Results from December 2013 visit with the Duke medical team

Monday and Tuesday we visited Duke for John's "every 8 weeks" MRI and the follow up with Dr. Friedman and his team to review the results.

This review, unfortunately, revealed recurrence of the tumor.  This is typical of GBM but we had hoped to forestall it longer.

As a result of this discovery we have moved to a new treatment plan. He has been on a monthly regimen of Temodar, which is standard of care. In addition, under the auspices of the trial at Duke, he has been undergoing bi-weekly infusions of Avastin.

The new regimen will discontinue the use of Temodar. He will continue bi-weekly with Avastin and add in an infusion of CPT-11 (aka irinotecan) on a bi-weekly basis. Every fourth week he will also be infused with Carboplatin.  So he will alternate every two weeks receiving either two drugs or three.

We had hoped that John would qualify for another trial underway at Duke that takes a polio virus, re-engineered to avoid its life threatening traits, and directly injects into the tumor.  The result is that the virus seeks to destroy the cell and additionally triggers an immune system response to attack the infected cancer cells.

However we learned that, due to the location of the new tumor, he did not qualify for this trial.

Clearly this wasn't the news we would ever want to hear but we remain positive that some good result will emerge at the end of this journey.

Thank you for all your support through these challenging times.  You cannot ever know how much we value it.

Oh no trip to Durham is complete without a BBQ report. Based on the recommendation of our friend Cedell, we journeyed out to Morrisville, NC to check out some very fine BBQ at Smokey's BBQ Shack.  I can personally testify that the brisket sandwich is delicious.

October Duke visit

Melanie and John have just completed the visit to Duke as required by the clinical trial. The visit included the usual round of MRI, lab work and cognitive testing. He passed all tests with flying colors! The next checkpoint is at the beginning of December.

They had an extended weekend in North Carolina, visiting the Outer Banks on Sunday and Monday. An added bonus was Missy, Melanie's sister, was able to fly down from Connecticut and join them. They will post some pictures and stories from their trip soon.

August Duke Visit

This is  a quick note regarding John's most recent visit with the trial doctors at Duke. As always he had his MRI on the Monday and received the results on Tuesday. The results were very good, even better than the results from June. The swelling seen in June has receded further.

We will be returning to Duke September 30-October 1st for the next update.

Why did John get brain cancer? The answer is Lynch Syndrome

We were puzzled for a couple of months after we received and understood John's diagnosis of glioblastoma multiforme aka GBM. Everything about this form of cancer would suggest that in no way should a healthy 22 year old be susceptible to it. This is a disease that presents itself in a vanishingly small percentage of the population and almost always in patients in their fifties or sixties.

It was only this past February, when meeting with John's radiation oncologist  Dr. Peddada, that we gained some understanding. Dr. Peddada, in the course of reviewing our family medical history, homed in on Melanie's paternal side. The Satkowskis have an agonizing history of early onset cancer, primarily but not limited to, colon cancer. As Dr. Peddada took note of the fact that Melanie's father, uncle and all three of her aunts all had early onset colon cancer, with the aunts additionally suffering from ovarian, uterine and, in one aunt,  brain cancer he came to the conclusion that the Satkowskis were subject to the genetic mutation known as Lynch Syndrome.  A very simple test on John that was then run on Melanie confirmed his supposition.

A good explanation for what Lynch Syndrome is can be found at What is Lynch Syndrome from the NIH

Another good resource for Lynch info is at the UCSF site KinTalk

The impact of the knowledge provided by Dr. Peddada, and subsequently by the Lynch Syndrome team at UCSF, is quite profound, both on our immediate family and on the Satkowski's.  However, with this knowledge members of the family can understand if they are exposed to this mutation and take the important step of screening for the various Lynch cancers. There is some consolation in recognizing that John's diagnosis has provided a chance for other members of his family to anticipate and deal with these cancers in a proactive way, thus enhancing their lives.

Hawaii

The week following graduation in Spokane, John and two of his past roommates, Brian Biggs and Jordan Madrid headed to Maui for a bit of relaxation.  John had never been to Hawaii before and greatly looked forward to the visit. The fact that he was able to enjoy this trip with these two friends was a real treat.

Thanks to Jordan's mom they stayed at a condo in Kihei.  This was the view that they had to live with from the condo:

There were plenty of activities at the condo including tennis and shuffleboard plus they had access to a BBQ.  As you can see below Federer has nothing on these guys...

