Brain Tumour Survivor

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 Post subject: Stroke... NOT Recurrence
PostPosted: Wed Sep 07, 2005 8:00 pm 
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Location: Melbourne
As many here know, Jane has been rotating through a number of Chemo's to try and limit the chance of Chemo resistance. The big risk in doing this is that you may have recurrence whenever you switch through a Chemo that doesn't work on your particular tumour. Sadly, and with heavy hand, I write that Jane has had recurrence while she has been on CPT-11 and there is now something on the scan that shouldn't be there, it could be either radio necrosis (dead tissue related to the radiotherapy) or tumour recurrence, either way Jane is in a great deal of trouble as the area effected is the Pons, which is virtually inoperable by hand or stereotactic radiotherapy and is regarded by many as the "soul" of the brain. We were hoping that any recurrence that might occur would be in the original tumour bed (left Temporal) as she has a lot of space there, but alas not.

Jane will go back to Temodal + Procarbazine or Topotecan or Caelyx, all of which have proved effective in the past, plus Avastin, starting this Friday.


Last edited by Ross Symons on Thu Oct 06, 2005 1:57 am, edited 2 times in total.

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 Post subject:
PostPosted: Sat Sep 10, 2005 2:15 pm 
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Jane has had an infusion of Avastin (Bevacizumab) on Friday (September 9). By The afternoon she was unconscious and deteriorating quite rapidly. Dexamethasone (8mg) was administered to ease pressure and wake her up, and thankfully it appears to be working as she woke up on Friday night.

At the moment Jane has no ability to take anything via the mouth so no chemo and supplements can be administered, hopefully that will change today. She will go back onto Temodal 100mg day + Procarbazine 100mg Day.

We are seeking surgical opinions from various surgeons and are also looking at stereotactic radiotherapy. Jane will have an MRS on Tuesday to help ascertain whether this will be available to her.

We are now over the initial shock of this recurrence and I have conformation from Jane that she wants to fight on. Despite the bleak odds of success, we have renewed hope.
***
As a note to those deciding whether to cease chemotherapy as they might think the "coast is clear", Jane's case is a warning that even after seven months of entirely clear and clean scans (reports one month ago said "ongoing complete response"), without treatment of the disease, recurrence can occur very quickly.


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 Post subject: radio necrosis
PostPosted: Mon Sep 12, 2005 9:33 am 
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Location: Melbourne
it appears that the new blips are radio necrosis (according to the surgeon).

has anyone here had experience with this, ie hyperbaric's etc.?

cheers

Ross
(Mobile)


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 Post subject:
PostPosted: Wed Sep 14, 2005 2:54 pm 
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The good news is that there is no tumour, the worst and saddest news is that Jane has suffered multiple strokes (infarcts) due to radiotherapy damage of supporting supply tissue. Apparently Jane is the first person at the "Peter Mac" to have this occur in the Pons when being treated for the Left Temporal region.

Any function that has been lost will be permanent as the brain tissue has died (necrosis). The long term prognosis is unknown as there is no treatment known to stop radionecrosis. That said, I have purchased a number of supplements that Jeanne M. Wallace has indicated support brain function and will give those to Jane from today.

The Dexamethasone will be stopped as it has no efficacy for the current situation.


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 Post subject:
PostPosted: Fri Sep 16, 2005 2:41 pm 
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I have given Jane copious amounts of Acetyl-L-Carnitine (2000mg morning and night) and she has responded well. She is much brighter and is recovering a lot faster than we expected (well, we actually expected no recovery at all).

We don't want to get to far ahead of ourselves but there is now talk of occupational and physiotherapy.

We decided to wean Jane's Dex down rather than cut it abruptly. She has had 32mg down to 24mg, tomorrow she will go to 16mg.


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 Post subject:
PostPosted: Thu Oct 06, 2005 1:59 am 
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Jane's recent PET scan shows that there is no residual or active tumour present, the recent events are almost undoubtedly the result of a stroke.


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 Post subject:
PostPosted: Fri Oct 21, 2005 8:41 am 
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An MRI confirms that Jane has widespread multifocal radionecrosis but no tumour.

The question of the standard radiotherapy dose of 60 grays when adjunctively on Temodal needs to be investigated. As the radiotherapy effect is enhanced by the Temodal there is apparently greater risk of damage to brain support structures and pulmonary systems, and therefore a greater risk of brain injury due to radionecrosis/stroke.


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