Brain Tumour Survivor

A site dedicated to leading edge treatment for brain tumours
It is currently Sat Nov 25, 2017 6:03 am

All times are UTC + 10 hours




Post new topic Reply to topic  [ 9 posts ] 
Author Message
 Post subject: Another battle begins...
PostPosted: Sun Nov 23, 2008 9:20 am 
Offline
Registered User

Joined: Thu Oct 30, 2008 10:22 pm
Posts: 5
Location: Canberra
A brief recap for those who didn't catch our original post.

A little over three weeks ago, after a couple of weeks with a chronic headache, our sister Jo was diagnosed with a GBM IV, about the size of a golf ball between the frontal lobes, but more to the right hand side. She was told that the tumour was inoperable, and she might have as little as three months... The prognosis improved to about eight months after the MRI and biopsy results a few days later...

Jo lives in Adelaide and is approaching her 51st birthday. As fate would have it, almost five years ago to the day, our eldest brother was also diagnosed with a brain tumour, when he was just 52. As he was living in Sweden, and his wife was a nurse, we had very little to do with the medical side of his battle. I do remember being constantly bewildered by the fact that whenever we spoke to him there was no suggestion of there being any problem at all, but the medical reports were all depressingly negative. I think we all lived in a state of denial for much of the time—it was just too easy to think we were in the middle of some crazy, bad dream. Our brother was also an osteopath/naturopath, who had spent much of his time helping cancer patients, so we also thought the 'mainstream medical profession' was probably being overly pessimistic about his prognosis. Second time around, the reality is more stark.

Another of my brothers and I found this forum, a God-send, and the first message we took home was "Get a second opinion!". We were probably also lucky that Charlie Teo had been in the news a bit over recent months and that we had some professional connections in his direction. A GP friend of ours requested copies of the relevant reports from Adelaide and sent them to Charlie about 10 days ago. A call early last week had our sister in Sydney for an appointment and a second MRI on Friday, with the result that she is in surgery now, as I type, with the possibility of removing 95% of the tumour. I guess I could have waited a little longer to post this, but it's kind of a way of filling in the time while I wait—my brother is in Sydney with Jo.

According to Friday's MRI, it seems that the tumour hasn't done a great deal of growing since the last one (3 weeks ago). Jo has, however, been experiencing 'a weird head feeling' again, although this is relieved by steroids, food and mild exercise. She has also noticed some symptoms in her left leg and at the appointment on Friday Charlie detected early signs of the effect on the motor control of her left side. Apparently, there is a large cyst, associated with the tumour, that is full of fluid and it is this that appears to be creating most of the pressure.

In some respects we're thankful that the Adelaide crew were so tardy—Jo wasn't scheduled to start any form of treatment for at least two more weeks. In the event, this made Charlie's job much easier, and perhaps is the only reason he has been able to operate at all.

My brother and I have scoured the Net over the past couple of weeks, following the leads that some of you have provided, and for all your support we will be eternally grateful. Jo will meet with another oncologist, that Charlie has recommended, in Sydney on Wednesday, and has some other names now for referral in Adelaide. These are all people who have a positive attitude toward 'patient involvement' in selecting treatment options, and support the use of 'auxiliary' agents such as Avastin and nutritional supplements.

Another thing I have taken from all my reading is that the survivors win because they take control of the situation and fight. Unfortunately, if you let yourself be pushed around, you'll only be pushed in one direction, and that's not the one in which most people want to go...

I will post updates as they come to hand.


Last edited by Pete on Sun Nov 23, 2008 11:55 am, edited 1 time in total.

Top
 Profile  
 
 Post subject: Post-Op Update
PostPosted: Sun Nov 23, 2008 11:45 am 
Offline
Registered User

Joined: Thu Oct 30, 2008 10:22 pm
Posts: 5
Location: Canberra
The first step was a resounding success. Charlie reckons he got 99% of the tumour, without any apparent impact on any brain function—Jo's awake and wriggling her fingers and toes! He says the tumour will grow back—its now a case of controlling that process. But he can operate again if need be.

So tell me, how can it be that one group of doctors say that a tumour is inoperable, and another, in the same country, under the same medical system, successfully remove 99% of the very same tumour...? I'll join the chorus: "If you get a negative prognosis, or probably in any case, get a second opinion!"

On to the next stage...


Top
 Profile  
 
 Post subject:
PostPosted: Sun Nov 23, 2008 9:17 pm 
Offline
Registered User
User avatar

Joined: Mon Mar 10, 2008 4:03 pm
Posts: 18130
Location: Australia
Great news about Jo!

Treatments are more effective when there is less tumor. Charlie has said, 'expect the worst but hope for the best'. Effective treatment gives hope.

Experience and skill seem to be the two things in Charlie's favor. Its hard to beat that level of specialisation and knowledge in someone actively trying to win the race against brain tumors, if only there were more like him.

Good on you for getting that second opinion. Hey, I get three quotes if I'm getting a tradie ;).


