Good News to End the Year!

Friends, Family, Colleagues!

I have not posted since July, which is a good thing!

As this year ends, what better news to share than positive scan results:

Had routine CT scan today which revealed a further reduction in liver tumors! My other tumors remain stable!

Dr. Zu, my oncologist, says I am doing really well!

So, as the year ends, I am grateful for my health, for your encouragement, and for your love!

Love,

Andrew and Christine

The Last Four Months

Friends, Family, and Colleagues:

It has been four months since my last post. Christine and I have hung in there during this "new normal."

Dr. Zu started me on two drugs in March, temozolomide and capectitabine(referred to as CAPTEM in the literature),  a combination chemotherapy which does have side effects. 

Capectitabine, which I take 14 days a month, causes burning in my hands and feet. See photo:

We have managed to minimize the impact of this side effect by changing  the dosing regimen (same dosage per month, just administered in a different schedule). It is now manageable - still uncomfortable - , but foot and hand burning is limited to 3 - 4 days a month. It is not as acute as it was in the beginning. We feel that we can live with this and return to a "new normal."

The Temozolomide, which I take 5 days a month, causes nausea, but with the use of an anti-emetic, I have had no issues with nausea/vomiting (except the one time I thought I would skip the anti-emetic because it caused a bad headache). Temo makes me very tired and sometimes suppresses my appetite. 

We have managed, and have discovered what our "new normal" is. 

 I continue to receive a monthly injection of Sandostatin.

The good news is that my latest scan shows a reduction in 3 of 4 tumors, while the fourth one (on my pancreas) appears to be stable. 

Dr. Zu wants to continue on this routine until further notice. 

We have isolated the particular genetic mutation (TSC1) which, as of now, cannot be "turned off." Dr. Zu has a patient with endometrial cancer, but with the same mutation, who has responded well to Temsirolimus. This is a promising next step, when we need it. 

Additionally, movement has been made in the treatment of neuroendocrine tumors with the FDA's approval of a PRRT phase III clinical trial. We are keeping our eye on this one.

Now, on to the last 10 days:

I finished out the school year well on June 22.

Late on June 23, Christine and I went to the ER because I had pain in my abdomen.

We were released the morning of the 24th with a pain med and directions to follow up with my primary care physician. The PA  remarked that, aside from  a lot of air, my CT scan was unremarkable.

We returned to the ER on the 24th, this time with a fever and significant pain. This time, a different PA said my CT scan (note: same CT scan was used....ughhh!) revealed that my gallbladder was significantly distended. An ultrasound confirmed this diagnosis . I was admitted to Grossmont Hospital late on the 24th.

I had surgery late on the June 25th. Dr. Sohn, the surgeon, wanted to scope my bile duct at the same time she removed my gallbladder, but because my gallbladder was seriously infected, she did not want to risk it. 

Thus, Dr. Lajin, the GI Guy who has worked on me previously (I actually requested him!),  was consulted and conducted an MRI of my bile duct which revealed nothing unusual. What necessitated this scan was a high bilirubin count, possibly indicative of a blockage, but which ended up being the result of Gilbert's Syndrome, another genetic - but benign - condition.

I swear, there will be chapter written about me in the medical textbooks someday.

Recovery from surgery has been good, although I went straight from surgery into my next round of chemotherapy. This has been tough.

Highlights of our time at Grossmont:

• While in pre-op, a staffer made a personal call and complained that he wasn't going to pay for a pizza someone ordered and was not happy that someone had messed with his XBox. (I am a pretty mellow person, but man, I was pretty POed at this.) Totally unprofessional. Yes, I am going to complain.
• Despite sitting in the designated waiting room, not a single medical person notified Christine of the status of my procedure. They had her phone number. She waited four hours. When I went to pre-op, I was in one room; after surgery, I was in another. Yes, I am going to complain.

The good news:

I have a rock star medical team.

This latest bump is not related to my cancer.

Tough when people recognize you and know you by name. 

We are a bit overwhelmed by this latest development.

But let me say that I have the strongest woman by my side. I ask that you reach out to her during this time. We are both shell shocked right now, but Christine even more so because she has to deal with me - and she does so with grace, beauty, faith and patience.

We thank all who have supported us during this latest medical challenge (ain't a "journey" folks...).

And, hard to believe, July 1 marks five years since my diagnosis!

Love to all,

Andrew and Christine

"High in the Sky" and an Update

Hello All,

I received confirmation that my new treatment protocol is set to start on Tuesday. Nice to not have to wait.

Additionally, Dr. Zu has contacted Foundation Medicine, a Cambridge-based company that establishes genomic profiles in an effort to help develop targeted therapies for cancer patients, and my referral is in motion!

Christine and I hiked "High in the Sky" today, also known as Kwayy Payy Peak.

Upward and onward, my friends!

Love to all!

Andrew and Christine

You Won't Find This Combo on the McDonald's Menu

I am tempted to start singing "You (I) deserve a break today," to keep with the McDonald's theme, but...

Christine and I saw Dr. Zu today.

He reported that my latest scan did show growth in three of four areas - two in the liver and one in the pelvic area. The one on my pancreas remains stable.

He commented that growth seems to be progressing more quickly than it has been shown on previous scans and on previous therapies, namely the Afinitor.

The plan is to start me on a therapy combining two traditional chemotherapy drugs that has produced positive results for my condition. The two drugs, temozolomide and capectitabine (referred to as CAPTEM in the literature), have minor side effects. I will keep what hair I have left! I will also continue to receive a monthly injection of Sandostatin.

Additionally, Dr. Zu wants to send a sample from my latest biopsy to Foundation Medicine, a Cambridge-based company that establishes genomic profiles in an effort to help develop targeted therapies for cancer patients.

We are pleased to have a plan in place and feel fortunate to have this treatment available. We will continue to live each day with love, joy, and laughter.

Thank you once again for your love, encouragement, and friendship.

With love,

Andrew and Christine

"Ch- ch-ch-changes..."

“Grief doesn't change you. It reveals you.”

― John Green, The Fault in Our Stars

"Change" is not a word you want to hear from your oncologist.

Dr. Zu called and left a message today. To summarize his message: "We need to find a new treatment." Appointment scheduled for Tuesday at 11:30 a.m. I have not spoken directly to Dr. Zu, but I did speak with Grace, his assistant, who was short on details (and probably is not in a position to share what she does know).

I do not have details, but I surmise that Sutent, my current treatment, has not done its job and that there has been a progression in my condition.

My latest scan, which I had last Monday, must have revealed something to suggest that Sutent is not working. Not many options out there. To use a baseball metaphor, strike two! 

Please pray that Christine and I will move forward with acceptance and peace as we wrestle with uncertainty and a new "new normal." 

More details to follow.

Love to all of you.

Andrew and Christine

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