Tumor Recurrence Nov 2023

Even though they said the probably of recurrence is 100% I thought maybe I’d be lucky since it’s been so long. It’s pretty crazy that all of this started 10+ years ago! Here is a summarized time line. All of the procedures and appointments are in Boston, MA at Dana Farber/Brigham & Women's (“B&W”) Hospital. I am lucky to be able to work with the same team:

• Neuro-oncologist, Dr. Eudocia Q. Lee, MD, MPH https://www.dana-farber.org/find-a-doctor/eudocia-q-lee
• Neuro-surgeon, Dr. Alexandra Golby

Both are highly rated and respected. I put links above for their bio and info. I know Anthony (being that this is his first time) said he was very comfortable with them and felt they were both very specialized, knowledgeable and made us feel better moving along.

07/13/13 —> Surgery at Dana Farber with Dr. Golby

04/05/14 —> Last chemo treatment

09/02/14 —> Moved to Brooklyn

All of my follow-ups for MRI’s and other testing are with my doctor at NYOH in Albany, Dr. Susan Weaver. She is the best!

11/18/23 - 11/19/2023 —> Seizures at home, ER, scans, tumor is back 😣

11/21/2023 —> Felt like I had a pretty bad head cold, headaches, also it’s my bad sinus/allergy time

In the following 11/27/23 appointments, we did review the following images which shows a left frontal focus of enhancement as well as dense non-enhancing disease in the left frontal lobe causing mass effect and frontal horn collapse. FYI, the scans are backwards like you’re reading them from the bottom of my feet look up. Left is right and right is left. 

11/27/23 —> Televisit with Dr. Lee to discuss history of patient & illness, findings, assessment of recent imaging and potential treatment options/plan. This includes the following and of course, there are different risks that come with each choice. At the end of the day, I plan to have the discussions again to ultimately decide what they think is best. "If it was your child..." 

• Chemotherapy > 1 - option to repeat temozolomide  (same drug I took the first time around) or 2 - new drug called Lomustine
• Radiation may be an option but she worries about the neurocognitive toxicity given tumor location. Most likely skipping this time around. 
• Clinical trials that they have at the hospital:
• DFCI protocol 22-532 (IDH inhibitor Vorasidenib + immunotherapy Pembrolizumab): allows grade 3 but not grade 4, requires surgery on study, randomization to drugs before surgery or no drugs for a month before surgery but everyone gets both drugs after surgery.
• DFCI protocol 22-447 (Parp inhibitor AZD9574 + Temozolomide): allows any IDH mutant glioma, grade 3 or 4, could be considered an option if she decides to pursue surgery first, subject to slot availability, phase 1 study
• DFCI protocol 23-225 (IDH inhibitor safusidenib erbumine): because prior data suggests that IDH inhibitors alone may not be as beneficial in higher grade tumors, I am less in favor of this option. 

11/27/23 —> Appointment with Dr. Golby and her fellow to discuss history of patient & illness, findings, assessment of recent imaging and potential treatment options/plan. This includes booking my surgery as soon as they can. 

11/27/23 —> Blood/lab work (no findings)

12/04/23 —> Several, back at B&W: 

• Pre-op cognitive testing with Neuropsychology Dept. and my first time doing it. It was a very interesting experience. Essentially was to get my baseline in case I have cognitive issues post surgery. It felt like an IQ test and took 3 hours. Completing sequences of pictures. He read me short stories and then I had to repeat it as best as I could using the same words. Then like an hour later he asked if I remembered the stories and to do it again. He read a list of random words and then asked me to repeat as many as I could. That was multiple times and also randomly throughout. Then they asked some geography, history and science type questions (capital of Italy, who is Ghandi, what are 3 ventricles in the human body) and I’m like guy, I’m an accountant lol. I had to use blocks to re-create pictures on the paper. Copy a drawing then redo that throughout the time. He noticed I kept getting side tracked looking out the window and I told him he was right but it was difficult because this guy keeps coming outside, feeding birds, leaving and coming back, repeat… 
• 2 brain MRI's (1-functional and 1-standard) - my first functional MRI but the idea is to see how your brain reacts while you're doing tasks like making and releasing a fist, tapping your finger tips with your thumb repeatedly. I had to redo the finger tapping one because i kept falling asleep. There was no sound for Go, Stop so you just needed to keep your eyes open and watch the screen that changed from a red stop sign to a green one.
• IV issues, per usual. the MRI tech who does them all day long tried both sides snd no luck so then he got a nurse who is known for being the best. One and done ☺️

12/05/23 -12/07/23 —> Virtual preop/assessment calls,  PPE (Preoperative Evaluation), anesthesiologist call

12/07/23 - 12/10/23 —> itchy red rash on both cheeks; all on right side > swollen lymph node, minor earache, slight throat discomfort; Urgent care on 12/9 which basically led to a cortisone cream and recommended ultra sound of neck; 12/10 at 3:20 pm PCP appointment as recommended by my my surgeon’s NP and will have updates later on this

12/12/23 - 12/13/23 —> drive to Boston for dinner with so many of my loved ones and then Wednesday 7:30 am arrival for image-guided frontal craniotomy for tumor resection with intraoperative MRI and ultrasound with Alexandra J Golby, MD

SURGERY WAS SUCCESSFUL! Next steps to have my sutures removed and plan for my next treatment steps. So far we know the tumor is at LEAST the same Grade 3 as last time but could be more aggressive and now Grade 4. We should know by the first week in January. Once we have this info, then we make the plan.

12/28/23 —> POSTOP VISIT with Mary Beth Anketell, NP (suture removal, symptoms, other follow up, etc.)