So, that's what $10K looks like!!

Nurse preping my Sandostatin LAR 20MG (03/04/09): Just prior to being shot right into my "backside". $10K a pop! So if you don't have insurance, GET IT!

2nd Opinion: Went to Northwestern yesterday for my second opinion. I was happily impressed with how the staff, and doctors treated me. They give you a pager, kind of like what you might get at the Olive Garden or something? Their facility is new, clean, and relatively pleasing. We met with the nurse practitioner who manages Dr. Benson’s cases, as well as the man himself. They both gave us adequate time to discuss my case, and never rushed. Actually, I felt like I was the one who wanted to get out of there. At the end of the day, much of the information we have is the same. However, I felt that Benson explained things better to us. Also, their pathologists re-examined my biopsy slides. They concur with the U of C assessment, but noted that they felt the tumor sample was “well differentiated”, as opposed to “moderately differentiated”. I don’t think that changes much for me, but might be a little more positive? We discussed the possibility of discovering the primary site. Benson did not feel it was necessary, since it might not change my treatment. And, even if they were to find it, it might be too invasive to try and remove it. With that said, he agreed that we can try Capsule Endoscopy, which he noted may yield no results? But it’s not dangerous, fairly simple, and can’t hurt to try. IF nothing else, I get to swallow a miniature spy camera!! How cool is that??

Treatment: When it comes to Y90 or other treatments, I was told that I’m not a candidate at this time. First, the radiologists will have to look at my scans to discuss the tumors. They will see if my tumors can be treated via Y90, etc, and, if they might be growing. However, I have to be on Sandostatin first for 2-4 months, in which they will monitor the disease. (1 shot per month). If they feel that I’m responding to the drug, I’ll stay on that treatment until it not longer works. If I’m not responding to the drug, they will then review other more aggressive options. So, still a “wait and see” approach. As noted in earlier posts, some patients respond well to this shot? Of course, I don’t have Carcinoid Syndrome, so it’s really just a way to try and slow things down. If it works, great! As an aside, the nurse told me that the sticker price on this shot is about $10K a pop! But she thinks the insurance company probably pays a discounted rate of around $3K? Still, it ain’t cheap! FYI: Received my first full dose shot today: 20MG. Yesterday they gave me a test to make sure my head didn’t explode, or something?

Transplant: Still a last ditch effort… not an option any time soon, or so we hope. Benson explained that the mix of Anti-Rejection drugs and any Cancer cells in the body (i.e., unknown primary) can cause more problems than the Cancer itself. In which case, transplant would be a very bad idea right now. The U of C Oncologists never explained that to me, but I wish they had. As for the liver specialist at U of C….? Not sure what they were thinking??

Appointments: Have a follow-up visit with Benson and another shot on April 8th. Today I have to schedule the capsule endoscopy, as well as a shrink visit. And, have to meet with some fertility doctors. They can tell me if this disease has caused any fertility issues for me. In some cases, it can cause infertility in men. Also, with medications, tests, etc... it’s good to know the risks? So…?

Thanks: To Tom and Mary Beth for sending me a case of ZICO coconut water! SUPER AWESOME , healthy, and tasty (And nice carton design too….)! Becky and Graig took us out for Pizza downtown last night, after a SUPER long day at Northwestern. And Josh and Natalie had us over for a sweet home cooked dinner on Friday…. And not to forget, Paul made yet another great lunch on Monday…. Italian!!! And for all those who have sent me notes, or lent an ear, it means a lot to me! With all of these great friends, how can you not do well? Food, good times and good people is all you can really ask for in life! The stock market can crash and the economy burst into flames, but the banks can’t take away the memories… or, friendship! So, thanks…sincerely.

Now, if the weather will warm up... I can get back to running some more!!!