The Consultation...

...or the 24 hour whirlwind trip to San Antonio to see the sights and sounds of a possible clinical trial.

We flew out on Sunday evening and arrived in San Antonio after midnight CST. We flew back Monday night and arrived home after midnight.
We did manage to go for a walk prior to the consult on the famous Riverwalk. We also ate dinner prior to our departure at Boudro's Texas Bistro. Needless to say, I can eat. This boy has quite an appetite.

The true highlight of our trip!

This is the lobby of the START Center (link is active)

The Consult

Dr. Papadopoulos (see Profile HERE) examined me, reviewed my records and scans, and discussed possible treatments for me. Here is a synopsis:

• My condition has no cure although targeted therapies are in development. No miracles...yet!
• He wants me to remain on Sutent for as long as it remains effective and I tolerate the drug (so far, so good!).
• He wants to see my next scan results, scheduled for February.
• He gave us information on two clinical trials he believes would be good fits for me. If we decide to participate in a clinical trial, I would need to be off current treatment for 4 weeks. 
• He wants to examine tissue from one of my tumors, possibly from my initial liver biopsy from July 2011 if any tissue samples remain. If not, he suggested that another biopsy might provide him with a closer look at the genetic makeup of the tumors which will help him narrow possible treatment options.
• He proposed that, should the tumors outside the liver (pancreas and pelvic area) remain stable, a therapy specific targeting the tumors in my liver might be considered. 
• He is going to consult with Dr. Zu and together develop a course of action that will factor in contingencies (i.e., possible next steps). 

It is reassuring to know that Dr. Zu has been spot on with his treatment and the possible therapies out there for us to consider as possible next steps. And it is exciting to know that Dr. Zu will now have a direct line to Dr. Papadopoulos who is on the Clinical Front Lines. My treatment team has now grown!

We wanted to thank everyone for their unwavering love, support, and encouragement. 

I want to leave you with a quotation from Malcolm Gladwell's David and Goliath, which I devoured on the flights to and from San Antonio:

"Courage is not something that you already have. Courage is what you earn when you've been through the tough times and you discover they aren't so tough after all" (149).

Here's to love, life, friendship! Happy Holidays and a Joyous New Year to all! One step, one moment at a time!

With love, respect, and admiration,

Andrew 

Update and Clarification

I am officially on break for Thanksgiving. I finished out the week at school which was important for me emotionally, mentally, and spiritually.

Christine and I wanted to thank everyone for their concern, encouragement, and help during this latest challenge. Special thanks to the St. Greg's Cancer Support Ministry for providing us with meals for the last three days, particularly Sandy and Ken, Mary, Meghan, and Margaret, among others behind the scenes.

Clarification

Because my condition is "complex," I wanted to offer the following clarification.

As a result of my recent hospitalization, three major developments have come to light:

1. The Neurological Implication

Keppra, or as I prefer to call it, "Kryptonite," is not the anti-seizure med for me despite the insistence of at least two doctors who took an oath to do me no harm.  I am grateful for Dr. Zu (not "Zoo") and Dr. Miradi and, more importantly, their knowledge of me and their understanding of their oath. But, hey, I am an "interesting" case that some doctors see as a reason to run unnecessary tests. But I am just me (in this situation, one of the 2% who have an adverse reaction to "Kryptonite," or an elephant, I suppose - see The Story of the Six Blind Men.

I see Dr. Gao, one of the blind men entrusted to my care, for a follow-up on Wednesday, 25 November. We will discuss alternatives to the Keppra. Of note, following VP Shunt Surgery in 1993, I took Dilantin to prevent seizures (I have had one seizure in my life). After an EEG in 1993, my neurologist - stated in my medical records - suggested that I should be weaned off anti-seizure meds. My neurologist then didn't need to read braille, I guess.

I have no objection to taking an anti-seizure meds (my most recent EEG shows a prevalence for seizures) providing that (1) my medical team ("The Zu Keepers") agrees that this is prudent (and not just one blind man fumbling his way around his medical opinion; and (2) I tolerate the med well.

More on this later.

2. The Tumor Implication (Or the "C" Question)

Regardless of whether I was hospitalized last week or not, I was due for a routine scan. (Gee, my last two scans have been fun ones, eh? A blind man must have read the ones before that because they "missed" the growth they discovered this past summer that had apparently been there).

