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Help me ask the right questions

AshleyWF's picture
AshleyWF
Posts: 46
Joined: Aug 2011

I had started a thread pre surgery asking questions about my boyfriend’s cancer which was diagnosed as Anaplastic Astotyoma.

He has now completed surgery, pathology came back grade 2 oligodendroglioma. After a scan and seeing the oncologist, he informed us this cancer has started to expand to the right hand side of his brain which is inoperable. We were told however to take comfort in the fact that this is a slow growing tumour.
He had blood work done and we were told they are now doing genetic testing. We have another appointment on the 30th where they will discuss what they believe are the best treatment options for him.

Jordan is 29 years old, completely healthy prior to all this. He had been having pretty severe headaches, which lead us to this point. His tumour was located on the left Parietal Lobe. With Surgery complete now, you would never know a thing was wrong with him. It’s hard to stay focused and realize we do have quite the fight ahead of us.

I was hoping before we return to the cancer clinic, people on here would be able to help answer some questions I will be taking, as well as add some questions I may want to ask!

My list so far is as follows:

What symptoms would we expect if the tumour expanded? What are we to look for from this point on?

Is it possible to do vaccine trials (I was told this is where a vaccine is created from the tumour that attacks and kills the cancer cells that remain)

Was he tested for IDH1 mutations? (Is it true that people with this gene mutation usually have a better outcome?)

What are the chances of radiation necrosis? Delirium? Is it true that radiation with this type of tumour may not benefit the patients?

I have read and heard that this type of cancer is more chemo sensitive? What is the difference between Temodar and PCV?

Was he tested for 1p-19q deletion? Is it true that this is a good prognostic factor, and means the tumour will have a much greater response to chemo treatment?

Is there a recurrence rate?

Is there a diet plan that will help him through this? Book recommendations?

I do have more, but they are more on a personal level. If anyone thinks there is anything else I should be asking, your response would be greatly appreciated.

Fingers crossed and praying!

Ashley

HopeLoveFaith516
Posts: 9
Joined: Jul 2011

Ashley,
I just posted a new discussion topic about ISORAY's GliaSite treatment. It was just approved by the FDA on 9/12. Ask your doctor about it...if he/she doesn't know, check out ISORAY's website and find a doctor/hospital that does know. Your boyfriend is young and you are smart to check out all the treatment options before deciding which one is the best option for you. Be proactive! and be his best advocate. He needs you to be his eyes and ears. Good luck to both of you and I'll say a special prayer for you.

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