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.
Thursday, January 27, 2011
Saturday, January 15, 2011
Hail to the Victors!
Sorry for the delay in posting lately. Everything has been pretty calm lately, but I have appointments to go to now, and things should start picking up in the news department. But first:
Hail! to the Victors valiant,
Hail! to the conquering heroes,
Hail! Hail! to Michigan
the leaders and the best!
Hail! to the Victors valiant,
Hail! to the conquering heroes,
Hail! Hail! to Michigan
the Champions of the West!
Say what you want about University of Michigan athletics, their hospital systems can't be touched. They have been so fantastic throughout this journey.
I went for my first Urological Oncology appointment on Friday. I actually left on Thursday, and Rocky and Keegan were kind enough to put me up for the night, so that I didn't have to leave at 5:30 Friday morning. Keegan made me one of the best casseroles I've ever had. It was comfort food on a whole other level.
I made it to my appointment, and as some of you may have seen, I spent 2 hours in the exam room before I was seen by the doctor. Dr. Hafez is a really cool Urologist, very matter of fact, but in an encouraging way. He wants to do a partial resection of my right kidney, but wants to wait and see what happens with my liver first.
The last week or so, I've been considerably uncomfortable due to fluid building up in my abdomen again. I explained this to him and he consulted with my Medical Oncologist, Dr. Khan. They share a clinic together, and Dr. Khan is on the floor that I was on when I was diagnosed. She was en route to be at the floor, and together with Dr. Hafez, decided that the best course of action was to admit me, so that she could see me right away, and I could get tapped again.
What's one more night at the Hospital? So, they admitted me again, on the same floor that I was on previously. I was seen in radiology right away to get tapped, which was awesome. 3.5 Liters this time! Holy crap. No wonder I was a grumpy and miserable bastard last week. I was done with this around 4:30, and spent the rest of my night confined to my bed with an audio book.
I woke up this morning at 5:30, and had some more blood drawn around 6. These were labs looking at my liver function, to make sure that nothing had gone south. The residents came in around 9:30 to check me over, and let me know that the team would be in around 11 to fill me in on the results, and start the paperwork to let me go home.
Dr. Khan came in and let me know that my liver functions were better! Holy Chuck Mangione. I'm definitely not out of the woods yet, but after just one injection, my liver is getting better! With this knowledge, Dr. Khan wants to start treating things a bit more aggressively, and wants me to start by trying to get involved with a trial at the National Institute of Health in Bethesda, MD. She said that there is one drug, that's shown to stop tumor growth, and in around 15% of cases actually shrink the tumors, but she doesn't want to start me on that right now because it could potentially disqualify me from a trial. Hail to the conquering heroes, indeed.
She wrote me a prescription for a diuretic, to try and reduce the fluid build up in a more conservative manner. She's worried that each time they tap my abdomen, there's always a slight risk of infection, and thinks that it might be managed better with a pill. Some more good news, is that I can take over the counter pain relievers again! I was told to avoid all of them before, because they're either processed via your liver or your kidneys, but with the functions improving, I'm OK to take any of them.
I have another appointment on the afternoon of the 25th, which will evaluate how the diuretics are doing, and to reassess my liver functions. I have another CT scan scheduled for March, which will be the first look at how the tumors are responding to the octreotide injections. I'm excited for that. Oh, I got my second injection today as well, so if you see me in the next few days, you'll know why I'm limping. Man, that hurts.
I think that's all I've got for now. Thanks everyone for your prayers, and thoughts, and good vibes, and notes, and hugs. You are all my inspiration for fighting this thing, and those types of things help me to fight harder.
Hail! to the Victors valiant,
Hail! to the conquering heroes,
Hail! Hail! to Michigan
the leaders and the best!
Hail! to the Victors valiant,
Hail! to the conquering heroes,
Hail! Hail! to Michigan
the Champions of the West!
Say what you want about University of Michigan athletics, their hospital systems can't be touched. They have been so fantastic throughout this journey.
I went for my first Urological Oncology appointment on Friday. I actually left on Thursday, and Rocky and Keegan were kind enough to put me up for the night, so that I didn't have to leave at 5:30 Friday morning. Keegan made me one of the best casseroles I've ever had. It was comfort food on a whole other level.
I made it to my appointment, and as some of you may have seen, I spent 2 hours in the exam room before I was seen by the doctor. Dr. Hafez is a really cool Urologist, very matter of fact, but in an encouraging way. He wants to do a partial resection of my right kidney, but wants to wait and see what happens with my liver first.
The last week or so, I've been considerably uncomfortable due to fluid building up in my abdomen again. I explained this to him and he consulted with my Medical Oncologist, Dr. Khan. They share a clinic together, and Dr. Khan is on the floor that I was on when I was diagnosed. She was en route to be at the floor, and together with Dr. Hafez, decided that the best course of action was to admit me, so that she could see me right away, and I could get tapped again.
What's one more night at the Hospital? So, they admitted me again, on the same floor that I was on previously. I was seen in radiology right away to get tapped, which was awesome. 3.5 Liters this time! Holy crap. No wonder I was a grumpy and miserable bastard last week. I was done with this around 4:30, and spent the rest of my night confined to my bed with an audio book.
I woke up this morning at 5:30, and had some more blood drawn around 6. These were labs looking at my liver function, to make sure that nothing had gone south. The residents came in around 9:30 to check me over, and let me know that the team would be in around 11 to fill me in on the results, and start the paperwork to let me go home.
Dr. Khan came in and let me know that my liver functions were better! Holy Chuck Mangione. I'm definitely not out of the woods yet, but after just one injection, my liver is getting better! With this knowledge, Dr. Khan wants to start treating things a bit more aggressively, and wants me to start by trying to get involved with a trial at the National Institute of Health in Bethesda, MD. She said that there is one drug, that's shown to stop tumor growth, and in around 15% of cases actually shrink the tumors, but she doesn't want to start me on that right now because it could potentially disqualify me from a trial. Hail to the conquering heroes, indeed.
She wrote me a prescription for a diuretic, to try and reduce the fluid build up in a more conservative manner. She's worried that each time they tap my abdomen, there's always a slight risk of infection, and thinks that it might be managed better with a pill. Some more good news, is that I can take over the counter pain relievers again! I was told to avoid all of them before, because they're either processed via your liver or your kidneys, but with the functions improving, I'm OK to take any of them.
I have another appointment on the afternoon of the 25th, which will evaluate how the diuretics are doing, and to reassess my liver functions. I have another CT scan scheduled for March, which will be the first look at how the tumors are responding to the octreotide injections. I'm excited for that. Oh, I got my second injection today as well, so if you see me in the next few days, you'll know why I'm limping. Man, that hurts.
I think that's all I've got for now. Thanks everyone for your prayers, and thoughts, and good vibes, and notes, and hugs. You are all my inspiration for fighting this thing, and those types of things help me to fight harder.
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