This latest scan did reveal a new tumor in my liver (about 12 mm in size) that was not on my previous scan. (I have some additional questions for Dr. Zu regarding my latest scan, but won't see him until 11/30).

I will start Sutent, another drug therapy designed to limit the growth and spread of the tumors, on Tuesday or Wednesday of this upcoming week (can't get this drug over the counter!).

Good thing about my condition is that the tumors grow very slowly. I had been on Afinitor for four years, far exceeding the expected efficacy of the medication. Sutent is another known therapy that Dr. Zu and I had discussed. We anticipated that Afinitor would eventually lose its efficacy and would need to go on a new therapy.

Bad thing about my condition is that it is, ultimately, not curable. As Dr. Zu reminds me, cutting the tumors out will not cure me. After Sutent, not really that many options exist (although there is at least one other that we know of). So we will move forward, maintain current status for as long as possible, and explore - with Dr. Zu's blessing and encouragement (did I mention he honors his oath?) - the clinical trial(s) in San Antonio.

3. The Clinical Trial Implication

Christine has had multiple conversations with the nurse coordinator at the START Cancer Center in San Antonio, one of two hospitals running these clinical trials (the other is in Chicago). They have my medical records. Two doctors have read through my records and are interested in me, namely because of the combination of TSC and neuroendocrine tumors. They actually have several trials for Pancreatic Neuroendocrine tumors. We have a consultation in San Antonio on December 21st.

Meanwhile, we are looking into insurance coverage for a possible 8-week stay in San Antonio, one I hope we can hold off until summer. While the cost of the medication is covered, the doctors' services and tests are NOT. More on this later as well.


I feel well. I am confident that the new medication will do its job, and I know that, should the Clinical Trial work out (should it be meant to be), that I will help doctors learn to help someone else in the future with pancreatic neuroendocrine tumors. Who knows, this may be my raison d'etre.

I am grateful for my beautiful wife, Christine, for my family, for my friends, for my colleagues, for access to the best "material" solutions and doctors (even the blind ones), and for a belief in that which extends beyond the "material," the unknown power of faith that drives me everyday.

With much love and joy,

Andrew

Update - I am Home!

This will be brief - for now:

I was released from the hospital this afternoon and am home.

Key findings:

• Prevailing thought is that neutropenia / low absolute neutrophil count was the result of complication from anti-seizure med. I have been taken off the medication and will consult neurologist for next step.
• My numbers have improved significantly since I have been taken off the anti-seizure med.
• I feel well - just emotionally fried right now.
• I am cleared to return to work! 
• I had my monthly injection of Sandostatin in Dr. Zu's office and will schedule appointment to see him this week (he was unable to see me due to the time I was released). Many questions linger about latest CT Scan results (interpretation, findings, etc.) and treatment moving forward.

Dr. Miradi, Infectious Disease Specialist Extraordinaire, suggested following two simple steps to keep from catching colds and flus:

• Gargling with tap water three times a day.
• Getting vaccinations!

That's all for now. Happy to be home. 

Thanks to all for love, encouragement, and support!

One step, one moment at a time, we will endure!

Love,

Andrew and Christine

Who Can It be Now?

I don't know why, but for some reason, song lyrics pop into my head whenever I try to make sense of the craziness that has been my life for the last four years.

I am currently at Sharp Grossmont Hospital, this time in a room with a view.
Christine and I came over on Saturday when I spiked a fever of 1:02.2. My last blood draw - Thursday, November 12 - showed that my WBC was very low (1.6), placing me at risk for opportunistic infection. Upon arrival to the hospital, my WBC increased to 2.8, but the Absolute Neutrophil Count (that shows how many young white cells are hatching) was critically low.

My neurologist put me on Keppra, an anti-seizure med, on October 19, after my EEG showed abnormal activity on the left side of my brain. In 2% of patients who take Keppra, neutropenia (fancy term for low WBC) is a possible side effect.

So, the doctors decided to take me off Keppra, monitor me, and run additional tests. I had a CT Scan of my chest, abdomen, and pelvis yesterday.

I have not had a fever since my admission and my WBC is up to 3.2.

