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

Marching on

Although he says, "it sucks" and it feels like his "stomach is full of cement," Mark is tolerating his chemo and was even able to go to work today. Not only did he go to work, but he made a special visit to my mom's work to bring her a nice cold drink because he knew she was working in 90 degree heat with no air conditioning. Can you believe that? Here he is trying to get himself through the day, feeling awful and yet, still thinking about ways he can improve my mom's day. It's truly unbelievable to me how unselfish this man is!

The symptoms Mark is feeling, in addition to the "cement stomach," are hot and cold chills and feeling like he has a fever. I'm sure this 90 degree heat is not helping his cause. He also mentioned he is starting to feel progressively worse with each day so Wednesday, after he takes his last dose of chemo on Tuesday night, may be his worst day of all. Hopefully he will be able to continue working so he can save his vacation and sick days for future treatments and doctors visits, but I am also hopeful that if his body tells him he needs to stay home for a day to recuperate, he will listen (yes, this is directed towards you, Mark). 

On a positive note, I am happy to report that Mark's insurance did cover both his anti-nausea medicine and his chemotherapy drug! He will have to pay the remaining $650 toward his $800 prescription deductible (yes, he has both an $800 prescription deductible and a nearly $6,000 medical deductible), but thanks to an extremely generous donation from two extremely wonderful people, that was taken care of for him! We are truly humbled and forever grateful for the generosity people have shown Mark since he embarked on this unfortunate journey more than five years ago. We will do our best to "pay it forward." This I can promise you!

Thanks for your continued thoughts and prayers as Mark continues Marching On.

It's almost chemo time

It's official. Mark is starting his chemotherapy on Friday evening. He will take 2 pills (at the same time) once a day for 5 days every 4 weeks. On Friday at 10 PM he will take the anti-nausea medicine and then at 11 PM he will take the 2 chemo pills. He will then go to sleep. As he explained it to me, "The pill will work while I'm sleeping and I'll wake up and feel like crap," he said while laughing. He expects to feel sick for the entire next week after he takes it and is hoping to be feeling back to 100% by September 10th when they leave for their well deserved and much needed 10 day vacation to New Mexico!

I will make sure to keep you updated about how Mark's body reacts to the chemotherapy this time around, and how his insurance handles both the chemotherapy drug and the equally important anti-nausea medication.

Last weekend, Pat and I had tickets to attend the Browns preseason game. We weren't able to attend and wanted to give the tickets to my mom and mark, who we knew would truly enjoy and appreciate the chance to go to the game (and are die hard Browns fans). It hasn't rained on a weekend in Cleveland in months. Wouldn't you know, it down poured the entire 3 hours they were at the game. Seriously, can they catch a break? But as we all know, you can't rain on Mark's parade! They were still very appreciative of the tickets and enjoyed the seats!

Moving Forward

First I should mention that after Mark's Gamma Knife procedure, he returned to work the very next day (we all saw the pictures of what the procedure entails). Even though he should have taken the day off to give his body some much needed rest and healing time, he was thinking long-term and knew that there was a good chance he will need each and every one of his vacation days with future treatment options. While he wasn't feeling like himself for most of the day on Saturday, by Saturday night he was up and at 'em and they went to Applebee's to watch the Browns preseason game.

Today's Appointment

Mark and my mom met with Dr. Kendra and her intern today, as planned to discuss his treatment options for the remaining six tumors in his lungs and one in his brain. The intern, with whom they were impressed, explained that his frontal lobe tumor, the one he hasn't addressed yet, is an active tumor and has a blood supply. It is something they need to be mindful of and watch for any symptoms.

Although they left with somewhat of a different plan than I think Mark was expecting, they both agree with Dr. Kendra's assessment and reasoning and feel good about the plan in place. As I had mentioned previously, Mark was hoping to enroll in another immunotherapy clinical trial. The trial would be a combination of two drugs: Illpillmunimab (immunotherapy) and Temodar (chemotherapy by pill). Dr. Kendra explained several things regarding this clinical trial. First she explained that Mark would not be eligible for the trial since he has already taken Temodar before and this is one of the stipulations for the trial (there are always a lot of criteria that need to be met in order to be eligible for clinical trials). Dr. Kendra also explained that it is only a phase 2 clinical trial, meaning there isn't any evidence yet that these two drugs work together. There is, however, evidence that they both work when taken alone and somewhere down the road, Mark might need to try the Illpillmunimab alone.

