to keep checking on these tumorous areas is to monitor Bert's hormone levels. On three month intervals, we are specifically keeping track of his ParaThyroid Hormone (PTH) and Prolactin hormone activity.
Of course, all of his hormone levels are tested, but these hormones are very important indicators for the tumors that are already active in his thymus, parathyroid, and pituitary. These are what I refer to when I say: disease activity.
And then it gets more complicated!!
THYMUS
The thymus tumor grew into Bert's heart. So even though the tumor is still there, the radiation and chemo knocked out the cancer last summer, hopefully forever (his primary oncologist checks on this one today).
PARATHYROIDS
One parathyroid has already been removed, but he still has 3 more. When these are producing too much PTH, they also trigger his bones to release more calcium than they should. The calcium leaks out of the bones and into his blood and eventually out his urine. The problem with that is that our bones need their calcium!!
Yay! Albert's blood calcium was at the high end of normal. BUT it was still normal! On its own, without medication. YAY!!
The bone density scan yesterday will let us know if his spine (osteopenia) and hips (osteperosis) are improving/staying the same/deteriorating. We will get those results in the next few days.
The PTH results should also be in today, but weren't available for the actual doctor visit.
PITUITARY GLAND
In addition to checking his prolactin, they also check Bert's testosterone levels. When the prolactin shoots up, the testosterone tends to drop. By checking both hormones, we can keep better track of any problems as early as possible.
Dr. Habra will only scan his pituitary yearly to avoid any potentially harmful effects from too many MRIs. His next scan is already scheduled for September.
You actually made it to the end??!!?? I am very impressed...you are a SUPER follower!!
Thursday, November 20, 2014
Finally! Some great news!!
It took forever to find out, and of course, there was DRAMA!!!
The genetic counselor called the house looking for Jacob one afternoon. But, he was at work!
Albert was still on the phone, getting NO information, because both kids are adults over 18, when Kasey started calling on the other line. Apparently, she wasn't gonna wait and she called my cell phone. She was crying and I was scared to death because I thought it had to be bad news!
But it wasn't, her tears were tears of relief! She felt so happy that she was in the clear!
The counselor left a message for Jake to call her back! but since he works every night until 10, we knew we weren't finding out that day, <sigh>!
The next morning he called, got voicemail. Then called in the afternoon before he left for work, got voicemail, <double sigh>!!
Seriously, by the next morning, I was a nervous wreck! I was cranky and harassing Jake until he called again just to appease me, you guessed it! We got voicemail AGAIN! <triple sigh>!!!
Jake was getting ready to head out to work and he stops to tell me, "oh yeah, I forgot to tell you, Ms. Jackson called"...pause...sad puppy dog eyes...I'm a ball of nerves...he's formulating his speech..."she said I'm negative!"
Let me tell you! I was screaming and wanted to kick his scrawny butt to the moon!
Dammit! We were on pins and needles for almost two full days...
How could we be happy that KC was in the clear, but what if Jake wasn't? We couldn't celebrate too hard for her and make him feel like crap if his news wasn't good...
Torture is the only way I can describe it.
Let me tell you!
The celebration, elation, relief, utter happiness was indescribable! They weren't gonna have to worry about this dreadful disease that was slowly taking their daddy!
Our family genes give us enough to worry about! Diabetes, high blood pressure, heart disease, obesity...the list goes on! At least there is ONE they wouldn't have to worry about!
The best part is that they also can't pass it on to their kids! It's not recessive/dominant.
Albert's DNA had an omission that my DNA filled in! Now they can only pass on the complete strand.
Thanks for all the prayers, I know they helped!
(P.S. I haven't forgotten to tell y'all about their day at MD Anderson, but I will, SOON!)
Friday, October 31, 2014
It's REALLY been a YEAR!!!
 |
| Our Halloween Graveyard 2011 |
Happy Halloween Everyone!!
And Happy One Year Anniversary to my best friend: Albert!!
One year ago, today, yes...on Halloween Day, the endocrinologist called Bert and gave him the bad news. It was a big word...CANCER...followed by another...hard to hear/pronounce/swallow diagnosis... Neuroendocrine Carcinoma....I had to write it down...to remember it.I remember the fear.
The immediate zap of hope and future...all in an instant.
We got off the phone and looked at each other in complete shock.
The rest is sort of a blur...
I don't even remember if we hugged, or cried, or even spoke.
I do remember that we turned off our front porch light that night...no trick or treaters that day...we couldn't even handle the door bell ringing...
So here we are...one year later...and according to all the statistics...Bert is one living freak of nature...ok, a miracle!
He survived...against the odds...he is among the living and we will take that bet any day!!!
Thank you friends, family, and followers who have supported us along the way...it means so very much to both of us!
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| Woody and Jessie-2013 |
The oxford journals has more on the survival rates; but to sum it up, the 5 year survival rate for his specific tumor type/location...is 0%.
Next Section
Sunday, October 12, 2014
Radiation Follow-up!
(photo: hauling KC's bike to Alpine)
The radiation follow-up visit was interesting.
The big concern was this lingering cough, and of course, the fluid in the lungs...but the damn cough that wouldn't go away was just getting deeper, more painful, more forceful, just not fun.
Albert was complaining that when he coughed he felt like someone was jabbing him in the back, sometimes stabbing him with a very sharp object. Additionally, sometimes he would cough so hard that he would pop his own back...talk about pa-in-ful! OUCH!
So the radiation oncolgist decided to give him a steroid, since the fluid had just been drained, maybe it would give him just the right amount of strength to give his lungs a break AND all those muscles that were sore from coughing for 3 months straight.
THE ABSOLUTE BEST PART was when the doctor said he was gonna put him on steroids, Bert VERY straight faced asked the doctor..."but doctor, does this mean that I'm never gonna be able to compete in the Olympics?"
This is the "god complex" doctor I told y'all about, plus he had 2 observing doctors from China and 1 PA from Australia in the ΓΌber tiny room, both our kids and us...HE WAS SPEECHLESS!!! It was priceless!! (think...exam room the size of an elevator and a momentary AWKWARDness...7 adults all looking at the doctor waiting for an answer...)
Of course, I busted out laughing, and the doc was able to make a nice recovery, explaining the difference between anabolic steroids and what he was prescribing...it was really hilarious for that moment when all 4 professionals in the room couldn't tell if Albert was asking a real question, or just kidding...it was freakin' funny!!
To top it all off, when the doc said, prednisone, Albert thought he said, pregnizone!!! I can't imagine what was going on in his head at that moment...you said, preg- what??? LOL
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Fast forward to today...he's already tapering off the steroids and there is no cough to be found!!
It's been A-MAZzing!!
Thanks for checking in...next time, I'll tell y'all about the kids' first visit as patients!!
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