ANTHONY R. VIZZARI | ARCHTOGRAPHIST

My EUS was canceled yesterday (after being admitted - they almost had the IV started). Prior to the procedure, I spoke with Dr. Patil (Radiologist) at length and he did not think the EUS was necessary. I think there was some confusion as to a need for the exam... but we both agreed not to move on it. -I am comfortable with this decision. The concern for EUS per Dr. Baum was to see if there was another tumor on the Pancreas. Per Dr. Patil, he was 99% sure this was not the case after further review of the scans. And as he put it, even if there were new pancreatic tumors, any future chemo or systemic treatment would be aimed at addressing them. (i.e., the EUS would be invasive and superfluous). Also, as Dr. Patil noted, a secondary Pancreatic cancer with different pathology would be very unlikely. So, while it is possible that there is new node and pancreas involvement, it doesn't matter much. Drug treatments will be systemic. * note the round hot spot in the images composed in Bad B...

The back door of a sweet mexi-bus.... San Francisco, 2010 Tomorrow I go in for an EUS at RUSH. (FYI: EUS exams suck...). Then, Thursday I head to NYC to meet with Dr. Reidy at Sloan Kettering. Basically, I'll be consulting her about my options. I'm looking for a third party opinion. Sloan is not particularly known for their PNET work, but Dr. Reidy has proven to me to be a "smart cookie" with honest intentions. Frankly, the "US NET experts" have been less than impressive. (i.e., Mt. Sinai, LSU, Iowa, Etc.... I exclude UNMC in this category because they don't explicitly claim to be NET experts, just damn good surgeons and people...). Once I have some more info and advice, I'll take the next step. It's going to be chemo, inhibitor drugs, surgery, or a combo of sorts. None of the options are great.... and I really like my hair. As before, I feel fine. I've never felt sick. I only feel bad after I'm sliced, diced, drugged, poked and prodded. ...

These are notes from Prof. Baum in Germany. I think it helps explain the current condition and proposed treatment regimen better than I can. "Anthony has several extremely hypermetabolic (FDG-avid) lesions, which usually is a sign of tumor aggressiveness. Therefore he has – according to the new NANETS/WHO classification of 2010 (see attached) – a so called mixed neuroendocrine carcinoma (see page 609) which was also confirmed by the immunohistochemical studies we have performed on his primary tumor in the pancreas tail and the liver mets." "I proposed to him yesterday exactly TEMODAR+XELODA for chemo (A more aggressive alternative (if this combination fails) would be Cisplatin+Etoposid.)" "However, one could try first SUTENT for 4 weeks (approved for pancreatic NET in Europe) or NEXAVAR (Sorafenib) or AFINITOR (Everolimus), then repeat the FDG-PET/CT and measure the metabolic response to the treatment with one of the kinase inhibitors. If it fails, then pe...

After many months, we have the pathology results from Germany. The following was found after analysis of the tumor tissue post-surgery. It's somewhat involved, but it explains why we saw such strange results with FDG and Ga-68 PET scans: " Immunohistochemistry  has been performed and revealed the following: Proliferation rate (Ki-67 measured using MIB1 antibody) was 10-20% in both tumors (liver metastasis and primary tumor)." "The liver metastasis  did not express SSTR 2a (Somatostatin receptor Subtype 2a), and in 20 % of the cells a weak expression of SSTR 5." "There was a strong expression of TKTL1 (the marker which is correlated with FDG uptake and aggressive behavior of tumors)." "The primary tumor  showed moderate expression of SSTR 2a and SSTR 5 in 80% of the cells and strong expression of TKTL1 in 70% of the cells." "What is really remarkable in this case is the different expression of the neuroendocrine markers in the prim...

