Standard of Care (up to date), Reading and Research

While in the hospital recovering, my oncologist planted the seed that if my tumor turned out to be malignant (i.e., cancer), there was something that they refer to as Standard of Care (SoC) that would be started. Again, she reiterated that I should be careful when researching GBM to not get hung up on the statistics I would see. She said every instance is different, and that I was starting the journey at a good place (good overall health, no other diseases along for the ride, etc.). And, she told me if SoC did not have the results she expected, then we would look into all available clinical trials and alternative approaches. She did a very good job keeping me focused on the long term, regardless of what I would find when I started searching for information via Google.

The start of SoC turned out to be 42 straight days of an orally administered (capsules at night by me wherever I was) chemotherapy named Temodar or TMZ concurrently with 30 doses of precision radiation aimed at the tumor cavity and the remaining cancerous cells in the fingers that the neurosurgeon could not safely remove (my understanding based on the radiation plan/map that my radiation oncologist showed me). I began the 6 week cycle of both on 5/28/18 for the chemo and 5/29/18 for the radiation, completing the cycles on 7/8/18. Some of my best memories of that time are the days (all 30+) I walked down the stairs (in the middle with no need for any handrails) into the radiation clinic for what turned out to be roughly 15 minute sessions. At the bottom of the stairs, every day, I was amazed at how my balance had returned. And, I did my best to share my exuberance with the clinic staff (who, by the way were phenomenal...perhaps more on that later). For radiation, I was fitted with a mask that was used to lock my head down to the table to ensure I was in exactly the correct position for each dosage.

A few weeks after the end of the 6 week cycle, I had my first MRI, and it was very clear/stable! I could not have gotten better news. Since then, I receive an MRI every two months and have switched to a chemo schedule of 5 days of higher dosage TMZ followed by 23 days off, so 28 day cycles, still all orally administered by me at home. Thus far, I have completed 6 chemo cycles and 4 MRIs. All MRIs have been stable, there are no signs of tumor regrowth activity. (I get two MRIs, one without a contrast dye and one with contrast. The contrast image is the one that would show tumor growth, swelling, necrosis (dead cells grouped together) from the radiation (which apparently can occur months after the last dose), or new blood vessel growth (also referred to as angiogenesis) which is a sign the cancer cells are gathering and working together to form a new tumor. So, again, so far, I could not ask for better news.

In July, I also started wearing a device called Optune which was FDA approved as a part of the SoC a couple of years ago. The device consists of a power source connected to transducers placed on my head (pictures and usage experience available if you are interested) which establishes an electromagnetic field in my brain which turns out to slow down the mitosis of the glioma (cancer) cells. So, it is a delay tactic to stall the recurrence of the tumor, which to date, is inevitable. It fits into my goal of delaying the recurrence as long as possible so the crazy-smart scientists can continue their efforts to discover the ultimate cure.

Throughout all of this, I have read many books about diet and cancer prevention. I have adjusted my diet to be plant first, healthy fats, lean protein, and whole grain. I have incorporated much more turmeric/curcumin, cinnamon, and ginger into my meals. I eat very little processed food and consume as little added sugar as possible. I refrain from eating what I call white flour products.

I have read many journal articles and about many clinical trials, also. The science behind the brain, its micro environment, and the challenges of delivering treatment that can cross the blood-brain barrier is fascinating. Over time and in consultation with my NO, I dialed back my research. With nothing to treat following surgery, months of stable scans piling up, and a recurrence that would present a new genetic profile, qualification for any clinical trials was highly unlikely. We agreed to do deep research when we had something to address. Plus, I figured out early on that I could skip the first two paragraphs of any articles or trial descriptions because all that was mentioned there was the dire state of GBM treatment and the median survival times. I only needed to read that once! In my case, we are focused on PFS (Progression Free Survival), monitoring for inevitable recurrence, and then OS (overall survival) which may send me back to the start of the surgery, radiation, chemo protocol and a new clock on PFS.

Update as of 2/27/19: I have had 4 clear/stable MRIs. I have completed round 7 of 12 high dose Temodar cycles. I could not ask for better news and I am grateful for the support of my family, friends and colleagues.

