First Medical Oncology Appointment

Hey all. I had another appointment on the 25th, this one being my first appointment in the Medical Oncology Clinic. I met with Dr. Khan and her fellow Dr. Parkin. Things appear to be going pretty well. Dr. Khan wanted me to try and find a trial being run by the National Institutes of Health, but the only study currently being done for neuroendocrine tumors from VHL was being done in France. Unfortunately, you have to be a French citizen, because I totally would have gone.

We're starting to get some direction in where the treatment will finally be heading. There are two possibilities right now. The first is called a Y-90 procedure. Dr. Khan will be taking my case before the tumor board at U of M on the 1st of February to determine if I'm a good candidate for this procedure. Basically, the liver doesn't handle radiation therapies very well, so they can't just bombard the area with traditional chemotherapy or radiation. This procedure would involve them placing little polymer balls that have been irradiated with the Yttrium-90 isotope directly into the blood vessels supporting the tumors. This would minimize radiation to the healthy liver cells, and target just the tumors. The problem with this procedure, is that my liver is a bit like bubble wrap. The tumors are spread throughout the entire liver. This could pose problems because there's just a lot to deal with, and they don't want to put too much radiation into the area.

The next option, is to give me the drug that they are using in the trials right now, but in an un-protocoled manor. The drug is called Sunitinib. Here's a link to the information on the drug. From what I am told, they are having pretty great success treating and killing neuroendocrine tumors with this drug, in combination with the current injection I am receiving (Octreotide). The drug works by blocking the protein the causes the tumors to grow out of control. This protein is not normally created by regular folks, but the gene associated with VHL is corrupted, and allows my body to make plenty of it. Apparently the side effects aren't very bad at all; some occasional diarrhea, fatigue, and dizziness appear to be the most commonly complained about side effects.

I'll know more on the 2nd, most likely. It will definitely be good to have a plan in place. While in the clinic, Dr. Parkin answered a litany of questions. I should start a small exercise regimen. I should be eating normally. It's ok to have a beer every once in a while. The Doctors weren't too happy with the effectiveness of the diuretics. They gave me a standing order to get a paracentesis done whenever I need one. I can just call them up the day before, and go get this stuff drained. This is awesome because I won't have to have a few weeks of agony before letting some pressure off. Dr. Khan is also going to bring this problem up with the tumor board, and talk about possibly putting in a catheter so that I can drain things myself.

I've been having a lot of nights where I toss and turn, and wake up every few hours. I asked about this, and they prescribed me some trazadone to help with sleep. I took one Tuesday night, and felt like I was in a fog all day on Wednesday. I'm going to try taking a half pill tonight and see if that does any better. They also set me up with a referral to psychological oncology. I'm excited, because as Dr. Parkin said, "Really, everyone ought to just have someone to talk to". They might be able to help me with the sleep thing a little bit better, as well.

Having all of this happen has really changed how I live on a day-to-day basis. Really, that's just it. I just take things on a day-to-day basis now. Every morning I wake up, and I thank God that He gave me another day. Every night I ask Him if I could have another. I find it really hard to dwell on long-term things, with the exception of getting better. It really is a lot easier to manage things like this. I mean, realistically, I could get hit by a car and die tomorrow, anyway. God gave me another day, another day to have with Heather, to have with my friends and family. I'm finding it hard to be anything but grateful for that.

Alright, enough of that. I have more appointments on the 15th, but I may see if I can get my paracentesis bumped up a week, because things are starting to get to the uncomfortable stage. I'm excited to find out what the plan of attack is really going to be, and start beating the crap out of this thing.