 MRI: December 8 th , 2010 I had my follow-up labs and scan on December 8 th . The results were mixed. Labs are OK and the liver looks good. Levels are a bit skewed, but nothing major. ith respect to there MRI, there are "at least" 6 tumors remaining in the left area of the liver (that's the old section). It looks like there are no new tumors in the "new" liver at this time. The remaining tumors are stable or possibly even smaller than the previous scan. That's good news.... at best, the tumors could be smaller from the PRRT treatment. If nothing else, it's a minor imaging error and they are stable. This is good news. Unfortunately, there is a lymh node that is "irregularly shaped" and "enlarging". The local docs wanted to do an EUS and potential biobsy , but I opted to wait for the trip to Germany in just a few weeks. The node is near the heart area ( epicardial ). Worst case #1: It's NET that has spread to the node outide t...

Oh that? That's just a quarter inch hole in my right side where I had one of my drainage bags (drains excess fluid from the cavity around the wound). The hose going into it was about 14"-16" long, nasty. It's still leaking, but should stop by Sunday (hence my leak towels). If not, they will sitch it up. There is one on the other side that has healed well. My first day in the hotel... Morning view from the hotel window... I love it. -smoke stack. This is my first official blog entry post-surgery. I’m on meds, so excuse any typos in advance. It feels like a decade, or, maybe just a few days since I’ve taken the time to write? The last few weeks have been brutally intense. It seems that I may have lost track of the days and sequence of things, even prior to surgery. Now, as I start the recovery process, I am starting to come back to life, albeit, in a fog and fighting abdominal pain. I don’t walk fast and can’t move anything of consequence. I try to perform simple ro...

From the collection: 1908: I found this glass negative at a local fair. It's one of Chicago's first fireboats, sunk in 1908 at 16th & Canal. This was a great little score and piece of Chicago history! 03/22/2010: CT Left & X-Ray Right. Note the size of the liver in the CT and the 3 white areas in the X-Ray. Those 3 white spots are the wires used to clog the veins... (AKA - PVE) 03/22/2010: 3 CT sections. In the first image, you can see some growth of the left lobe. Note the center of the large tumor in the 2nd and 3rd images. You can see a bit more necrosis forming... at least, that's what I'm told it is. This could be via PRRT killing NET cells, or from the right lobe & tumor having a decreased blood supply? Or, both? The blog has been SILENT this week… That is not surprising, since all I’ve been doing is trying to get some rest (Spending a lot of time catching up on bad TV). I can’t stand it… If I have not returned your calls or emails, it’s because I j...

I found this photo postcard a few weeks ago at a local shop... I have no idea what this woman is doing. Circa 1915 -1920. Sunday was turning out to be a good day. Andrea and I were able to escape for a few hours to an Antique Fair (where I found some great glass negatives). After which, we went out for an early dinner (Indian food with lots of good veggies!!). When we got back home, I resumed some work at the computer. -I started to feel a pain in my side. Within a few hours, the pain had grown into an excruciating stabbing that radiated into my neck and shoulder. It got so bad that I couldn’t breathe, or, find a position that didn’t hurt. Even lying down was next to impossible. We contacted the on-call interventional radiology (IR) doctor Sunday night. He instructed us to contact them in the morning if the problem persisted. Well, after a nearly impossible night in bed, I woke up early and spoke with IR. The head nurse told me to proceed to the Northwestern ER. I was quickly admitte...

Today the scale is 8. I reserve 10 for trauma and crushed bones. I've been having severe pains for the last 16hrs around my liver, so currently at the Northwestern ER to figure things out. It hurts when I breathe or move. This sucks. More to follow.

A bull fight...a found photo, from the collection. Today was much better... The Fentanyl (pain drug) they gave me yesterday made me sick with vomiting and a nasty headache. It was like I drank a liter of Vodka. -And it was not fun. The only thing that seemed to help was mint chocolate chip ice cream. The mint and cold helped with the nausea. and of course, it's easier to throw up, since it melts on the way down. (nice visual, right?) When the drug subsided, it left me with a good amount of pain in the middle of the night. This morning I was sluggish, the pain has started to subside a bit. I got a good deal of work done via email, etc. so the day was not lost. I have a few meetings and obligations this week, but for the most part, I'm going to try and take it easy. I'm working to confirm the surgery date, which is now tentative sometime between April 19th - 23rd. I'll have to have a scan first to assess the liver growth. Hopefully 6 weeks will yeild enough growth for s...

