Latest MRI Images and Infusion

After a long wait, here are a couple shots from the latest MRI taken on June 23, 2014.

06-23-2014-2 MRI

06-23-2014 MRI







For reference purposes here is the MRI from 6 weeks ago.









So the first thing you probably notice is the area of concern is bigger than the previous scans, but from what we’ve been told, that is typically the case when you are on this type of drug….the tumor looks worse before it looks better.  If you look closely at the latest scans there are apparently some good signs in there, but in comparing to the previous MRI, I’m not really sure I see them.  What I remember the Dr saying was the ventricle is opening up a bit more and the tumor isn’t as dense, possibly breaking down, which HOPEFULLY means the drugs are working.  The next MRI is scheduled for August 11th, so hopefully we’ll know a bit more after that.

I continue to feel really good, no more headaches, sleeping well, etc and really don’t have any deficiencies.  The lack of headaches could be related to the steroids I’m taking, but they actually disappeared before I started the steroids so I don’t think that is really it.

Since the last post, it has been a busy couple weeks.  First we had to go to the emergency room on July 2, 2014.  I had a terrible headache when I woke up and was throwing up a little, but it seemed to be just a virus or something.  They ran the whole battery of tests and didn’t find anything so they sent me on my way. Luckily, I was feeling back to my old self in a day or so.

The next issue was my liver enzymes had shot up again, and I had to go back on steroids last Monday.  Fortunately they had come down enough by today so I could get the next infusion.  I have to admit I was pretty nervous about not being able to get the Nivo drug this morning due to my ongoing issues with my liver, but luckily everything turned out OK.  So right now, we are up at Duke getting my first solo injection of Nivo (previously I was getting both Nivo and Ippy).

Thanks everyone for your continued support, prayers, and positive vibes!  Also wanted to thank Lisa, AG, and Dave for watching Caroline while we are away!

Potentially Good News

At Duke today we got some great news, they let me get the final infusion of ippy and nivo!   My liver enzymes are still a little messed up (but back to the elevated levels from 6 weeks ago), so I was a little surprised to get the final infusion today.  I was thinking maybe they would just move onto nivo, but while I’m writing this, the ippy is dripping into me.  It was literally the last day before I’d be removed from the trial (per the trial protocol).  After waiting what seemed like an eternity while the medical team consulted with the company running the trial, they decided to go ahead and give it to me, since I really have no symptoms at this point.

The MRI also showed some encouraging signs.  First, I need to state that the tumor had gotten a little bigger since the previous MRI, so that is obviously not good.  However, the Dr said in this type of trial the tumor almost always looks worse before it looks better.  There were more subtle signs, such as little cavities in the tumor itself and the ventricles of the brain opening a bit more.  Again a picture is worth 1000 words so I’ll try and get some pictures up in the coming days.

It’s certainly a rollercoaster of emotions.  I’m EXTREMELY blessed to be doing as well as I am, but with this disease everything can be looking good one minute and not so good the next.  So thank you everyone for your continued thoughts and prayers!

It has been a long day at Duke, we got here at 8 AM and probably won’t leave until 8 PM.  Luckily they employ some great sushi chefs, so we’ve been eating well today!

Walk Ahead of Cancer is Tomorrow!

Thank you so much to everyone who has donated to the Walk Ahead of Cancer fundraising page!  I honestly can’t believe the amount of money that has been collected through the website, it really is humbling.  If you want to support the cause, the website is still accepting donations until the end of the month:

I really wish I could attend the walk in person, but given everything that is going on, I really need to stay close to home.

Speaking of what is going on right now, my liver was pretty messed from the Ippy and I wasn’t able to get my last infusion.  They put me on a pretty big dose of prednisone, 80 mg a day for the first week, and I’m in my second week now (60 mg a day), with almost no side effects.  I went from being extremely fatigued to almost now not being able to sleep.  Just trying to stay active to offset some of the side effects of it.  As you can see in the chart below, the numbers are going down which is good, the high side of normal for each of the values is:

AST < 41, ALT < 63, ALK Phos  < 110

Overall I’m feeling REALLY good right now.  They do say that one of the side effects of prednisone is euphoria, so maybe that explains it :).  Hopefully tomorrow I’ll be able to post some pictures from the walk!

Good News or Bad News

Today we were supposed to get the 4th and final infusion of Ippy and Nivo, but unfortunately one of my liver enzymes was too high to give me the infusions.  At this point we really aren’t sure what to think.  On one hand since this enzyme has been going up for the past two visits, it would seem to indicate the drug is working or at least doing something.  On the other hand it’s a bit frustrating to be so close to getting all the drugs you can to try and fight the cancer, only to be turned away at the last minute.

