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UCLA Tumor Board Results

Dang it if brain tumor life isn’t confusing. At least in my world! I can’t be the only one who has these types of yoyo results. I mean, it’s better to have differing results than a truly horrible, obvious situation. The ups and downs, though are insane. If you don’t want to watch the whole video (3 min 44 sec), the short is: tumor is growing, albeit slowly. (Think millimeters.) I believe the two treatments I added in the past two months, are helping – who knows, maybe the tumor had grown more in the interim, and now they’re even shrinking it? Who knows! I rule out nothing. My neurosurgeon at UCLA offered a brain surgery to remove whatever she can, or she said she is “comfortable” waiting 2-3 months for another stealth (pre-op) MRI. I opted for the latter, and agreed that if I had furthering symptoms, I would move up the scan. Some people might think I’m crazy to push-off brain surgery, since I have a growing tumor in my brain, but there are inherent risks involved. Remember when I had to learn how to walk, talk, read – learn the alphabet again?! I do. We will never know for sure if the decisions that we make are the best ones, but a decision is what we have before us. For now, we try to do the least invasive approach. If that isn’t enough, we will evolve as we always have. It’s confusing because the symptoms of my seizures are the same symptoms that tumor growth would cause. The main take away right now is that it’s important for me to stay the course on exactly what I’m doing treatment-wise, and perhaps even add a few non-toxic, whole body health boosting things. And I really┬áneed to lower my…

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New Neurosurgeon, New MRI Scheduled

Just snuck and took a video in my first neurosurgeon’s apppointmet at Swedish, in Seattle. At the end of the video you can see a slice of my brain, which includes the brain tumor. Yuuuuck!!! It’s gross. Every. Time. I. See. It. The image is from back in April, so it’s not even current. On this Thursday, I have a MRI and cerebral fluid scan to evaluate the growth, and see how much blood is going to the tumor. The fluid scan tracks the metabolic activity which requires more blood than regular tissue. Will meet with a new neurooncologist after the scan. Then I will upload my images to UCLA’s system and hope I get in for next Wednesday’s tumor board. It’s frustrating that they only review cases once a week. If there’s a backlog it can take weeks, even a month, to get results on treatment recommendations. Big day today, but an even bigger one on Thurs. Fingers crossed that all of my little issues are treatment effects, not tumor growth. I believe in miracles. And in my opinion, it only takes one to change your life.

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Bus Bacteria Bad. Brain Bacteria Good.

Hey Guys, What is it about summer that causes it to go faster, and faster, and faster, until you lose your mind? Or get sick. I get sick every few years, and never in the summer, but lucky me, that’s exactly what just happened. I must have licked my fingers after touching things on the city bus or something. (Gross!) But life doesn’t stop when you get sick – kinda like cancer. I’m busy with gloriously fun things like promoting the MLD docu-series with interviews, corresponding with tumor patients/caregivers, and visiting with out-of-town friends, all peppered with doctor appointments. I’m not sleeping well because of headaches, which is a constant reminder of the fact that my brain tumor is growing again. I’m fine during the day, I’m so busy that I can’t even keep up, but at night, as soon as I’m vertical, the pressure in my head grows intense. It’s come to the point where I am back to relying on headache medicine. I hate having to do that. I’m grateful that my seizures have remained stable, though, which feels like a Christmas miracle. I like to think that the headaches are because I’m doing too much, trying to conquer too many things, maybe I’m not organized enough, anything but the mass of rogue cells multiplying in the folds of my brain. Last weekend I turned 36, and although birthday goals are a newer thing for me, I have it in my head that I want to live past age 40, and not be sporting a wheelchair/walker while I enjoy my cake (although decorating those items sound kind of awesome). That fear is based off of my horrible luck with brain surgeries. Granted the most recent one healed pretty well, but man if that second brain surgery didn’t give…

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UCLA MRI Results: Surgery Needed

I finally received my secondary results from the MRI. Unfortunately, UCLA believes there has been interval progression, and they are recommending brain surgery. I don’t know if I could stomach a fourth surgery, but before I can commit to that anyway, I’ve requested a f-DOPA pet scan to verify that it is indeed tumor growth. F-DOPA pet scans can differentiate between tumor cells vs scar tissue or inflammation. It’s confusing to hear conflicting results from two different centers, but that’s nothing new for me. At this point, I’m waiting for insurance to approve the scan. Next, we’ll schedule the scan, and then we will review the results to see if we are dealing with a recurrence. Between now and then, we scramble for alternative plans for survival. I know that sounds alarmist, but I say it with tongue in cheek. As always, I’ll keep you abreast. (That word always makes me laugh, so I had to throw it in there.) PS It’s my brother’s birthday today, so if you see him, please don’t say anything until tomorrow! xo

