Thursday, January 24, 2013
I apologize for not updating the blog in several busy months! First, October 18th's scan was not mixed. On a good note, 5 areas were stable, one was no longer visible at all (yay!). On a bad note, the two largest brain tumors found last summer had bob grown significantly. Cam was taken off the CERN trial of Avastin and Lapatinib immediately. Surgery was scheduled for the following week and next steps were discussed. The timing was good for Cam. It turned out that the semi-annual CERN member's conference was that weekend! Cam's neuro-oncologist at Memorial-Sloan Kettering Cancer Center attended the conference, bringing Cam's scans with her. The board held a multi-institutional tumor board meeting on Campbell's case! We had dozens of the best Ependymoma minds in the country discussing Campbell! It was universally recommended to remove the largest brain tumor, which had doubled in size in 6 weeks. It was in the top left side of her brain, near the speech center and putting her at increased risk for seizures. It was also universally recommended to treat her brain with additional radiation (IMRT this time, not protons like done previously), in conjunction with etoposide (oral chemotherapy) as a stabilizer during radiation and followed by a new chemotherapy after radiation. So, we had a plan. Surgery was a success. Dr. Jeff Greenfield of Weill-Cornell/MSKCC was able to remove the entire tumor. Cam suffered no real side effects from the surgery or recovery. Her speech actually seemed to improve, indicating perhaps she had been experiencing symptoms and no one realized it. Campbell finished 30 rounds of cranial radiation (to everywhere except the area irradiated the first time three years ago) on 12/28. Cam ROCKED it, doing radiation for the first time without anesthesia! This was HUGE! You may not remember, but Cam has issues with anesthesia, especially the drug of choice for radiation and MRIs, which is protocol. Campbell calls it the angry medicine. It makes her psychotic! So, being able to do radiation without anesthesia was a blessing. Cam experienced some fatigue from radiation, although was able to go to school for at least a half-day nearly every day during treatment! The biggest side effect was hair-loss in all areas of her head receiving radiation. Basically she has a little patch left on the top rear of her head. Oh, well. She's a trooper. Nothing phases her. She just took out her extensive hat collection from last year! The only other complication since December is a low hemoglobin, requiring 5 transfusions between 12/13 and 1/13. This is likely a combination of the etoposide (which was stopped, as planned, on 12/26) and the effects of radiation on the body's bone marrow. After rocking radiation without anesthesia, our friend wanted to try her MRIs awake! MSKCC installed MRI movie goggles last month. These goggles are MRI safe and are similar in look to an old-school view-finder. Because Cam's scans take close to 2 hours, they are scheduled on two different days when done awake. Cam had her brain scan yesterday. No surprise - she rocked it! Wasn't phased or fidgeting at all! I was able to stay in the room with her, holding her foot the whole time. Right now, Greg is in with her for her spine scan. We will get the results later today. In addition, Cam had labs drawn this morning. We will see if she needs another transfusion in a few minutes. The plan for chemotherapy after radiation is a new clinical trial only available at St. Jude. They are using an old drug called 5FU to treat recurrent Ependymoma. The first cycle is done at St. Jude in Memphis and lasts for 6 weeks. After that, if Campbell is responding, subsequent cycles can be done at your home institution. This drug has had promising results in the lab and a few patients so far. It is nothing like anything else Cam has been on, so we are hopeful this is The One. I know I have missed something! Sorry! I promise, now that I know I can update the blog from Cam's iPad, I will do it more frequently. Starting with today's results! One last thing: Our dear friend, Sandy Whelan, Watching Hills High women's basketball coach, and her Lady Warriors are hosting Summit High School in a GOLD GAME this Friday at 7pm at Watchung Hills. They are raising awareness of childhood cancer and funds for the Campbell Hoyt Medical Trust. If you are in the area, come show your support! Campbell will be there helping Coach Whelan on the bench!