For now we are just going to focus on getting my liver healthy again and go from there.  That is going to require blood tests every 3 days until the numbers get back in line.  However if they don’t get back in line I’m going to have to go on steroids, which I really want to avoid.

As far as what that means for the trial we really aren’t sure.  We aren’t sure if we’ll skip the last infusion of Ippy and Nivo, go right to Nivo, or what.  As far as we know though we’ll get the next MRI on June 23rd.  Assuming the liver numbers get back in line, we should know more on the trial in the next week or so.

The other thing that was done today was we got a CT scan of my chest as I have had a cough lately, but it came back completely normal.

I’d say overall I’m feeling good, just a little tired.  We’ll keep you updated.

One final note, the Walk A Head of Cancer is coming up in a couple weeks, so there is still time to donate to fund brain cancer research.

Thanks to everyone who has already contributed!

MRI Images and a Focal Seizure

It has been a busy past couple weeks since my infusion at Duke.  At long last I’ve posted a couple pictures of the MRI images below.  While they might look a bit scary at first, I want to let everyone know that I’m feeling completely fine…I can say with confidence that I really don’t show any signs of the disease. The biggest change is how tired I am at night.  Get much past 10:30 and I’m out of it, sometimes a bit earlier, but I’m consistently getting 9 hours of sleep a night…maybe that’s just me getting old!










The second scary thing that happened this past week was I had a focal seizure.  I had to look focal seizure up to see what it was, but it’s basically a seizure that shuts down a part of your brain for maybe a minute or so (at least in my case).  Mine presented itself in the inability to speak for about 1 minute.  My wife asked me what I was going to put on my sandwich, and while I could think the words in my head, I just couldn’t get my mouth to move.   Once I wrote down what I was trying to say, I could immediately say it.  It was a very bizarre experience to say the least.  The Dr at Duke just told me to up my Keppra dose to 1000 mg twice a day and I’ve been fine since.

So next Monday we head up to Duke for the 4th and final infusion of Ippy and Nivo, then it just goes down to Nivo.  Also I want to remind everyone of the Walk A Head of Cancer, being held on Father’s day in my hometown of Carroll, IA.  Details can be found here:

Thanks to everyone who has already donated!

Infusion #3 and Collapsed Tumor Cavity

We had another long day at Duke today.  We arrived shortly after 9 AM and didn’t get out until about 7 PM.  Today though we had the first MRI since I started the study, which began 6 weeks ago.  Unfortunately, the tumor cavity collapsed, making it very difficult to compare this MRI to the last.  So this MRI will now serve as the comparison for future MRI’s.

The tumor cavity collapsing isn’t as bad as it probably sounds.  It was described to us like taking scoops out of Jello and eventually the sides just cave in.  It shouldn’t cause any negative neurological problems, it’s just the brain figuring out there is more room available and it’s using the available space.  When it collapsed it did relieve some pressure and the brain did start to heal in a couple different ways…the folds on the brain starting to appear and the ventricle is also starting to open up more.

The other part about the tumor collapse is the fact that the “white” area (tumor or scar tissue) on the MRI is much brighter.  The Dr basically used the analogy of a red balloon being blown up to the point where it looks pink.  Once you let the air out, it contracts and it’s red again.  I’ll have to post some pictures as they really show what is going on.  There was one area of concern that they are going to be keeping an eye on, but could be treatment related.

So overall the MRI showed some positives and negatives should know much more in 6 weeks I get the next MRI.  I also got my 3rd infusion of ippy and nivo.  So just one more infusion of the combination, and then it just goes down to nivo.

All in all things continue to go pretty well.  No real side effects from the ippy or nivo, so I’m lucky there.  I’ll do another post in a couple days once I get some of the lab results back.

Walk Ahead of Cancer

One of the things that always keeps me positive is knowing that my family and friends will always be there for us, no matter what.  From letting us stay at their house when ours flooded (thanks Dave, Lisa, and AG!), to watching Caroline when we have to go to Dr. appointments, the outpouring of support has been tremendous.  Well now my family back in Iowa is putting on a walk titled, “Walk Ahead of Cancer”.  Do I have a great family or what?

