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About MrBrightside

Patient
Brain Cancer
Alternative Treatments, Cancer Treatments, Chemotherapy, Diagnostic Imaging, Radiation

I currently as of 5/2016 have Grade 3 Oligodendroglioma in my left frontal area of my brain.

Here's my story. I'm from the northeast US and in Sept of 2010 I was in California for a tradeshow for work. The week before the trip I started waking up at the exact same time every night (4am) with a splitting headache behind my left eye. I'd take Advil and go back to bed. I also started having strange reoccuring dreams. The day or two before the trip I started feeling weird - just not myself at all. With no reason to think anything was serious, I drove myself to the airport about an hour away very early on a Monday morning and left on my trip.

Things got real weird upon arrival in CA. A coworker picked me up at the airport and we drove to the tradeshow. I continually told him I felt odd. The ultimate optimist, he told me I was fine. I wasn't. I quickly realized I could not remember 95% of my trip. My drive to the airport, changing planes, nothing but some vague details I wasn't even sure actually happened. Trying not to scare my wife, I told her this but watered it down.

The second night I was there, I had dinner with my coworker and then told him I wanted to go to bed early. This was odd behavior for me as I had never even been to CA before. I went back to my hotel room and tried to return some work emails, however, I coudn't concentrate at all. I stared at a simple two sentence email response to someone for an hour and continued to make corrections for no reason. I eventually deleted the email completely and didn't send it at all because I had no idea what I was typing. I went to bed at 9pm.

Fast forward to midnight when I woke up drenched in sweat, my shoulder was on fire, and I had no idea who I was or where I was. I opened the curtain to see traffic going by and probably the most scary feeling someone can experience. Total amnesia, albeit temporary thankfully! I wasn't sure who I was or who my family was but I knew I had a cell phone and found it and called the preset for 'home'. My poor wife answered, at 3am her time no less, for the scare of her life - to hear her husband on the other end asking who and where he was. She was a rock - firing questions one after the other at me bringing me back to reality one step at a time...our kids, my job, where I was...it was still vague but coming back to me. She called me an ambulance. I opened the door and I sat in my underwear at the foot of my bed oblivous to just about everything. I couldn't move my left arm.

So that's what happened and I'll fast forward to the diagnosis. I had had a huge seizure in my sleep which I was probably lucky to survive since I was face down in my bed. It was so violent that I dislocated my shoulder. I was diagnosed with an oligogendroglioma grade 2 on the left frontal area of my brain. They wanted to operate out there but I was able to get a second opinion from a major brain cancer center in the northeast who said I was ok to travel home and have surgery immediately upon return. While in CA, they did a procedure to pop my shoulder back into place. My shoulder itself was going to be a very painful recovery to deal with at the same time as the surgery. I was put on steroids which turned me into a real jerk after my surgery. I'm a laid back guy with a huge filter on what I say. Apparently not so while on steroids. They also gave me terrible nightmares. I was off them soon enough though. I was also put on Dilantin for seizures at this time however I broke out in hives from it (allergic) and switched to Keppra as soon as possible.

My surgery went fine. Almost complete removal. I was out of work for 3 months. Concentration took almost all of that time to return and even when I went back to work I remember struggling with things I hadn't before. I remember struggling with my daughters 5th grade math homework and she would yell for my wife for help! We would laugh it off though. One interesting thing about the week or so between my seizure and my surgery. While I was in a bit of a haze, I had sporadic experiences of 'super-memory' if you want to call it that. Constantly we would be in public places and I would say to my wife things like "I remember her" or "I remember him" pointing to what otherwise would be complete strangers and many times I would remember from where it was. It drove my wife insane! For better or worse, that gift didn't last. Lol. But it did make me realize that we have troves of memories in our brains that for whatever reason are otherwise unreachable. But for some reason temporarily I was getting to some of them. But back to my mental recovery, I made a decision to take the bull by the horns and threw myself into otherwise difficult thinking situations in an effort to fuel my recovery. At my job, I took on new responsibilities such as computer network routing which involves extremely confusing concepts (at least to me). I also started teaching myself how to play guitar at this time which has been fantastic. I love it! All this helped me get back up to speed and better than ever.

