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