Brain Tumour Survivor

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PostPosted: Sun Jul 04, 2010 6:07 am 
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My radio oncologist is also "very pleased" with the latest scan of the 28th, so I'm not concerned about my neurosurgeon's critique of two months ago.

Both my oncologists place a lot of emphasis on symptoms (or the lack of them), but despite the fact I'd just run 3km to be in time for the appointment, this neurosurgeon was sure I was in a pretty bad way. It was bizarre and scary.

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So I would not put too much weight on these reports, in this case a neurosurgeon is more likely to read a scan correctly (not saying that your neurosurgeon was right in this case).


I think it's a little bit more complex Ken. Radiologists are well known for being far more pessimistic about scan results. Oncologists often tell their patients NOT to look at the radiologist's report as they often scary. I personally don't. I have more faith in the interpretation of my oncologists, who are familiar with the treatment I'm receiving. I'd put very little faith in a neurosurgeon's interpretation, who hadn't seen me in 10 months, and who is completely out of the loop as far as the treatment I'm receiving. I know you mean well Ken, but given how different everyone's case is, we all need to be careful about making blanket comments on this forum.

The reason why I've shared this story is to illustrate that you need to keep your wits about you when you're trying to beat this thing. Just sticking with the facts, not really looking for assessments.


Last edited by Morpheus on Sun Jul 04, 2010 8:33 am, edited 1 time in total.

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PostPosted: Sun Jul 04, 2010 7:03 am 
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I've just realised why so few BT patients participate here; if it's not some dumbass neurosurgeon pulling you down, it's fellow BT patients. Good luck everyone, but it's time for me to stop logging in here.


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PostPosted: Fri Jul 09, 2010 2:30 pm 
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Hi Morpheus

My dad was diagnosed with a GBM4 (inoperable) around the same time you were, so I’ve followed your story from the beginning. Like everyone else I found this diagnosis very hard to come to terms with but I have been so grateful for this forum and for all those who’ve contributed, you especially as you’ve always been so positive and encouraging. I particularly enjoyed your post about your favourite GBM4 survivor stories. I’ve read and re-read those stories and keep hoping that my Dad will be able to post his own one day (hopefully you will too!). I hope that you can leave this site if that’s what you choose to do knowing that you really have made a difference and have helped others, at least two of us anyway – dad and I.

And good luck getting off the Dilantin. Not sure if it’s anything like Keppra but that stuff turned my poor dad into a complete emotional wreck, we figured it was better to be off it and risk another seizure than spend everyday so terribly depressed. So far no seizures.

All the very best x


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PostPosted: Mon Aug 02, 2010 12:46 pm 
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When I first came out of hospital after surgery, I was resigned to lying back and waiting until I die. Looking at my kids filled me with despair. Looking at other dads with their kids filled me with despair. It was only after I stumbled across Jerry Kline's site (http://jerrykline.com), the first night out of hospital, that I realised there was hope, and it was real, and for that I will be eternally grateful. It takes courage to share one's story.

I'm also grateful to Femme (on this forum) who helped me see there is hope for Aussie GBMers - not just Americans. :D

I had hoped BT Survivor would be a place of sharing stories and finding hope in other people's courage, but aside from the odd exception, it generally seems to be a place where some people think quoting survival statistics to newly diagnosed survivors is some kind of help. That's just not right.

Thank you for your note Bluefoot - it means a lot to me. It really does. I also reread those survival stories. Please wish your dad all the best from me.

Anyone reading this will note the date this was posted.

My scans have showed no change since last September (just after radiation finished). If my ex-neuro surgeon was right that my stable scan was showing progression, with further chemotherapy (which obviously I didn't get), I may have made it until about April this year.

Don't necessarily believe what people tell you on these forums). It's hard work terminating a brain tumour, and people aren't necessarily thinking clearly when they type what they believe are helpful comments.

A year on from diagnosis, when I look at my kids, I am filled with gratitude and joy. I know what's important in my life.

Of course I'm sailing in a sea of uncertainty, but damn the statistics, and damn anyone or anything that gets in the way.

If you want to keep in touch message me (I'll get an email sent to me) and I'll give you my website details.


