“They” never said that the week before an MRI scan is a special kind of hell. From co-workers exposing Tom to a nasty bug to a question on insurance coverage, we came into this scan more than a little frazzled. Luckily Tom didn’t get sick and the insurance got straightened out so that just left the big one.I make it a point to go to the scans to show Tom support, but also because if there is a recurrence, all the stories of others say the tech has the patient stay put and a doctor is called. I was sitting in the waiting room toward the end of the hour and the nurse who is running the MRI trial Tom was in came and sat next to me and gave me (what I interpreted as a concerned look) and asked how I was doing. I made small talk and caught her up on all things Tom and then the paranoia hit me that she was stalling until a doctor could come see us. Then she said she was hoping for a good outcome on his scan for him and left. Whew. And they let us leave. We didn’t get any early “it’s all clear” signs that we have gotten before the appt so we waited the 24 hours getting progressively more nervous. The resident checked Tom out and said he was doing great and said he was going to just now go look at the scan with the head neuro oncologist and would be back. 20 min later they finally came in with “looks good!”. Whew!!! It took them awhile because they were debating if the cavity where the tumor was had shrunk since the last scan. It takes awhile for a week of fear to leave your body but we are feeling pretty elated now. They even bumped Tom out to every 3 months for scans vs every 2 months so another good sign that things are moving in the right direction. Tonight Tom starts another round of chemo and tomorrow we see our favorite, Dr. Jerry. As always, thanks to all of you for your support and strength! I hope to have Team Food Baby up and running for this year’s Tumor walk by the end of the week!
When we started this journey, Tom sought out resources and he came home from the library armed with books. The book that caught my eye in the pile was Defy and Conquer by Mindy Elwell. She was fighting an astrocytoma (grade 3) but had a much harder go of it than Tom has had to date. Her book was the first “resource” we had for the Keto diet and her success with it. Her story and her spirit inspired me and we picked up lots of tips for talking to the doctors. I had taken to following her story along with two others-Adam Blain-author of Pear Shaped (glioblastoma) (hilarious) and Bryan Bishop author of Shrinkage (inoperable brain stem tumor) that hit a chord with us as he was diagnosed shortly after his engagement. Following these people, I share in their victories and try to glean whatever I can that may be useful to us in our own journey. Tom also corresponds with a blogger in New York who is about 6 months ahead of him from when she was diagnosed and is also using Optune and she’s been another great font of strength in all this.I had watched this past month or so as Mindy’s story took a turn for the worse and today learned that she had passed. She stretched her 18 month prognosis into three years with her loved ones.
My heart absolutely aches for her family and friends. (There is info in the obit about how to donate to a trust for her kids). I love that her legacy and story of love, hope and courage will live on and we will keep up our fight to honor her memory now too.
Okay Mindy, we’ll keep fighting. So who else is out there that is beating this? Well I found this lady-a 16 year glioblastoma survivor (!!!) and a semi-local woman at that.
This woman is incredible. Her tumor keeps coming back and she keeps knocking it down each time. I’m really looking forward to reading her full story.
And who knows? Maybe some day someone in our situation will look to Tom’s blog as a beacon of hope during their dark hours. If we’re really lucky, and if I can ever get him to sit still long enough, maybe we’ll even get a book out of him.
Wish us luck for tomorrow. Results late Wednesday.
I did not want to get out of bed to do this race. It was raining and I knew it was going to be muddy and it was going to be a bitch to clean my bike and it was going to be a lot of suffering…
What I am good at is registering, getting excited for a race, getting all my stuff ready, then the day of not wanting to go. Jessie on the other hand is great and saying “suck it up buttercup, you are going” and she is right. If I make her get up early on a Saturday or a Sunday I have to pony up and go. My ONE saving grace is the weather forecast showed the current rain pushing through and having a dry race.