Top
 Profile  
 
 Post subject: Another battle begins...
PostPosted: Mon Nov 24, 2008 10:04 am 
Offline
Registered User

Joined: Thu Oct 11, 2007 3:28 pm
Posts: 130
Location: Brisbane, Australia
Dear Pete
Glad you found us here! So sorry to hear about your Sis-Jo. I am so pleased she found her way to Charlie Teo. He is a most impressive man & surgeon. 99% debulking sounds pretty darn good to me, without deficits is even more fantastic!
I concur on yr bewilderment regards Jo's tumour being inoperable. My Bro-Mark-was told the same when he was diagnosed. Although, I believe there was some debulking done at the initial biopsy? They began treating him with rads & chemo. After 4.5 wks his condition deteriorated so rapidly he was almost immobile & suffering seizures. The neurosurgeon scheduled a craniotomy. We were so pleased! Subsequently, Mark had 4 craniotomies. His tumour was also R side/brain stem tumour. He had similar sensations to Jo down his L leg & arm from the pressure of the tumour on his motor skills. His tumour was only small at diagnosis .5mm but was causing symptoms early on.
My Bro had a cyst surrounding his tumour which was found earlier this year. It eventually disappeared after a couple of months but it was causing side effects for him. Steroids are a valuable drug in the treatment of BT's but they can & do have nasty side effects. Unfortunately, a necessary evil in Jo's case.
I found this forum & the internet invaluable to me during our Mark's battle with his BT. It was & still is an important & rewarding part of my life to come here & keep updated with other folk who are on the same journey. Any questions you have, information you can offer & a good "rant & rave" are all acceptable on our forum. Please don't be a stranger here.
Thinking of you & yours,
Cheers, Angie.


Top
 Profile  
 
PostPosted: Tue Jan 06, 2009 9:16 am 
Offline
Registered User
User avatar

Joined: Tue May 02, 2006 3:33 pm
Posts: 177
Location: elliott heads, QLD
[quote="Pete"]
Another thing I have taken from all my reading is that the survivors win because they take control of the situation and fight. Unfortunately, if you let yourself be pushed around, you'll only be pushed in one direction, and that's not the one in which most people want to go...quote]

SO, so true, it is sad that we need to fight at times for what we as a human being are entitled to, we have been there done that, staff and doc. are great, it is the health system.
Best wishes to you and remain positive


Top
 Profile  
 
 Post subject:
PostPosted: Tue Mar 10, 2009 10:39 pm 
Offline
Registered User

Joined: Mon Sep 17, 2007 11:09 am
Posts: 9
Hi Pete

How is Jo doing?
I too have a brain tumor that was said to be inoperable GBM IV
so we went off to Sydney to see a Dr Shivalingam at RPA in Nov 08 and she removed over 95% of the nasty little thing (9cm x 6cm) I have been fighting this tumor (started as grade II astrocytoma) for nearly 4 years now
I have weakness in my left arm and leg but hey who cares - I'm alive - and it looks like I do get to see my kids grow up after all
That's something that my dr's in Brisbane didn't was going to happen!

kind regards
Toni


Top
 Profile  
 
 Post subject:
PostPosted: Tue Mar 24, 2009 3:16 pm 
Offline
Registered User

Joined: Thu Feb 12, 2009 4:52 pm
Posts: 62
Hi ,
Yes it is amazing that doctors can view the same thing differently. My MRI yesterday shows "enhancement" and doctor insists it is the return of cancer. We insisted on having a PET scan done to get a definite answer since last time he said that we flew to Sydney only to have Dr Brinda Shivalingham say she thought it was pseudoprogression and that we should have a PET scan. She was right! We now are discussing our options should the PET show progression. Chemo which is being offered in Brisbane versus surgery which I need to go to Sydney for.
Wendy


Top
 Profile  
 
 Post subject:
PostPosted: Mon Mar 30, 2009 9:18 pm 
Offline
Registered User

Joined: Thu Feb 12, 2009 4:52 pm
Posts: 62
PET scan shows no uptake in the area of the suspect legion. I am not sure of the explaination but there must be one. Yet again things are not as bad as suggested. I am waiting for my oncologist to accept that all BT patients are different and although the statistics are poor we need to be given hope so we can keep on going forwards. This is the third time we have been told the cancer is back.
I am very glad I did not cancel our holiday.
Love
Wendy


Top
 Profile  
 
 Post subject: Update (long overdue)
PostPosted: Fri Apr 08, 2011 3:36 pm 
Offline
Registered User

Joined: Thu Oct 30, 2008 10:22 pm
Posts: 5
Location: Canberra
I just received an update on another thread to which I had contributed, so while I was here I thought I'd post an update.

Jo moved over to the NSW north coast, and now leads a much more relaxed lifestyle. She doesn't talk about the tumour at all—maybe that's denial, maybe it's just getting on with her life. The tumor returned last year, and Charlie debulked it, again without deficits. At the moment, things appear to be OK, and life is rolling along as normally as it can.


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 9 posts ] 

All times are UTC + 10 hours


Who is online

Users browsing this forum: No registered users and 1 guest


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
cron
Powered by phpBB® Forum Software © phpBB Group
[ Time : 0.044s | 15 Queries | GZIP : Off ]