Henry's Blog

Wednesday, April 23, 2008

The Waiting Is The Hardest Part

Still on edge waiting to hear the test results that would allow us to enter the study at Sloan-Kettering. They received the tissue sample last Tuesday and said the test results would take about a week.

It's been a week...

Sunday, April 13, 2008

In a New York State of Mind

"Some folks like to get away, take a holiday from the neighborhood..."

After being told that Henry would not continue the Duke clinical study, we sat down with Dr. G and Dr. S to discuss options. Dr G stressed that he still wanted to be Henry's Doctor, but some possible treatments could be administered at home. He had already prepared prescriptions for three chemo drugs to be taken orally: Tamoxifen, Temozolomide and Etoposide. Etoposide is one that Henry has taken (as part of a different drug combo) between his first two surgeries, and he did get some (undramatic) results.

"...Hop a flight to Miami Beach Or to Hollywood..."

As we continued discussing all the avenues that may be out there, Dr G, who had served a residency at Memorial Sloan-Kettering Cancer Center (MSKCC) in New York, alerted us to a phase two clinical trial there, which includes epedymoma.

This treatment involves administering a radioactive antibody to the tumor sites and, as luck would have it, the treatment is administered through the same Ommaya-style reservoir that Henry had implanted for the study at Duke.

Once again we felt hopeful for a new treatment that sounds promising. Henry got excited at the prospect of going to New York (there is a big Nintendo center smack in Times Square). Dr. G warned us about the huge, complex bureaucracy that is MSKCC (and we thought Duke was big!). He explained that the workload of the pediatric tumor physician is immense, and that it can be difficult to get anyone to respond to phone calls or emails.

"...But I know what I'm needing and I don't want to waste more time..."

We decided to try for the MSKCC trial. Since there is a three-week waiting period between any previous treatment and beginning the new trial, we are holding off on the oral chemo drugs. It has already been two weeks since his last dose of chemo at Duke, so we would only have to wait one more week, but we do not want Henry to go too long without any treatment and certainly don't want to suffer any bureaucratic delays.

While Dr. G began attempting direct contact with the doctor at MSKCC (Dr. K...have we used that one yet?), we began a back-door approach. Our own local RET Foundation, which has already been amazingly helpful in the past, has a board advisor who is a physician at Sloan-Kettering, and Suzanne from the foundation jumped in and urged him to contact Dr. K.

Through whatever means, within 24 hours Drs. G and K were in active conversation and the application process begun. Consent forms have been faxed and tissue samples from St. Jude are being sent. If the tissue sample responds to the antibodies, we will go to NY for another flow test and, if successful, first treatment. While we don't know all the details of this protocol yet, treatment would involve going to NY only one day per month.

"...I'm in a New York state of mind."

Monday, April 07, 2008

Clinical Mistrial

Today we were dropped from the Duke clinical trial.

Last Friday [April 4] we drove to Duke for a full brain and spine MRI and spinal tap. These are routine tests to benchmark the end of the "induction" phase of the trial and the beginning of the "consolidation" phase. The spinal tap showed no cancer cells in the spinal fluid, but there was some disagreement over the MRI. The analysis of the radiologist found that, while the larger tumor in the front ventricle appeared stable, the two smaller tumors in the rear ventricles appeared to have grown slightly. Dr G and his associate Dr. S both argued that the small growth could be attributed to slight variations in the location of the section view, but the head of radiology concurred with the first radiologist's report and, ultimately, any report of growth disqualifies us from the trial. While D. G conceded the presence of growth, he nonetheless said that if it wasn't a trial protocol he would have continued treatment a while longer. Given the strict requirements of the trial, however, we had no choice.

We now are examining Plan "J" (...or is it Plan "K"?). Stay tuned.

Henry, as always, is the picture of grace and composure.