Some Basic Info

I was first diagnosed with malignant brain tumors on 11-20-08 and I finished treatment for those on 4-13-09. I was recently diagnosed with a recurrence on 12-08-09. I set up this blog so people could follow along with my progress and keep up with what is going on in my treatment. I also wanted to put up information from my first go round so people could learn a little bit about what happened to me before.
The blog is set up with the newest posts first. Sometimes I will post stories from my first experience, in which casse it will be slightly out of order, but the titles will let you know. If you want to look at older posts, which may provide a better idea of the whole picture, use the "Blog Archive" tool on the right side of the page to browse them. The titles of the posts should be pretty self-explanatory. If you don't really know that much about me, or what happened, you should check out these two posts first: this one about what's happening now, and this one about my first experience.
Feel free to leave comments, it should be open to everyone now. Thanks for visiting, I hope this little blurb clears up some confusion, and I hope you like the blog.

Thursday, December 31, 2009

How It All Started

I wanted to create a post to describe my experience with cancer the first time because I don't think a lot of people know exactly what happened and knowing about the first time will help with understanding the second time.

It all started at the end of October of 2008. Towards the end of the month, I started getting really thirsty all the time. Because of this, I drank a lot, and because I drank a lot, I had to pee a lot. I didn't think too much of it, I just made sure I had water with me all the time and used the bathroom a lot.
The second symptom I started having was headaches. I had had a week of really mild headaches earlier in October, but just took advil for a week and didn't think anything of it. But in early November I started having really severe headaches. They started off not that severe, but by the time I went to the hospital on November 20th they were incredibly bad. Around the time that the headaches started, I started having vision problems too. It didn't start off too bad, my vision wasn't really blurry, it was just hard to focus and hard to read.
After having the headaches for a while, and them getting worse along with my vision, I visited the doctor's. This was around the 12th of November and by this point the headaches were bad enough that my parents and I thought I had a sinus infection or migraines. We also thought migraines because my eyes had started to hurt too. We thought maybe the vision problems were just because of the headaches though, and we had no idea why I was so thirsty. Also, by this time the fact that I was so thirsty was affecting what I was eating. I had trouble eating anything that was dry or salty, and my diet consisted of mostly yogurt, soup, and fruit. Additionally, I was waking up about every 2 hours during the night to pee and drink.
The doctor was pretty confused too, he actually ruled out the possibility of a brain tumor pretty early on. He ended up prescribing an antibiotic for a sinus infection, event though I didn't have all of the symptoms of one, because he didn't know what else it could be. He also scheduled a follow up with a neurologist and an MRI for sometime later in November.
After that, the headaches just started getting worse and it got even harder to see. I was having a lot of trouble in school because of the vision problems, and also because of the headaches. I had to leave early a few days because of the headaches. This was all exacerbated by the fact that I got up every 2 hours during the night.
Wednesday the 19th was the last day that I went to school before I was diagnosed. It was a colloquium, and I didn't feel good and had a bunch of advil to take throughout the day. After school I went with some friends to Panera because I remember that soup was about the only thing I could eat. I was there for a while and probably had about 5 cups of iced tea. My dad picked me up afterwards and in the car I was looking at street signs to test my vision. My dad has really poor eyesight and he was able to read the signs from further away then me. He also looked in my eyes and noticed that they were really dilated.
The next day my headaches and vision were worse and my mom wanted to take me to the ER. She had wanted to before, but I had convinced her that we shouldn't go, lest we take up room needed for someone who was actually sick. I convinced her again, but after we called my dad and told him he told us that we needed to go, so we went.
In the emergency room we met with a doctor who we explained all the symptoms to: the headaches, the thirst, and the vision problems. I then had to do a CT scan of my brain, which is about a 30 second scan. After waiting for a while, he came back and told us that I had 2 tumors in my brain, and that based on where they were, they were most likely germinoma tumors. This explained all the symptoms I was having. The headaches and vision problems were because one of the tumors was blocking the passage of fluid through and around the brain, the headaches were from the buildup of pressure that that caused. The vision problems and eye pain were also because of the pressure, the fluid was pushing up against my eyes, inflaming the optic nerves. The fact that my pupils were dilated is because of the pressure. (After an eye exam, they determined that I had torsional double vision: the image in one eye was the same as in the other, except twisted.) The reason I was so thirsty was because one of the tumors had destroyed my pituitary gland. The pituitary gland has a lot of functions, one of which is producing antidiuretic hormone (ADH) that regulates the amount of water in your body. Because I was not producing this, my body did not retain water, meaning I would have had to pee about every hour regardless of what I drank. The fact that I was so thirsty and was drinking so much was my body preventing me from dehydrating. The name for a deficiency of ADH is Diabetes Insipidus. (This is a website with a more good information on that.)
After getting the CT scan and the results, we met with a bunch more doctors who told us that there were two tumors, one on the pituitary glad, and one on the pineal gland, and based on their locations, they looked like germinoma tumors. They also said that they wanted to do a surgery to relieve the pressure from the fluid buildup and to get a biopsy, removing them would be too risky because of the location. So, I stayed overnight and the next morning, November 21st, I had brain surgery for the first time.