However (and this is HOWEVER), Dr. Zu visited me this morning and reported that my CT scan showed a small (as in like, 12 mm) new growth in my liver. He believes that this is a progression of my cancer and that my current treatment of Afinitor has run its course. He wants to start me on Sunitib (don't read about it because that shit will only make you depressed), an inhibitor much like Afinitor. He is encouraging us to pursue the clinical trial (see post HERE to find out more about the trial).

In the meantime, I am scheduled for a bone scan this afternoon to rule out bone marrow involvement.

Zu wants me to stay at least one more night (joy), but without any additional complications (and with me, that is not always a given), I hope to be released tomorrow.

Gotta get back to work.

So, when Zu knocked on the door this morning, all I could think of was, "Who can it be knockin' at my door?" by Men at Work (see "Who Can it Be Now?"). Hey, at least it ain't, "Knockin on Heaven's Door," right?

Staying positive. We will prevail.
Call or text at 619-857-1332 if you wanna reach me.

(By the way, hospitals are boring as dirt!)

With love and respect,

Andrew and Christine

Update: I am "neuronal" and Other Wonderful News in the Intricate World of Andrew

Today, I had two appointments: one with Dr. Gao, my neurologist, and one - I thought - with Dr. Zu.

I will start with Dr. Zu:

It was one of those days when, apparently, I am scheduled to get my monthly shot, but not see him. I just love the new insurance regs which require that I receive my treatment  - a shot which lasts as long as it takes to expose my glute for the nurse to inject a syringe - and see Dr. Zu on separate days. I did stop in to tell Dr. Zu that I would call him with information regarding the clinical trial. He is good at returning my calls. 

More information on the clinical trial soon.

Now on to Dr. Gao:

The EEG I had last month revealed abnormally high activity on the left side of my brain which suggests that I am at an increased risk of having a seizure. Of course, a grand mal seizure precipitated my brain surgery back in 1993, after which I was on an anti-seizure med for about two years. Dr. Gao prescribed Keppra, an anti-convulsant medication with a whole new set of funky potential side effects. Needless to say, we were not expecting this news. But Christine and I will persist and not let this deter us from our mission: to live each day with love and reckless joy.

I will keep you posted.

With love and gratitude,

Andrew and Christine

Update September 24, 2015

The school year has arrived full force and with it, the challenge of teaching a new class, revamping my curriculum (I never teach the same year twice), and trying to remember not to sweat the small stuff.

After our trip to Mammoth, I contracted a respiratory infection that took a while to clear up. Christine and I figured that due to my compromised immune system, it just takes me longer to respond to antibiotics. Glad to say that I am healthy and happy.

We celebrated the end of the summer with a bonfire, wonderful friends and family at La Jolla Shores. Of course, the first day in over twenty years I spend any substantial time at the beach (aside from running and swimming), they close the beach to swimming due to a shark sighting. When we decided to have a bonfire, I immediately thought of La Jolla Shores. But because you can't reserve a fire pit, I got up at the crack of dawn and arrived at the beach at 6:00 a.m. - the 6th person there. Naturally, there are only five pits. So I just parked it on the sand next to the pit with only one "claimant" and negotiated sharing the pit. We had a blast. My friend, Joe, former Fire Chief Extraordinaire, was a bit concerned when I piled on wood to an already raging fire. I told him that it was 'cathartic' and my 'reward' for having spent 18 hours at the beach.

I had an appointment with my neurologist, Er-Kai Gao, earlier this month. My primary care physician thought that I should see Dr. Gao because I have only seen him once in four years (back when I was diagnosed in 2011). Dr. Zu has managed my TSC (ordered scans, tracked the status of the tumor in my head) since 2011, so it was good to actually sit down and meet Dr. Gao, an important member of my medical team. (See, people like me have "teams" looking after them). He conducted an EEG to assess the functionality of the neurons in my brain. After attaching something like 50 electrodes to my head, the technician subjected me to various stimuli while the computer tracked my brainwaves. These stimuli included opening and closing my eyes, flashing lights of increasing frequency, breathing in and out rapidly for 3 minutes, and 'sleeping' for about 50 minutes (which you can't actually do). I will see Gao October 19 for a follow-up.

