High grade Glioma - What questions should I ask?

Posted by eileen61 @eileen61, Aug 16, 2019

Thanks to the wonderful patient portal, I now know that my brain biopsy is positive for a high grade glioma. Unfortunately I haven’t been officially told by my team yet. Needless to say, I’m totally panicking. I need to ask questions, but I don’t even know what to ask at this point. Anyone out there that can help a newbie out?

My husband's Glioblastoma that originated in his brain has now metastasized to his spine. He was taken by ambulance a week ago and had emergency surgery to remove a tumor in his neck that was pushing on his spinal cord. He's still in the hospital recovering and he starts 10 days of radiation treatment on his neck today. Has anyone else had their Glioblastoma metastasize? This is very overwhelming to say the least.

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@debraannk

My husband's Glioblastoma that originated in his brain has now metastasized to his spine. He was taken by ambulance a week ago and had emergency surgery to remove a tumor in his neck that was pushing on his spinal cord. He's still in the hospital recovering and he starts 10 days of radiation treatment on his neck today. Has anyone else had their Glioblastoma metastasize? This is very overwhelming to say the least.

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Hello, @debraank – I can imagine learning your husband's glioblastoma had metastasized and his emergency surgery and hospitalization were overwhelming.

Apologies for the delay in explaining this, but I wanted to let you know I've moved your post here to where members were talking about various types of gliomas, (which include glioblastoma, as you know). Hoping that members like @eileen61 @marcyprof @pejiota4jack will return to provide some support and share any similar experiences as your husband's glioblastoma metastasis into his spine. I'd also like to invite @bjh369 @tanyabaust @merrijohnson @holly56 to add any thoughts on the situation of a brain tumor spreading.

I'm wondering how your husband is doing now, debraannk? Is he out of the hospital? How is the radiation treatment going?

Liked by debraannk

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@lisalucier

Hello, @debraank – I can imagine learning your husband's glioblastoma had metastasized and his emergency surgery and hospitalization were overwhelming.

Apologies for the delay in explaining this, but I wanted to let you know I've moved your post here to where members were talking about various types of gliomas, (which include glioblastoma, as you know). Hoping that members like @eileen61 @marcyprof @pejiota4jack will return to provide some support and share any similar experiences as your husband's glioblastoma metastasis into his spine. I'd also like to invite @bjh369 @tanyabaust @merrijohnson @holly56 to add any thoughts on the situation of a brain tumor spreading.

I'm wondering how your husband is doing now, debraannk? Is he out of the hospital? How is the radiation treatment going?

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Thank you so much for replying and moving my post. He is currently back home after a long 16 day hospital stay to recover from the emergency surgery to remove the tumor in his spine in near his 3rd vertabrae. He has since completed 10 additional radiation treatments to his neck and on new year's Eve he had an MRI on his brain and spine and we find out how everything looks tomorrow, January 3, 2020. For having brain surgery and spine surgery within about 6 months, he is actually doing pretty well. He has some right side mobility issues and pain. Hoping for some good news tomorrow ❤️
Deb

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@debraannk

Thank you so much for replying and moving my post. He is currently back home after a long 16 day hospital stay to recover from the emergency surgery to remove the tumor in his spine in near his 3rd vertabrae. He has since completed 10 additional radiation treatments to his neck and on new year's Eve he had an MRI on his brain and spine and we find out how everything looks tomorrow, January 3, 2020. For having brain surgery and spine surgery within about 6 months, he is actually doing pretty well. He has some right side mobility issues and pain. Hoping for some good news tomorrow ❤️
Deb

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@debrannk – Thanks for the update on your husband. So, it sounds as though tomorrow is an important day, with learning about how the MRI on your husband's brain and spine looked.

I'd also like for you to meet @hopeful33250, who has also experienced cancer and may resonate with the treatment as well as waiting for MRI results.

How have the radiation treatments gone for him? Any side effects?

Liked by debraannk

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@lisalucier

@debrannk – Thanks for the update on your husband. So, it sounds as though tomorrow is an important day, with learning about how the MRI on your husband's brain and spine looked.

I'd also like for you to meet @hopeful33250, who has also experienced cancer and may resonate with the treatment as well as waiting for MRI results.

How have the radiation treatments gone for him? Any side effects?

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He hasn't had any noticable radiation treatment bad side effects. He is having mobility issues with his legs and the doctors are thinking it may be neurological and might prescribe something called gabapentin. Just hoping for the best news we can get this afternoon regarding his MRI of his brain and spine.
Thank you so much ❤️

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Hello, I have an inoperable GBM and I am treated in Intra-Arterial chemotherapy with Carboplatin (for a year) and for 3 months, a mixture of Carboplatin and Methotrexate. I very well supported the chemos with the (nice) carboplatin but I badly support the chemos since we added Methotrexate. Are any of you receiving Methotrexate? What were your side effects (nausea, itching, hair loss, shortness of breath …)? Do you have solutions, supplements to help get through this? Thanks for sharing

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@marcyprof

Hello, I have an inoperable GBM and I am treated in Intra-Arterial chemotherapy with Carboplatin (for a year) and for 3 months, a mixture of Carboplatin and Methotrexate. I very well supported the chemos with the (nice) carboplatin but I badly support the chemos since we added Methotrexate. Are any of you receiving Methotrexate? What were your side effects (nausea, itching, hair loss, shortness of breath …)? Do you have solutions, supplements to help get through this? Thanks for sharing

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Hi, @marcyprof – you'll note I moved your post here to this discussion you've participated in before on high grade glioma, as I believe you will find the most members who can interact with you on whether they have been treated with methotrexate here in this discussion, and if so, what side effects they may have encountered with this medication and what may be helping with those.

