Brain Tumour Survivor

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PostPosted: Tue Aug 26, 2008 6:24 am 
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Location: England
Lord above -they warned me it might morph into something worse and it has. My learning starts again. i am just about to learn about chemo temolozide and Radio : 6 wks Mon to Fri, every day, for starters. The Deansley Centre in Wolverhampton, all staff seem so nice. Can anyone give me any advice comment or :? Just need to communicate. Side effects? 49yr old fairly healthy girly.
Will it turn to a Grade 4 later? Any stats on this? I can take the truth and prefer it. ......Should i visit friends in Oz now?
Ho flippin Hum
Don't all be as glum as me I am just letting it out.
XXXX[


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PostPosted: Tue Aug 26, 2008 8:40 pm 
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Susannah,

You'd think that after 12 years, the darn nuisance would have the courtesy to keep at bay. Not the news you'd ever want to hear but life can be like that sometimes unfortunately.

The info below might give you an idea of grading an prognosis but that's controversial apparently. First a bit about the type of tumour you're talking about because it might not be clear to some from the abbreviation you've used.

Types: Gliomas are named after the three types of glial cells: astrocytomas are named after astrocytes, oligodendrogliomas after oligodendrocytes, and ependymomas after ependymal cells. Ependymomas are usually benign and lower grade. Glioblastoma multiforme (GBM) is very aggressive high grade form of glioma.

Oligodendroglioma
http://en.wikipedia.org/wiki/Oligodendroglioma
Histopathological Grading
The histopathologic grading of oligodendrogliomas is controversial. Currently the most commonly used grading schema is based on year 2007 World Health Organization (WHO) guidelines. Oligodendrogliomas are generally dichotomized into grade II (low grade) and grade III (high grade) tumors. The designation of grade III oligodendroglioma (high grade) generally subsumes the previous diagnoses of anaplastic or malignant oligodendroglioma.
Unfortunately, the WHO guidelines include subjective criteria in differentiating grade II and grade III tumors including the appreciation of “significant” hypercellularity and pleomorphism in the higher grade lesion. In addition, the presence of low mitotic activity, vascular proliferation and necrosis, including pseudopallisading necrosis are insufficient by themselves to elevate the grade of these tumors. This leads to inevitable interobserver variability in diagnosis by pathologists. The ultimate responsibility for making treatment decisions and interpretation of these diagnoses lies with the oncologist in consultation with the patient and their family.
It has been proposed that WHO guidelines should contain a category for grade IV oligodendrogliomas which essentially appear to be glial neoplasms with overwhelming features of glioblastoma multiforme (GBM) arising from known lower grade oligodendrogliomas or GBM with a significant proportion of oligodendroglial differentiation. The diagnostic ultility of this latter category is uncertain as these tumors may behave either like glioblastoma or grade III oligodendrogliomas. As such, this is an exceptionally unusual diagnosis.
The updated WHO guidelines published in 2007 recommends classifying such tumors for the time being as ‘glioblastoma with oligodendroglioma component’. [3] It remains to be established whether or not these tumors carry a better prognosis than standard glioblastomas.

Clinical Prognostic Factors and Survival
http://www.medscape.com/viewarticle/429338_8
In addition to the aforementioned resection-and histology-related aspects, other prognostic factors have been reported for oligodendroglial tumors. Age has been found to be one of the strongest independent predictors of survival.[35,71,74,92] Older age is associated with more aggressive tumor behavior and a worse prognosis, whereas in patients younger than age 40 to 45 years a significantly longer survival time has been documented.[9,12,45,58,63,71,74,93] The presence of a neurological deficit at the time of diagnosis has also been reported to predict a poor outcome.[9,12,22,91,92] In patients with low-grade oligodendrogliomas who present clinically with seizures and have no neurological deficits, a significantly better outcome has been reported than in those with raised intracranial pressure or neurological deficits.[9,12,34]
Other favorable features include location in the frontal lobe (which may relate to the extent of resection possible) and higher initial or postoperative functional performance status.[1,22,45,71] Additional studies are currently underway in which the authors may be able to confirm the validity of these clinical prognostic factors (H Engelhard, et al., unpublished data).
The survival times reported in recent studies are already significantly longer than those cited only a few years ago. In 2001 Henderson and Shaw[38] reported 5- and 10-year survival rates of 73% and 49%, respectively, for patients with Grade II oligodendroglioma. In 2000 Olson, et al.,[58] reported a median survival time of 16.7 years in their series of patients with oligodendroglioma and mixed glioma. The authors of other studies have published similar results.[2,34,48,63,68] Despite the information available, it is difficult to predict survival for the individual oligodendroglioma patient on clinical grounds, given the following factors: 1) earlier diagnosis and improved surveillance provided by MR imaging; 2) rapid evolution in treatment taking place; and 3) possibility of conversion to an anaplastic tumor that is refractory to all treatments…..(more via link above on molecular biology and tumor markers etc)


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PostPosted: Tue Aug 26, 2008 11:18 pm 
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Joined: Mon Mar 10, 2008 4:03 pm
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Location: Australia
I'm sorry that this has come back to you after all this time, it must be a shock.

Radio will just about rule out any further surgery, so some people save that for grade 4. You do have a pathology report - not just someone interpreting a scan? Have you had a further resection?

Fortunately with Temozolomide it can travel with you, although you may have to declare at customs. With DVTs and seizures I asked my sister to travel here. Talk to your doctor about it, but if you have your heart set on going it may pay to go sooner rather than later; hopefully you're feeling up to it after this round of treatment.

As I'm sure you remember, this disease can only be dealt with one step at a time. The aim is to improve step by step.

Most people tolerate temodal well, although not everyone does. I'm on a metronomic dosage, 100mg for 20 days. It is most likely to be the radio that will knock you around - potentially headaches, swelling, fatigue and necrosis.

I wish you all the very best.


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PostPosted: Fri Aug 29, 2008 5:04 am 
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Joined: Wed Apr 05, 2006 6:39 am
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Location: England
Mary and Kenobewan,
thank you for replying. I can't tell you what it meant just to have a reply but the info (read slowly) was great too. All of a sudden I am frightened for my life again and I seem to be silent with my prof, can't ask him in case it all gives me a panic attack. The psychological problems I had last time were gruesome. But, fight on I will, and stop to smell the roses along the way. Stuff of nightmares, my heart goes to all worse off and further down the trail than me and their loved and loving ones too..


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