GBM4 Sydney Dx 31/7/09

Personal stories from survivors
Milti
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Thank You All

Post by Milti » Tue Jan 11, 2011 6:30 am

I have recently been diagnosed with GBM IV and I have to say thank god I found this blog. There is so much to take in that my head is still spinning as I have never had anything to do with this dis-ease before. Thank you all for sharing your stories and I hope I can add to your unique stories.

Morpheus
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Post by Morpheus » Tue Jan 11, 2011 8:17 am

You have already started sharing your unique story, and I personally believe that is an important and profound step.

Morpheus
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Post by Morpheus » Thu Jan 27, 2011 7:50 am

Started bonus cycle 6 on Monday 23/1. 15 days on 100mg of Temondal and 100 mg Procarbozine, 13 days off.

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kenobewan
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Post by kenobewan » Thu Jan 27, 2011 8:07 am

Interesting cycle, incorporating the old and the new. Glad that its working for you. Keep up the good fight!

Morpheus
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Meeting with two year survivor

Post by Morpheus » Thu Feb 10, 2011 1:12 pm

I met up with "Chris" yesterday.

Chris is a two year a GBM4 survivor (late 30s). He makes a point of not researching GBM4 on the Internet and has not changed his lifestyle. He simply does what his doctors tell him to do. He reeived standard treatment and 18 months of temodal and Procarbazine. He's in great shape, with only some deficiency in his planning abilities I only mention Chris because I think important to remember that every body's path through this is different, and it's important to do what you think is the right thing for you.

Morpheus
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Post by Morpheus » Fri Feb 11, 2011 3:49 am

Ken, I've never been able to find your personal story. Could you post a link? I'm intrigued by your case.

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kenobewan
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Post by kenobewan » Fri Feb 11, 2011 10:14 am

Thanks for asking.

Here's the earliest one I can find - http://btsurvivor.com/bb/viewtopic.php?p=1808

I have oligoastrocytoma grade 2, but I was a high risk of turning nasty due to bad karnofsky score. Wasn't given a date for the prognosis, but was told last year by one doctor that they were surprised that I was still alive.

Don't want to take over your post, but feel free to ask any questions.

Morpheus
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Post by Morpheus » Tue Feb 22, 2011 2:41 pm

Thanks Ken That goes some way to explaining why I find you so perplexing. Sometimes your comments are supportive, and other times they're cold and distant, as though you're a medical authority watching us from very far away.
Last edited by Morpheus on Tue Mar 08, 2011 7:20 am, edited 1 time in total.

Morpheus
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Post by Morpheus » Fri Mar 04, 2011 12:53 pm

Quick update..

Had an experimental FET scan last week at RNS, and of course, no one knows what it really means, but after an multi disciplinary meeting, the consensus seems to be that I'm OK. Both my oncologists were comfortable, and believe me, they let me know if they aren't.

My medical oncologist met a French Doctor at a conference who's treating a patient who like me developed kidney issues when he reached the high dose Avastin doses at the end of the Avaglio trial, so like her French colleague she's putting me back on lower dose Avastin infusions to see whether she can ease me back onto it.

Currently mid way through Bonus cycle 7 of chemo.

Oldest daughter started school a couple weeks back. I'm so grateful to be here.

Morpheus
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Minor update

Post by Morpheus » Thu May 05, 2011 8:51 am

I'll skip all the boring stuff.

Saw my oncologist just before Easter, and she said to stop chemo (2 days into bonus cycle 9 (ie cycle 15). For the first time in a very long time I'm starting to feel human again. It's nice.Just in relation to the experimental FET scan (not PET scan), my radiation oncologist, who's running the trial believes it showed my brain trying to regenerate itself.

Morpheus
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Post by Morpheus » Tue May 24, 2011 3:21 pm

Here's the boring stuff.

Dec 15. MRI. Had a focal seizure while waiting for radio oncologist, loosing control of left arm and leg.MRI looked very nasty.

