Brain Tumour Survivor

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 Post subject: great
PostPosted: Sat Dec 26, 2009 8:02 pm 
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Such Great news I hope you had a wonderful xmas with your family.
Stacy


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PostPosted: Wed Dec 30, 2009 3:51 pm 
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Thanks everyone - as I'm sure you would understand, Christmas 2009 was the best Christmas of my life -- obviously no one in their right mind, would want to go through the experience we're going through, but probably for the first time in my life, I understand (aside from GBM4) how blessed I've been ( don't worry, I'm not becoming an evangelical Christian, but "blessed" is the right word.. It took a bloody brain tumour... Well the positive side is that I've learnt my lesson, and I'm alive, and DAMN THE STASTISTICS!

Keep well everyone.


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 Post subject: damn the stats
PostPosted: Wed Dec 30, 2009 7:34 pm 
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Damn The Statistics,
There is such strength in those words, I feel strong like a warrior when i read them!!! Yes I too had a fun Xmas and thought I was blessed just to be there enjoying my family and marveled at how precious those special moments are in life!!!! HappyNew Year to all.Have a good one Morpheus.

Stacy


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PostPosted: Wed Dec 30, 2009 8:58 pm 
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Glad you both had a great Christmas!

I don't know if you have seen the documentary Man Vs Wild on SBS, but I found a quote very interesting in this week's episode. He was talking about what separates those who survive in desparate survival situations. This is a guy who climbed Everest and knows how to survive. He said that you can have all the skills in the world, but what it really comes down to is remaining positive and the determination to succeed. That's just like cancer I thought, in survival situations why do some people die within 100m of the car park while others survive seemingly impossible odds?

We know the answer and its summed up in the determination in the statement - damn the statistics :).


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PostPosted: Wed Jan 27, 2010 8:34 am 
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Just for anyone following the trial-another odd thing happened. Virtually every hair follicle on my head was zapped by radiation (making me almost completely bald - much to the surprise of the radio oncologist and the clinical trial staff. It's grown back now, but ground zero is still not quite right. I


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 Post subject: MRI #3
PostPosted: Thu Mar 04, 2010 10:43 am 
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MRI #3 today (7mths from diagnosis). Looked good. Still some swelling in the cavity area (Dr thinks caused by chemo), but otherwise clear. Functioning well, just getting tired, but able to get through most days by taking a break for mediation or a nap.


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PostPosted: Thu Mar 04, 2010 11:45 am 
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Pleased to hear you are travelling well. I thought my hair would fall out with chemo and kept it short after the operation. I was lucky and eventually decided to grow it back.

Good news the scan is still clear. Understand the need for naps :).


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PostPosted: Fri Apr 30, 2010 9:38 am 
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Nine months out, early days (and approaching the steep part of the gradient), I know, but another good scan "no change, and nothing new appearing". Cognitive improvements mean that I'm back to about 75% workload, and I have no interest in that extra 25%. Today Technically last day (ie day 28) of cycle 6 of Temodol. Still have a numb left foot, and sometimes I stumble around a bit, but that's been getting better. Other technical stuff I'd prefer not to post in public (as this is the Avaglio trial), so DM in you want more detail. Oh, and DAMN THE STATISTICS.


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 Post subject:
PostPosted: Thu Jun 03, 2010 12:05 pm 
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hi Morpheus,
Havent heard from you for some time, just wondering how you are doing?
Stacy


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 Post subject:
PostPosted: Thu Jun 03, 2010 12:46 pm 
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Hey Staci, I have been meaning to get in touch you to see how you were going -- but thank you for beating me.

The funny thing is that even during a time like this the months flick by (wow it's June 2010 - i remember a time when I had problems thinking about dates later than November 2009. Still early days, but as I've said before, you've gotto to get through these early days.

I'm doing well -- just going through the stuff that everyone goes through, with a bit of extra mystery as a result of being in a clinical trial.


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 Post subject: days slip by
PostPosted: Sat Jun 05, 2010 11:58 am 
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Hi Morpheus,
Hi Glad to hear your doing well, yes the months do slip by, it will be 2 years on july 8th that i first had my big grand mal, wow i have good days , bad days, then the ones i wish to forget but all in all somehow finding the place in my heart that im comfortable with. Going down for MRI, Neurologist and Neurosurgeon this week, catching up with some former patient buddies for lunch.
Regards Stacy


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 Post subject:
PostPosted: Sun Jun 06, 2010 4:15 am 
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All the best for that MRI Stacy!


