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.
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.
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.
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.
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.
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.
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.