Category Archives: Treatment

Down But Not Out

Well sometimes it takes some great luck to come out on top, and if today’s MRI is any sign, we are very lucky indeed!  We are so thankful for all the prayers, positive vibes, whatever you guys are doing, that are making this thing actually shrink in size.  Now before I get too far ahead of myself, this is a deadly disease, and I’d be kidding myself if I thought for one second this could be the end of it…but just for today we’re treating it like it is!

Here’s the MRI that was taken on September 7th, 2014.  You can see here that the brain is pretty messed up.  The swelling is somewhat out of control, which you can see by the brain folds not being present in the brain.

9-7-2014 7-45-10 PM

So fast forward to today, October 2nd 2014, and here is what the brain looks like today.



If you look at those you see the brain folds starting to come back.  Still not all the way back, but partially back.  You might also notice that there was a mid-line shift in the first position, which should have caused me to lose my balance…well my wife corrected me, I wasn’t able to get out of bed and required almost a week in the hospital stay 🙂

So at that point they decided to put me on Avastin. It’s something I said I’d never do, but I’m doing it now.  I guess the story there is sometimes you just have to trust your Dr.  So right now I’m taking a half dose of Avastin every 3 weeks.  I’m currently using Avastin to reduce the swelling, caused by the Ippy and Nivo. It really isn’t that bad.  I go in, get it, and for the next 24 hours I don’t really feel like eating much (I can still eat a lot), but then I get over it and move on.  The main side effect, is called the sexy voice, because it makes me horse :).  They are also weening me off the steroids and that should be complete in about 4 weeks.

When talking to the Dr today, she mentioned that some of the patients on this trial Ippy and Nivo, had actually gone through a biopsy, and they confirmed that it was the immune system doing it’s job on the tumor.  So all we can do is wait at this point for my next MRI on November 17th, 2014.

Well that’s about it.  Sorry for not posting in so long, it has been a long ride filled with highs and lows.  Just keep doing whatever it is you’re doing, and we are hoping this all turns out OK!

A Long Couple Weeks

This all started last week when I got an unexpected call from Duke telling me they wanted me to come up on Tuesday and stay up until my Liver enzymes came down a bit.  It was a bit of short notice, they called me up at noon and told us to be there that night!  The room I stayed in was really nice and here’s a shot of me working away….it was really all I could do to stay sane 🙂

Working Away!

I think I was probably the only person on the floor who could actually walk without assistance, and after a couple days they actually had to ask if I was the patient or what was going on.  The iv on my arm gave it away.

So we went in with my ALK Phos at 380 and came out with the ALK Phos at 280, which is still pretty high.  They also ran some tests on my liver and determined that it was a bit fatty.  They weren’t too concerned about that, they said it was probably just a side effect of the drug that I was on previously but are going to continue to keep an eye on it.

We finally got out of there on Friday and it was great to see little Caroline after spending her first nights with her friends.  A special thanks goes out to Rachel, Cara, Jonathan, and Brody, who took her in on very short notice!

That brings us to today.  After a slight mix up on the MRI on Friday…I had to do another MRI today….apparently the first test was incomplete, so we had to do it again today.  Luckily I drank a lot of water over the weekend to flush the contrast out of my body.

So after the MRI we got my blood checked again, and my ALK Phos was still at around 220 which is way too high to get any more drugs today.  When looking at the MRI, I have to admit it was a little scary.  Your first impression is the tumor is pretty big…I guess because it is.  When you look a little deeper at it, it does appear that the tumor is breaking up a bit more than in the past.  So what does all this mean?  For now, we are going to take a month off from all the trial drugs and try and get my steroids tapered down a bit.  We are then going to go back up to Duke in a month for a MRI and hopefully that will give us a little better idea of what is going on.  Here’s a picture of the MRI:


Yeah, I know that tumor area is pretty massive, but we are continuing to hope that it goes down over the next 30 days.  My Dr. did point out that it goes against all her judgement to do nothing at this point, but it appears that is what has to be done.  For this type of therapy to work, you have to give it some time to start taking effect, so that is what we are going to do next.

The good news is I continue to feel really good, so maybe that is a good sign!

