High grade glioma: waiting for remainder of molecular testing

Welcome. How do you know it's high grade without your complete pathology report? I'm sorry to hear you can no longer drive or work. I suggest finding a hobby to take up some of that time and to keep your mind busy. We can dwell in this disease if we are not careful.

Thank you!

The first pathology report stated that I had a high grade glioma.

The methylation test is important. If positive you may respond to TMZ. A very tolerable chemotherapy option. I have Ben on it five days a month for a year now. Other than occasionally having nausea I find it very tolerable. Did get a rash on my back from it. It was not a systemic allergy and responded well to steroid cream.

Ugh! I'm so sorry. I have a grade 3.

Even some tumors that are not methylated respond to chemotherapy for reasons not yet known according to Dr Wendy Sherman of Mayo. She is head of brain tumors at Mayo Jacksonville FL.
So, have hope either way.

Yes there are numerous treatment options. Also ask about clinical trials at specialty centers of excellence.

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

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.

It's a Grade 4 or Tier 1 glioblastoma. I think the chemo and radiation is for the doctors to follow standard of care before you can try something else. I heard of a treatment in which you were electrodes on your head for 18 hours a day. I think that involves Optune? From what I've read this treatment has fewer side effects and is possibly more effective. I'm interested in others' experience with this.

It is not a routine test run daily. It can rake a week or two to get the results, but usually there are a few weeks of fractionated radiation therapy to keep you busy when waiting and as results can shift chemo to TMZ, it is worth the wait. I found TMZ very tolerable. I took it a full year and am waiting to see if longer is better. One neuro oncologist thinks I should continue with watchful waiting as it might increase the chances of it being effective if any recurrence is suspected. I will get another opinion after my next MRI.