I saw Dr. Zu on Monday, 21 September 2015. He came into the exam room all a-flutter with excitement and eagerly shared with me news of a clinical trial for a new medication that has shown much promise in the treatment of Pancreatic Neuroendocrine Tumors (PNETs). Dicerna Pharmaceutical out of Cambridge is conducting the clinical trial for DCR-MYC in Chicago and San Antonio. I have contacted the company to see if I may participate in the clinical trial. (See Overview of Clinical study HERE). Aside from the potential benefit to me, I am interested in contributing to knowledge of PNETs so that we can be one step closer to finding a cure (PNETs can be managed, but not 'cured.'). I will keep you posted. Needless to say, this news was heartening.

My blood work, weight, and other vitals all look good. I had my monthly shot of  Sandostatin, which I seem to be tolerating well.

I am appreciative of each day and vow to make each day great. Thank you for your love, friendship, and encouragement.

With much love and respect,
Andrew

New News is Old News: The Fourth Scenario

Dearest Friends, Family, and Colleagues:

Today is a wonderful day for three reasons:

(1) Christine and I celebrate our 9th wedding anniversary.
(2) It is my dad's 89th birthday - Norman Charles Myette.
(3) We are surrounded by wonderfully amazing friends, family, and colleagues!

And now for news from my appointment this morning with Dr. Zu.

The fourth scenario, or the one a wiser person suggested this morning prior to my appointment:

The "curve ball" that concerned Dr. Zu so much has been there for a while. Radiologists who view and report on my CT scans simply did not "see it." Say what?????? Because the focus during my CT scans has been on the tumors on my pancreas and liver, the radiologists did not detect the presence of this growth. A careful 'reexamination' of past CT scans revealed that this growth did not just show up in the three months since my last scan which is what initially concerned Dr. Zu so much.

Dr. Zu described the growth as the same type as the ones on my pancreas and liver, but added that it is somewhere between 'malignant and benign,' one of those funky TSC/neuroendocrine/cancer things that make my case so 'interesting.'

He recommended following the same course of treatment that we have followed, successfully, for the last four years:

• Afinitor (pill) daily 
• Sandostatin (injection) monthly
• CT Scan/MRI every three months

Of course, in addition to my benign brain tumor, bone sclerotic (benign) on one of my ribs, a calcification on my kidney, and the neuroendocrine tumors on my liver and pancreas, he will track the status of this 'new' tumor in that area we will call the 'in-betweenis.'

He added that surgery or zapping it (1) will not cure my condition; and (2) will only cause additional complications.

So, the good news is that, yes, I have a cancer-like growth I did not know about, but which can be managed.

I have got to write a book! By the way, Dr. Zu and Dr. Lajin have discussed my case and agree that they should document it because, in all likelihood, they can apply what they learn from me to help others. And, this to me, is so important.

Next up:

Blood work (yes, tomorrow or Friday).

Sandostatin injection on Monday. A shot in the glute has never looked so good, let me tell you!

Christine and I did discuss celebrating life, love, and friendship. Perhaps a bonfire is in order! Stay tuned for details. 

With relief, belief, disbelief, release of grief, gratitude, love, respect, and heartfelt thanks,

Andrew and Christine

Appointment With Dr. Zu Tomorrow (Wednesday) at 10:30

Friends, Family, and Colleagues:

Dr. Zu’s assistant called this morning to set up an appointment with him tomorrow, Wednesday, at 10:30 a.m.

Please send positive thoughts, prayers, vibes our way!

One thing I know for sure:

I will get past whatever is put in front of me.

With love,

Andrew 

Three Possible Scenarios

Dear Friends, Family, and Colleagues:

Some clarification regarding the initial biopsy results and what they mean. Of course, I am not a doctor.

As we see it, there are three possible scenarios at play here. Because of the unusual relationship between Tuberous Sclerosis Complex, neuroendocrine tumors, and cancer, we have to wait for the full pathology to see what the exact nature of this tumor is.

The three possible scenarios are:

·         The tumor is coincidental and benign. Not all neuroendocrine tumors are malignant. In fact, most TSC neuroendocrine tumors are not.

·         The tumor is coincidental and malignant.

·         The tumor is a metastasis of the pancreatic neuroendocrine tumor (malignancy).

We do know that it is “low grade” according to the GI Guy.

And it is difficult to say that the tumor is a recurrence of cancer because the nature of  my cancer (a pancreatic neuroendocrine tumor)  is such that I will never be in remission.