Though you are being treated for glioblastoma multiforme (GBM), some Connect members who have mentioned methotrexate treatment have autoimmune conditions, yet may have some thoughts for you on side effects of this therapy, such as @maui6698 @candrgonzalez @marshahj @anya. @lioness @becsbuddy also may have some thoughts for you.

I believe from what you are saying that you have had methotrexate side effects including nausea, itching, hair loss and shortness of breath, correct? If so, have you found anything helps with these side effects? What does your doctor suggest?

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@marcyprof

Hello, I have an inoperable GBM and I am treated in Intra-Arterial chemotherapy with Carboplatin (for a year) and for 3 months, a mixture of Carboplatin and Methotrexate. I very well supported the chemos with the (nice) carboplatin but I badly support the chemos since we added Methotrexate. Are any of you receiving Methotrexate? What were your side effects (nausea, itching, hair loss, shortness of breath …)? Do you have solutions, supplements to help get through this? Thanks for sharing

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Hello @marcyprof
I am so sorry you’re having to deal with all this. I receive a different chemotherapy drug for my autoimmune disease. Have you spoken to the nurses or chemotherapy educator where you are treated? They should be able to educate you on treatments for the side effects you are experiencing. I know there are medications to help with nausea, (I was an oncology nurse for many years) but I don’t know if there is anything new to help with itching. Have you told the doctor about your shortness of breath? It’s important that they know. I hope I’ve been able to help a little. Becky

Liked by Lisa Lucier

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Hello Becky, Volunteer Mentor @becsbuddy,
yes I informed my team (nurse and doctor). The nausea would be normal and I have a few medications that help a little. For the itching, they seemed surprised. Maybe I was the first patient to mention it. For hair loss I was advised of brewer's yeast and the biotin supplement.
I was wondering if other members had more information on methotrexate and its side effects.

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Hello everyone,
Just wondering if anyone on here has or is currently using lomustine for their Glioblastoma? My husband just started his first dose last week. His Glioblastoma has spread to his spine a couple of months ago and he had surgery to remove that tumor followed by 10 more radiation treatments. He seems extra tired, but so far no nausea.
Blessings,
Deb

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@marcyprof

Oh Eileen61! As I understand you! Last fall, my neurosurgeon did not dare give me my diagnosis, GBM grade 4. I learned it from another doctor who had my file in hand. I will never forget this November 7, 2018. I was devastated. After that, I spent several weeks feeling like a death row in "the death corridor." It's awful!
I quickly realized that my neurosurgeon had not told me anything because he knew that my diagnosis was not clear. Neuro-oncology is an embryonic science. It's a medicine that does not know much. The neurosurgeon who is following me now is reputed to be one of the best in Canada where I live, and even he often tells me that he does not know what is happening with my tumor. He is searching. It is terrible for the sick people who can not be treated, but at the same time, this bad knowledge is like a breach that gives way to hope. Some people survive. There are so many unknowns. Why would not be myself an exception? According to my readings on the Internet, I should have died in spring 2019. But I'm still there, and rather in good condition! Why would not you be an exception? One of those people who will have the chance to grow old?

The letter M of the GBM means Multiform. Each GBM is unique and even cancer cells in the tumor may be different from each other. It is a tumor that can take many forms. You are at the beginning of a long battle but maybe it will not be as difficult as you imagine now. No one knows the future. Perhaps the care that will be offered to you will not diminish you as much as you can anticipate. Request multiple opinions.

A familly doctor, new friend who has a GBM like us, talked to me about a very good book: Radical Remission of Kelly A Turner. She met cancer survivors and became interested in the commonalities they had. She has selected 9 points in common. I am reading it now. It helps me. It could also help you.

There are things you can do to build strength. You can do the ketogenic diet, take DCA and EGCG supplements, do yoga and meditation … You have to breathe and rejoice to be always there, even in panic, it’s a proof that you are alive! Your pain touches me so much. Above all, do not be embarrassed to go for help. There are readings, like Irvin Yalom's, Staring at the Sun, which helps to get your head out of the water, to breathe.

No one knows the future. Not even the doctors, specially concerning brain tumor. We have unsuspected strengths in us that can help heal. I'm confident that you'll get by, that you still have good years to live. Breathe.
Kisses.
Catherine marcyprof

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Thank you so much. We are just beginning the fight for my husband. I will looking for info and support with others understand the battle. Just starting radiation/chemo with GBM4. God Bless. ❤️Sue

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