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Showing posts with the label 68-GA scan

Pathology Update: TKTL-1

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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...

live from Bad Berka, it's PRRT!

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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...

Tickets to Germany: Bad Berka

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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...

Question & Answer...

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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...

312photo

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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...

back from Omaha, again...

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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...

Dr. Baum: Bad Berka, Germany

I have scheduled my Octreoscans (OTS) and MRI for December 21st. It's 3 days of scans, which means 3 days in Omaha again. The OTS scanner / method is supposed to be better at UNMC. This time I think we'll drive to take advantage of the antiques! We saw some great furniture there last time that we would have loved to take home for the Wisconsin house. I have also recently been in touch with Dr. Baum in Bad Berka, Germany. I'm sending them my files for review. Dr. Baum thinks I might be a candidate for PRRT. (watch the videos... an hour total...but full of amazing info once you get past the history in the beginning.) Their scanners are amazing. If nothing else, I think I should go there for a scan to get a better picture of what is happening. From what other patients have told me, a treatment package is about 10,500 EUR (about $17,000 USD). Of course, there is also lodging and airfare. I think the scan alone is about $3000 USD. So, I need to start saving my pennies now, espec...