Impressively for recent college grads, they managed to get up at 2:30am, make breakfast and then hit the road at  3am to reach to the top of Mt. Haleakala for sunrise.  They all agreed it was worth the lost Zs.

They also hit the Big Beach at Makena in Wailea but on a day where the waves were just too big, coming in large swells from the south, to try any boogie boarding. The lifeguards made a point of announcing the shutdown while looking straight at the lads. Wonder why?

Koki Beach

The next day they drove the Road to Hana, 100 plus twists and turns. Along the way they sampled lots of banana bread. ;)

Koki Beach

They stopped off at Koki Beach and got their boogie boarding in.

They also got in a round of golf at Old Blue Wailea.  Hard to hit a golf ball when looking at these views.

John and Jordan

They finished off their trip with a Luau in Lahaina!  Plenty of Kalua Pork, fresh fruit, Filet Mignon, fresh fish,taro and grilled chicken.  John stuck to guava juice but the boys gave two thumbs up to the Mai Tais.

The next day it was back to the reality of the Bay Area and Portland but this was a trip they won't forget.  Rumor had it there were plans being laid on the flight home for a reprise.

June Duke Trial Update

A quick update  - John and I have just returned from the June visit to the Tisch Brain Tumor Center at Duke.  John is participating in a clinical trial that the team at Duke is driving. He is required to check in with the trial team every eight weeks. The main feature of that check in is an MRI which will detect recurrence of a tumor.

This visit showed no recurrence which was wonderful news. We will be heading back to NC in August for the next check in.

While in Durham we were able to see a couple of ex-MMC Networks teammates,  Cedell Alexander and Dave Swingle. Cedell was kind enough to host us at his house for a BBQ and a little last round action of the US Open.  It was great to have home cooking on the road, especially the killer potato salad and baked beans.  They were excellent.

Gonzaga Graduation Weekend!

Mother's Day Weekend was especially sweet this year. As has been done for many years now, Gonzaga University Commencement is celebrated on this weekend with the graduation ceremony on Mother's Day itself.

John has looked forward to this day since April of 2009 when, upon his return from Accepted Students Weekend at GU, he announced his university selection to his mother and father at the airport. He climbed into the car and declared that "We should make plans to be in Spokane on May 12th, 2013. That is when my class will graduate."

Although John was unable to attend school during his senior spring semester, he was eligible to "walk the stage" with his classmates. The school's support continued to be outstanding throughout the weeks leading up to graduation as Shari Rasmussen, Susie Prusch and Jolanta Weber shepherded us through graduation preparation from afar.

We arrived in Spokane on Friday and immediately had to drop John off with his roommates at their house. He had missed them quite a bit and he wanted to spend as much time with them on this final college weekend.  Plus, they had his cap and gown!!

We proceeded to our rental house in South Hill.  There we were joined by all of the family that came north or west to be with John. It was a good sized crew. We were fortunate that his aunts Joyce, Jackie, Tammie and Missy, and his uncles Bill and Mike made the trip.  John's cousins Courtney  and Juliana,  along with family friend Patty Kirchhof, out from Connecticut, also made the trip.

Friday night started what turned out to be the one constant on the trip, dinner at our rental with the family.  We had a great setting to host our family, a large kitchen and lovely patio setting, which was fortunate as GU Graduation Weekend it is a nightmare at the restaurants! Everybody pitched in and we had a great first night.

Saturday morning we picked up John from his house and headed over to the Senior Toast at the Martin Center. We had a nice few minutes with President McCulloh at the Toast before he had to put the finishing touches on his commencement address.  Following this event we proceeded to the McCarthey Athletic Center for Baccalaureate Mass. It was a beautiful service, the second to last event that the seniors would share.

John, David, Brian, Andy Z, missing Andy Kelly

Back to the house we went for another meal and a chance to watch the Warriors playoff matchup with San Antonio.  The 102-92 loss turned out to be the only sour note of the weekend! 

Sunday was  a  beautiful,  warm day.  We were up an at it early as the seniors had to head into their corral at 8:30 am. The academic procession began on time and the largest graduating class in Gonzaga history streamed in to the Spokane Arena.  The speeches were inspiring and appropriately short :) and the reading of the graduates proceeded apace. Finally the big moment arrived and we see John striding across the stage to receive the diploma folder from President McCulloh.

He made it!