For these reasons, and the fact that Mark has already had success with Temodar, Dr. Kendra recommends that Mark start taking this chemotherapy pill Temodar for three months to try to decrease the size of his lung and brain tumors. Mark hopes to start taking the drug in a week or two, once he settles things with his insurance company and makes sure they will cover the drug. If not, he's looking at over $10,000 for three months of the drug which just isn't feasible for them. So fingers crossed that insurance will cover it! After a preliminary discussion with his insurance company, it looks like Mark will have to pay the first $650 out of pocket for the Temodar and then insurance should cover the rest but nothing is finalized at this point.

Once Mark starts the chemotherapy, he will take the pills for 5 days, every four weeks. After three months of taking the chemotherapy pill, Mark will get re-scanned. Dr. Kendra will be looking at the results of the scans to see if the tumors are stable (meaning they haven't changed at all) or have reduced in size. If she sees either of those results, Mark will continue on the Temodar. If the tumors have changed at all for the worse, she will take him off the drug and will probably recommend that he tries another drug in combination with Temodar.

The Temodar will not only impact the tumors in his lungs, but will also fight the lingering tumor in his brain. As for the spot under Mark's arm, the reason he initially pushed to get those scans in July because he felt it increasing in size and causing him pain, Dr. Kendra believes it is just fluid and nothing to be concerned about. Thank goodness for that fluid, though, because otherwise Mark's scans wouldn't have taken place until today and who knows whether or not that tumor in his brain would be worse by now. I think the fluid in his arm was his body's way of saying..."Hey buddy, something's going on in here and you better get it checked out!"

Neither Mark or my mom really remember how Mark's body reacted to the Temodar drug the last time. I thought I remember him being extremely nauseous the 5 days he takes the drug and then a few days after. I guess time will tell for sure. In addition to the Temodar, he will need to take an anti-nausea medication (which wasn't covered by insurance the last time). He tried several different kinds and the only one that actually helped the nausea was the one insurance doesn't cover. Go figure.

I will keep you updated as Mark battles the insurance company about the Temodar and when he will officially start taking the drug.

Thanks again for the thoughts and prayers!

It's Gamma Knife Day

Today Mark and my mom arrived bright and early (6 AM) to the James Cancer Center in Columbus for Mark's Gamma Knife procedure. You're probably envisioning the Frankenstein treatment I have described in the past where they drill bolts into his head. That is actually not the case. I was thinking of a different kind of radiation therapy Mark has received in the past. In comparison to that, the procedure he will be getting done today is not quite as bad (although it still looks like it's from the Frankenstein era and they still somewhat have to put bolts in his head).

Mark is all "strapped up" and waiting for his Gamma Knife procedure today.

Somehow he's still smiling! That's his positive attitude!

When Mark first arrived, they put the "halo" on his head and did another MRI of his brain tumor to figure out exactly where the tumor is located. Next they waited for the computer to figure out the exact coordinates for the surgery, a very important step so they don't end up radiating a part of the brain that doesn't need it. Waiting for the coordinates and getting everything set up is the longest part of the day. The actual procedure only took about 20 minutes. The nurses and doctors played Beatles music for him while the procedure was taking place. He said at one point he almost drifted off to sleep.

When I talked to Mark he had a pretty bad headache from the "halo" being screwed so tight to his head, but he was doing well otherwise and of course, in great spirits!

Next Steps:

Mark meets with Dr. Kendra next Thursday, August 19th to discuss the next course of action. Mark would really like to enroll in another immunotherapy clinical trial currently taking place at MD Anderson in Texas using a combination of the drugs Illpillmunimab (immunotherapy) and Temedar (chemotherapy by pill). These options will be discussed with Dr. Kendra next Thursday.

In a couple of weeks Mark will have another MRI to see whether or not today's Gamma Knife procedure has decreased the size of his brain tumor. This new scan will also be interesting to compare to the old scans in regards to the other brain tumor in question, as several doctors still believe Mark should have brain surgery to remove it.

We will know more next Thursday! Thanks, as always, for your thoughts and prayers!