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