Corn Cross has been going on for a couple of years now and I have heard so many great things about it but could never schedule it in. While Sad to not race Krugers I was excited to try out a new course and it did not disappoint. When we got there it looked a lot longer than it was. I think they said each lap was 1.5 miles but it looked like 2 to 2.5 miles. When you have a huge farm to spread out on you sure can make a course look intimidating. I don’t think it really rained much out there as the mud was very tacky. The thick peanut butter stuff that packs onto everything and is a real pain to clean since it drys so fast and is sticky. High quality farm mud. Since I never raced here and did not get to pre-ride my first lap was just figuring out where to go. After that I could try and really “race” – HA! Again just with the older guys that started behind us. My main competitor (just like at Heron Lakes and Barton) was over 70, oh how the mighty have fallen. I will not see the results until Monday but I know that I passed a few guys in my race. Jessie got some pictures to document that. This was the strongest I felt but god I was glad it was over. Again Patrick made it out. Shared suffering is so much better than suffering alone.
Now things are bittersweet. I don’t have to get up early on the weekends and deal with a muddy bike and a muddy me and make myself want to vomit but Cross is such a mental sport (it is for me anyway) I was just getting my head back into it. I listened to a podcast back in the spring, I think it was one where they interviewed Angela Duckworth that wrote the book Grit and she mentioned that her family has to do one “Hard Thing”. I kept telling myself – go do your hard thing, and thanks to amazing support from Jessie, I was able to do my hard thing every weekend. Now my “Hard thing” can just be to go mountain biking and have fun. Most of the time I don’t want to vomit when I am on my mountain bike. It is a much more relaxing event.
I learned a lot about myself this year and am looking forward to starting my training for next year. All I can do is improve.
Barton is ALWAYS a brutal race. Two nasty runups – it is long and hilly, always wet and muddy, and is a great finish for the Cross Crusade. While a little bummed I did not do more Crusade races I am glad to have done Heron Lakes and Barton. They are both great courses and really challenge you. This course is so spread out Jessie could not run around too much and get pictures – PLUS I was pretty shot and did not make my last lap. I was the cut off for our group. While Heron Lakes was just a victory getting out there, Barton ( I knew it was going to be tough) was a severe blow to my mental state. In the first picture I started way up at the front. I have NEVER started that close to the front at Barton. Going back over the years almost every picture shows me staging literally in the last row. On the first lap I had so many guys go by me. Very depressing when I used to be one of those guys that passed the slower riders up front. That was one of the reasons I always liked starting at the back of Barton. I was usually at my strongest by this race and it was fun to catch and pass people. This time I was “that guy” in the way of the faster riders. On my last lap I even hit a barricade and knocked it over into the racers on the other side. My ego was more bruised than my body. That shut me down for the rest of the race. I did not want to do one more lap after that. I just wanted to finish w/o hurting myself. BUT I did have enough pride to beat the old guy in front of me. Sort of a sad state this year. All my battles have been with the 60+/70+ racers that start behind my group. Really fitness has not been the issue the recovery from the vestibular neuritis is the problem. I can turn pretty well to the right, the left is much more difficult, and anything really bumpy makes it hard to get a clear picture. I hope I can rehab out of that. Also great to see our friend Patrick Hunt out and racing. It is always fun to share in the suffering.
Krugers, our traditional finishing race, was canceled this year do to Single Speed World Championships taking place in December so I will do Corn Cross the following week. I have always wanted to do that race and now I can w/o the guilt of missing Krugers as I don’t think I could do back to back races.
Enjoy the pictures below.