The good news is that we have caught this early and that the tumors on my pancreas and liver remain static.

I am scheduled to see Dr. Zu on July 27^th for my regular monthly appointment. However, it would not surprise me if he wants to conduct a series of additional tests this week before we decide on a treatment direction. Of course, speculation is the enemy of happiness and contentment, so I am happy to spend time with Christine, soaking up this monsoonal weather. Of course, with faith and the right mind-set, we can weather any storm, right?

Thank you for your prayers, good vibes, and positive thoughts. I will post more information as we find out more.

With love,

Andrew

Preliminary Biopsy Confirms Neuroendocrine Tumor

Dear Friends, Family, and Colleagues:

It has been an exhausting day, to say the least.

The short and quick news is that the preliminary biopsy confirms that the growth, located between my rectum and bladder (below the seminal vesicles), is a neuroendocrine tumor. We will not know the full pathology for at least a week. I plan on calling Dr. Zu on Monday to discuss these preliminary findings, and to formulate a plan of action.

What makes this confusing is the nature of neuroendocrine tumors. The one on my pancreas and the one on my liver are malignant, but have been treated successfully for four years with Afinitor. Tuberous Sclerosis, with which I was diagnosed in 1979 when I was 12, can also result in neuroendocrine tumors (and SEGA tumors, a benign tumor I have in my brain). Dr. Zu believes that the genetic expression of my tumors is determined by my Tuberous Sclerosis.

What we know tonight that we did not know before is that the tumor in question is a neuroendocrine tumor.

Beyond that, we will see what Dr. Zu and the full pathology report shows.

So many of you have supported Christine and me through this trying time. A hearty thank you to Margaret, Sandy, Will, Joe and Sharon, Andy and Erin for being with us today.

I assure you that I am resolved in my faith and belief, and am prepared to confront this challenge with vim and vigor.

With love,

Andrew

Biopsy is Tomorrow

Dear Friends, Colleagues, and Family:

Well, this makes it "real" as Christine said. Brings us right back to where we were four years ago when this whole thing began. It is too surreal...

I saw Dr. Lajin today for my consult.
He showed Christine and me the CT Scan, but neither of us could even see what he was pointing out.
He confirmed that there is a "growth" between my rectum and bladder (what a good friend calls the "in-betweenis").

In order to determine the exact nature of this "growth," Dr. Lajin will probe the area with an ultrasound camera that will provide a clearer picture of the "growth." In addition, Dr. Lajin will use a needle to extract a sample of the tissue for pathological examination.

I will be under conscious sedation.

A pathologist will be on hand to monitor the ultrasound.

I will complete a cleansing routine tonight and tomorrow (hello porcelain!).

Initially, when Dr. Lajin checked his schedule, he was booked until the 28th. Somehow, he made tomorrow work.

Needless to say, Christine and I are doing what we can to manage the reality of this situation.

We plan to go to Boll-Weevil in Santee tomorrow after the procedure. Nothing like a good burger after a probing experience!

With love,

Andrew

Good News...

... Dr. Lajin had a cancellation and I will see him for a consult tomorrow at 2:15 p.m.

Amen! Bring it on, Baby!

Andrew

Referral Has Landed

Good news: my referral to Dr. Lajin has been approved.
Bad news: my appointment is July 29 - two weeks away - although I have been placed on the "waiting list" should someone cancel.

Let's hope for a cancellation!

Andrew

Label Me an X-File

Friends, Family, and Colleagues:

If I am an X-File, then Dr. Zu must be Fox Mulder!

Dr. Zu called me this morning to discuss this latest "curve ball":

• Growth is non-calcified, about one (1) inch in size, located between my rectum and urethra.
• He does not believe that this growth is medication related, but really does not know what it is (see note above regarding X-File). Perhaps I was abducted by aliens...
• He referred me to Dr. Lajin who will most likely probe the area (think alien probe here a la X-Files) and, through a needle aspirate, determine the nature of the growth.
• I will know more once I have had my consult with Dr. Lajin.

I find peace in the knowledge that each day brings us one step closer to knowing. As Christine often reminds me, we cannot base our feelings off of speculation. Let's get on with this, I say!

Much appreciation to all for your continued love, prayers/positive thoughts, and encouragement!

