10 weeks post-recurrence - What is happening?

As reported in the December 2013 post, John's GBM recurred. He has undergone a change in treatment, enjoyed a wonderful Thanksgiving and Christmas with his family and has gotten two more MRIs, the latest being yesterday, February 24th aka Melanie's birthday....

Let me lead off with the health update. The good news is that the tumor appears stable since his MRI in January. As a result he will continue with his current course of treatment.  He still takes Avastin and Irinotecan every two weeks and mixes in carboplatin every fourth week. He has tolerated this treatment ok. It is tougher than the previous treatment on the appetite but generally he is back to eating normally by the third day after treatment. He is also pretty tired the first three days but bounces back by day four. 

The  MRI in January at Duke was, to quote the doctor, "in a gray zone" where a conclusive assessment regarding progression was not possible. He had another MRI yesterday, this time performed locally at Good Sam. We had a conference call with Dr. Friedman today and he said that "Unequivocally there has been no progression since January. The tumor at this time is stable."  We are relieved to hear that news but realize that each MRI could bring a change that requires a new course of treatment. Dr. Friedman has done an excellent job of keeping us apprised of the state of the art in treatment.  He likes to say he has "brigades of more defenders ready to move on this tumor". 

We are slated to go back to Duke March 24/25 for another MRI and treatment assessment. Also we will have more BBQ and, of all things, Polish food. During the last day of our visit in January we stumbled upon a storefront serving very delicious Polish food and some splendid trinkets.

John has had a busy two weeks.  He had one of his roommates, Andy Kelly, come down from Spokane and stay with him for a week. They ran around town, both San Jose and San Francisco, visiting another of the GU roommates, Brian Biggs, who is living in The City.

They even managed to time a visit to Lake Tahoe to snowboard when there actually was snow on the mountain.  

This past week Melanie's sister Missy, John's Godmother, paid us a visit. It is always fun when Missy is in town though it was much too short of a visit.

Two other bits of big news. We have added a new puppy, Penny,  to the household. She is nine weeks old and a corgi-beagle mix. She is very cute but we are going through the puppy training stage. She is learning to pee outside and  to leave the furniture alone. 

John will be going to Santa Clara's Golden Circle Theatre Party this year ( SCU Golden Circle Theatre Party).  Since the Fall he has been employed part time at SCU in the University Events office. As such he thought he would be working the event; instead he will be hosting a table of his friends. 

 

Between all the visits, treatments, staying on top of the new puppy, the Warriors and wondering how the Giants are going to do, we have been keeping busy.

We are looking ahead to the summer in hopes that we can again spend some time in Rhode Island and Connecticut with Melanie's family and perhaps persuade some of our California friends and family to join us.

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.