Now as you probably know from your own experience, there is no diploma in that folder as final grades aren't in yet and final bills have to be settled. The diplomas follow in the mail. However that folder wasn't empty.  No, it contained the application to join the Gonzaga Alumni Association. They don't miss a beat at GU.

Following the recessional from the Arena, to the tunes played by the Scottish bagpipe and drum corps, the seniors graduates of the class of 2013 gathered for some final pictures and goodbyes.  While an exhilarating time it is also all too bittersweet.

The parents and Godparents managed to get in the pictures too.  We are soooooooo proud.

Dad. John and Mom

Well, it was back to the house for one last dinner and to help celebrate we had a little of Gonzaga Red!

We even had a surprise visit at dessert from the Biggs, Karen, Tom and  Brian GU '13. It was a great finish to the weekend.

John was off to Hawaii a few days later with Brian and Jordan.  There are some great photos from that trip which we'll post soon.

Now it is nose to the grindstone time as John has a couple of classes he is finishing up in summer school to complete his degree requirements. He is furiously banging away at his projects, quizzes, tests, papers and online discussion boards.  We hope to celebrate his accomplishment in the Bay Area sometime in July. Stay tuned.

Update from the April Duke visit

We had a good visit to Duke on April 22nd. John's blood work, vitals, appetite, and strength remain very good. The MRI, which is the defining diagnostic, showed no sign of tumor recurrence. There was one white spot that could have indicated progression of a new tumor. However post-radiation MRIs often show "pseudo-progression" from the swelling left by the treatment and the Duke team were not concerned. Additionally, when we reviewed the MRI with John's radiation oncologist, Dr. Peddada, later in the week in San Jose, he dismissed any concerns as the location of the spot was exactly where he had applied the highest dose of radiation. We go back to Duke in mid June and again in August. To celebrate the good results we spent that evening at the Durham Bulls ballgame with our friend Leonard. While we looked, we never could find Annie Savoy...

Outside the Duke Brain Cancer Center

Earlier in the month John was able to attend the Giants (that would be the first place, World Champion Giants) Opening Day and the Warriors first round playoff action. Here are a couple of pictures from those events as well as one from the Bulls game.



John also paid a visit to his friends at CloudOn (http://www.cloudon.com), where he interned last summer. They are great friends and it was a wonderful experience working there. If you are looking for Office support on your Android or Apple mobile products pay them a visit. This was an unpaid, celebrity endorsement :)

We are in Spokane this weekend for John's graduation from Gonzaga. It is an exciting time for the students and their parents. We are fortunate that so many of our family traveled here to help celebrate. Today, Saturday, we are attending the Senior Toast and the Baccalaureate Mass. Tomorrow, Mother's Day, the Class of 2013 processes into history.  We'll post photos next week from the weekend.

This coming Wednesday John and two of roommates head to Maui for eight days of surf and sun.  I am sure there will be plenty of tales, a few of which may even be told to his parents :-)

Upon his  return he starts summer school to complete his degree requirements.

John is enjoying his time home, showing remarkable patience with his situation. We are very fortunate he has been so positive.He supports us as much as we support him.

Thanks again to all of our friends and family who have been praying and thinking of us. Your kindness has value beyond definition.

Busy March for John

The last few weeks of March have been very busy for all of the San Jose McKennas. John's first cycle of the standard of care treatments are at an end plus he had many activities, visits and plans to enjoy. He truly enjoyed the time spent with each of you. You will find  most everything (that I could keep track of) summarized below by following the links in this post.

Thanks
John


Treatment status
Basketball - Gonzaga, Warriors and Friday Nights
Bellarmine visitors
GU Spring Break and a return to GU in April
A quick trip to SoCal to visit family and Mr. Mouse
Hawaii planning underway
Graduation plans

 
Treatment status
We have been looking forward to Tuesday, April 2nd. Well we are here. John completed his round of radiation therapy and first cycle of Temodar on Tuesday. He will continue his every two week regimen of Avastin as part of the clinical trial with Duke University.

Radiation Graduation

He has done very well in handling all of these treatments. He's had the standard patchy hair loss from radiation. He went to the Bellarmine Barbershop last Thursday to have have the remnants removed and go with the Yul Brynner or Michael Jordan look.  He has some sensitivity in his gums, which leads to some bleeding, and a couple of weeks ago he had a bout of the hives which were successfully treated with a short cycle of steroids. We did notice a bit of the predicted fatigue hit  last week, though he did a really good job of powering through.

