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.
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.
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!
In doing some reading and research about cancer, I came across a very interesting story of a cancer resistant mouse. It takes place in a lab at Wake Forest (where I am currently being treated), and a professor by the name of Zheng Cui, who wasn’t studying cancer, but the metabolism of fats. Without getting into technical details (which I don’t understand), the work required that he infect large numbers of mice with cancer cells. None of the mice would survive more than a month, so this procedure required a continual renewal of “livestock.”
Until the day when a strange event took place. One mouse had rejected the injection. They injected it again, still nothing. They doubled the number of cancer cells and still nothing. They kept increasing the dose until they injected 1,000 times the usual does, but still the mouse did not develop cancer. Zheng began to suspect they might have encountered the impossible—a mouse that was naturally resistant to cancer. This mouse came to be known as Mighty Mouse. They bred Mighty Mouse with a normal nonresistant female and half the offspring were resistant to cancer. (more information)
After hearing this story my Dad thought it would neat to get Mighty Mouse tshirts. We are all hopeful that I am as mighty as the mouse!