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PostPosted: Wed Apr 10, 2013 8:29 pm 
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Hi,

I am just starting out on the cancer journey with the love of my life, my marvellous partner, 40 years old and until a few weeks ago very fit and well.

He suffered tonic clonic seizures during the night of 6 March 2013.

The seizures were severe and prolonged, and he remained in a confused state for over 2 days. He didn't recognise me, and didn't know where he was. Initially we were told he had suffered a stroke.

CT scan was interpreted 3 different ways by 3 different Dr's, and I was told he had/hadn't had a brain bleed, had/hadn't developed a clot, should/shouldn't be started on aspirin etc. This went on for 2 days.

MRI 8 March 2013 revealed a 3cm by 3cm diffuse tumour, left frontal, not crossing the midline - at the time suspected low grade glioma, however the 'low grade' did not turn out to be the case. Not sure why they even thought it was low grade, as when we look at the MRI at home on the laptop, there is an obvious area of ring enhancement! :(

Partial resection by awake craniotomy 13 March 2013 Greenslopes Hospital, Brisbane. The hospital and staff were excellent and the surgery itself was without complications and healed beautifully.

Discharged from hospital Sunday 17 March 2013. My partner looks and feels completely normal, except for some mild fatigue and a shiny new scar.

Diagnosed with Grade III Anaplastic Oligodendroglioma with 1p and 19q loss, 18 March 2013.

We had one follow up appointment with the neurosurgeon, who wouldn't be drawn on life expectancy, and seems very reluctant to give any information or opinion at all about the future, other than to indicate that radiotherapy should be undertaken.

The neurosurgeon apparently wrote to the referring Dr advising him to refer my partner for RT - but that Dr is on holidays for several weeks.

We have no further follow up appointments with the neurosurgeon at this stage and are feeling pretty adrift. The only information we have on anaplastic gliomas, treatment and prognosis is what we have found on the internet.

The neurosurgeon was very negative about chemotherapy and more or less indicated it was a waste of time, although all of the information on the internet seems to indicate otherwise, particularly with 1p and 19q loss.

As newcomers to the journey, we are at the information gathering stage, and trying to figure out what the next step is.
Until we manage to get an oncology consultation, we really don't know what treatment is planned, however there seems to be quite some controversy in relation to whether or not early RT is appropriate for Oligos.

Can anyone comment on the pros and cons of early RT and/or Oligos in general?

Thank you in advance for any information or advice.

Cheers,

Jen


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PostPosted: Thu Apr 11, 2013 3:17 pm 
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Hi Jen

I feel for your situation. Unfortunately it is too common a place to find ourselves in.

It is imperative to deal with doctors who only deal with brain tumours.

I have 1 day of RT left after 6 1/2 weeks. I have found you can't always know if the doctors are, but its easier to know if they are wrong.

Doctors who are not experienced in BT's are always pessimistic - they do not consider the bigger picture. 1p and 19q is a big factor!

So I have had Temodal (chemo) and RT. For my oligoastrocytoma grade 2/3, they have held things at bay or provided small improvements at times for nearly 6 years.

Cheers Ken


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PostPosted: Thu Apr 11, 2013 8:08 pm 
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Hi Ken,

Thank you very much for your reply.

Not sure of your location - I have been advised that Temodar is not covered by the PBS in Australia, only PCV. I am keen for Temodar rather than PCV, because of the poor tolerance and cumulative toxicity of the latter. As there has been no oncologist consultation yet, I am having difficulty identifying the likely dosing and therefore cost of Temodar.

What was the timing of your RT and chemo?

It is interesting that your grade is 2/3. Is that grading based on observation of the tumour behaviour, or histopathological grading or both? Was your tumour originally graded 2/3 or has that changed over time? I am assuming that you do not have factors such as PTEN mutation, 10q loss, EGFR amplification, or CDKN2A deletion that would lead to a definite grade 3 conclusion.

The neurosurgeon said that he believed he has "probably totally removed" the grade 3 component of my partner's tumour, something I am extremely skeptical about given the diffusely infiltrating nature of these wretched things. Seemed like a somewhat silly thing to even say :S

I only know the 1p and 19q status by peering briefly over the surgeon's shoulder at the histopathology report, which said something along the lines of 1p and 19q loss mediated by (???????). Now I'm furious at myself for not absorbing what the (???????) was.... because it also makes a huge difference. I suspect it was CDKN2A deletion, which is a prognostic factor pointing to reduced survival time regardless of 1p and 19q co deletion. Driving myself nuts - I want that histopathology report dammit!

Sorry for all the personal questions. In the absence of any real medical guidance I have been wearing google out and reading too many outdated research papers and forum posts trying to get an idea of exactly what should probably be happening now, but isn't!!

