March 29, 2013

We were back to NYC today for a meeting with Dr. Mellinghoff, to discuss what our next steps may be. Since the last scan at MSKCC in November (the baseline scan done at Dana Farber at the start of the clinical trial in December is not in their system yet), his tumor has grown from approximately 6-7.5 mm to an estimated 5 or 6 Centimeters. It is already bigger than the one that they removed last March. It is possibly a grade 4, but still likely to be a grade 3. He is having some symptoms...a "pulsing" sensation in his head, as well as increased tremors in his left arm. The doctors believe that these tremors are actually focal seizures. He also seems to have a weakening in his left hand/arm. The first treatment option is surgery. Dr. Mellinghoff is going to speak with Dr. Gutin (his neurosurgeon) on Monday to see if surgery is a viable option. If so, it will probably take place within the next month. Beyond surgery, there is the option of another clinical trial (if one is available and he qualifies for it), some forms of chemotherapy, re-radiation &/or avastin. The doctor put him on a course of Decadron for the weekend, to see if it alleviates any of his symptoms, and he is no longer able to drive. We are scheduled to return to Dana Farber on Tuesday for bloodwork, etc. to complete the study, and will inquire with them on any other available trials up there. We will speak with Dr. M. again mid-week to discuss our findings in Boston and his meeting with Dr. Gutin. The next several months are promising to be tough times...we will do our very best to remain positive and hopeful, and thank you all in advance for your support.

March 19, 2013

Ken had his MRI & PET Scan in Boston today...long story short, his tumor grew again this month, and has now surpassed the 25% growth allowed for on the trial. In light of the continued growth, the Dr.'s feel that the trial drug is ineffective, and are removing him from the clinical trial. We are not sure yet what the next step will be, the tumor is not "exploding" in growth yet, so we have some time to figure things out, and will most likely return to Dr. Mellinghoff in NYC to explore our options. I will update when I have further details.