Getting ready for Ippy!

Mark was able to get an appointment to see the Ippy doctor yesterday. This shouldn't come as a surprise to you, but it was because of his persistence in calling the doctor's office and insisting that they see him this week that he was given the opportunity to take an opening when someone else canceled their appointment yesterday afternoon. Needless to say, he jumped on the opportunity, took the rest of the day off of work and drove to Columbus.

The doctor highly recommended that Mark start the Ippy clinical trial first, rather than starting with Gamma Knife Radiation. Mark had no objections to this plan since he was been waiting for months to do this clinical trial. “We don’t want to go into the hindsight of the fact that I wanted to do this drug two or three months ago," Mark said. "We just have to move forward.” And that we will!

Mark should be starting the Ippy clinical trial within the next week, depending on how long it takes to get the three different tests that need to be taken: a bone scan, EKG and bloodwork. He hopes to have all of this scheduled before the end of the week. If that happens, Mark will most likely be going down to Columbus on Monday to get his first Ipilimumab infusion. If not Monday, he should definitely be starting the trial sometime later in the week. Bristol Myers-Squibb is offering this clinical trial for free, to add to the numbers of their research.

The infusion itself, given intravenously (through an IV), will only take about 90 minutes but they want to watch him for a while after he receives it to make sure there aren’t any adverse reactions. Mark expects to be there somewhere between 3 1/2 to 4 hours for each treatment. He will be receiving one infusion, every three weeks, 4 times. Then he will get new scans and they will assess them to see if there is any improvement. If the scans show anything less than the previous scans, he will continue with the clinical trial. As Mark explained to me, even in the second and third months of the clinical trial, patients were still showing signs of disease progression but they continued with the clinical trial anyway. It wasn't until the third and fourth months when doctors started seeing positive signs that the drug was working. That being said, if after 4 infusions Mark's scans aren't promising, there will still be hope!

Mark isn't sure if he’ll be able to work the day after he receives his infusions. Only a very small percentage of people in this trial have had a negative reaction immediately. Most of the serious, and possibly debilitating side effects don’t occur until the second month, Mark explained to me based on his extensive research and conversations with the doctors. The most common known side effects are gastronomical side effects, in the stomach and digestive track. 60% of people had side effects that effected these areas. These gastronomical side effects can be very serious, even life threatening if they're not treated correctly.

When Mark was there yesterday, a nurse sat down and went over with him a 26 page form that explained all of the different things that could possibly happen in this clinical trial. He literally signed his life away, acknowledging that he could die doing this trial. There have been a number of deaths involved in the clinical trials with this drug. When these clinical trials first being, the doctors figure out how much or how little a body can handle by testing it on people and many times they learn what is too much when someone dies as a result. “Those people are the real heroes and champions of this clinical trial stuff. The people who go through the trials first,” Mark said. “They are the most courageous people I can even begin to think about.” Some people might say the same thing about Mark.

Despite all the risks, the known and unknown side effects that could take place, Mark is very eager to start this clinical trial. He only has one fear: that the trial won't work. Although he is afraid of not having a positive outcome, he does have a very good feeling about this trial. He compares the Ippy clinical trial to the position he was in Back when first diagnosed in 2005. Although there were several routes he could have taken (chemotherapy, radiation, etc.), Mark only viewed one option as hopeful: the clinical trial. Five years later, he feels the same way about the Ippy Clinical Trial. "There are different options but the best option I can see is the new Ippy," Mark said. "I'm going to go for it and hope for the best."

Mark is really optimistic that this clinical trial won't be anything like the grueling, six months of the IL2 trial he underwent five years ago. "This clinical trial should be very much the opposite," he said. "This treatment is one infusion, every three weeks and even though there will be side effects, it won't be nearly as bad as the other one."

As soon as Mark has the tests completed and the first Ippy infusion is scheduled, I will be sure to let you know.

It is almost impossible not to be optimistic when the person who just signed their life away to start another clinical trial is so positive and actually excited to get started. I know I say it all the time, but he's amazing!

