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Showing posts with the label treatment

birthday queen

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I've been slowly working on a new series of collaged negatives... But this time.... I'm mixing it up. I physically alter the negatives then head into the darkroom for printing. I then further work and collage into the final print. -This is a new for process for me. With this particular piece, I currently have 9 variations. Each one is entirely unique. I've also been printing on Kodak vintage paper that I got from a good friend of mine. Some of this paper must be at least 30+ years old . I just love the way it fogs and has a real antique feel. Technically, the paper going bad and the silver content somewhat fugitive. Nevertheless, I just love how inconsistent it is! On other fronts, the studio and store front is looking awesome. We now have all of our Impossible Project ("Polaroid") film out for sale. I'll be posting some images of the shop shortly. Tomorrow, I have another MRI. From there, if we see further growth and/or tumor aggression, we move toward chemo...
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I had a very good visit with Dr. Reidy at Sloan. We spoke in depth about the merits and pitfall of the proposed treatment courses. In a nut shell, there is no free lunch here. You can't get benefits from any of the inhibitors / chemo without some kind of side effect. We have chosen to go with the TEM + XEL Chemo route. The good news is that it's oral medication. That bad news is that it's in a sense, traditional nasty chemotherapy. The more aggressive tumors should respond very well to this treatment. That said, we have decided to wait for another MRI in April to review disease progression. At first glance, this seems counter intuitive. Dr. Reidy noted, we don't really have a full understanding of the progression of the disease. That is, we've only seen these 2 new nodes crop up in the last six months. Therefore, it might be possible that it's not moving as fast as we think it is. While these tumors appear to be aggressive, as pathology and scans seem to ind...

EUS canceled

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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...

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. ...

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...

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...

We're headed home...

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The Statue of Liberty: A perfect symbol of freedom, long journeys, and triumph over struggle. This a photo post card I found a month ago... now part of the collection. Well, we are headed back to Chicago tomorrow (Tuesday) morning! We met with Dr. Botha this morning and he gave me the OK to take off, if I felt up to it. Well, I'm ready to get home. We're not out of the woods, I'm only running on 30% of a liver and my WBC is high. He's not worried though. We just need to keep an eye out for ascites (excess fluid build up in the body cavity...). If this were the happen, I've have a fever, a ton of pain, swelling and general badness. The fix is basically being admitted to a hospital to drain the area. This happens in about 10-15% of patients, but if it were to happen, it can easily be treated in Chicago. I won't have my next set of scans for a few months when we will look at how the liver grew. Immediately, I'll just need to monitor labs and take it easy. T...

...getting out

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Today Andrea and I went to a local antique mall about 15 miles from the hotel. Partly, we just wanted to get out of the hotel. More importantly, we wanted to see how I would handle being in a car again. Pot holes and such were a jolt, but the highway was a breeze. All in, my 60 minutes in the car today tooling around was tolerated well enough. I got some great exercise walking this huge indoor market. Strangely enough, I was very conservative and purchased only one small photo and an old mini 1920's tin of laxatives , with all the pills and directions still inside. ....and no, I won't be taking them. I did come across a creepy drawing of this woman. She was hiding in a dark corner of the store, with the reflections on the glass frame making it look as if she was alive and trapped inside. Otherwise, I'm still in pain but taking it slow and trying to power through it. The medication helps a ton. I just have to keep reminding myself that it's going to take a while to get...
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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...

trying to pull up this sinking ship...

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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...

$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...

Pain scale...

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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.

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...

the plan...

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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...

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...