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Showing posts with the label cancer

on wisconsin...!

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I'm not a religious person (at all).... but I love folk art and iconography. I hung these pieces at the highland house this weekend. Both are from thrift stores, of course! We had some workers take up some of the flooring to do a plumbing repair, before we came up (long story). We found out that the main part of the house is one of the oldest homes built in Highland. There are layers of flooring built up, for which this was one... I wish it wasn't covered. I love this design! (Also, part of the house is built on unmilled log timber joists... very cool.) UPDATE: The results of my recent MRI were not exactly what I wanted... it was what I had expected, but hoped would not be the case. My liver seems to be stable, which is the good news (i.e. tumors same size). However, the epicardial lymph node tumor, which became cause for concern in December, is very much progressive. From December to March, the tumor has increased in size from 0.9 x 1.6 to 2.4 x 2.9cm. Therefore, the node ha...

back on the bus...

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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. ...

Cancer-versary

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A Door in Barcelona, Spain: Eqyptian Queen... Skullman: A doorway in Madrid, Spain... A Shop Window: Madrid, Spain... A Different Shop Window, Madrid, Spain... 2 years ago this week, I recieved my official diagnosis via a dry phone call. So, I've made it this far. The last two years have been overwheling. We've traveled to mutiple countries, expanded the business more than twice, bought a second home, and had a major surgery. It's absoluately amazing all that has happend in a short amount of time. When I have chance to get away a visit a new place, I can breathe and think. I know that it's time, once again, to regroup and take up the cancer reins again. For 4-5 months, I felt as if it were gone. But the reaity is, it is still there. Things may get worse before they get better. However, I will continue to move forward with a passion and pursuit for discovery and new exepriences. There are many more walls and streets and doorways to meander. Madrid was exciting... and ...

update: proposed treatment and status

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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...

update: what would francis bacon think...?

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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...

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...

"...survey says..."

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 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...

still here...

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Some recent "poses" in a photobooth (testing for an event...) I rock a mean ukulele... The beautiful Andrea... after the show, looking majestic as ever... Me at a show...scowling as usual. Andrea at the camera... These recent photos are proof that we are still alive...and, looking good! I’ve been laying low, avoiding the blog, phone calls and email…not in any particular order. I just haven’t had much to say and needed a good rest. At just about 7 weeks post-surgery, I’m moving around and back to work. I’ve lost about 10-12lbs, which I don’t really mind…. I’m still a little slow and limited to lifting 25lbs or less, but I’m feeling well. Andrea’s back is doing better too. I haven’t gotten out much since returning home after surgery. I’ve made it out a few times for social engagements, and a few times for work. Last week, Andrea and I went to the Museum on a whim, which was great. And lately, we’ve been watching the Blackhawks in the Stanley Cup finals. Admittedly, I’m not a...
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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...

$76,483.25

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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...

bull fight...

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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...

PVE done...

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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...

MOG! ....mother of gawd, that's sick!

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...

notes on treatment in Germany...

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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...

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...