My next MRI will be on March 19th and I will post the results on or just after 3/20 on this blog, so please subscribe if you are able. :)

PS - In case I did not mention this in an earlier post, my tumor was MGMT methylated. This is important because methylated patients tend to respond better to radiation and chemo. That is, more cancer cells are removed via these two treatments when the MGMT genetic marker is methylated. Seems to be true so far for me! I have also had my tumor’s genetic profile assessed. That could be helpful to establish a starting point for clinical trial research upon recurrence, but again, the profile will be different, partly based on the glioma cells’ ability to mutate to hide from the Temodar.

Next up: Choices, Choices, Choices...

The Craziest Week of My Life - Diagnosis

I arrived at the urgent care facility on Sunday April 29th based on the advice of the on-call advice nurse and doctor following my fall and wave of nausea on Friday evening, April 27th. My 23 year old son drove me and listened carefully to the discharge instruction and things to watch for that would be presented later in the day. The doctor put me through some tests to check my balance, left/right strength, etc. One test in particular that I remember, involved me putting my arms out in front of me, hands palms up, and closing my eyes. When I opened my eyes, my left hand had turned palm down...I had not consciously done that. The doctor mentioned she did not know what was wrong, but she was concerned enough to schedule me for a head CT and MRI. The scans showed a mass on my right temporal lobe, measuring about 5-6 cm along its biggest dimension. The centerline of my brain was visibly curved and the left ventricle appeared to be compressed some. The doctor discharged me and explained to my son and me that the mass was in a seizurgenic (maybe seizurogenic) area of the brain, so we should be on the lookout for seizures, and for any recurrence of any of the other symptoms I had been experiencing.

The morning of Monday, April 30 started like a normal morning. While lying on the couch and drinking my morning cup of joe, my left hand and foot shook for about 20 seconds or so. I had no nausea or loss of consciousness, and I thought it was simply trying to drink from an awkward position. But my son saw me shaking and would not accept that as the reason. He told me I had just had a seizure and told me to get in the car. He took me to the ER and I was admitted. Based on the results of the scan and the seizure, I was held overnight for observation and quick action was taken to schedule me for consultations with a neurosurgeon and neuro-oncologist the next day. The night passed without incident and on Tuesday, May 1st, I was driven to the Neuro center where I had a higher resolution MRI done and met with the aforementioned doctors. The neurosurgeon explained that the tumor was located in an area he could access and that the size and location of it did explain my balance issues, episodes of deja vu, and the focal seizure I had the day before. He scheduled me for surgery on Thursday, May 3rd. My oncologist talked about potential treatment options if the pathology indicated it was cancerous. She also reminded me that I would see a lot of statistics and to try to think about the long tail of survival because I was in overall good health and that she has patients that have far outlasted the medians. Walking to lunch that day, I would take two steps and drift into my wife and then take two more and drift into my son. I pinballed my way to the deli, had a sandwich and then met with some of the administrative staff and left for home with many forms to fill out and a check in time of 6:30AM on Thursday, May 3rd for an 8:30 surgery.

When my son dropped me off at my apartment that day, I was reaching into the back of my car to get something and my left side started to shake. Seizure #2. Again, he took me to the hospital and I was held for observation before being transported to the neurology center via ambulance the next day, May 2nd.

On May 3rd, my neurosurgeon completed a successful resection of the tumor. He said he removed 95-98% of the tumor, which turns out to be a very good result. The way the tumor I had grown (and most, if not all, tumors of this type grow), there were fingers of the tumor growing into healthy brain tissue, making it impossible to remove the tumor fingers without also removing the healthy brain tissue. He used a few fasteners to connect the piece of skull he had to remove to access the tumor back to the remaining skul and used 52 staples to hold the skin together (my brother, who had flown in with my mom from Rhode Island, counted them for me).

My recovery went very well, my balance came back quickly, and I was soon doing laps around the recovery floor. On Sunday, May 6th, I was discharged without any orders for physical therapy or occupational therapy based on the results of the testing they did in the hospital.

On Monday, May 7th (if my memory serves me correctly), my oncologist called me with the preliminary diagnosis based on microscopic pathology and analysis of one genetic marker (IDH1). The surgeon had indeed removed a cancerous tumor, specifically a Glioblastoma Multiforme Grade 4. My IDH1 was negative, meaning it had been a very aggressive tumor that had grown quickly. So, there it was, I had just had a craniotomy to remove as much of a malignant brain tumor as possible. Fortunately, I did not have any impairments beyond needing the craniotomy to heal. But it could not be denied, I was now a brain cancer patient. A follow up appointment with my neurosurgeon and Neuro-oncologist was set for May 15th and I went about my days focused on caring for my incision, walking a bit more each day, showering myself and trying to carry out routine tasks around the house, including making meals for myself, etc.