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PostPosted: Tue Aug 03, 2010 12:25 pm 
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Actually, pissing off, or being intimidated has never been my style, and I don't think I'm going to start now. Bluefoot, you made me realise, that there really is a value in sharing our stories.

Well that's great news that your dad is off the Keppra. I'm back on the Dilantin, as I may have had a focal siezure as I was trying to get off (my little finger went numb for a few minutes). No one is exactly sure it was a focal seizure - one doctor thinks I just had my hands in a bad position when I was typing, but it's a case of better safe than sorry, and I've had no such experiences since being back on the Dilantin. Plus getting off the Dilantin was a pride thing; I've been tolerating it quite well. Thankfully the following scan showed no change, so if it was a seizure it didn't affect anything.


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PostPosted: Fri Aug 06, 2010 10:05 pm 
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Hi Morpheus
GREAT to see you back posting again, I was horrified when i read your post from 17th Aug, made me feel like Id lost a friend! I hope things are going OK & we will meet next time even if I have to stick a name tag on my bloody forehead!

Regards Stacy


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 Post subject: wrong date
PostPosted: Mon Aug 09, 2010 9:46 pm 
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sorry Morpheus I had put the wrong date in my previous post I meant Sun Jul 4th, just having a blond moment!!!
Regards Stacy


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PostPosted: Mon Aug 30, 2010 5:27 am 
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Hey guys, damn those DAMN statistics.

Ken, you're right, comedies are the way to go. I never knew Adam Sandler, Jack Black and Ben Stiller made so many comedies when I was snoozing through the early to mid 2000s.


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PostPosted: Mon Aug 30, 2010 6:15 pm 
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Is that damn squared? ;).

I also recommend stand up comics. One of my favourites is Carl Barron, but feel free to select your favourite(s).

It may be that laughter is the best medicine - either way who can feel bad after a good laugh?


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PostPosted: Thu Oct 21, 2010 10:07 am 
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First up, I’m sharing this experience because I find comfort in meeting others in my (or similar) predicament who refuse to take their doctor’s advice and go home and wait to die. Defiance is infectious. Comments of encouragement or sharing are gratefully accepted, negativity is a waste of my time and yours. Taking on a GBM4 is not pleasant work, but some of us find ourselves in this situation, and that is the only rational and reasonable way forward for us.
For those who don’t know, I was diagnosed with a GBM 4 on July 31 2009. As soon as I started combined radiation and chemotheraphy I also started taking Avastin/placebo as part of the Avaglio clinical trial.
As of October 20, 2010 scans have not changed since radiation finished in August 2009, though the last few months have presented some minor, ands now, overcome obstacles.
Friday August 13 started strangely, and it would end strangely. Walking up the hill to Royal North Shore Hospital I saw a bizarre sight – cars honking an elderly, frail woman carrying a huge bag walking up the middle of the road. It was obvious that she was struggling with her load, and so I did what anyone else would do, and ran up to where she was, and offered to carry her bag – much to the lady’s relief. I’m a fit 38 year old, but I struggled. The poor old dear was so relieved, but it was absolutely no big deal, and I told her as such. As I left her at her ward, she said to me “A good deed never goes unrewarded, no really, I’ve been around for a long time, and I can tell you, a good deed is always rewarded. I laughed when I she told those words, and told her again that “it was no big deal, I was just happy to be able to help (something I meant quite literally).Her words would later ring in my head later that day.
I had my scheduled blood test, and later went to have my scheduled infusion of Avastin(or placebo) – but my blood test came back very strange, and there was protein in my urine, so the infusion was to be delayed, with further urine testing over the weekend.
When I went to bed that night, something didn’t feel quite right, and I noticed that I couldn’t properly control my left hand, and then it started shaking. I told my wife I thought I be about to have a seizure, and sure enough as I tried to get to the lounge room my arms and legs started shaking uncontrollably. My wife called an ambulance, and when it arrived ten minutes later I was still having the seizure, though I was fully conscious and standing throughout the experience (please don’t do this at home). From a consciousness point of view it’s hard to explain, but it felt like I was far away, and my mind was somehow electrified (if that makes sense), I wasn’t sure that I was coherent, though the ambulance officers assured me that I was. Arriving at the hospital, one of the nurses on duty (a burly man with a moustache) commented after reviewing my file “you’re a man with an interesting medical history. I promptly threw up on myself and everyone around me. I had Salmon that night so it was a not a pleasant experience. For the first time during this whole thing, I allowed I myself a single tear, and the thought, “Not tonight, please, not in this way, and please not tonight.” Funnily I wasn’t praying to Roche or Schering-Plough Corporation.
My wonderful medical oncologist arrived early on Saturday morning, looking concerned.
“This is serious,” she said.
“Your sodium levels dropped, causing fluid to swell your brain – anyone would have had a seizure, we need to stabilise you, and we’ll need to stop the Avastin”.
It also turned out that my Dilantin level had dropped to be point where it was no longer therapeutic, which also may have contributed to the seizure. An MRI the next day showed no change compared to previous scans, much to everyone’s relief.
I was in hospital for four days.
A follow up MRI on August 24, also showed no change.
I also experienced high blood levels of potassium, which meant I had to stop eating my beloved bananas.
My medical oncologist put me on Keppra and weaned me off Dilantin. She also put me on “just in case” chemo.
Just a couple comments.
Shit happens, my advice is (for what it’s worth) if you can, get back to your life, and keep moving forward as soon as you can. Since August my life has continued to be fantastic, I’ve celebrated my second daughter’s birthday, and last night attended the parents’ orientation for the kindergarten class of my first daughter. Reflecting on the experience later, I realised that even as I sat in Emergency covered in vomit, I still loved being alive, and I especially loved those close to me.
Ironically, as I write this on October 21, 2010, it’s 14.7 months since diagnosis. Anyone treated for a GBM4 will know the significance of this.
No one knows the future, but I refuse to live a life ruled by fear and uncertainty (there you go there’s my obligatory platitude). I believe providence got me into the Avaglio trial, but given that a year of Avastin was beginning to screw up my kidneys, and who knows what, I also believe providence got me out of the trial.
And a final note, seizures , particularly partial seizures are not necessarily a big deal. Before you assume the worst, take into account that that there are many factors that contribute to seizures. Stay well everyone.