Mark's scans

Pat and I went home this weekend so we could help my mom and Mark do their annual woodcutting to stock up for the winter. And yes, when I say "we," I did actually help! I had the very important (and high pressure) job of operating the wood splitter. I'm happy to report that everyone still has their fingers and there were no injuries. I'm even happier to report that thanks to Mark's hard work and preparation for the woodcutting, in one day and with only 6 of us, we were able to cut enough wood to last them for the entire winter.

While we were there, my mom showed me some of the before and after scans of Mark's brain and lungs. The pictures do not paint an optimistic picture. I decided to scan two of the tumors in Mark's lungs to share with you the drastic changes that have taken place in just three short months.

Imagine that Mark is standing and facing you at your computer. His right shoulder is on the left of the screen and his left shoulder is on the right of your screen.

Tumor #1 in Mark's lungs (July & October)

Tumor #2 in Mark's lungs (July & October)

These are only two of several tumors Mark has in both his lungs and his brain. As I said, the pictures don't look good. I didn't post them to be a pessimist or make the situation seem hopeless, because we all have hope. We have to. But I thought you should see what we have seen so you understand the strength and prayers Mark needs!

You wouldn't know Mark has all of this going on in his body if you saw him. He worked his butt of on Friday and Saturday doing the woodcutting and probably outworked us all! He doesn't get short of breath and isn't in any pain. Let's hope he can keep up his strength to really fight these tumors with all he's got.

It's time to fight harder

Mark had some scans done last week and got the results back tonight. It certainly wasn't the news we were hoping for. The purpose of the scans was to determine whether or not the Temodar chemotherapy drug Mark has been taking since August was working. Unfortunately it is not. Mark has three new brain tumors, new tumors in his lungs and the existing tumors that showed up in his scans in July have gotten bigger. That is a lot of new activity in only three months. It shows that the cancer is very progressive and the treatment needs to be even more progressive.

For that reason, Mark is going to be starting a new clinical trial Ipilimumab, which you may or may not remember is what Mark really wanted to do in the first place. I have to say, his instincts have typically been right on when it comes to his courses of treatment.

Dr. Kendra's office will be contacting a doctor tomorrow who specializes in the Ipilimumab, or "Ippy" as my mom and Mark are calling it, and he will decide whether Mark should go ahead with Gamma Knife radiation on his brain tumors first or get started with the Ipilimumab clinical trial right away. I will definitely keep you updated after we hear from the "Ippy" doctor.

How are Mark's spirits, you might be wondering? Well despite the fact that he and my mom have now been in the James Cancer Center for almost four hours (and are currently locked in the parking lot as I type this because the gate is broken and they can't get out), Mark sounds extremely positive and optimistic.

"I'm excited to get started. I know it sounds silly to say that, but I wanted to do this six months ago," Mark said. Yes, that is a direct quote. He used the word "excited" when referencing starting another clinical trial. Amazing.

Mark is very encouraged by the information out there about Ipilimumab, especially as it pertains to patients who receive Ipilimumab after they have already had success with Interleukin 2 (IL2), which Mark has. Early studies of patients that have had IL2 and are now taking "Ippy" have had really good results.  While only 5 out of 100 patients respond to IL2 (and Mark was one of those 5), 30 out of 100 patients responded to "Ippy." The number increases even more for patients who have received IL2 and "Ippy."

"There are no guarantees but we are very hopeful," my mom said.

I have to be completely honest. When I get calls like this and hear the bad news from my mom first, before talking to Mark, I get this sinking feeling in the pit of my stomach wondering if this is going to be it. Is this going to be the point where Mark says, "no more," and quits fighting. And who could blame him? I can't tell you how comforted I was to receive his phone call this evening and hear the genuine, "I'm going to give this all I've got" attitude in his voice. He's nowhere close to giving up and I am so thankful for that.

Thanks, as always, for your love, support and prayers. I am touched each and every time I send out an update by your kind and encouraging words for my family. It means the world to us.

Some interesting Ipilimumab links:

http://www.medscape.com
http://knol.google.com
http://www.pharmastrategyblog.com