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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!

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!

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.


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 Clinical Trial Update

Last week the organization that is overseeing the ICT-107 clinical trial recommended that ImmunoCellular continue the ICT-107 trial.  Just a quick refresher, I am currently enrolled in the ICT-107 clinical trial and ImmunoCellular is the company behind ICT-107.

So the fact that they are continuing the trial is great news!  If they would have canceled the trial that would probably mean they think it’s doing more harm than good.  The somewhat sobering part of the news is the criteria that had to be met for this announcement to occur.  The way the study was designed, an interim analysis was to be released once 32 “events” have occurred.  In this study an event is defined as a patient death.  This really speaks to just how deadly glioblastoma is.  In the vast majority of clinical trials for other ailments if 25% of the patients die before the trial is even complete, they would probably stop the trial pretty quickly.  Glioblastoma is a beast though, and in the clinical trials for it the main goal is extending the life of the patient.

Nobody knows how many of those patients were on active drug or placebo and the final results of the phase II of the ICT-107 probably won’t be out until later this year or early next year.  If the results are good it will likely go onto a Phase III trial and then go to the FDA for approval.  I found this chart which goes through the typical stages.


So assuming everything goes well with the ICT-107 trial it will probably be somewhere around 2020 before the drug would come to market and be available to everyone.  Seems a bit crazy that the process takes so long.  You would think if a drug for such a deadly disease shows good results in phase I and Phase II, Phase III could be skipped or the placebo removed, but I don’t think that’s how it works.  Maybe they are worried about a scenario from the movie, “I Am Legend”, where a virus created for the purpose of battling cancer mutates in a plague that kills everyone.   There do seem to be a lot of zombie movies out lately, so maybe the government really is just trying to prevent a zombie apocalypse 🙂

Nothing much else to report, still feeling great overall and have been enjoying the summer with my family.  Below is family picture from our recent trip to Isle of Palms.


ICT-107 on CNN

There was a short piece on CNN this past weekend about the trial drug I am on, ICT-107.   Nice to see it being covered by mainstream media.  The phase I results are very impressive!  I blows my mind how scientists are able to develop something like this….it makes my field of work, computers, seem extremely simple in comparison.