Update on treatment options as of May 13

We are still in a bit of a holding pattern regarding the next course of treatment for John. One thing is clear though we will not be heading to Duke this weekend. The current batch of trials underway there are not pertinent, yet, for John.

When we started reviewing Phase II/III trials at other centers  there were  about a dozen potential trials. A large number turned out to either be closed to new recruits or John, due to a combination of factors, was not eligible.

For a trial at Northwestern, we are waiting on the results of tumor testing. That will take approximately two weeks. This trial,  is for patients with particular mutation in the tumor's FGFR receptor. This mutation shows up in just three percent of patients with GBM. However for those with the mutation this is the pertinent trial.

We are also awaiting word on access to a trial still recruiting at MD Anderson in Houston. It may soon be opening up recruitment at other sites around the country.

Finally we are awaiting some feedback for a Phase II trial underway at UCSD.

As I mentioned in the last post, we have a little time to do this review  as he could not start participation till he metabolizes the last round of chemotherapy, in particular the carboplatin treatment. Even though we know that will complete in two weeks, trials don't hold slots. You basically have to be ready to go when you are ready to go.

It is more than a little frustrating not knowing now what the next steps are but we have to be patient and work through the details. I will post again as soon as details come into view.

In the meanwhile we keep busy at things like shirtsleeve weather at the ballpark:

Another seizure and with it a tough update

John had his second seizure this year, this time last Thursday evening, as he was preparing to play basketball in Sunnyvale. His friends Lawrence Milan and Chris Zhou were with him and quickly got him emergency care, contacted Melanie and me, and had John in an ambulance down to Good Samaritan hospital in short order.

There he was treated and released after a review and additional anti-seizure medications administered. He was scheduled and received an MRI yesterday, May 5th. Today, the 6th, we reviewed the results with John's lead doctor, Dr. Friedman, at Duke University.  The news was a bit hard to take. His tumor has progressed and is causing the seizures. The current chemotherapy regimen of carboplatin and CPT-11 will stop as they are not effective.  Dr. Friedman is researching additional therapies to apply and we will have a conference call with him on Thursday to review the next steps.

One of the hardest bits of news was to learn that the anatomical structure of this progression, into a multifocal tumor (i.e. more than one tumor arising from one original tumor), precludes him from utilizing their most cutting edge treatment of injecting the tumor with a re-engineered polio virus. Because there is more than one tumor, multiple catheter insertions would be needed and there is no known safe and effective way to do so.

We remain hopeful that the team will find some course that will arrest the progression. Till then we ask for your thoughts and prayers.

This won't happen ever again - I recommend you pick up this week's People magazine

I am not a big fan of People magazine. In fact I never read it. However this week's issue (the special double issue of People's 50 Most Beautiful - really???) contains a story about Stephanie Lipscomb. She is the first person to be treated with the re-engineered polio virus developed by Dr. Gromeier at Duke University. It is such an encouraging story and is literally the living proof, in the form of Stephanie, that your donation to the Angels Among Us fund is having a critical impact on moving science from the lab to the patient.  John's Tumor Warriors Page

Thank you!

A request for support AND an update from the March trip to Duke

Hi,

A request for support:

Yes, the first part of this post is to ask you for monetary support of Preston Robert Tisch Brain Tumor Center at Duke University. This is the home of the world class team of researchers, doctors, nurses and staff that spend their waking hours looking for ways to defeat brain cancer.

Once a year they host a fundraiser known as Angels Among Us, a 3K/5K run combined with a silent auction and a survivor recognition ceremony. Now in its 21st year, it has raised over 14 million dollars to support the Center.

We have formed a team, John's Tumor Warriors, to raise funds for the organization that is central to John's fight against Glioblastoma. Our team page is at John's Tumor Warriors Home Page.  If you feel you can support this cause you will find a link to the donation page underneath John's Gonzaga graduation photo.

We will not be running in this event, as it is hosted on the Duke campus and falls between our bimonthly visits. However, for consistency,  I will be running the Presidio Trail Run on Sunday April 27th :

Besides this invitation to contribute there will be one other email that comes to you directly from the event website.  Thanks in advance for any support you can offer.

The latest Duke report

At the end of March John, Melanie and I made our every eight week visit to Duke. This visit was particularly suspenseful as it was on the heels of the seizure episode in mid-March. It was also going to be our first face to face with the medical team since the MRI that followed the seizure.