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 Post subject: Another 9 weeks
PostPosted: Tue Jun 29, 2010 11:11 am 
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Another 9 weeks pass by, and another MRI. The radiologist says "no change" and my medical oncologist believes the inflammation has reduced. I'll talk to my radio oncologist tomorrow for his view (he seems to be the scan guru).

Two months ago I "sacked" my neurosurgeon. I went in to see him so that I could wean off my Dilantin (he originally prescribed it), but after seeing my scans he declared there had been progression. Here are my notes from the incident:

Written by me on the 7/5/10 from notes made on 6/5/10

At 11 am on Thursday the 6/5/10 I had a meeting with neurosurgeon Dr XXXX at his office in YYYYYYY in order to be weaned off Dilantin (he initially prescribed it)

After reviewing my latest scan, without reference to previous scans, or to Dr AAAA or Dr BBBB, Dr XXXX informed me that there was enhancement, and that the area of interest had grown since surgery. He informed me that surgery would be necessary, and that it would be wise to have surgery while I was still in good condition, and could benefit from surgery.

He said I appeared to be in much better condition than the MRI indicated.

He was of the opinion that the trial drug used in the Avaglio trial was covering up the progression, and that he would have no hesitation in pulling me out of the trial in order to do an operation.

When I asked him about pseudo progression, he replied “What is pseudo progression?” From what I understood he was trying to say, he was implying that progression and pseudo progression were the same thing.

He dismissed the radiographer's "no change" report saying “apparently no change”. He expressed frustration about being out of the loop and said that while Dr BBBB had patient (debrief?)meetings, they were too hard to get to.

I said “You’re scaring the shit out of me, I thought I was doing OK”

He said the following:

“I’m sorry to be the harbinger of bad news”
“I like Dr AAAA and Dr BBBB, but they have their own agendas.”

He indicated these agendas were related to clinical trials, which may not be in the best interest of patients.

I left, but forgot to get the instructions about weaning off Dilantin, so the secretary went and got Dr Curtis who wrote down instructions for weaning off my current dose of Dilantin.

On a previous visit (following up from surgery) Dr XXXX made an overture in relation to his religious beliefs, which I declined, and made me feel very uncomfortable.

He instructed me to come back after I’d had the next MRI, and that he would like to monitor the situation more carefully.

As I was leaving he asked to keep the CD containing the latest MRI scans. I gave it to him.

Personal comment I don't need this shit; I've got enough on my plate without having to deal with some guy's ego problems.

The moral of the story is that even though you're a brain tumour patient, you still need to keep your wits about you - people at large are still as screwed up as they were before you had a brain tumour.

Sad thing is, that technically, this guy is a great surgeon. I just hope one day he becomes a great doctor.


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 Post subject:
PostPosted: Tue Jun 29, 2010 11:13 am 
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This is the note I sent the surgeon:

While I appreciate your fine service to this date, I will no longer require your services. Usually in this situation (when dealing with a service provider) I tend not give reasons (as no benefit can arise), but because our relation has been rather special, I do feel it appropriate to give you some insight into why I have made this decision.

Dr AAAA and Dr BBBB are world-class oncologists, and yesterday, you made it pretty clear that you did not have a healthy working relationship with them. From my perspective, I need everyone kind enough to be caring for me to be working as a team.

Yesterday, you also drew conclusions without all the data (past scans), without consulting the oncologists who are treating me, and dismissed data out of hand (the radiologist’s report).

I wish you the very best with your endeavours.


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 Post subject:
PostPosted: Tue Jun 29, 2010 11:58 am 
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Congratulations! I sacked my original neurologist, although not in writing I just chose not to go back.

If you felt it was the right thing to do, then it was the right thing to do! Taking control is an important part of this disease. Also taking responsibility for decisions - we may have had part of our brains removed but we have not lost our minds!

One thing to note. Out of the 14 MRI scans I have had so far only one of the radiologists reports has been correct. 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). Radiologists have incorrectly identified everything from parts of the brain to location of the tumour. I am of course hoping that you have received better reports.

You are right that all the past scans and data must form part of any evaluation. My local neurosurgeon favours symptoms over scans. My opinion is that both symptoms and scans together give a more accurate picture.

Well done on doing what you feel is right. We may not be neurosurgeons but we know logic and hopefully enough about science to smell a rat. Many years ago I went to see a doctor about a minor complaint. From what he said I worked out what was wrong and why he was incorrect.


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