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PostPosted: Fri Oct 29, 2010 7:07 am 
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Just one more thing on the August 13 incident- as a wise, and astonishingly handsome man once said: "no big deal, whatever."


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PostPosted: Fri Oct 29, 2010 7:36 am 
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I had my first seizure in over 3 years at the end of June. Unfortunately for my troubles I had to spend the night in hospital with a catheter in. Not as bad as your experience, but a lesson still. No further problems since - apart from one month not driving. Glad yours turned out to be no big deal too :).


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PostPosted: Mon Nov 29, 2010 8:02 am 
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Haven't heard from you in a while - hope things are going well :).


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PostPosted: Mon Nov 29, 2010 8:35 am 
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Hey Ken, thanks for the note. Healthwise, things have been quiet. I'm 8 days into my bonus cycle 4 of Temodal. It's uncomfortable, but with a routine, I'm able to have a productive work day - I just don't schedule work meetings for 12.30, because that's when the chemo haze sets in. BTW - a year late I finally read this:
http://virtualtrials.com/pdf/williams2010.pdf

I've purposely not read too much about the pre phase III work on using Avastin with newly diagnosed GBM4 (I made a decision at the time of diagnosis, and I don't believe in having regrets), but having read Ben's summary, I can see I've got a lot to be thankful for. Of course who can know what will happen tomorrow, but as I've said to my oncologists. I'm going for it.

BTW - I think Ben Williams is probably the "Gold Standard" Survivor" Fifteen years out, he's doing remarkably well, and his story is well documented, and helpful whatever approach you've chosen to take.


Last edited by Morpheus on Thu Dec 30, 2010 3:25 pm, edited 1 time in total.

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PostPosted: Thu Dec 16, 2010 2:16 pm 
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MRI (North Shore Private) 24/8/20/10 - Right parietal lobe unchanged in size and appearance since - No new abnormlity elsewhere.

PET (rpa) 28/10/10 - THe large partly calcified abnormality in the rght parietal is hypometaboliC consistent with deafferentation.There are no regions of increased metabolism to inicate active tumour.

Cemo was continued (Extra Cycle 3 (ie Cycle 9) started 25/10


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