MRIs, while a great advance in diagnostics, is still a bit of an art with regards to interpretation.   Thus when one is undergoing a series of MRIs as John is, other doctors prefer to defer to the team that is doing the image reads over time. So for the intervening two plus weeks since the MRI was taken in California the local doctors have held off any analysis of the image.We did receive the observation from the Duke team that the image was "fine" but not much more detail.

When we arrived in North Carolina we found out that the John's doctor, Henry Friedman, was unavailable to meet, as he was going to be treated for kidney stones during our visit.  His staff assured us his absence had nothing to do with depression over Duke's early exist from the NCAA basketball tournament. :)

In his place the staff did a stellar job of addressing many of the side effects from John's treatment.  In addition they conveyed the encouraging news from the MRI that the tumor seems to be "less solid and possibly breaking down". Obviously this is a highly desirable . John will continue with his current treatment regimen as it seems to be having the desired effect.  We will return to Duke in mid-May for the next review. I will have another post at that time.

We did have some fun in March...

March has been very hectic between the seizure episode and the trip to Duke at the end of the month. I will have a post regarding the latter at some point as there was promising news.

However we started the month with an excellent time at Santa Clara University's Golden Circle Theatre Party aka GCTP.  It is a long-standing, annual event in the Valley.  This gathering is opportunity for alumni and friends of SCU to raise funds and make new friends for the school. A little on the history of the event and its hosts, the SCU Board of Fellows, can be found here: SCU Golden Circle History

It is a night of entertainment, dinner, and dancing held in downtown San Jose. Melanie and I have supported this event for several years, inviting friends and family to join us at our table. We had long planned that when John graduated from college one of the celebratory events would be having him host a table of his friends at GCTP.  With all of the uncertainty regarding his health we held off on acting on our plan. However, life itself is uncertain and we decided to push ahead, inspired by John's own example of perseverance in the face of adversity. It was a good choice.

Now I speak of the Board of Fellows as being the hosts of this event, but it is a mammoth undertaking and the yeoman's work is actually done by a small staff in the University Events office. Karrie, Mary, Blake and Lizzie, who keep this shop humming, had some help this past year from John Foster as, coincidentally, he works for them part-time! In fact, when we told him a couple of weeks before the party that he was going to host a table his first response was, "I can't. I am working the event!".  Now that is a dedicated employee!

The evening was a great success both for the Board's goal to "raise some funds, make some friends and have a good time doing so" and for our own group of friends and family. The evening started at the San Jose Center for the Performing Arts. There we were treated to a performance by Rock and Roll Hall of Fame 2014 inductees, Hall and Oates. They were preceded by a fine a Cappella group, Supertonic!, comprised of Santa Clara students. Check them out on YouTube.

The balance of the evening was spent at the Fairmont where we enjoyed an excellent dinner and attempted, some of us less successfully than others (cough, cough), some dancing to end the evening.

Here are some pictures from that night.

Pre-show at the CPA

Waiting for dessert!

Pre-show at the CPA

John's seizures Tuesday, March 11th

Many of you have heard that John experienced two seizures Tuesday night. The first was at his cousin Courtney's home in Pleasant Hill, where he stopped by to pick her up as they were to attend the Warriors game.

While there he experienced a focal motor seizure. He never lost consciousness but was not responsive. By the time the EMT team arrived he had somewhat recovered. He was transported to John Muir hospital in Walnut Creek for observation and evaluation.  While there he suffered a gran mal seizure.  The ER team responded with heavy doses of anti-seizure medication.

He had a CT scan which showed nothing not already known but he was admitted overnight as a precaution. Wednesday he had an MRI which was also fine. Specifically the doctors were looking for any signs of bleeding at the tumor site or anything significantly different than seen on his last MRI. Neither of these concerns were manifest.

Based on information taken from his medical history, specifically the fact that John had missed a dose of his anti-seizure medication on Sunday, suggested strongly to the doctors that John's maintenance dose of the medication is likely too low. The missed dose was sufficient to lower his overall load of  medication, essentially the minimum baseline of anti-seizure medication in his system sufficient to prevent a seizure, was no longer reached.  This level is different for everyone as each person metabolizes medication at a different rate.

He is now taking a higher dose on an ongoing basis and the doctors have recommended he have his baseline checked in about a week.

We are all very thankful this happened while he was with family who could attend to him, especially Frank and Courtney.

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.