MrBrightside's Message Board Messages

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RE: Proton raditation

by MrBrightside - March 26, 2017

Just as a follow up to this post.  I just wanted to mention that I had a setback with my oligodendrogliomo in December 2016 and it spread to my cerebellum and right frontal lobe.  The orgiginal area treated by proton is still stable so it may have just been some cells that had moved to those areas before I was even treated.  They can't say for sure though.

But they were able to do proton treatment again since it was the other side of the brain.  I'm just finishing that up now and also will be doing PCV chemo.  I would still recommend that anyone get a consultation on proton if considering radiation.  Especially if your tumor is a slower growing type and you have many years of quality life ahead of you.  Proton therapy can help avoid additional problems. 

Tried to reply from iPad but doesn't seem to have posted.  This may result in a double reply...

I'm so sorry not to have responded sooner.  I guess I did not have the box checked to get notified of responses.  Oddly enough I have been in proton radiation treatment again for the other side of my head and will finish this week.  I found out in December 2016 that although my original frontal lobe area is stable, that the tumor had 'likely spread' to my cerebellum and right frontal.  Discouraging news.  They say likely because it only takes a couple cells to have already moved there even before I was treated last year originally.  But they can't say for sure.  So I started with one cycle of PCV chemo in January 2017 and then started proton radiation in February 2017.  The proton radiation finishes this week and I will then pick up the PCV for another 6-8 months.  I did Temodar a couple years back but it didn't result in much of a change for me.  
I'm very sorry to hear about your son.  My guess is your he has already started his radiation and Temodar?  I would be happy to discuss with you on the phone if you want to send me a private message.  
Overall the difference between standard radiation and proton is this...
They both treat the tumor itself pretty much the same.  So one shouldn't expect that protons will be an advantage over standard radiation in the actual treatment results.  However proton hits less collateral areas on the way in and out.  The advantage in theory is less potential for other issues in following years because in essence the treatments themselves can cause additional problems or cancers.  The oligodendroglioma is dangerous but slower growing.  Treated properly and in good location, a patient can have many years left ahead of them with todays treatment options.  If you had to have a brain tumor, it would probably be one to hope for although I don't know them all.  I've had some setbacks with mine, but many do not.  
The brain and spine are two good areas to reduce these areas for collateral damage and it is ashame the technology is so expensive and in limited availability.  Some insurance may cover it, some may not, and some may take a month or two of paperwork from your doctors requesting that it be covered.  I would highly encourage anyone considering radiation to at least get a proton consulation if there is a facility that will see you.  At the very least, it will be another opinion on your case.  They may tell you there is no advantage to proton for you but at the same time they may give you more information on your case you never had.  Many people travel in from other parts of the country or even the world for treatment.  Some hospitals have charitable places to stay for free or reduced costs including meals.  Always be sure to ask if that is something that could make or break your decision to be able to afford the treatment.
Good luck to all.  Feel free to post additional questions here or private message me for more information.
Hailey120- I'm so sorry not to have responded sooner. I guess I did not have the box checked to get notified of responses. Oddly enough I have been in proton radiation treatment again for the other side of my head and will finish this week. I found out in December 2016 that although my original frontal lobe area is stable, that the tumor had 'likely spread' to my cerebellum and right frontal. They say likely because it only takes a couple cells to have already moved there even before I was treated last year originally. But they can't say for sure. So I started PCV chemo in January and then proton radiation in February. Considering the developments, I was probably lucky to be approved for proton again, but I was. My guess is your son has already started his radiation and temodar? I would be happy to discuss with you on the phone if you want to send me a private message. Overall the difference between standard radiation and proton is this... They both treat the tumor itself pretty much the same. However proton hits less collateral areas on the way in and out. The advantage in theory is less potential for other issues in following years because in essence the treatments themselves can cause additional problems or cancers. The brain and spine are two good areas to reduce these and it is ashame the technology is so expensive and in limited availability. I would always recommend anyone to get a proton consultation if possible. At the very least it is another opinion on your case. It only has advantages in some cases. Some insurances cover it, some don't, and some may take 4-8 weeks to decide if they will cover it.

I too think it varies from patient to patient.  My 83 year old mother in law passed away from a GBM this past summer after a 6 month battle.  It was in the lower back half of her brain and spread quickly despite surgery and some radiation.  I would say that in her case she started having trouble walking about 6-8 weeks before she passed away.  She was bedridden the last 4 weeks or so.

I myself have an oligodendroglioma grade 3 which has unfortunately spread into my cerebellum which apparently is where your balance is processed.  I have yet to fall but have been uneasy on my feet the last couple months.  I'm currently doing radiation and then will finish my PCV chemo I started just before the radiation started.

I wish you the best.

The situation with my Oligodendroglioma has changed again so I thought I should give an update here which may be of value to others in the future.  Unfortunately mine has now spread to other areas of the brain which I will detail below as well as the new treatment regimen I will be on during 2017.

First a summary of what I have experienced and been treated with to date:

2010 Oligo discovery in left frontal after seizure and surgery to remove

2014 Progression discovered on routine MRI and treated with 11 months of Temodar (little to no improvement)

2015 Had another double gran mal seizure and surgery again to remove new growth.  Pathology showed my oligo was now a grade 3 instead of grade 2.

2016 Did 6 weeks of proton radiation at MGH in Boston

In December of 2016 I had my 3rd follow up MRI after the radiation which unfortunately discovered that while my original treatment area in my left frontal appeared unchanged, new growth has started in two areas.  First, I have minor growth in my right frontal lobe.  Second and more importantly I now have a tumor starting in my cerebellum also on the right side.  The cerebellum is responsible for your balance and I had actually started experiencing minor issues with my balance in the weeks before my MRI showing it.  I was going to report it to my doctor during our appointment after my MRI, but he actually brought it up first and then I told him.  He wasn't surprised at what I was experiencing based on my MRI results and my symptoms with that have since gotten a little worse (dizziness, minor nausea when moving around much, spinning sensation when closing eyes after lying down).