Long-Term Analysis of All 695 Patients Enrolled in Novocure’s Phase 3 Pivotal Trial in Newly Diagnosed Glioblastoma Confirms Successful Interim Analysis Results and Demonstrates Superior Two- and Four-Year Survival RatesBUSINESS WIRE 4:00 AM ET 11/18/2016
QUOTES AS OF 10:48:27 AM ET 11/18/2016
Patients treated with Optune® together with temozolomide demonstrated a significant increase in progression free and overall survival compared to patients treated with temozolomide alone
EF-14 patients treated with Optune together with temozolomide experienced a 70 percent improvement in survival rate at four years compared to patients treated with temozolomide alone
ST. HELIER, Jersey–(BUSINESS WIRE)– Novocure(NVCR) announced today that a long-term analysis of the full trial cohort from its phase 3 pivotal EF-14 trial of Optune® in combination with temozolomide for the treatment of newly diagnosed glioblastoma (GBM) confirmed the superior survival results seen at interim analysis. The long-term analysis demonstrated superior two-, three- and four-year survival of patients treated with Optune together with temozolomide compared to temozolomide alone. The interim analysis results – published in the Journal of the American Medical Association (JAMA) 1 in December 2015 – showed significant extension of both progression free and overall survival in newly diagnosed GBM patients receiving Optune with temozolomide compared to temozolomide alone.
EF-14 Principal Investigator Roger Stupp, M.D., Professor at the University of Zurich and Director of Department of Oncology at the Zurich University Hospital, Zurich, Switzerland, will present these late breaking results at the 21st Annual Scientific Meeting of the Society for Neuro-Oncology (SNO) on Nov. 18, in Scottsdale, Arizona.
“The analysis of the full dataset confirms the improvement in both progression free and overall survival we saw in the trial’s interim analysis, and demonstrates superior long-term survival,” Dr. Stupp said. “These mature results further validate Optune as a standard of care treatment option for glioblastoma, providing patients with a therapy that can extend their survival while maintaining their quality of life.”
“We are excited that Novocure’s long-term analysis of the EF-14 trial confirms the interim analysis results of superior overall and progression free survival, while providing new data on potential long-term survival benefits for newly diagnosed GBM patients,” said Elizabeth M. Wilson, President and CEO of the American Brain Tumor Association. “GBM patients need better treatment options, and it is a great day when new evidence shows that we are making progress in treating this disease.”
The long-term analysis of all patients (n=695) shows that:
· Patients treated with Optune together with temozolomide demonstrated a significant increase in median progression free survival (PFS) compared to temozolomide alone (median PFS of 6.7 months versus 4.0 months, respectively, hazard ratio=0.63, p=0.00005).
· Patients treated with Optune together with temozolomide demonstrated a significant increase in median overall survival (OS) compared to temozolomide alone (median OS from randomization of 20.8 months versus 16.0 months, respectively, hazard ratio=0.65, p=0.0006)
· The percentage of patients alive at two years in the Optune together with temozolomide arm was 43 percent compared to 30 percent in the temozolomide alone arm, a 43% increase in the chance of living two years.
· The percentage of patients alive at four years in the Optune together with temozolomide arm was 17 percent compared to 10 percent in the temozolomide alone arm, a 70% increase in the chance of living four years.
· Consistent with the interim analysis, the OS and PFS benefit of Optune together with temozolomide compared to temozolomide alone was seen across all patient subgroups tracked in the EF-14 trial, including patient age, performance status and tumor genetics.
· The safety profile in the long-term analysis was consistent with the interim analysis of the EF-14 trial.
“The long-term analysis further supports our data showing that Optune together with temozolomide is a better treatment option for newly diagnosed GBM patients compared to temozolomide alone,” said Asaf Danziger, Novocure’s CEO. “We believe these results will give health care providers further confidence in our therapy and transform the standard of care in newly diagnosed GBM. Our priority is to improve the lives of GBM patients, and we believe these results will help us to accomplish our mission.”
A few answers to questions we’ve been getting-How long does Tom wear the Optune device?
we’re currently approved for 6 months and then they will reevaluate
What’s next? another MRI and meeting with Dr. Jerry middle of next week.
And a cartoon:
While some people think of fall by the changing leaves, the cool crisp mornings and hot afternoons, pumpkins, apples, corn mazes, etc.
Jessie and I think of the best fall harvest of all, HOPS! The best way to enjoy them is the Portland Fresh Hop festival at Oaks Bottom. It is a fall tradition to gather on a glorious fall morning (well noon) and drink Fresh Hop Beer.