My favorite hand port! I love these things... Procedure was longer than anticipated, but it's done. I'm back home and the pain meds were strong.., I threw up as soon as I got home. I am having some abdo pains but I think that will eventually end. More later as I feel better...

My portal vein embolization (PVE) is set and ready for this coming Monday morning at Northwestern. It took a little wrangling to get it coordinated between UNMC and the IR team in Chicago, but it's done. Hopefully all will go well because there IS NO TURNING BACK after the PVE procedure. (That is, after PVE, the right lobe is pretty much being set-up for ultimate destruction!!) After the PVE in, 6 weeks, there will be a CT scan to assess liver growth. After that, I will have the right hepatic lobectomy. My recovery will be long, at least 2-3 weeks of it will be in Omaha. And when I say no turning back, I mean it! Check out these videos of right lobe resections and NOTE the nasty cut they put in your abdomen. These surgeries are for different diseases, but the idea is pretty much the same... freaking nasty and scary stuff. I ain't no tough guy, believe me, I'm more than nervous... frankly, this sucks. I've been talking with another well know NET specialist in Iowa (Dr. O...

Dr. Botha's office received my recent scans and reports today and reviewed them in a matter of hours. (If you are familiar with the medical system, this is an amazing response time - usually it takes days to get answers. The folks at UNMC are on top of their game!) The (new) plan, per Dr. Botha is to perform a right hepatic lobectomy. This is similar to what was discussed with the staged resection, but instead, we would be skipping to the 2nd stage of the procedure. The goal is to get rid of these hybrid lesions ASAP, especially the largest tumor. So, we scrap the staged resection. Any remaining tumors (in the right lobe) would be treated by PRRT or other liver directed therapies. To perform this lobecotmy, they first have to do a "portal vein embolization". -Blood flow is cut to the left lobe in order to grow the right lobe. This is generally an out-patient procedure. After 6 weeks, if the liver grows as desired, they will proceed with removing the left lobe entirely. At...

FDG-PET: Note the large tumor lesion with an SUV +/- 60. FDG-PET: Note cross hairs on the "potential" primary tumor in the pancreas. I am out of the hospital in Germany and the good news is that I will not have to return for 12 months… the bad news is that I need to have surgery soon. It turns out that the large potentially 90% benign lesion IS NOT BENIGN after all… This wouldn’t be so bad except that now, it appears as though I don’t have a pure NET, but some type of rare unidentified hybrid (both in the liver and primary). This was revealed by the FDG-PET scan. These suspect tumors have massive FDG uptake. (-a scan that is available in the US an none of my doctors thought to order…???) This “mixed-tumor” didn’t happen overnight, it has been like this from day one, but we only now have the information to deal with it. My disease is no worse than when I walked into the hospital, but the information we have changes the plan, and potentially the prognosis, greatly. Luckily, th...

The "kidney protection" drip... this thing lasts forever! The beautiful adornment... My hospital room in the ward... not too bad. After a relaxing day with Andrea (fueled by room service and general doing-nothingness), I checked into the hospital on Sunday afternoon. At which point, Andrea and I were eventually forced to part ways. I am not allowed visitors in the hospital ward, be it before, during, or after treatment. On Monday, I started a battery of different tests which consisted of much poking of needles. One test was to examine kidney function. At around noon, after a physical examination, my treatment began with an IV drip of “kidney protection” medicine. After about 45 minutes, the PRRT treatment was started. The treatment was short, maybe 30 minutes or so? I felt ok during treatment, but right after I started to feel very anxious, had a headache, was kind of dizzy and generally irritated all over. It was as if I could just not stay still or get comfortable (I beli...