In an earlier note I mentioned John would be getting an MRI on the 4th and heading to Duke on the 8th. There was a bit of a mix up there. The MRI should not be taken till two or three weeks after the end of radiation.  As a consequence, we pushed the trip to Durham out to April 22nd through the 24th. We will be onsite with the Duke team  on the 23rd. Unfortunately that means we will miss seeing John's friend Taylor Martin (T-Mart) play for Coker College in Raleigh on the 9th.  We are pulling for Coker to make the playoffs which will take place in North Carolina. So Go Cobras.

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Basketball - Gonzaga, Warriors and Friday Nights
The past few weeks have seen plenty of excitement on the basketball front and John has been in the middle of it all.

The buzz surrounding Gonzaga basketball being ranked #1 and its seeding in the NCAA tournament was great, well,  till its downfall in the tourney. Wichita St is clearly the real deal, making the Final Four. He also has  gotten out to see the Warriors with family, a trip to the NCAA 2nd round here in San Jose, as well as Friday night hoops with Darrell, DK, Troy, and his Harker friends, John has not been far from some level of the action with the round ball.

We were able to go to 2nd round action of the NCAA tournament due to the kindness of our friends the Grassers. We saw a very good game between Cal and UNLV and a somewhat lesser :) game featuring Syracuse and Montana. I wouldn't blame Vegas if they thought they were playing in Berkley. There was way more blue and gold than red and white at the tourney.  

We've gotten to a couple of good Warriors games these past few weeks and have another on tap for later this week. John and his cousins Courtney, Maddie, Colin, Jessica, and his Uncle Mike are getting to be regulars at Oracle Arena.  They are pretty confident they are following a playoff bound team. Let's hope so.

I think what John truly enjoys most though is the Friday night hoops sessions with Darrell, DK, Troy  and other of his Harker School friends.  They put in several grueling hours on the hardwood before hitting one of their homes for a little bit of BBQ.  It is heartening that through all of the treatments John is able to maintain a good physical regimen.

Through all of this fun the best thing has been the great time he has had with his friends and family. These relationships are so valuable to John and are time he treasures.

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Bellarmine visitors
John has been fortunate in having the support of many from Bellarmine College Prep.  John attended high school at Bellarmine, graduating in the Class of '09.  It is a historic community in the Santa Clara Valley, opening in 1851. As such it is hive of activity. However that has not prevented some of the leadership of the school from regularly visiting with John. Fr Wade has made several visits to our home to see John as well as joining him for lunch at an Eastside treasure, Antipasto's. John has also visited the newly renovated campus with Fr Roide who slipped him into the faculty dining area for lunch!  Although John has graduated from Bellarmine he is never truly alone on life's journey as that community will walk beside him where ever the path leads.
 AMDG

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GU Spring Break and a return to GU in April
Gonzaga had Spring Break in mid-March. Several of John's friends returned home or passed through the Bay Area and stopped by to see him.

He took an excellent day trip to SF with Lindsay that included a stop for dinner at The Slanted Door, John's all-time favorite restaurant.  If you've never been just ask John, he'll be happy to escort you there :)

Roommates Brian Biggs and Andy Z came through with Andy spending the weekend. There was plenty of golf played that week! Andy and John also took in a semi-final game of the World Baseball Classic at AT&T Park.  Andy had a chance to see a couple of World Series trophies. It may be a while before his Rockies have one of their own...

During the course of the week, a plan for a trip to Gonzaga was formulated. John will spend a week visiting his friends and coordinating with his professors as he plans out his summer school classes. I suspect there will be more visiting than coordinating but that's as it should be.

It is truly heartening for Melanie and I to see how much John misses the Gonzaga community, especially his roommates. We continue to be amazed and grateful for the support shown by those friends, their families and the Gonzaga administration and faculty. We can see from his feelings towards the school community how deeply he has been struck by his Zag experience. There really aren't words to properly convey our feelings other than this Bronco is so happy that he chose Gonzaga.

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A quick trip to SoCal to visit family and Mr. Mouse
We spent the weekend of March 22nd in Southern California visiting with my brother Bill's family. Though Bill, my sister-in-law Edna, and their youngest, Juliana, have been back and forth frequently, their eldest daughter, John's cousin Bianca, had not been able to make the trips due to studies and homefront responsibilities. This weekend was a perfect time to get together with her and the rest of the SoCal family. As a bonus my niece Maddie, a freshman at SDSU, was able to make her way north to join us. We were especially fortunate that one of John's oldest friends, Austin Krygier, was able to make the trip with us. Additionally family friends Philly G and Chrissy C made there way south to be with us. 