More Information About the Stem Cell Rescue

The stem cell rescue treatment that I'll undergo is officially known as autologous stem cell transplant, autologous meaning that it is a transplant of my own cells. I explained it pretty thoroughly in the first post, but I'll go over it again. What they will do is bank a whole lot of my blood stem cells before I have any treatment. Then I get 2-4 rounds of normal dosages of chemotherapy. After I've had the normal chemotherapy I come in for a single session of high dose chemotherapy. The high dose chemotherapy is necessary because when a recurrence of cancer occurs it is stronger than the first time, so stronger medicine is needed to overcome it. The high doses of chemotherapy will eliminate the cancer but it will also eliminate all my bone marrow cells, so I will have almost no immune system function. That's where the stem cells that they collected before treatment come in. After the high dose chemotherapy, they put the blood stem cells that they collected back into my body and this allows my body to recover and start making more blood cells in a fraction of the time it would take without the stem cell transplant. A really good site with more and more thorough information is here.
After getting the stem cells back, I still have to stay in the hospital for a few weeks until I've created enough blood cells to have a healthy enough immune system to leave. One interesting side effect of the treatment is that it will completely kill off all of my immunizations, so about a year after treatment I will have to get all of the immunizations over again. Sadly, because my immune system will be compromised for a few months after the stem cell rescue, I won't be able to go to crowded places such as school for a few months. Given the timeframe of everything, that means I will most likely not be able to go to any more school this year. I'm pretty upset about that, it will make it a lot harder to keep up with work, and I won't be able to experience the everyday routine of going to school and seeing friends and teachers. I'll still be able to see people, but seeing people in school and participating in class is something I'll miss.

Wednesday, December 30, 2009


This is a list of all of my Doctors.
The doctors I had last time are:

Dr. Jason Fangusaro (Oncology)

Dr. Tord Alden (Neurosurgery)

Dr. Reema Habiby (Endocrinology)

All of these doctors have special interest in brain tumors and how their branch of medicine is affected by brain tumors. I was extremely satisfied with all of them last time and they are going to be the ones treating me this time and I don't expect anything different this time.

In addition to the doctors that treated me the first time, I have another doctor for the stem-cell rescue portion of treatment:

Dr. Reggie Duerst (Stem cell transplantation)

I've only met with him once, but so far I really like him.

All in all, I feel really good knowing I've got a team of great doctors all working to get me healthy.

Saturday, December 26, 2009

What's Going On

My name is Miles Austrevich. I was recently diagnosed with a brain tumor for the second time.
The first time I was diagnosed 11-20-08 and had three pure germinoma masses: one on the pineal gland, one on the pituitary gland, and a small mass in the back of my brain. I had surgery to relieve pressure that had built up on my brain as a result of one of the tumors blocking the fluid passageways and for a biopsy. The rest of my treatment consisted of four rounds of chemotherapy and about four weeks of radiation. My radiation treatment ended on 4-13-09 and all the treatment was successful.
On 12-08-09 I had a routine MRI a few days earlier than normal because I had been experiencing headaches for about a week and a half before. The MRI showed that I had a new tumor located in my left cerebellum. I had surgery on 12-21-09 to remove the tumor and to get a biopsy.
The surgery was a success, they got the tumor out and will get pathology results from it soon. The neurosurgeons were happy with my recovery and I stayed in the hospital until the night of the 25th. I could have gone home earlier, but both my parents and I wanted to make sure we had all the pain medication I was taking a little more under control, and waiting an extra day helped a lot with that.
Currently, I'm at home and have been resting a lot. My neck is really stiff from the surgery, so I have been lying down a lot so as to not stiffen it more. People have noticed my straight posture and my grandpa refer to me as "the plank" because i keep my neck pretty rigid when upright. The amount of headache pain since the surgery has gone down significantly, and the medication I'm taking has evened out so it is pretty manageable.
I go back to start the first phase of my stem cell rescue therapy on 1-04-09, which I'll talk about a little bit later. After that I start chemotherapy on 1-06-09 and I will have to do 2-4 rounds depending on how the tumor responds. Each round would be 3-4 days and happen every three weeks. Hopefully because they were able to remove all of the tumor I will only need two.
The stem cell rescue therapy will happen after the last chemo and consists of really strong and high doses of chemotherapy. during this period I'm going to have to be in the hospital for 4-6 weeks because the chemotherapy will make me severely immunosuppressed. The first phase of this happens before the other chemotherapy, they have to harvest stem cells from my blood while I'm healthy so that they can put them back into my system after I have the strong chemotherapy. On the 4th and 5th that'll be what happens, they will give me medicine that increases the amount of stem cells I produce and then filter my blood through a machine to separate out the stem cells they need to save. The reason they do this is that the stronger chemotherapy will pretty much kill off all my bone marrow, and they will need something to put back into my system for me to start producing blood cells again. Because of this I will have to stay in the hospital for an extended period of time, and will have to stay away from crowded areas, such as school, for at least two months afterwards. The actual chemotherapy portion of the stem cell rescue is only about a week long, but due to the time it takes for my marrow to recover after getting the stem cells I'll have to stay in the hospital for a while.
I will also most likely have to have a small amount of localized radiation to the specific tumor area after the chemotherapy and stem cell rescue are over, but due to the recentness of my previous radiation, it will be a small specific area.
That pretty much outlines my treatment plan, although I don't know exactly what the timeframe is, other than my first chemotherapy starts on the 6th of January.
Although spelling it all out makes it seem like it sucks pretty bad, there is a lot to be happy about. I take solace in the fact that I've been through it once before so I have a much better idea of what to expect, and that dealing with the experience won't be as much of a shock this time. The type of tumors I had last time were one of the easiest brain tumors to treat, and although it is more aggressive this time, it is still very treatable and I have a much better prognosis than most recurrence patients.
So, it'll be a long haul, but I'll get through it. There is so much stuff I learned from my last experience that I can use this time to make my entire treatment a lot better than it was last year.