My 68-ga Scans: the full disk is amazing... note the bottom row. See that the large tumor is not illuminated. More to follow. UPDATED (Q/A with Dr. Baum via Email - at end of post) 02/10.2010: Disclaimer: Trying to get to Berlin, so please excuse the typos: Yesterday I had my visit with Dr. Baum and the (68ga PET/CT scan) here in Germany. The results were interesting! After over a year of searching in the US, the primary tumor was found here in Germany in the tail of the pancreas. It is very small, around 1CM in dia. Also, Dr. Baum believes that the largest tumor in the dome of my liver (6.5CM) is actually 90% benign with a metastasis (NET / cancer) growing in the center and edge. This is very rare and Baum has only seen it one other patient in over 4200 cases. We will do more tests (FDG PET Scan) to confirm next week, but it makes a lot of sense. This conclusion was made by how that tumor reads on the scan. It has to do with receptor uptake, etc. Others could probably explain it bett...

found photobooth photo - hand tinted The Grind: Last night was a late one, with multiple events… one at the Standard Club, which is a beautiful venue, but NOT fun for the installing of photobooths! It’s hard to get the equipment in, and of course, they’re very particular about things… Nevertheless, both events were a hit, flawless, and now done! In a few hours, off for yet more photobooth event madness! Day to Day: Sadie, my Step-Grandmother, is currently in the end stages of pancreatic cancer. This was quite sudden… with that said, everyone is very upset about the situation. At this point, it doesn’t look like there’s much to be done? For me, I often think so much about cancer, and my own fate / death, that I feel a little better prepared for this situation. But no matter how much you prepare, it’s hard to accept this fate for anyone. It’s especially difficult when it causes distress for those who you love… Right now, there’s little I can say or do, except to acknowledge the circum...

A messed-up strip from one of my booths on route. I kind of like it... when the chemicals get old, they start to do weird, unpredictable things. The following is a question / answer via email between me and my surgical team at UNMC. First, I just want to say, that the staff at UNMC is absolutely awesome about answering my questions in a punctual manner. I have also forwarded them my questions for Dr. Baum in Germany, but they were not sure about my questions for Dr. Baum, with respect to the 68-GA scan. This is not surprising because it’s not offered here in the US. Nevertheless, it seems as though some doctors here in the US are becoming aware of the importance of the 68-GA scan and PRRT. It’s probably not a silver bullet for everyone, but has had some great results –at least from what I have learned from other. Letter to UNMC (To My Nurse Coordinator & Dr. Botha) From me: Dear (x), I have my appointment with Dr. Baum, but have some additional questions I've been trying to ha...

(A cropped image from our photobooth at "Berlin" Nightclub in Chicago. I thought is was fitting for the post... You know, Germany and all! Note the "Crazy Eyes...") I have an appointment for the 68 ga scan & consult with Dr. Baum in Bad Berka, Germany for February. We're looking for tickets now... I think we'll try to fly into Frankfurt and out of Berlin. This way, we can see the city, and the trip will feel a little less "Cancer-y" My informal budget calculates that the trip will cost about $9,000. Ouch! This includes the scan ($4,300), airfare ($1,600), trains, food, lodging, and a modest photo budget (of course). Another patient told me that the scan was 1,800 EUR, which is closer to $2,700. I'm still waiting on the exact amount from the finance department. The number they gave me, initially, was a loose figure of 3000 EUR. So, -TBD. Read this... Changing role of somatostatin receptor targeted drugs in NET: Nuclear Medicine’s view

Circled is the left lobe of the liver. This piece would eventually grow to become a full sized organ, if all goes to plan. It has a few tumors throughout, but manageable via wedge resections. Here you will see my largest tumor, outlined in red. 6-7CM. Note the IVC (inferior vena cava), and next to it, the 2CM tumor outlined in red. This needs to be dealt with before it grows into the IVC . UPDATE: 1 year of scans was "officially" reviewed. It appears as though the tumor growth is stable in the liver, that is, minimal. So, that's good. Also, another NET patient asked me about the possibility for future resections after the liver takes its new form (post 2nd surgery). The answer, from what I have been told: You are limited in some cases, but you can still resect if necessary. RFA, Spheres, etc. is a more likely option though... Also, if all goes to plan, the liver grows back to its full size and you have a 100% functional liver & tissue. Dr. Botha showed me an exampl...