Monkeying around

As always, a trip to the Southland is not deemed complete by the McKennas if 

Austin's new friend

it doesn't include a stop at Disneyland. We braved the pre-Easter vacation crowds to visit with Mr Mouse and had an excellent time as you can see from these pictures.

Taking flight

Phlly G, self, John, Austin, Chrissy

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Hawaii planning underway
As many of you know John is looking forward to a trip to Hawaii. We've never gone so our first thought was we'd be going as a family. HA!  John and his freshman year roommate Jordan have something different in mind.

A couple of days after graduation they will take off for a bit over a week's worth of time on Maui. They are still firming up the details but it looks like they will be enjoying the islands from May 14th-23rd.  They better bring the sunscreen!

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Graduation plans
 John has been on medical leave of absence from Gonzaga during what was to have been his senior spring semester.  Now that the daily treatment regimen is over, he has been planning how he will graduate. Ms. Weber, Ms. Rasmussen and the faculty of the School of Business have been a tremendous help in identifying the summer school courses he needs. He will take a couple of courses during the summer session which will complete his degree requirements..

Gonzaga, in the person of Susie Prusch, has been very gracious in ensuring John will participate in graduation weekend, May 10th-12th, including the graduation ceremonies on Mother's Day.

We can't say enough about the support given by all of these people, as well as President McCulloh, who has reached out to John several times since his seizure. It has been just about four years since John went to Spokane for Accepted Student Weekend. When Melanie and I picked him up at the airport  he didn't say "Hi" or "Glad to be home", instead he announced to us that we should "Book May of 2013 for Gonzaga graduation". These past few months threw great doubt that he would reach that long coveted goal.  Thanks to these exceptional people he soon will refer to himself as "Gonzaga, Class of '13".

In July we will reach the fortieth anniversary of Fr. Arrupe's call to arms for Jesuit education to develop  "Men and Women for others".  The support from the Gonzaga community is a living example of that mission.

AMDG

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Halfway there

Today marks the halfway point of John's standard of care radiation treatment. He's had 16 sessions of radiation, as well as daily doses of the standard chemo treatment of Temodar. He's also had two infusions of the clinical trial drug Avastin.  He has tolerated all of his treatments remarkably well.  The only impacts have been increased sensitivity in his gums and the inevitable hair loss due to the radiation treatments. However he's maintained an excellent appetite, actually putting on 10 lbs since he's been home eating his mother's superb cooking, as well as getting in plenty of exercise.  Fatigue has not been an issue yet though it is something his radiation oncologist, Dr Peddada, says may show up in the next couple of weeks. If so he'll have to push through and maintain an exercise regime as the data shows that is the best way to deal with fatigue and ensure a positive outcome.

Looking ahead he will have have radiation treatments through March and will match that with Temodar. He will also continue the every two week treatments of Avastin. April 4th he will have another MRI to see where we stand.  April 8th we fly back to Durham for the first follow up with the trial team. The meeting with them is on the 9th and we return to the Bay Area on the 10th.

He was pleased that at the follow up last week with his neurosurgeon, Dr. Shirzadi, he was cleared  to play full court basketball. He's now able to log some hours on the hardwood going all out.He has been subsisting on a diet of 21 with me and anyone else he could convince to play.  Please, no comments on the bald spot.

John has also enjoyed hikes in the hills above our home including in Ed Levin park and Alum Rock park.

Cousins!

Alum Rock with Mom

We hope at some point soon to return to Yosemite. John and I enjoyed a wonderful backpacking trip there a number of years ago.

                                                          Glen Aulin/hope to return soon!

Next week is Spring Break for Gonzaga University. John is on a medical leave of absence from school for what was going to be his Senior Spring. During Spring Break a couple of his friends from school will be in the Bay Area and he's looking forward to seeing them.

We look forward to seeing one of John's oldest friends, going back to his elementary school days at Harker, play baseball in Raleigh on April 9th. Taylor Martin plays ball and goes to school at Coker College in South Carolina.  John checked in with him last month, as we were planning the trip to Duke,  to see if Taylor would be around school.  We thought we might find our way to him during that visit. We were excited to hear he would be in the same town as us during our visit while Coker played St Augustine's College in Raleigh. We will be Coker Cobra fans that night!

