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High grade glioma: waiting for remainder of molecular testing

Brain Tumor | Last Active: Jun 3 5:42pm | Replies (34)
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@colleenyoung

@raphaela2025, do you have a treatment plan now? What are the next steps for you? How are you doing?

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Replies to "@raphaela2025, do you have a treatment plan now? What are the next steps for you? How..."
raphaela2025 | @raphaela2025 | May 16 10:02am

Thanks for asking, Colleen. Where I'm at now is talking with a neuro-oncologist across the country who knows my neuro-oncologist.

I was told by the PA in charge of chemotherapy that I would need 24/7 help at some point. I do not want to do Temodar and Radiation. I'm looking into other treatment like TTF (Optune). The problem is that my Medicare will not pay for alternative treatments until I do the standard treatment. I am not going to put myself through that and possible not having a good quality of life. I woke up this morning more exhausted than ever. I don't have the energy to go anywhere, but I may feel better if I do.

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raphaela2025 | @raphaela2025 | May 28 10:04am

Hi Colleen,

University of Michigan Hospital was a bust. I have an appt at Mayo--Rochester location--on June 12. I am on the waitlist.

The headaches are getting worse, so I started Dexamethasone today. My primar issue at the moment is just getting out of the house because I can't stop thinking about the tumor.

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