I got two opinions on my latest MRI results and both were similar.  While there is no way to know 100%, both doctors were quite confident these two new areas were not 'new' cancers but just very likely that cells from my original tumor had travelled through normal paths within the brain and then developed into new tumors.  Both doctors agreed that I needed to start treatment ASAP and that it should be both PCV chemo and radiation.  Since everything is now on the right side of the brain instead of the left, I can actually do radiation again.  The plan is for me to do one 6 week cycle of the PCV chemo (Lomustine, Procarbazine, Vincristine) starting this week and then switch to 6 weeks of proton radiation, and then 4 or 5 more cycles of PCV immediately following the radiation (depending how my body is handling it).

So that is where I am at now.  My long term outlook is not great.  The area in my cerebellum cannot be operated on so it is very important that these treatments work the best they can.  If I get the best possible results from them, I'm told that I have probably 6-8 years.  Poor results would mean less.  I continue with high spirits around my family and friends though.  I think that is important.  

I don't know if that area is operable or not but I would think if you went to two different places for opinions they would have mentioned that to you while you were there?  

Other than that, I would say if both places told you to continue to monitor with MRI's for the time being then that sounds logical to me.  Generally speaking, I think treatment is generally saved for active or 'progressing' tumors and they would take action as soon as MRI's indicate this is occurring again.

Be vigilant with the follow up MRI's though.  I would do them as often as your insurance will cover.

PineHillGirl reminded me of something else about my recovery after my first surgery.  I am normally really easy going and nice but I suddenly turned into a bit of a jerk in the few weeks following my first surgery.  I typically filter everything I say about 3 times before it comes out of my mouth, but suddenly I had no filter at all and was being mean for no clear reason.  My two girls were only 8 & 13 at the time.  I don't think we figured it out until later on, but we are now quite sure it was the steroids I was on to reduce brain swelling and then coming off of them too fast instead of tapering off.  Going into my second surgery my wife was sure to mention it to my doctor and it wasn't as big a deal.  We joke about it now but it wasn't a joking matter back when it was going on.  Coming of steroids quickly can really mess with you.


I've had surgery on my left frontal lobe twice now - once in 2010 and again in 2015.  First thing I would say is every patient and every surgery is different as a whole.  So it is tough to say exactly what to expect.  But basically I'm pretty sure I remember sleeping propped up a bit the first week or two after surgery to relieve some of the pressure.  I don't think I would sleep all the way through a night but rather would get up at times and then go back to sleep as well as nap during the day.  A reclining chair works well.  You want to keep yourself moving though at some level and try to ease back into a daily routine even if it is just getting short walks in or moving about the house.  I remember having a very weird sense of time especially after the first surgery.  Time either flew by or went very slowly.  Concentration and focus was really bad but it comes back slowly in time - by that I mean it could be weeks or months.  I can remember at times scrolling through the guide on the tv for what seemed like forever because I couldn't make a decision on what to watch - but I also remember not realizing it at the time.  Recovery times vary.  I took about 3 months off from work after my first surgery and maybe a little less after my second.  I had also had pretty major seizures in the times leading up to each and I think it took me longer to mentally recover from those than the surgeries themselves.  So without them, recovery could be faster.  Everyone is different though!!  

Be vigilant about follow up MRI's in the months and years after surgery.  Do not blow them off and if your doctor does not think they are necessary then find another doctor.

RE: Proton Therapy

by MrBrightside - December 21, 2016

I did proton therapy earlier this year for 6 weeks in Boston.  I'm in CT about 2.5 hours away and decided to take the train most of the time and family gave me a ride maybe once a week.  I was lucky in that Amtrak could get me very close and the Boston subway took me to the hospital only two stops away from there.  Despite it costing a little more than driving, I preferred the train as I could sleep up and/or back and rest more during my treatments.  While I certainly appreciated my family's efforts to drive me and their company, I found the train to be peaceful and relaxing.  It was also good to sleep in my own bed at night and our family life wasn't very disrupted at all.  I typically left after my wife left for work and the kids left for school and was home by mid to late afternoon.  There was also a small discount on the train costs with a letter from my radiation oncologist.  You likely don't have the train option but I would consider it if you do.  I also don't know what your husband's mobility will be during the treatments or the timing of his treatments.  While it seemed so overwhelming at first, I quickly came to understand that my appointment times and the staff were flexible enough to still get me in without any stress even if my train ran a little late.  They were great to work with.

If you do need to stay there, and it sounds like you do, you may want to inquire with the treatment hospital and be sure they don't have special discounted housing available for patients and their spouses from far away.  I don't remember the name of it, but MGH in Boston had something like this which was sponsored by a pharmaseutical company and run by volunteers.  It offered rooms with basic meals or at least dinner included and it was homemade.  Availability was limited so you had to inquire and see if it was available.  There was also the social aspect of mingling with others also there for treatment as opposed to just seeing each other 24/7 for weeks on end!  Even if it was only for part of your stay, something like that could break up the monotony of a hotel stay.  I didn't need it but I did look into it.

Good luck to you and your husband.

RE: Temodar and Hair Loss

by MrBrightside - December 07, 2016

I too had no hair loss during Temodar.  I would discuss with your doctor to make sure nothing else is going on.

Two years later I had radiation and did lose hair in the areas where the beam entered my scalp.  It grew back a couple months later which was good although I have recently had some loss again in the main area (not as bad as the first time).  My doctor told me this was possible when discussing the treatment originally.

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About MrBrightside

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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