The Duke clinical trial - Qualifying for the Trial

John decided he wanted to be aggressive in pursuit of solutions to his GBM.  It is such a daunting diagnosis solely depending on the standard of care did not seem prudent. The challenge was identifying and qualifying for a suitable trial.  Trials by their very definition are experimental. You hope for a beneficial result but there are no guarantees. However, he didn't want to just stand by and miss a chance for some improvement. The team at Pinnacle helped us cut through the swath of trials that are in flight throughout the country. After some review John decided to target one for which Duke was a lead site. This trial employs Avastin, in combination with the standard of care, for patients who are newly diagnosed with GBM.  The trial details are at : http://www.clinicaltrials.gov/ct2/show/NCT01740258?term=GBM&recr=Recruiting&state1=NA%3AUS%3ANC&rank=24 for those interested in the nitty-gritty details.

We descended on Durham Sunday, Feb 10th arriving at the hotel  well after midnight.  Though I had visited Raleigh many times for work at previous companies I had never made a trip out to Durham. On the drive to the hotel in Durham, I received a hard time from Melanie and John for not just "knowing" where to go after so many previous NC trips! I had forgotten how little highway lighting there is in NC.  It makes exits off the highway feel like a quick turn onto a trail into the woods!

Monday morning we were up bright and early for an 8:30 breakfast meeting  with the  Pinnacle Health Care SE region representative, Gina.  She shared how the day would likely go with the Duke team. It was the cavalcade of presentations, tests, discussions, training, and review that she forecasted.  In particular, the discussion with Dr. Henry Friedman, who is taking John on directly as his patient, while short, was very positive. It was clear that the attitude of striving to beat this cancer, which permeates the discussion with all of the team, starts at the very top with Dr. Friedman. 

Over the course of Monday and Tuesday, John qualified for this  newly opened trial. I cannot express what a relief this was to all of us.

Because the schedule for the visit was rather open ended (picture a team of busy doctors, nurses, and researchers trying for a time slice to meet with John, wrapped around their pre-existing schedule) we committed to two days on the ground at Duke.  As it turned out we ended up having most of Tuesday to ourselves as we crammed everything we could into the shortest period of time.

Monday evening we met a great friend of mine from the MMC Networks days, as Leonard Bush and his wife Amy joined us for dinner. Leonard, many, many years ago, took me to a AAA ballgame featuring the hometown Durham Bulls,  a team made famous in the film Bull Durham.  Monday night we enjoyed some fine Carolina BBQ at Tobacco Road Sports Pub, situated atop the left field wall at the home of the Bulls.

Having the late flight Tuesday we ended up with a bit of free time before departure and, knowing we were looking at an evening of airline/airport food, we leveraged another eatery tip from Leonard. Yes, we had  more BBQ, this time at The Pit. We can definitely recommend both restaurants.

We had a largely uneventful flight home with the exception of an hour delay in Vegas leading to another post-midnight arrival. The next day brought the start of his chemo and radiation therapy treatments.

PS : An interesting statistic we picked up during the course of the trial review was that while there is almost always a trial or even several trials ongoing at any time for just about any cancer you name, only somewhere between 3 to 5 percent of cancer patients avail themselves. There are many considerations in participating in a trial, including some John will experience through this trial, but that percentage seems so low, it is hard to understand. 

What's happening with his cancer treatment?

This initial post will cover the latest state of John's cancer treatment including the clinical trial he has joined through Friday, February 15th.

Quick recap of how we got here:

1. Dec 27th, 2012 John had a seizure while getting ready to play a pickup football game. His friends Lawrence, Ricky, Michael and Willie Jo, and Austin quickly call 911 and then Melanie. An overnight at Good Sam hospital revealed the presence of a mass on his right frontal lobe.  The neurosurgeon, Dr. Ali Shirzadi, informed us that it will have to be removed and biopsied.
2. Jan 3rd, 2013 the mass is removed. John comes out of the operation in great shape but the preliminary diagnosis is a tough one: Glioblastoma Multiforme, stage 3 or 4. The biopsy results are preliminary and are sent out for a review.
3. Jan 10th the diagnosis is confirmed as GBM, stage 4. The result is we begin our battle with this cancer.