Up next...Standard of Care, Reading, and Research

Soapbox #1

As my symptoms continued and the details in the following posts played out, I discovered the first important message I wanted to share along whatever journey I would end up taking. As colleagues and friends told me I had seemed “off”, was favoring my left side, and I was crashing into things inside my apartment that I had never even brushed against before, I thought “that was really deviant from my baseline existence up to that point”. And that is Soapbox #1 that I have stepped onto many times since: Know your personal baseline. If you diverge from it and things do not improve, check it out. And, do not assume you know what is going on with you. I was so convinced I had a sinus infection, I wouldn’t have listened to any other possibility. The sum of my experience and feedback and concern from my family, friends and colleagues, was completely lost on me. I heard what I wanted to hear. So, if you fall off track, be open to new possibilities. Also, please, know the baseline behavior and capacities of those you hold dear and/or interact with on a regular basis. Call them out on the change. Push them to get checked out, and if they report nothing was found and they remain off the rails, don’t stop pushing...push harder. I realize it is a delicate situation to tell a loved one, or a colleague or a leader in any organization that you are worried about them and then to stay on them until they have an answer as to why they are “off”. I had many excuses why I seemed “off” and I Appreciate everyone who did call me out. If they had pushed harder, I likely would have fallen back on my excuses. This may sound like I am blaming people around me for not pushing me. That is in no way the case.

Up next “The Craziest Week of my Life - Diagnosis”.

Onset

One night in March of 2018, I had a headache that made sleeping difficult. The next morning, I walked out to my car and thought, “Oh no, here we go again. I mis-timed starting my medications for seasonal allergies. The green film on the hood of my car satisfied me that the cause of the headache was clear. I’ve been a hay fever sufferer for decades, and over the years, have had my share of sinus infections and bronchitis. My family used to track me down in a store by listening for my incessant sneezing. Allergic Rhinitis appears on my list of ongoing conditions. More nights of headaches caused more nights of poor sleep and fatigue started taking its toll. I started to lose my balance from time to time, including a significantly high number of falls during a men’s hockey game in early April (I hadn’t fallen that much since I took up the game around age 6 in Rhode Island.) Looking back, I could have taken the fact that my teammates would not let me drive home as a significant sign. However, I had convinced my self that it was simply a worsening sinus infection that was possibly evolving into an inner ear issue. Through April, I became more and more anxious about the lack of sleep I was experiencing and the headaches and stumbles continued. My doctor and I tried different strategies to manage the anxiety, improve the sleep, and treat the symptoms of the sinus infection I remained convinced I had. I took time off from work to focus on getting better, but things seemed to have reached a steady state of discomfort. In the weeks that would follow, I would learn that at times I was noticeably favoring my left side and that some of my text messages and phone conversations had lost whatever sharpness they had had in the past. The month of April ended with one final fall to all fours and a feeling of extreme nausea, a symptom that my doctor had asked me about but had not appeared, until Friday the 27th. With a new symptom box being checked, and my doctor not being available until the next week, I called the advice nurse at the local urgent care/hospital, explained my symptoms, and I was scheduled to see a doctor on Sunday, April 29th. Next up, “Soapbox #1” and then “The craziest week of my life”.

Introduction

My name is Craig Frost. I am 51 years old, live in Pleasant Hill in Northern California, and am a newly diagnosed Glioblastoma Multiforme Grade 4 survivor. I gain a lot of strength from sharing my journey/story with others, so I decided to start a blog as a way to chronicle my journey and keep my friends and family up to date as it continues. I also look forward to forging new relationships with survivors, caregivers, and anyone who stumbles across my posts in hopes that I can share my experiences with them, and perhaps brighten their day. I will begin with a post about the onset of symptoms and add posts to bring the journey up to the present day. I am not always succinct, can be preachy at times, and am certainly not an expert on some of the topics I will cover. I do have a growth mindset though, so constructive dissent and alternate opinions are welcomed. Until my next post, have a blessed New Year and I wish you and all those you cherish peace, health, fulfillment and happiness.

Craig