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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Posted onJune 16, 2013|Comments Off on 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.
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!
Posted onMay 24, 2013|Comments Off on Shots from the 4-11 MRI
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.
Posted onApril 2, 2013|Comments Off on Long Time Since the Last Update
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!
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.
For the past 10 days, Laura, Caroline and I have been visiting my family back in Iowa. Visiting Iowa in February isn’t most people’s idea of a vacation…most Iowans probably wish they could go somewhere warmer…but when you have such a great family it really does turn it into a very enjoyable experience. It’s like staying at a resort in many ways. You have all your meals cooked for you, you don’t have to do dishes or clean up the house, plus we have great babysitters (Grammy and Grandpa) who absolutely love watching little Caroline while we go out or are relaxing around the house. We are going to miss it.
Coming back home also reminds us how truly blessed we are. We have very supportive families that continue to pray for us and keep us in their thoughts. My Aunt Mary arranged a meeting with Greg Cantwell, an 8 year Glioblastoma survivor. Greg lives in Iowa now and runs Greg’s Mission, a non profit dedicated to providing one on one support for people diagnosed with brain tumors. It’s the first time I’ve met a long term glioblastoma survivor in person and it’s nice to know they do exist! I think I’ll start my Bigfoot expedition next!
My Mom and Dad also hosted a get together for family in the area, and it was great to see so many of my aunts, uncles and cousins come by to wish us well. I really believe that a strong support group is one critical piece to beating this….and Laura and I have extremely supportive families and friends who would do ANYTHING for us.
Below are a few pictures from the week.
On the health related front, things continue to go well. Next big event is an MRI on Thursday. We’ll post the results as soon as we have them!
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!