With love,

Andrew

Referral is in Motion

Thank you for the wonderful support and encouragement during this uncertain time.
Dr. Zu called to inform me that he has referred me for a urological consult and, eventually, biopsy, and that I should hear from the urologist by the end of the week. Dr. Lajin, the gastroenterologist / urologist, is the same doctor who got to know me very personally last year - he performed the colonoscopy and endoscopy to rule out possible bleeding in my GI tract when I suffered from anemia.

I wanted to add that when I think about writing a book about my life, I never once thought I would actually have to write the word "rectum" in reference to my medical experiences.

In the meantime, Christine and I continue to trust that God will carry us through this latest challenge. Ain't nothin' to worry about until there's somethin' to worry about.

Please continue to send your prayers and positive thoughts our way! We appreciate them more than you may know.

With much love and hope,

Andrew

I Never Could Hit the Curve Ball

Friends, Family, and Colleagues:

As you know, I have been experiencing some minor discomfort on my right side that had me a bit concerned. I saw Dr. Zu on June 29 and he ordered a CT Scan which I had on July 10th.

He called me this morning and reported that the scan revealed a "curve ball," a growth between my rectum and my bladder. He is going to consult a urologist to schedule a biopsy to determine the exact nature of this curve ball. This growth is new and did not show up on my last scan in March. The good news is that the tumors on my liver and pancreas have not changed in size.

I would ask for those of you who pray, to pray for us. 

For those of you who don't pray, please send positive thoughts our way.

This is just some more "shit" and "piss" in the life of Myette. We will make it through this. 

Stayed tuned for more information.

With love,

Andrew

Update - 1 July 2015

Today marks the 4th anniversary of my diagnosis. I am fortunate to have access to the best medical care, or more appropriately, doctors who are aware of the most effective medical treatment available to me. Dr. Zu has been a blessing, for sure. And to all of you for your support, encouragement, and love, I am eternally grateful.

Update:

I will have a CT Scan on July 10th to assess the efficacy of my treatment.
In addition, Dr. Zu wants to run another blood test prior to the scan because some of my numbers (i.e., platelets) were off.

And a gracious thank you to Sharon and Joe Duffy whose wisdom during my time of angst has provided Christine me with greater peace of mind. Ain't nothing to worry about until there is something to worry about.

Happy July 4th to all!

Andrew

Prefrontal Madness

Or perhaps the evils of an idle mind....

Speculation makes us human, but is a slippery slope when it comes to happiness. So because I have had some minor aches and discomfort on my right side - yes, where my tumors are located - and I have had time to ponder the possible reasons, I have struggled the last several weeks with angst and uncertainty. Sleep has been dark and unsettling, my perception melancholic and heavy. Christine quips, "Bitch at me, wait and see," while I add "Bitch at you, talk to Dr. Zu." And so I retreated into this funk until today when I saw Dr. Zu which helped to allay some of my fears.

Here's the scoop on my health - (it's good!):

Generalized aches are difficult to pin down and could easily be side effects from my medication. Dr. Zu is pleased that I am eating well (ain't no doubt about that!) and am physically active.

It is time for my regular CT scan (every three months), so Dr. Zu will schedule one before I see him on July 27, 2015.

My WBC is good.

My platelets are a bit low, which may explain some of my fatigue.

I had my monthly Sandostatin shot.

I made a commitment to Christine not to let my angst get the better of me so I will no longer "bitch at her" and " let my anxieties defer." It is tough enough to live with me never mind when I am sullen! It isn't easy living with cancer. But as Christine says, "No one gave us a handbook on how to deal. We're wingin' it."

I start my summer job tomorrow. I will tutor four hours a week at the SDSU Community Reading Clinic.

And I will continue to stay active - running and walking regularly.

Please send positive thoughts our way.

With love,

Andrew

An update and a box of soap

Dearest Friends and Family!

Good news:
Received my Sandostatin injection yesterday. My vitals are good. I am maintaining my weight, staying active, and eating well. Hard to believe, but the school year is coming to a close. It has been a good year!