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!

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.

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.


I’m Back and Feeling Great!

It has been WAY to long since the last time I posted, and I wanted to give everyone an update on what has been going on since the last post in early January. The good news is I’m still alive :), and at this point feeling pretty much back to my old self after another surgery on February 20, 2014.  There was a lot that has gone on leading up to the surgery, and then after the surgery that this blog post will go into.  It’s going to be a novel of a post, so stick with me as I go through everything.

Let’s start on January 8th, which is the last time I posted.  Two days after that post I had a seizure while sleeping.  That was only my second seizure in almost 2 years, if you recall the first time I had a seizure, I didn’t really know what happened and nobody was around to see, but based on how I felt and how sore I was it was almost certainly a pretty big seizure.  This second seizure happened while I was sleeping so I still don’t have any idea of the “signs” to be on  the lookout for.  The doctors almost certainly think it was just related to stress and that I was pushing myself to hard the day before, not being able to sleep and going to the gym at 5 AM.  Let me just say, the gym at 5 AM is way different than at 8 PM, which is the normal time I go…. at 5 AM nobody really cares what they look like 🙂 .  So while I was having my seizure, my wife called 911, and I got to take a ride in an ambulance to the emergency room.  I think it took about 30 minutes before I came to my senses again and realized what was going on.  This time around I think the seizure was much less severe.  The first time my entire body ached the next day, this time just my calves were a little sore.  My head hurt the next day, but I took some Tylenol and it cleared up.  By Sunday, I still felt a little out of it, but by Monday I was completely back to normal.  So unfortunately now I can’t drive for a few more months :(.

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The Battle Continues

Yesterday we went back to Wake Forest for the one month follow up MRI and the results were not what we were hoping far.  While the area of concern hasn’t really increased in size, it was more visible than the last time.  Here is the conclusion from the MRI report (just in case there are any medical professionals reading along):

Status post left frontal craniotomy and resection of left frontal lobe tumor. Increased nodular enhancement about the resection cavity with surrounding increased gyral thickening and edema compared to exam from 12/5/2013. Findings are concerning for recurrent/residual tumor.

Today the medical team at Wake Forest met, and they are recommending another surgery to remove what is almost certainly the tumor coming back.  At this point the tumor is very small, much smaller than it was for the first surgery, and it’s in the same place, which is apparently easy to get at.   From what I’m told the surgery should be pretty straight forward.

Over the next couple weeks we’ll be evaluating all our options and coming up with a plan going forward.  Once we know what we are going to do we’ll let everyone know.

Not the Result We Were Hoping For

On December 5th, I another MRI and the results weren’t quite what we were hoping for.  Previous MRI’s had all looked pretty good, but this report included the following sentence:

These findings raise concern for disease progression, although treatment related changes can have similar appearance.

When you are going through the treatment, disease progression is one thing that you don’t want to hear….but the odds are that almost anyone battling glioblastoma will hear it sometime in their life.   The second half of the sentence also says it could be nothing, but of course you can’t stop thinking about the first half and what that would mean.  It would be very normal for it to be scar tissue from surgery or damage caused by the chemo and radiation.

My neuro oncologist always goes over the MRIs in detail with me, and he showed me the area of concern and it was very small and faint.  Once I get a copy of the MRI CD, I’ll try and find some pictures to post.

After getting the results, the initial thought was since it is so small we’ll just wait the usual 2 months, but after some discussion we decided to do it at 1 month, mainly just for my piece of mind.  They did say they aren’t sure it would really change much in a month, but I feel much better doing it sooner than later.  That is one of many things I really like about Wake Forest, is that they get to know their patients and are willing to listen to their concerns and accommodate their requests (within reason I’m sure, really haven’t asked for anything too crazy…yet.  Look out Jennifer! 🙂 ).

Although this news is not what we were hoping for, I otherwise feel great.  I no longer have the fatigue that went along with the chemo and radiation.  I am also  still hitting the gym several days a week and walking most other days.  Given that I  have no neurological deficits, it does give us  hope that perhaps what appeared on the MRI is just treatment related.  Hopefully we’ll know more in the coming months and we’ll keep everyone updated as we get the information.