update: what would francis bacon think...?

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 with FDG PET / CT monitoring (i.e. anti-proliferation drugs which have had some success...). Therefore, surgery is not advised at this time. However, the surgical team at UNMC thinks that they can remove these tumors. (Problem is, you can remove the tumors, but they will crop up elsewhere....therefore, the surgical benefit may be limited). So, I have some more foot work and/or research to do here. There are a few oncologists that Dr. Baum has recommended (including MSKCC, for which we are seeking an appointment in the coming weeks). Dr. Baum had also suggested that we have an EUS performed. From our discussion, there was some concern that one of these tumors may not actually be on a lymph node, but on the head of the pancreas. Via the current scans, it's difficult to say for sure, hence the EUS. If it's on the pancreas, this might explain a few things (i.e., possibly a secondary primary). Biopsy would probably not tell us much, but location might. Once again, Dr. Baum has reiterated that Octreotide would not be useful in my case.

In short, I have a hybrid / mixed tumor. Part of it is under control, while the other is definitely progressive. My liver and pancreas surgery helped a good deal to douse the flames. Unfortunately, this is not an indolent disease. It looks like the rate of growth is doubling in about 6 weeks time (if we use the math from recent scans). Furthermore, we recently found out that it's not correct to classify it as Carcinoid. This is PNET, and there is a difference.

Of course, I'm feeling more than a little screwed here. These new revelations are not uplifting. There is some hope for drugs that have had success, so we'll see. Also, all my labs are normal, no bone mets, and I feel healthy. That's a huge plus on my side.

So, we will go back to Berlin for a few days then head to Madrid and Barcelona before returning to Chicago. We need the break. After we return, a lot is going to have to change on the home front. I don't entirely know what that means yet, but I suspect it has a lot to do with diet, exercise and work load. That is, I'm going to have to reexamine my priorities, yet again.

Ps... the German's have their shit together in Bad Berka. If anyone out there is a patient and needs help, get yourself in touch with Baum! I can't express this enough!