If you are interested in joining we will be there this Saturday Oct 1st from noon to …. enjoying my favorite festival of the year.
This will probably be my last hurrah before my next round of Chemo. Hope so see some of you there.
Sometimes, when I have a few moments to reflect on what we do I have no idea how we do it. These moments of quiet time I cherish.
Note: sorry this is going to be a long post as I am not as good as Jessie typing up quick updates. One, you will see we have been rather busy, two, I don’t really like typing on my phone to post a message, and three, I like to reflect a bit about what I am going to say.
It all started last week on Thursday when my niece Amy and her boyfriend stopped in on their way to the coast. We had a “mini” pub crawl through Tigard. Not our best showing but it sure was easier than going into town. We finished by watching the Beaver game at Big Al’s and while it looked like they had a shot to win it. They could not follow through.
Next day we had to get up for work and that afternoon we flew to Spokane for the start of our Labor Day whirlwind tour. Friday night went to dinner with my mom and sister once we got into town. Saturday we had a fun BBQ at my sisters house and got to meet my (ugh hate saying it this way but you know you are old when your nephews and nieces (the ones that YOU changed their diapers) start having their own kids!) Great Niece, Allie, new dog. What a great demeanor. She was playful and loving and goofy and fun. Perfect for a teenage girl (or a brain cancer survivor – hint hint Allie). A mix of a belgian malinois and blue heeler so you know she is going to be smart. She had the malinois coloring but the blocky head and smaller stature of a heeler. At some point Jessie and I will get a dog and something like this little gal would be a good fit.
Once everyone went home we went to visit Jax (Jaxon) and Tara. We always seemed to have a conflict on past visits so I have not seen him since he was a baby. It was fun to play with him kicking the ball around on a wonderful Spokane fall night. We got to play with some bugs and he just loves to run. Damn these kids grow up fast!!!
We then made a trip over to visit mom one more time before we had to get up at 4:45 to catch our 6 am flight to Boise. It was great to see her and let her know I am doing well. I have found it is one thing to talk to people on the phone or via email. When they actually get to see you it really sets in that I am currently doing quite well and expect to continue this way.
Sunday morning off to Boise for Tyler and Haley’s 16th birthday (Jessie’s nephew and niece). Seriously, this was a weekend to make both of us feel old!! Once we got into town we had a quick lunch and off to Idaho City and the hot springs. I guess there used to be a place here for quite a while but it got rundown. Looks like they got new owners (or an influx of money) and built a new facility that is very nice, TheSprings. If you find yourself in the area I recommend checking them out. After a good long soak we went back to town for cake (our second boont cake that weekend) and ice cream followed by dinner at a pizza place. Monday was hang with the twins time with Jessie being the math tutor and changing the word problems to have a “Portland Theme”. Haley is learning quadratic equations and here is Jessie explaining how we have goats to eat the blackberry bushes in vacant lots and wooded areas. (this replaced horses in the original problem as Jessie felt horses were not nearly as interesting as goats). Jason and Becky prepped for a BBQ (two in one weekend, nice!) as Jessie and I did our fantasy football draft. After the BBQ we visited Jessies family then headed to the airport for an 8:30 flight back to Portland. I think everyone got in at the same time as the airport was PACKED. I have never seen so many people waiting for buses to the economy lot. We had two red buses come in and both filled up and there were still people waiting to get on.
While it was a fun trip and great to see everyone – I was pretty pooped and ready to rest. Sadly, it was the start of going back to work full time and a packed week so the rest would have to wait. Will continue the week in another post to break these up a bit.
Another big milestone today-Tom’s return to mountain biking! I’m nervous but excited for him and this return to normalcy. It will be the longest time we’ve been apart since his surgery and the farthest distance. We bought him a new helmet last week that should be one of the safest out there. He’s been feeling really good these past few days and sleeping better now that he’s off the steroid. I know he’s in excellent hands as he’ll be going with Dr. Jerry and some of his best mountain biking buds. Take good care of my Bird you guys!!!