Category Archives: Treatment Update

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!

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.

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.

ICT-107 Graduation

Today was a big milestone in my treatment not only because I had another good looking MRI but also because I received the last shot of the ICT-107 vaccine.   While I do wish I had more vaccination shots available, I’m grateful to have had the opportunity to participate in such an exiting trial.  It’s a great early birthday present for me and my family!

First the MRI.  It was really the first time that I wasn’t really nervous in the week leading up to it, but I’d be lying if I said I wasn’t nervous at all.  I woke around 4 AM this morning and couldn’t get back to sleep because I was thinking about it so much.  Even after the MRI my nurse pointed out how jittery I was while waiting on the results.  Luckily, they were once again very positive as stated in the conclusion section of the report:

Stable appearance [of] the brain since 8/7/2013.  No definite evidence of tumor recurrence….

The second event was the completion of the ICT-107 clinical trial for me.  It’s my understanding that only half the people that enter the trial will be able to complete it entirely, so I’m fortunate to be in the better half.  Based on the fact that the first milestone of the trial was 32 events (deaths), I want to say that the final analysis of the trial across all patients will be started when another 32 events occur.  Last I heard the results of the trial will be complete later this year or early next year.  A lot of people ask me if I will ever find out if I got the real vaccine or placebo and I really don’t know the answer.  If ImmunoCellular starts calling me for speaking engagements after the trial results are in, then you could probably assume I got the real thing :).

For those interested, here’s a photo of what the injection site looks like after getting the vaccination shots.  Sorry about the nudity 🙂


Now that I’m out of the trial, I will continue to be monitored very closely with MRI’s every couple months.  Glioblastoma’s don’t really ever go into remission, so barring any major medical breakthough in the field (which could happen), I’ll probably be under pretty close supervision the rest of my life…even though I’ll hopefully continue to be a very boring patient for the Dr’s and Nurses.

Ain’t Got No Time for Brain Cancer

Those of you that are following along on Facebook know that earlier today I had another MRI which looked good.  We are very fortunate to have things continue to go so well, and are extremely grateful for everyone praying for us and sending positive thoughts our way!

The highlight of the day was the good news, but before the MRI I was chatting with one of the usual MRI techs  and talking about how I was hoping to keep the streak of clean scans going.   I don’t know the exact phase she used, but it was something like, “Yeah, ain’t nobody got time for that”…she said it in a joking way, and she could tell by my expression I didn’t get the joke and then told me to look it up on YouTube.  I’m sure this has already made the rounds on FaceBook, but I completely missed it, and found it hilarious…I can always count on someone at Wake Forest to make me laugh on each trip.  If you haven’t seen it, definitely check it out below.

After watching the video, just like Sweet Brown ain’t got no time for bronchitis, I ain’t got no time for brain cancer.  To many things to do in life….watch my daughter grow up, spend time with my wonderful wife and family, the list goes on and on.

Great News Today

My neurooncologist tells me that I’m a boring patient, but in his line of work that is a VERY good thing!  I’m happy to report today’s MRI showed no sign of any activity.  I’m very fortunate to be doing so well, so many others with this disease can’t say the same.  Keep sending the prayers and positive thoughts our way as we are still at the very beginning of this quest and have a long ways to go!

Here’s a quick update of where I’m at in my treatment.

  • I’ve completed all 12 rounds of Temodar (chemo) without issue.  As long as things continue to go well, I will not have to take any more Temodar.  Hopefully in a few months my blood counts will get higher, but time will tell how much long term damage was done to my immune system by the Temodar.
  • I have one vaccination shot left that will be given in October.  At that point I’ll essentially be out of the study, but will continue to be monitored for signs of the tumor coming back.  I’m guessing that sometime in 2014 we’ll probably know whether I was given the active drug or placebo, as well as what antigens targeted by ICT-107 were present in my tumor.
  • MRI’s will be done every 2 months until October and then if all is still going well they will be moved to every 3 months for the foreseeable future…honestly not sure if I will ever stop having to have MRI’s.

So let’s all continue hoping and praying that I remain a boring patient!