The walk is going to start at 9:00 AM on June 15th at Swan Lake State Park, in my hometown of Carroll, IA.  The is a 3.8 mile loop around Swan Lake which everyone will be walking and if you finish you get a free A&W hurricane…a hurricane is A&W’s equivalent of Dairy Queen’s blizzard.  I actually used to work at both A&W and Swan Lake while I was in high school.  I don’t want to talk bad about either one, but let’s just say one was the worst job I’ve ever had!  Hint, it involved cutting railroad ties without power tools :)

I know most of you are probably not going to be able to attend, and honestly I’m not even sure if I am going to be able to make it.  If you are not able to attend, donations can be made payable to Walk Ahead of Cancer, c/o United Bank, 609 N. Clark St., Carroll, IA 51401 or online at  I want to stress that all the money collected will go towards brain cancer research.  Below is the official guide to the event.

Walk Ahead of Cancer

In other news I got the second infusion of ippy and nivo a week ago on Monday.  So far really no adverse side effects.  Everything going really well so far.  Next infusion is a week from Monday, and that also includes an MRI where we’ll be able to see what is going on in my head.  After that is another infusion of ippy and nivo, in 3 weeks on June 2nd.  Then they remove the ippy, and just get nivo going forward every 2 weeks.

Thanks everyone for your continued thoughts and prayers!

Recovering from a Double Pneumonia

As if I’m not unlucky enough, I somehow managed to catch get a double pneumonia this past week.  Honestly it wasn’t that bad, and it was only after they told me I had it did I start to feel worse….or maybe they caught it early before it got worse….either way I’m feeling much better now.  They gave me some antibiotics that really seemed to knock it out before it got any worse.

Since my normal Dr. couldn’t get me in, she recommended we go to the ER.  I felt pretty stupid going to the ER for what at the time was just a fever and chills, but we did it anyways.  Once we got in the back and they took my vitals, my temperature was normal…at my house an hour earlier I was running a fever of between 102 and 103.  They then checked my blood to make sure my immune system was working and finally did a chest X-Ray.  The chest X-ray revealed some masses in both lungs, and they then wanted to do a CAT scan to check for clotting, which is apparently pretty common on cancer patients.  Fortunately the CAT scan did not show any clotting, but further confirmed the double pneumonia.  All that was last Tuesday.

Yesterday I followed up with my Dr. in Charlotte, and she did another set of chest X-rays.  She said they looked much better, and if anyone was ever curious about what my lungs looked like in an X-ray, below is an image.

Chest X-Ray







We’ll be heading up to Duke on Sunday for the next infusion which is scheduled to take place on Monday.   The first infusion really wasn’t that bad, I don’t want to jinx myself, but I felt pretty normal afterwards.  I should also add they don’t think this pneumonia was caused by the drugs they gave me.  The drugs they are giving me are supposed to take the brakes off the immune system and make it attack the tumor.  We’ll see what happens as I get further into the study.

Officially in the Trial!

As I’m typing this I’m in the process of getting the first infusion of Nivolumab and Ipilimumab!  We were very relieved to find out that I  was getting both drugs as Ipilimumab, has shown quite a bit of promise with other forms of cancer, the big one being melanoma.  Now we just have to see how I tolerate it, but so far so good.

It’s always nerveracking leading up to the start of the trial, as there are so many things that have to fall into place for you to qualify, the location of the tumor, the MRI results, your blood results, past clinical trials you’ve been involved in…the list goes on and on.  So when you finally get the infusions it’s a huge sense of relief.

It has been a long day up here (with little sleep last night), and we’ll be here for another hour before finishing up the infusions, then we’ll hit the road back to Charlotte.


Starting a New Trial on Monday

This coming Monday my wife and I are headed up to Duke to hopefully get our first treatment of Nivolumab and possibly Ipilimumab (Yervoy).  I’m saying hopefully because the final check I have to pass is some blood work first thing Monday morning (shouldn’t be a problem…knocking on wood now) and I say possibly because they aren’t going to randomize me into one of the 2 arms until Monday morning.  The reason for not randomizing is they have to give the drugs within 72 hours of being randomized and with it being the weekend they wanted to just wait until Monday.  I know for sure I’ll be getting Nivolumab, won’t know about Ipilimumab until I meet with the Doctors on Monday.

Below are a couple of shots from an MRI I had about 10 days ago.  Again I’m not an expert at reading these but other than the big hole where the tumor was it’s starting to look like a pretty healthy brain….at least that is what I’m told and since I’m feeling really good, I have no reason to think otherwise.

2014-03-13 - 2 MRI 2014-03-13 MRI






Thats all for now, will let everyone know how things go tomorrow!