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.
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!
After an MRI, I always ask for a copy of the CD so I can open it on my home computer and pretend that I know what I’m looking at. Actually I think I could have spotted the original tumor, but if everything is going well then it’s a lot harder to determine which is the right slide to show. Below is my best attempt to show the cavity where the original tumor was. Not sure if it’s right, but it’s probably close!
When you get the CD, you can browse all kinds of crazy images they don’t show you in the doctors office. Below are a few of my favorites!
Tonight is a big milestone in my treatment plan, it’s the last night of taking Temodar (the chemo I take)! It’s hard to believe that a year has gone by since starting radiation and chemo…the time has flown by.
I’m very blessed to have gotten through the 12 months without issue. A lot of people with this disease aren’t nearly as lucky. There are so many things that can go wrong, and to come out of it as well as I have is pretty rare.
We’d like to thank everyone for the support over the past year, especially our parents who have been a tremendous help. We’ve also been under the supervision of great team of doctors and nurses and Wake Forest.
Thank you everyone! We’ve got a long ways to go, but the start couldn’t be any better. At this point, I have one more vaccine shot and I’ll continue to have MRI’s every 2 months, the next one is June 5th.
As most of our Facebook followers already know, last Thursday I had another good looking MRI. You can read the full medical report, but it can be summed up by my favorite medical terms, “grossly unremarkable” and “grossly normal”.
The weeks before the MRI are always difficult for us. For me personally I start thinking I have headaches and over analyzing everything, thinking the tumor has come back. Fortunately I stay very busy at work, which keeps my mind off of it. I also exercise quite a bit so I’m usually pretty exhausted by the end of day and have no trouble at all sleeping through the night.
My wife has a harder time with it than I do. She often can’t sleep, chews down her nails, and always asks how I’m feeling. To which I typically just say “fine”. Those of you who know me, know you typically have to pry information out of me. My wife is persistent and it usually comes out that I have a small headache which is typically just sinus related. This time of year in Charlotte, everything is just coated in pollen, so it’s really no surprise that my allergies act up. But nonetheless she still worries about me very much, which I’m hoping gets easier for her with each good MRI.
When you get the news back that everything looks good, it is a huge relief…it is like a huge weight being lifted off your shoulders. I feel like a completely healthy person when I get the news, ready to take on whatever comes my way. The days after the MRI are usually the time when I cheat on my diet a bit, I don’t really eat any sweets and don’t miss them at all, but pizza is the one food that I do miss. So I’ll usually have a piece or two to celebrate. Luckily though my wife gets me back in line, cooking healthy meals and always reminding me to make my veggie juice.
That’s all for now, I’ve got quite a few posts saved as drafts which I’ll hopefully get out in the coming weeks.
It’s been a long time since the last update, but things continue to go as well as could be expected. Saturday night was the end of my 10th round of chemo and I’m handling it pretty well. Really the only side effect at this point is fatigue during the day.
Given that I have very little updates on my health to report, I’ve been busy updating the website with recent test results and if you check them out, they are holding pretty steady. A few of the stats like the white blood count and weight continue to drop, but I’m in the home stretch with only 2 rounds of chemo left.
One new area of the site is the cards section. If you check it out you’ll see the tremendous amount of support we have received from family and friends. That support really gives us more strength to keep fighting everyday. When so many people are behind you, it’s motivation to fight even harder. Whether it’s choking down nasty vegetable drinks, eating heads of garlic, or sweating it out in a steam room with naked old men (that’s a topic for another blog post!), when everyone is watching it’s a lot harder to make excuses….although with this condition you have quite a bit of motivation already.
Next big event is another vaccination and MRI on April 11th.
No post would be complete without a picture of Caroline and I. Below is picture of us just taking it easy on Easter!