Box of Soap:
Or a soap box....
When I arrived yesterday for my monthly appointment with Dr. Zu, the nurse informed me that, due to changes in insurance protocol, I could no longer see Dr. Zu on the same day I received my treatment. I now have to get my blood work on one day, see Dr. Zu on another day, and then get my shot on another day. I mean, really? Can you say money! As if the shot I get isn't enough of a pain in my ______________! The insurance company has dictated this change in protocol. Rather than benefit from the relationship I have with Dr. Zu - going on four years -, I will be unceremoniously ushered from one appointment to the next. The bureaucracy of the health care industry keeps rolling people over with little regard for what is best for people.

Okay, I feel better now.

More good news (just got this):

I called Dr. Zu's assistant this morning to seek clarification and to express my dissatisfaction with the change in protocol. Dr. Zu agreed that is was unnecessary for me to make an additional visit. He made an exception. While this is good news, it bothers me that the insurance companies steamroll people who don't ask questions and don't make a stink, and that, even if they do, it won't make a difference.

Progress Update

Had an appointment today with Dr. Zu, although as it turns out, he had to leave early, so I saw his assistant, Grace. I received my monthly injection of Sandostatin, which used in combination with Afinitor, has had positive results.

My blood work looks good as do my vitals. I have experienced some edema in my ankles as well as some intestinal issues the last ten days or so,o both side effects of Afinitor. I have managed to mitigate the impact of the side effects fairly easily, but I must say that I am hating shoes right now!

Christine and I continue to walk regularly, and I have added running to my regimen, although I am not sure if you can call what I am doing running!

We continue to be blessed with health and happiness, and thank all of you for your presence in our lives.

Next up:
Blood work May 28 or 29
Appointment with Dr. Zu on June 1st.

Love to all!

Update: No progress...

... is good progress - at least when it comes to my treatment!

As promised, here is an update on my progress (or, as far as my condition goes, no progress):

• I saw Dr. Zu on Monday, 6 April, when, in addition to my usual monthly injection of Sandostatin, he reviewed the results of my latest CT / MRI scans.
• To date, my latest scans show no change and "no progression" in my tumors. I remain progression free!
• My vitals look good - which really means they are stable: weight is good, BP, etc.

We did have a discussion about my treatment on Afinitor and why it has been effective in keeping me progression-free. [Please understand that I don't have a condition that will ever be in remission, so the goal all along has been to reduce the size of my tumors and then to limit both the size and movement of the tumors]. Dr. Zu believes that my treatment on Afinitor (and Sandostatin) has worked because - here goes my interpretation - the genetic expression of the malignancies on my pancreas and liver is dictated by my primary condition, Tuberous Sclerosis. Tuberous Sclerosis and Pancreatic Neuroendocrine Tumors both function on the mTor pathway, a single pathway. Cancers that have a single pathway are easier to treat and manage. Aftinitor is an mTor inhibitor [note that both Tuberous Sclerosis and PNET are cited on this page], or simply a blocker of the genetic expression [I know I probably don't have this completely correct, but I think you get the idea].

So, no progress is good progress.

I do want to add that Dr. Zu stated that he expected me to have "progressed" by now. We both are pleased that this has not been the case, and hope that I will remain progression-free on Afinitor as long as possible. In the interim, more and more mTor inhibitors are in development. 

I also want to add that while I am thankful at my scan results, our discussion left me a little flat and increased my angst for a few days. Am I living on borrowed time here (see "Borrowed Time")? But aren't we all?  I am happy to report that I know that I am fortunate and blessed to have access to the treatment I am on, to have Dr. Zu as my oncologist, to do what I love every day, to surround myself with wonderful, family, friends, and colleagues, and to be married to the most beautiful, awesome wife, Christine.

All my love and gratitude to all!

Next up:

Appointment with Dr. Zu on May 4, 2015

Update

On Monday, March 30, I had a routine CT scan of my chest, abdomen, and pelvis as well as an MRI of my brain to assess the status of my treatment on Afinitor. Of course, while I provide a link to information on Afinitor, I avoid reading it because I don't want to crowd my mind with what is and what could be. I decided three years ago to determine what is and what could be by embracing a positive and joyous outlook each and every day.

What's up next:

• Routine blood work: Thursday, April 2 or Friday, April 3
• Monthly visit to see Dr. Zu: Monday, April 6.

I am healthy, happy, and thankful!

Love to all, especially Christine, who has to put up with me every day!

I will share results soon.