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 Post subject: Radio-static Surgery
PostPosted: Tue Sep 01, 2009 4:20 pm 
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Location: Perth
I'm glad I've found this site. My husband was dx with a oligoglioma grade 2 in 2000, 4 months after our second child was born. We were told after the operation that the tumor would probably grow back in 15 years, if lucky. We were'nt that lucky, it grew back in 17 months. After the 2nd operation, he had radiation treatment over many weeks from memory (it's all of a blur as I had two very young kids etc).
The tumor started to regrow bank in 2006 and the radiation oncologist suggested a course of temodar 7days on 21 days rest for six months. This treatment stop the tumor from growing until 2008 when he had to have it resected again for the third time. The tumor is now a grade 3 anaplastic astrocytoma. 4 weeks after the operation we started temodar at a high does for 7 days on and 7 days rest. The last MRI on 1 August 2009 unfortunately shows that the tumor has started to regrow slightly. Now we are on temodar 120g combined with a low dose of procarbine for 21 days on and 7 days off. We saw the radiation oncologist last week and he suggested that there is a possibility of radio-static surgery. This was confirmed by our neurosurgeon yesterday as the best option at the moment. The downside is that he could has permanent stroke like symptions as the tumor is near the motor cortex.

My question, has any one else had radio-static surgery and suffered any side effect and were the side effects permanent....


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PostPosted: Tue Sep 01, 2009 5:29 pm 
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Your husband sounds like he is receiving a good standard of care; not always guaranteed. His treatment is in line with what I would expect. After three resections it is fortunate that he doesn't already have these symptoms.

If he had the 1p 19q loss of heterogosity (LOH), most oligodendrogliomas do (OG), then a 10 or more years of stable tumour is not out of the question. Unfortunately, this prognosis is not the case in around 20% of low grade OG.

I haven't had stereostatic radiosurgery (SR), but I do have hemiparysis (stroke like semi paralysis down my right side). While this was unexpected, it is still improving 2 years later; mainly my walking, I still type lefthanded only.

There was a 30% probability while his tumour was low grade that it would not become anaplastic. Now that it is high grade and continuing to regrow, the chances are decreased that his prognosis will be good. If I was in this position I would take the risk, in fact it is likely to a matter of time before I face similar choices.

I want to do everything I can to improve my chances. My daughter was born about 2 months after my diagnosis. Part of this improvement is about trying to get clean scans and no regrowth. While he has tumour remaining, like me, the chances are lower.

Try to remain positive and please keep us up to date on his progress.


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 Post subject:
PostPosted: Sun Sep 20, 2009 1:26 am 
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Obviously I didn't suffered any side effect because i never had a radio-static surgery. but i found this related on the radio-static surgery:

Using the isolated forearm technique (IFT) to determine if patients known to be unresponsive to commands during general anaesthesia with nitrous oxide, halothane and neuromuscular blocking agents had any evidence of explicit or implicit recall. Two groups of women, studied in a single-blind sequential block design, heard different tapes, either a command and information tape (n = 34) or radio static (n = 34), throughout surgery. Four women (two radio static, two command). Conclude that during light general anaesthesia with nitrous oxide, halothane and atracurium, patients had neither explicit nor implicit memory for information presented during a period when they are known to be unresponsive to.



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PostPosted: Mon Oct 26, 2009 3:21 pm 
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Location: Perth
We just don't seem to have any luck at the moment.

Just had a meeting with the Radiation Oncologist to get the results for the latest MRI.
My husbands tumor has spread and now he can't have the radiostatic surgery, which was a possibility 3 months ago. The next option is to have more radiation, even though he has had the text book dose of life time radiation. My husband looks healthy, so the oncologist is willing to give it a go.

We have a meeting with the neurosurgeon early next week. If he decides to operate again, then the radiation treatment will not happen.

Has any one else had additional radiation over the supposed life time radiation limit?

The current chemo treatment is not working. We see the Medicine Oncologist early next week as well.

Not sure what I'm going to tell the kids (11 and 9 Years old). They know dad is sick, but they have no idea of the gravity of the situtation.


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PostPosted: Wed Jun 01, 2011 11:39 am 
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One of my friend too was suffering from the brain tumor. Same like your husband his surgeon advised him for the radio static surgery,his family too was worried about the side effects of that surgery but unfortunately his tumor regrowed and he was treated with high radiations and now he is stable and seems to be ok. I too suggest you that there are chances of becoming stable when treated with high radiation.


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PostPosted: Wed Jun 01, 2011 6:03 pm 
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Joined: Tue Sep 01, 2009 2:56 pm
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Location: Perth
Hi Katlyn

Thank you for your information on radiation.

Unfortunately, my husband passed away on 12 June 2010. I still miss him deeply and still coming to terms with life with out him. I managed to keep him home, which was the best thing for all the family. Our kids don't mention him or want to go to the cemetry. I talk about him to them when I find the opportunity. He will always be remembered. I hope that one day, they will find the strength to visit him.

We live in Perth, Western Australia, there is a service called Silver Chain that supplies carer, home nursing visits etc. They were wonderful, but unfortunately there is a cap on the hours available for pallitive care, I was not told about this. A few weeks before he died, the Silver Chain administration decided to take away the home care as we used our allocation of hours. Just another stress on top of a very stressful period. The carers couldn't believe what they did to us. I wrote letter to the Minister for Health and the local parliament representative, which was a waste of time. I'm still angry about the situtation they put us in. I won't go on, obviously I'm still bitter.

Deanne


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 Post subject:
PostPosted: Thu Jun 02, 2011 8:45 am 
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Location: Australia
Hi Deanne,

Sorry for your loss. I am glad he was at home surrounded by love.

I can understand your bitterness about what sounds like otherwise a potentially great service.

We don't usually don't get to choose when we go, but the how makes a difference. It does take some extra work from our loved ones but I believe that your husband would have appreciated it.

Thanks for sharing,
Ken.


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