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UW Radiology Report

University of Washington just emailed me my radiology report, and since I can easily copy and paste, I thought I would post it here in case it might be helpful to others. UCLA doesn’t provide a radiology report at their Tumor Board, however in the last post I included their opinion on my brain scan (hint: they think my tumor is growing). Now, because of the differences in opinion, we wait for the private third party review from Iris Radiology to determine if I’m in the early stages of a recurrence or whether the differences in findings are more a matter of MRI reading techniques. Narrative EXAMINATION: MRI BRAIN WO/W CONT CLINICAL INDICATION:History of left parietal infiltrating astrocytoma status post resection. TECHNIQUE:MRI Head Tumor (Primary) contrast plus post GD SAG T1 (Glioma /GBM)(B 2PT) Non-contrast Head: Axial T1, axial T2, axial diffusion. Post-contrast Head: 3D FLAIR (Sag, Ax, & Cor), axial diffusion. Axial, coronal & sagittal T1. CONTRAST:Prohance 15 ml 10/24/2015 08:10 AM INTRAVENOUS COMPARISON:Multiple prior MRIs of the brain, most recent dated 3/22/2015. FINDINGS:Post surgical changes compatible with left parietal craniotomy and tumor resection again noted. Surrounding FLAIR hyperintensity is unchanged. There is no evidence of new areas of enhancement at the resection site or elsewhere in the brain parenchyma. A right frontal developmental venous anomaly is noted. Incidental note of small intracranial right vertebral artery flow void again noted and unchanged from 3/22/2015. Otherwise, the major vascular flow voids through the circle of Willis are patent. The ventricles and sulci are unchanged in size. There is stable ex vacuo dilatation of the left lateral ventricle due to volume loss. Orbital structures and extracranial soft tissues are normal. ATTENDING RADIOLOGIST AND PAGER NUMBER ##############

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Updated MRI Results

I’m in my happy place, Green Lake. I mean, don’t get me wrong – Edmonds is my home. We’ve grown roots and continue to be nurtured there, but Green Lake has held my hand throughout the majority of our cancer journey. I always find myself at Peet’s Coffee & Tea shop at Green Lake sipping on a matcha latte (unsweetened, almond milk – please don’t forget the extra scoop of matcha) when I’m dealing with MRI madness. It’s my treat on MRI days. It’s where I go to celebrate reports, or stress over the ambiguous findings.  I’m here in the city for a last minute doctor’s appointment, and have been managing the details of our “recurrence” all day (emails, phone calls between doctors and insurance). Here’s the information from UCLA.  UCLA: They reviewed your scans last week [at the tumor board] and feel like there are mild subtle changes so it is suggested that radiation would be a good thing to start at this point. They also mentioned a clinical trial involving an IDH1inhibitor. Perhaps you should meet with them [radiation oncologist & neuro oncologist] to discuss your options. Me: When the tumor board meets, and there are recommendations given, is there a report that I can access and review? I assume there is some sort of documentation of the process. UCLA: We don’t really have a written report per say that I can provide you. Me: I’m curious because, when you say there has been progression, I would like to see the measurements, and assessments of the increased disease. As you know I send the copy of the UW’s MRI scan to UCLA, along with the radiology report from UW, and their report didn’t reflect your findings. It’s confusing to me that you would find changes that they did…

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Shit Shit Shit. Another Recurrence.

My my mind is all over the place. I don’t quite know what to do. Crap. CRAP. I just got off the phone with a representative from UCLA Neurosurgery. It looks like I have my third recurrence. I don’t understand how University of Washington could have reviewed my most recent scan to past scans and felt there was no recurrence, yet UCLA is confident the tumor has grown. I need more information. I’ve asked for copies of the notes from the UCLA tumor board, and their radiology review. I’ve asked for a callback from one of the doctors or physician’s assistants, since Dr Liau is too busy to handle me personally anymore. I worry that this is going to turn into a thing. A frustrating thing where I will need more of their scientific reasoning, and proof that the tumor has grown. That I will need to see measurements, and assessments. What about a DOPA-PET scan. Remember that scan that I took in LA back in October of 2013? It’s a special scan for low grade gliomas that will differentiate between tumor and scar tissue, clarifying the MRI images. Why didn’t they ask for that? Do they think that my tumor has advanced in stage? (Uh-oh.) I’m not surprised that the tumor has grown, it’s what they do. But I’m not going to start a treatment program based on an office worker’s forwarded information. I want to talk to the doctors, and the decision makers. I want to talk to people that can answer all of my questions. I am a patient, and I respect my doctors, but insurance, and our money goes to pay their bills. I deserve answers. Doctors are just contract workers. I think it’s always important to treat them with respect, but I also believe that…

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UCLA Tumor Board

Morning Guys! Usually you never want immediate results from your doctor. Fast phone calls after an appointment or scan is often because they have something report. You never want something to report. That being said, I received a phone call from UCLA Neurosurgery yesterday morning. They had received my radiology report (in record time – it usually takes weeks) and they were emailing me instructions on how to upload the images. (Good thing I hadn’t mailed the disk yet!) They recently upgraded their computer system and after a dead end at the library, I was able to go to my friend’s house and upload the report. It took a total of four minutes! Talk about fast. That’s way better than the several weeks it usually takes. It’s not that the US mail takes that long, it’s the web of the UCLA mail department, then the physical disk has to be uploaded by a UCLA employee. And since I was able to bypass all that noise, and uploaded it on a Tuesday, I was told that my brain scan will be up for review today at the tumor board. Now, we were pretty excited about the UW radiology report of my brain, but after uploading the images, I scrolled through my brain and was reminded of how huge the tumor is. The amount of haze. The thick white area, and the diffuse area which spans, probably, a fifth of my brain matter. It’s disturbing. And scary. After the last MRI we chose not to look at the images, it was too upsetting. That means it has been a year since we looked inside my brain. Na├»vely, I keep hoping that the tumor has shrunk, but no such luck. If we’re lucky, we should have an update on the status of my…

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