Posted onJuly 15, 2012|Comments Off on MRI Image of the Hole in My Brain
I don’t know what percentage of my brain I was using before, but it doesn’t seem like I was using the part they took out with the tumor! Below is an image from the July 6th MRI, which I am told shows a hole where the tumor used be.
The doctor says everything looks really good, and the brain has healed very well. Some scarring from surgery, but overall I don’t think I could have asked for a better outcome.
Yesterday I received the first injections of ICT-107 (I’m just assuming I’m not getting the placebo). I really had no idea what to expect going in, but it was pretty painless. I had to get 5 injections under the armpit. The reason for the location is because there are large concentrations of lymph nodes there. When the vaccine gets into the lymph nodes an antibody is produced which then seeks out the cancer cells for destruction. They say it’s either the armpits or the groin! Maybe next time I’ll try the groin, just so I can say I was the only person in the trial who got it in the groin…..I’m pretty sure my nurse, Jennifer, would not want any part of that!
Below is a link to a picture of me getting the shots. I’m not showing it by default as some people may find my pasty, shirtless body disturbing! 🙂
Now that radiation and the first round of chemo is complete, I’m moving into the vaccination portion of the clinical trial. Since this clinical trial is blinded, nobody involved will know if I’m getting the ICT-107 vaccine or the control vaccine (placebo). From this point forward, I’ll just assume I’m getting the vaccine, but the Placebo effect can be very powerful….I think it’s another reason you should always join a clinical trial if you are faced with any serious disease.
For the next 4 weeks I’ll be traveling to Wake Forest once a week to get the vaccine. The standard vital signs and blood work will also be performed.
I am very happy to report that my radiation treatment is now complete. It’s the first step in hopefully a very long journey.
Since it was the last day I received several parting gifts.
First is the certificate of completion. I can’t say it was hard work, I just had to lay there for 10 minutes each day. It did take a toll though, the main side effects were hair loss and small headaches. Time will tell on the longer term side effects.
Second, they let me take home the mask that was used to position my head for each treatment. You can see where my nose sticks out in the left part of the mask. It should make for a good Halloween costume next year!
The highlight though was getting to ring the bell. I don’t know the story behind the bell, but basically when you complete your treatment, you get to ring it. Below is the video, my Dad is on the right and you can hear the crowd going wild in the background!
Posted onMay 17, 2012|Comments Off on Halfway through Radiation!
Today marked the halfway point in my radiation treatment. Overall still feeling great, with the only side effect being my new haircut. I’m being told the next thing I should expect is tiredness. Sounds like a good excuse to take afternoon naps!
Posted onApril 25, 2012|Comments Off on First Day of Chemo and Radiation
Today was my first day or Radiation and Chemo, and I’m happy to report it went really well.
My schedule consists of 30 days of radiation, while taking the chemotherapy drug Temozolomide (often referred to as Temodar or TMZ) for 42 days. I have radiation Monday-Friday, and take the Temodar everyday, so the first round of treatment is 42 days.
With the Temodar I was given 3 anti-nausea medications.
Ondansetron (Brand name Zofran). This is taken before I take the Temodar.
If I feel sick after taking the Temodar, I was given another medication to take, Prochlorperazine.
If I STILL feel sick I would then take Lorazepam. If you read that article, it doesn’t sound like one I’d want to take!
So far the only thing I’ve had to take is the Ondansetron (I am writing this article on May 21st), so I’m fortunate to be tolerating it so well.
Today I did a dry run of the radiation. In the images below you can see the mask that was made last week. The mask is a hard plastic mesh that is locked to the table. This ensures my head is in the same position each treatment. If you zoom in on the first photo, you’ll see some of the markings and lasers used to ensure they are hitting the exact area they want.
I’ve also included a couple more pictures which show more of the radiation machine. The part that emits the radiation rotates around me during the treatment. The table I’m on can also be lowered, raised, or rotated.
The radiation treatment only takes about 10 minutes, and of that time I would estimate I’m getting around 60 seconds of total radiation. The majority of time is taken by the machine moving into different positions. I think they are hitting the tumor from 5 or 6 different angles each treatment.
Posted onApril 23, 2012|Comments Off on Taking Blood to Make the Vaccine
Today I had to have blood drawn through a process called apheresis. I’m probably going to really screw up the explanation of this, so I apologize to anyone that knows the scientific details….this is my best attempt to describe it in layman’s terms.
What they do is take the blood out of my right arm, take the white blood cells out of the blood, and then put the remaing blood back in my left arm. I believe the cells they are actually trying to get are known as dendritic cells, more on them later. So I was hooked up to the machine for about 3 hours, they take a little blood, process it, put it back, and then take more, over and over again. Below is a picture of me going through the process.
Today I had a mask made for the radiation I’ll be starting next week. It was an interesting process. I could see how some people would have difficulty with the process, as essentially what is done is you are lying on the table and they take a piece of warm mesh plastic and push it over your face, and then lock it to the table while it cools. You really can’t move at all while the process is happening. They then mark the mask with different points they’ll be targeting the radiation. The mask will ensure that my head is in the exact same position for each radiation session. Wish I would have had a camera, but I’ll take some pictures next week when the radiation begins.
Today we met with Dr. Mark Gilbert at MD Anderson in Houston. Numerous other Doctors we have talked with speak very highly of him, some going as far to say, “Do whatever Mark says”. Mark was great, very personable, and he knew we were interested in clinical trials and which ones we were looking at. A lot of the trials they had at MD Anderson were already full, but they did have a new one opening up. It was a phase 1 trial, which my insurance wouldn’t cover, so it all but ruled it out. Also, after getting word on Friday that I had the right gene to get into the ICT-107 trial, I felt pretty confident that was the right way to go.
Overall an excellent visit. It was really nice to be able to talk to one of the foremost experts in the field and get his thoughts on the different options. I was also blown away by the magnitude of MD Anderson. It’s a huge operation!