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!
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!
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.
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 http://www.youcaring.com/ChadMosman. 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!
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.
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.
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.
Thats all for now, will let everyone know how things go tomorrow!
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 :(.
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.
Before the most recent post, almost 2 months had passed since the previous post and a lot has gone on in my personal life. My wife is always telling me I need to make the blog more personal, and while that really isn’t my personality I’m working on it. So here we go!
First was a little vacation with my wife’s family to Isle of Palms. We had a great time just enjoying the beach and all that goes along with it. My sister in law has children several years older than my daughter and they wore me out in the ocean and on bike rides around the island.
The next picture was taken in the pavilion where they have an amphitheater setup, but all the kids wanted to do was climb up and jump down each of the steps built into the hill…we must have done it 100 times. If I would have been wearing my Fitbit, I probably would have earned my Mt. Everest climbing badge!
The final beach picture is one of Hollywood Caroline and I getting setup to fly our Monkey Mike kite on the beach. Yes, the kite name really is Monkey Mike, and not a reference to my father 🙂
The next big event was Caroline’s 2nd birthday. We blew up a bunch of pink balloons and covered her floor with them while she was sleeping (my wife saw it on Pinterest…we aren’t that creative, but my wife is all over Pinterest coming up with creative things to do), and when she woke up we filled her crib with them and took a couple pictures.
The final birthday picture is Caroline at her party. We had a dual party with some friends whose daughter was turning 3 at My Gym. From the picture below you can tell that Caroline certainly had a good time in her over the top birthday outfit!
On a more serious note, I think that everyone battling a serious illness or disease needs to have really strong motivation to fight as hard as they can everyday. Something that makes life worth living. Something that forces you to stick to a diet. Something that forces you push out extra reps in the gym. Something that makes you fighter harder each day. For me that is Caroline. I want her to remember her father (my wife is a close second, but she already knows me 🙂 ). That’s the first goal, and I’ll probably have to be around for another 2-3 years before that happens. I plan on being around much longer, but with any long term plan you have to break it up in to smaller pieces and celebrate reaching the milestones.
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.