Kind regards,

Jen


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PostPosted: Fri Apr 12, 2013 9:06 pm 
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Hi Jen

I can only type with one hand because of hemiparesis, so I apologise if my relies are brief.

My understanding is Temodar may be prescribed for grade 3. We had to pay first time. Neuro-onogolist and neurosurgeon said they that it had some 3 first time, but sample showed grade 2. This time they were able to argue progression = grade 3.

2nd opinions are invaluable. I am sure you will find another specialist who will write you a script in Brisbane. If you don't know any trying phoning BTAA. They had a forum there recently.

As far as RT goes my mind was put at ease reading Martin Stein article on neuro-cognitive effects and dosage.

Cheers Ken


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PostPosted: Sat Apr 20, 2013 12:36 pm 
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So it turns out that PCV is not covered by the pbs after all.

To have any chemo at all, we have to pay up front, or travel over the great dividing range to Brisbane for all the chemo.

$800 per cycle for PCV, huge $$$ for Temodar, or pretty much go home and (according to the oncologist) die in ~ 2 years.

We paid the $800 for PCV. Not big dollars in the scheme of things - we can afford that and I guess I shouldn't whine, but what happens if people can't pay?

Sorry for the rant.

End


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PostPosted: Wed May 08, 2013 1:25 pm 
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Hi Jen

hope that everything is going ok. We would welcome an update.

For an Oligo a palliative dosage of radiotherapy should be fine, however consult the radio-oncologist.

As for the chemo, I agree with the original opinion that it won't change much. Chemo I believe works better if you have an astro component too.

As unfair as the whole situation seems, our neurosurgeon 6 years ago told us the 1p/19q co-deletion would be an important factor in my overall survival. So far he is right :-)

Cheers Ken


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PostPosted: Thu May 09, 2013 7:25 pm 
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Hi Ken,

How are you travelling?

My partner is well into cycle 1 of 4 of PCV chemo, and tolerating it very well. So far he has only had a couple days of vomiting, and some mild peripheral neuropathy. He feels so well that he is able to work from home part time.

Had a post op MRI ~3 weeks ago, but with no follow up appointments and no communication from the Neuro, we have no idea if there is anything significant going on.
We have the disc and had a look at the images - by the look of the empty space left, the surgeon went directly to the highest grade area and removed it along with about half the total original tumour volume.
There is an enhancing ring surrounding the area where the highest grade tumour was - guessing it's probably the result of irritated tissue and blood vessels rather than progression, because there was a lot of vascular proliferation in the high grade tumour tissue.
Seeing the GP soon to get a referral to a new Neuro who might give a damn.

Take care of you all.

Kind regards

Jen


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PostPosted: Sat May 11, 2013 9:13 am 
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Hi Jen

I'm doing very well thanks.

Communication is so under rated. We have had similar experiences.

So glad you are getting another referral :-)

Cheers Ken


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PostPosted: Wed Mar 12, 2014 8:16 am 
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Hi All,

Firstly I should say that this is the first time I have EVER posted something on a forum but reading your story Jen, I felt like I had to because my story is so similar.....

My husband, 41 years old, was suffering from a constant headache. We had just had our second child (she was six weeks old at the time- we also have a four year old). After being told by a neurologist that it was probably stress and tension and sent away he went to another doctor who ordered him a scan. They operated on the 15/07/14 and he was diagnosed with an Oligodendroglioma grade 3. They were only able to remove 90% of the tumor. He then did six weeks of RT which, according to the following MRI, was highly successful. The radio greatly reduced the size - although there are still indications of some remaining tumor. He is currently waiting to start his third cycle of PCV. Unfortunately he only has 19q deletion. I am trying to find more information about what this means but I can only really find things talking about the 1p/19q co-deletion. I understand that it is extremely positive to have both but they don´t say much about having only one of the two. The doctors haven´t given any indication of prognosis.

My husband is doing very well. He walked away from the operation his normal self (apart from the scar) and is tolerating the chemo fairly well (although he is physically exhausted).

I am a Brisbane girl living in spain. My husband is spanish and is being treated in Barcelona so I can´t really contribute to the conversation in regards to health care/ chemo treatment cost etc in Australia.

I should also add that my husband´s sister passed away just two years ago from a brain tumor. She was only 37 years old. However she had an astrocytoma grade 3 for which I believe the prognosis is much worse than the oligodendro. It is an interesting and tragic case of a brother and sister because their tumors were located in the same place (front right), however were different types. As you can imagine my husband´s diagnosis has been extra difficult for the whole family as the pain from the loss of my sister-in-law is still recent. It makes it difficult to remain positive at times.

Jen, are you a doctor or work in the medical field because it sounds like you know what you are talking about? I am not really not up with all the terms and names etc so please excuse any errors in that sense.

Anyway, I hope things are going well for you guys. What a crazy experience. The only thing to do is to try and stay optimistic and take things one day at a time.

Take care

Genina


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