Through the weeks since the diagnosis till now, Feb 15th, we have met with many wonderful doctors including Dr. Peddada (Radiation Oncology and the first to detect the source of this cancer), Dr. Elwyn Cabebe (Medical Oncology at http://www.vmoc.com AND SI Wildcat Class of '92),  Dr Jennifer Clarke (Neuro-Oncology at UCSF), the aforementioned Dr. Shirzadi and recently  Dr. Henry Friedman (neuro-oncologist and co-director at the Brain Tumor Center at Duke) to discuss John's treatment.

All agreed that the surgery was an excellent procedure and that the location of the tumor was overall fortuitous. Also all agreed that his age and health condition are strongly in his favor.  We learned last week that the possibility of it being the most aggressive form of GBM, with EGFR- Viii cell marker present, was eliminated via cell testing.  However, GBM remains one of the most challenging cancer diagnoses a person can receive. 

The standard of care treatment for this disease is a 6 week treatment of radiation therapy combined with the use of a chemotherapy, Temodar. It starts in a 4-8 week window following surgery. This treatment is under the direction of Drs. Peddada and Cabebe.

During these past few weeks John decided that he wanted to pursue as aggressive a course of treatment as possible, including joining a clinical trial if one could be identified. One of the dilemmas of many trials is they often are randomized, double blind which means no one knows if they are receiving a novel medication or a placebo. Thus in mid-January we were excited by the possibility of John's inclusion in a trial of a beta-protein inhibitor run out of UCSF. If selected, and 3 out of 4 applicants will be, he would be guaranteed to receive the drug. Unfortunately, in the lottery he drew the short straw. The only other trial at UCSF was one for a vaccine to address EGFR-Viii.  We hoped to avoid this trial as it was a double blind trial, however, if one has that cell marker you really need the vaccine as the disease is very aggressive. Even a 50-50 opportunity would be better than just receiving standard of care.  Fortunately that choice was eliminated by the negative results for the cell marker mentioned above.

This left the question of which trial to pursue. There are a ton of trials out there but no meaningful information for a laymen to confidently use when selecting amongst them.  In the end, we opted to work with a health advisory firm, Pinnacle Health Care Management, to navigate the decision tree. They've done that and more for us. They helped us understand the options offered at different research centers, understood our desire to be aggressive within the bounds of John's quality of life considerations (think a trip to Hawaii at last), and facilitated discussions with various leading oncologists around the country.

In making this kind of choice there is no right or wrong answer - the game is played at the very edge of our understanding of the disease and what options can be brought to bear without compromising one's time on Earth.  But we knew that John wanted to play this game hard so we were drawn to, and ultimately chose to participate in, a trial involving a well known cancer drug Avastin (thumbs up to the team in Emeryville at Genentech), being run at Duke's Brain Treatment Center (http://www.cancer.duke.edu/btc/). Avastin is a drug that has been used beneficially to treat a number of cancers, including GBM.  Beneficially, particularly in the case of GBM, means to prolong life, but GBM remains a difficult disease to ever declare defeated.  It's FDA approved use in GBM cases is for the time a tumor has recurred.  The trial is to determine its effectiveness in treating newly diagnosed patients such as John.

We flew to Raleigh, North Carolina on Sunday, February 10th.  Over the course of the next two days John met with and enrolled in a Phase II trial to test the effect of Avastin on newly diagnosed GBM.  In the first cycle of the trial John receives Avastin every two weeks for six rounds of treatment.  The treatment is provided by his local oncologist, Dr. Cabebe.

Treatments started on Wednesday with radiation and the Temodar. Temodar is taken as a pill. Radiation is given Monday through Friday for 30 treatments and Temodar is taken during this same period but everyday.  John received his first Avastin infusion Friday the 15th.  Thus far he has tolerated everything well. We hope that continues to be the case for the duration of treatment.

Once he gets through the radiation treatment he will continue on Temodar. The dosage level will change and the cycle of dosing will become a five day dosing window followed by twenty three days off then repeat.  Avastin will continue throughout every two weeks. He will receive another MRI at the beginning of April.

As part of the trial John has to return every eight weeks to Duke for review. His next visit is slated for April 9th. We hope to attend a Durham Bulls vs Gwinnett Braves Triple-A game while we are there. It is the Bull's Opening Week of baseball. We will also indulge again is some of eastern Carolina's excellent BBQ.

So that's the story on treatment thus far.  I will post some information later on the genetic basis for his GBM illness.