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.
Posted onAugust 8, 2013|Comments Off on 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.
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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!
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.
We started on this journey a little over a year ago and today I’m happy to announce that today’s MRI showed no signs of progression. I feel truly blessed to have made it this long without a progression. From what I know the vast majority of people with a stage 4 Glioblastoma have had a recurrence by now. I’m basing that on the mean survival rate after diagnosis is something like 14 months…I don’t know where that comes from, but it’s thrown around a lot. I am by no means out of the woods, and with this disease I don’t think you ever really are out of the woods, so we’ll keep fighting.
While we were talking with the our nurse Jennifer today, we realized how so many things have gone right with the treatment. A great surgery, followed by the right clinical trial, at the right time. Add on to that a great team at Wake Forest looking after us. The medical side is undoubtedly a big piece of the success to date, but I also feel there are so many other factors which are contributing factors. The list is just too long to go into in this post so stayed tuned for future posts.
As my friend Ted recommended a while back, tonight we raised a delicious glass of carrot, broccoli, and cauliflower juice to celebrate (Katelyn, since it was a celebration juice we left out the Garlic). Below is a picture of this delicious treat. Don’t let the puke green color deceive you. And no Jennifer, it does not have twinkies, bacon, or oreos in it 🙂
On a more serious note, I know we’ve got a lot of people praying for us and we ask that you keep my cousin Mark and his wife Tracy in your prayers as they are going through a very difficult time.
On Friday we received the best Christmas present we could hope for, another good-looking MRI! Thanks to everyone for continuing to keep us in your thoughts and prayers. We can now move on to celebrating Caroline’s first real Christmas. Below are a few pictures we’ve taken already, you can see she’s not a big fan of Santa yet!
Overall things continue to go well with my treatment. It seems that before the past couple MRIs, I start getting little headaches, and my mind starts thinking the tumor is back. Laura is probably even more worried than I am going into them. We just try to keep our minds busy and not dwell on it. We are very fortunate to have such a supportive family and group of friends who always help us through these times.
My hair is starting to come back, but so far it’s coming in a lot thinner than before the radiation. I might have to give GLH a try. Never heard of GLH? Great Looking Hair is the spray on hair from the legendary Ron Popeil. Here’s the infomercial if you can’t remember it.
Of course I’m kidding, but it might make for a funny blog post in the future if it still stays thin.
Hope everyone has a Merry Christmas, a Happy Hanukkah, a Joyful Kwanzaa, a Spectacular Solstice, a Fantastic Festivus, and a Happy New Year….just pick all that apply!
On Monday I had another MRI and we are happy to report there was no sign of the tumor! It’s the best result we could have hoped for, so things are continuing to go really well! Our research nurse, Jennifer, finally got to the deliver the good news to us….last time the Dr. called me at home to deliver the good news before our scheduled appointment with Jennifer later that day.
It has been a while since I last made a post, as the past month has been crazy for me personally. I’ve had several big events happen in the past 30 days, including:
Celebrating my 36th birthday
Selling my company
Watching Caroline grow like a weed!
Speaking of Caroline, I can’t write a post on Halloween without including a family picture of her in her Ladybug costume!
Finally, I’ve updated my blood stats on the health dashboard. Overall things are looking good, a little low on some tests, but fortunately not too far outside the normal ranges. Hopefully all the candy I ate tonight will get everything back to the normal ranges. Just kidding, no candy for me, instead I had some delicious garlic and a spinach and broccoli juice. After the garlic I don’t have to worry about vampires tonight, but unfortunately it also repels my wife!
As most of you probably know the MRI results from last Wednesday came back looking really good. No signs of any activity. The Dr. went into some detail about how they use techniques called Perfusion and Diffusion to see if there is ANY activity and he said they didn’t see anything. Perfusion looks at blood flow, and since cancer needs a blood supply to live, it helps them spot activity early. Diffusion was over my head, but it has something to do with the way water moves around in the brain and what is happening at a cellular level in the brain. All I know is it looked good too.
Below is the image. Still have the hole in my brain, but it is continuing to heal and is a bit smaller than the last time. Thanks everyone for all the amazing support and prayers!
Last Sunday marked the end of this round of chemo. Overall I would say this round went very well. Taking the anti-nausea on a set schedule (even if I wasn’t feeling sick) really helped. I was able to maintain my appetite and overall strength throughout. The past couple days I have felt a little nauseous, but it didn’t knock me on my ass like the last round. Only 10 chemo cycles left!
Next big event is the MRI on August 29th. I continue to feel great so I am hopeful it doesn’t show anything. It’s a bit nerve racking leading up to it, but if it comes back clean it will be a huge sigh of relief….for 2 more months. I try not to think about it too much.
Continue sending prayers and positive thoughts my way!