Had a great Christmas though.
Jan 18 MRI looked nasty, Needed to look at left arm in order to control it.
Jan 21 Consulted with neurosurgeon. Said I was suitable candidate for surgery, but said it was only 60/40 not, he stressed 80/20. When he asked himself "what would I do?" he came to no conclusion.

After talking to my oncologist, decided to go with low dose Avastin, which would hopefully quiet things down, while minimising impact on kidneys (which caused major problems on August 13).

Jan 21 Received low dose of Avastin (600 mg.
Feb 4 Received low dose of Avastin 400 mg.
Feb 18 Received low dose of Avastin 400 mg.
Mar 4 Received low does of Avastin 400 mg.

Morpheus
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Post by Morpheus » Tue May 24, 2011 3:43 pm

MRI 24/5/11

Both radiooncologist and neuro oncologist were very happy with the MRI. Overheard oncologist saying to colleague his scan was "brilliant".
The theory at the moment is that the December 15 incident was late radiation damage arising because the residue Avastin in my blood stream from the Avaglio trial had dropped below the threshold where it subdued the radiation damage. A trial in the US has shown that four infusions of Avastin are enough to resolve radiation damage, bringing people through to remission. Apparently the trial had to be stopped, because everyone who got the Avastin responded.
Will receive 100 mg dose of Avastin on Friday.
Anyone fighting GBM4 knows there two cards you can pick at any turn, and that's certainty or uncertainty.Anyone with a logical mind will know that you should never pick the certainty card, for as Jung rightly said, anyone who takes the sure road is already dead.
Of course I realise that uncertainty reigns, but I do know that while December 15 was unpleasant, today I'm back in the ring.

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femme
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hi

Post by femme » Fri Jun 17, 2011 10:15 am

Happy to see all is going great for you also...
Take care & cheers

Morpheus
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Post by Morpheus » Mon Aug 01, 2011 9:15 am

When doctors with distant looks and bulging eyes,
Foretell a time of your demise,
If you dare seek, than you will find,
The answer deep within your mind.

Hey come on, being a 2 year survivor of a GBM4 gives me certain rights, including the vright to write bad, teenage poetry Take care everyone.

John

My real name, I am human being after all not, a tumour attached to a remarkably good looking body. And seriously, I am remarkably good looking. BTW, the poem is actually a riddle.

KellyJill27
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Post by KellyJill27 » Wed Aug 03, 2011 12:46 am

Hi Morpheus (John),

Ive followed your story since December'ish, I think and your case reminds me of my husbands. I hope you are well and I hope your poem or riddle does not mean the doctors have given you an expiration date. Yes, you do have rights though! I tell my husband that as well, he has a right to be angry, sad, indifferent, etc...

Its been 9 months, 1 week and 3 days since our world turned upside down(GBM4). Since then, my husband has turned 47 last week and he has returned to work, part time last week as well. He is still on chemo and we are waiting for the clean scan we've been praying for. He still fights fatigue, and his memory is still not so good, but Id say better than 2 months ago.

In May, he had an MRI where the dr told us the tumor was "dead". I had no idea how to take that. Really. I wanted it to be gone, not sitting there in his head, even if it is dead. For the first time, Kevin asked to see his scan. We saw a small ping pong sized ball of puss in the right frontal lobe. I just thought "THATS what has been causing all this trouble! That little ball of whatever it is!" Kevin and I just looked at each other. Boy were we angry! Im still trying to decide whether that was good news! I mean, yes its "stable" and "not active". But, well I just dont trust it.

He still has that droop to his left side of his face, drools like crazy and mumbles late in the evening from fatigue, but he is well. He is in physical therapy right now 3 times a week for his left arm and hand. According to Kevin, his pt uses several wrestling moves on him. :) But he has great improvement with mobility and he does admit "no pain, no gain". I figure it took him 9 months to get to this point, its going to take 9 months for him to get back to where he was physically. Next MRI is at the end of this month. He has made great progress, even though it has been slow, its been good to see steady improvement.

I get on here at times hoping to find someone similar, like you, who is a head of my husband and maybe I will see where I can look forward to this or that (good ). I hope and pray you are well and getting better and better and that the beast is gone.

Take Care
Kelly

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