I didn't do any chemo or radiation at the time, only the surgery. I had MRI's every 6 months for 3 years that were clear. I stopped taking Keppra after about 2.5 years. I was ready to put all of this behind me and move on with life. In January 2014 I had an MRI which showed the tumor was coming back in the same spot. Thankfully it was picked up early and no where near the size as the first time. I started Temodar chemo immediately. I had both deletions at the time so that is good. Blood work was very good after the first dose and I was upped to the high dose (385mg). I did 11 months doing 5 days per month. Side effects were mostly constipation from the anti-nausea pill which I tried to manage by eating the right foods during treatment week, headache which responds well to Advil (had to be approved to take after blood work the first month), and lack of energy towards the end of a cycle. Other than the first cycle, I have worked normally during all since. After a couple of cycles I got much better about knowing how much to eat and drink while on it which makes a huge difference (one day I got busy at work and didn't eat all day - big mistake!). I started getting extremely sensitive teeth after 2 months on Temodar. While it could be a result of the chemo, it may also be because I started eating a lot of fruit around this time and maybe it was wreaking havoc on my tooth enamel. My teeth have always been well maintained and issue free. My dentist made me special mouthpieces I wear at night to treat my teeth with flouride. It got better and was no longer an issue after that. MRI after 6 months of Temodar showed no tumor growth but no shrinkage either. After the 11 months, the tumor stopped growing but there was no major shrinkage either. My doctor decided to do MRI's every 3 months and monitor it closely.

I was stable until July of 2015 when I started to feel crappy again and ended up having a double gran mal seizure in my sleep again which put me in the hospital for couple days. MRI did not show anything obvious to have caused it but I immediately went back on Keppra and will be now for life. I had a follow up MRI scheduled for October 2015 but in September I was back to having trouble concentrating again. It was very scary and would come on at strange times with other people. I called my neuro-oncologist and they scheduled me for MRI asap. The MRI showed new growth and discussion at their tumor board recommended I have surgery again (#2) in December of 2015. The surgery went fine and recovery was not quite as difficult as the first one. Pathology results showed the tumor was now an oligodendroglioma grade 3. My hospital recommended radiation with the possibility of PCV chemo after the radiation.

Even before I knew I had to have radiation I knew I would likely need it eventually and researched it a bit. A couple people I know recommended that I get a consultation on 'proton' radiation therapy at MGH (Mass General Hospital) in Boston. I did this and qualified for treatment there and my insurance agreed to pay for it. It is VERY expensive. If you are not familiar with proton radiation and need to have radiation treatment, I would encourage you to investigate it further. My neuro-oncologist at my local hospital where I had my surgeries gave me a referral which was helpful. There are only a handful of proton centers in the US because it SO expensive to build them. The claim of proton radiation is that it is more accurate in its deposit of the radiation to the target site (ie tumor). Almost all of the power is discharged at the desired depth with much less before and after. Typical radiation hits everything as it goes in and then when it exits your body, causing collateral damage which can result in additional problems in future years. In some parts of the body this is more important than others. Obviously in the brain you only want to hit what you need to hit.

I ended up doing proton radiation at MGH every weekday for 6 weeks from Feb-March 2016. The staff there were excellent and will serve as my second opinion on all my decisions going forward. I took the train each day there and back from CT which worked out nice. I could sleep there and back if needed. Occasionally I got rides from family members. Side effects were basically fatigue and hair loss around the site of the tumor. Naps each day helped with the fatigue and still do in the weeks after as of writing this.

I had an MRI in late April 2016 one month after finishing the proton radiation and things look very good. At this time they are recommending not doing the PCV chemo.

Over time I have learned more about my type of brain tumor and now understand more that there really is no cure. Only treatments to extend life with the hope that additional treatment types will be approved and released very soon. I didn't understand all this after my first surgery. I find doctors tend not to talk much about your future because no two patients are really the same. If you ask them questions straight up, which I do now, they do answer the best they can whether it is good news or bad.

Update March 2017: My follow up scan in late December 2016 unfortunately showed that my tumor had spread to my cerebellum area as well as likely to my right frontal lobe. My oncologist was very concerned about this and recommended treatment immediately. In January 2017 I did one 6 week cycle of PCV chemo and then transitioned back into Proton Radiation at MGH. Once I finish this in late March then I will transition back to my PCV chemo regimen for another 5 or so cycles.

Good luck to all. Feel free to send me a private message with any questions on anything. I would be happy to help the best I can.

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