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High grade glioma: waiting for remainder of molecular testing

Posted by raphaela2025 @raphaela2025, May 2, 2025

It hasn't hit me yet. Just found out. I don't know what to do everyday. I'm not working. I can't drive anymore. Thank you for having me in your group.

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rachel2025 | @rachel2025 | Sep 10, 2025
In reply to @sjt10323 "It looks as though your husband is in the same issue I went through which started..." + (show)
Profile picture for sjt10323 @sjt10323

It looks as though your husband is in the same issue I went through which started in October of 2023. After the radiation and chemo, I was advised of the next steps. The negativity of the Oncologist I was seeing immediately made me get a 2nd opinion. I am so glad I did.
The next treatment was 5 days a month for 6 months of taking the same chemo pills but with the highest dose I could. I was done in July of 2024. The only medication I take now is seizure pills as that is what happened when this was discovered.
Early 2025, my oncologist said there was growth again. She had a wait and see attitude, thank God! My last MRI in early August of this year, the oncologist said just as she suspected, the growth shrunk.
As a side note, due to my original diagnosis which gave me a condition for that of a 5 year old, my oncologist had my blood work sent to the lab again. The 2nd opinion came back with a diagnosis that was different than the first one which I looked up and it pretty much has this as the answer 🤷‍♀️ why I had this happen is unknown.
Sending prayers and hugs that your husband has good results like I have experienced.
Sjt

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Thanks so much for your sharing. Yes, I think my husband has the same issues as you have. And current treatments that presented to us is the same as yours too. He is also taking seizure pills now.

Did you have side effects during radiation and chemo? Anything can help to reduce the side effects?

I am glad to know you are doing well so far, which give me a lot of encouragement. We are also going to try the Clinical Trail during radiation/chomo treatment. We believe that God will lead us through everything.

Thanks again,

Rachel

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carmenbr | @carmenbr | Sep 15, 2025

Hola, como estás ahora?. Estoy esperando resultado de biopsia con un mal pronóstico en Resonancia. Tengo pocas ganas de vivir

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sjt10323 | @sjt10323 | Sep 15, 2025
In reply to @rachel2025 "Thanks so much for your sharing. Yes, I think my husband has the same issues as..." + (show)
Profile picture for rachel2025 @rachel2025

Thanks so much for your sharing. Yes, I think my husband has the same issues as you have. And current treatments that presented to us is the same as yours too. He is also taking seizure pills now.

Did you have side effects during radiation and chemo? Anything can help to reduce the side effects?

I am glad to know you are doing well so far, which give me a lot of encouragement. We are also going to try the Clinical Trail during radiation/chomo treatment. We believe that God will lead us through everything.

Thanks again,

Rachel

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Hello,
I had little to no side effects during treatment. The doctor provided the nausea pills to take just prior to the treatment each day. The only time I took a nausea pill after treatment was when I was doing the 5X month for 6 months of chemo pills as my dosage was 3 times the amount of when I was taking chemo every day during the initial treatment. Even then, I took a total of 3 extra pills throughout the entire 6-month treatment. The 3 extra pills were taken towards the end of the monthly treatment as the chemo started to affect me. Please note, the extra dosage during the 6-months did make me a little tired but that was a perfect reason to take an afternoon nap. 😉
All the best for your husband and you as well.

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sjt10323 | @sjt10323 | Sep 15, 2025
In reply to @carmenbr "Hola, como estás ahora?. Estoy esperando resultado de biopsia con un mal pronóstico en Resonancia. Tengo..." + (show)
Profile picture for carmenbr @carmenbr

Hola, como estás ahora?. Estoy esperando resultado de biopsia con un mal pronóstico en Resonancia. Tengo pocas ganas de vivir

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Hello,
Whatever you are going through.....STAY POSITIVE as this is extremely helpful.
Also, get a second or even a third opinion if you have to.

Sjt

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rachel2025 | @rachel2025 | Sep 17, 2025
In reply to @sjt10323 "Hello, Whatever you are going through.....STAY POSITIVE as this is extremely helpful. Also, get a second..." + (show)
Profile picture for sjt10323 @sjt10323

Hello,
Whatever you are going through.....STAY POSITIVE as this is extremely helpful.
Also, get a second or even a third opinion if you have to.

Sjt

Jump to this post

Thanks again for all your encouragement. Your sharing is very helful. My husband will start his treatments this Friday with radiation and chemo together. I hope he will be like you without too much side effects. So far he has very good appetite, and up spirit.

We have consulted with both Stanford and UCSF doctor, and decided to work with UCSF doctor. Hope everything goes well.

Thanks,

Rachel

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