ANTHONY R. VIZZARI | ARCHTOGRAPHIST

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...

This is a slice from my FDG PET showing one of the tumors in question. It doesn't look like much, but it's something! These fused scans kind of remind me of Francis Bacon paintings... I've always been a big fan. I guess that's a plus? We had a very long day (13hrs) at the Hospital in Bad Berka. I underwent a number of scans, and labs, followed by a consult by Dr. Baum. The meeting with Dr. Baum was indeed illuminating. For a more accurate recap, it would be too complicated and a bit long winded for a blog post. In layman's terms, it looks like my disease is a more extensive than the new nodes seen on recent MRI and FDG PET (there are also a few hot spots in the liver). PRRT is not an option per Dr. Baum, since these tumors are much more aggressive and will not respond to PRRT (receptor negative on Ga-68, but very hot on FDG PET, if I have that right). Dr. Baum thinks surgery would only be a temporary measure and is suggesting I investigate various inhibitors wit...

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...

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...

Berlin Photoautomat Chemical Booths: From our "grand tour" of Berlin. Location 1-7 (8 was not open in the winter.) Back to back booths in a Berlin neghborhood (loccation #9). Even though it was midnight, and 25 degress, people were still using the booths non stop! Me, Andrea, Carole and Siobhan (from London's Photomovette). Our Lady of Sorrows: Pedro Roldan Circa 1670: Bode Museum, Berlin After a few great, albeit very cold and snowy, days in Berlin we are now back in Weimer. In a few hours I will be headed to Bad Berka for my in-patient check-in. According to my schedule from Dr. Baum, I am supposed to start the PRRT treatment tomorrow (Monday). I will then be stuck in the hospital ward for a little stretch! We saw much of Berlin and toured nine photobooth locations throughout the city. Our friends from London came to visit with us for a few nights, which added to the fun. It was spectacular to catch up with them and see friendly faces. Via taxi, train, and many mile...

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 blurred landscape photos for no good reason... We have our tickets for Germany. -Flying into Frankfurt arriving the morning of February 6th. On the 7th, we take the train to Bad Berka. Scan on the 8th. If the scan looks ok, we will proceed with surgery in Omaha with Dr. Botha. But before heading back to the US, we'll take the train to Berlin, and fly out from there on the 13th. If the scan is not so great, i.e., too many tumors in the liver to operate of extensive disease, we will see if I can stay for PRRT treatment. I'm not sure if this is an option at this time with respect to scheduling in the hospital, etc.... I still need to work out some logistics... that is, how does my surgeon in Nebraska review the imaging from the scan? When will a report be completed? That's all for now...

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...

Photo: We've finally started to get the ball rolling (at least on the web) for our new integrated photo studio ("312photo"). I'm building a dedicated page as well, but for now, check this one out. These are Paul's photos, and maybe even some of Michael's? We're going to be changing these images a bit in the next pass. I've also been doing some work over the last few days on the email and print collateral to get things moving along. The 312 blog has been much neglected, as well as our Facebook and Twitter accounts. There's much more to be done, but I'm excited about it. It makes sense, why can't we offer some "Zany" photography services along with our photobooths? Hence the "Outside the Box..." For those who don't get it, you know, out side the box, that is, the photobooth! More to follow on this venture in the future... I'm hoping somehow we can integrate more classic and alternate photographic mediums into th...

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...