Friend has Brain Cancer Glioblastoma: What are the next steps?

Posted by susan159 @susan159, Jan 23, 2023

A friend Jane blacked out yesterday and was told in the ER that she has inoperable brain cancer and only a year to live. I want to find some hope for her. She sent me the MRI report which says gioblastoma. But does this have to be an immediate death sentence? Is there any hope of treatment for her? Does anybody know where her next steps should be taken? I'm hoping that the ER docs don't actually know about treatment options and that if she can get to the right people there might be some hope. If anybody has any insight, I sure would appreciate it.

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I am a 5+year survivor now but still have thoughts that I wish I would have given up at the beginning. I have found it to be normal. I recommend making your friend's time in the here and now enjoyable and immediately start doing things that she has always wanted to do and do them. Smell the roses, get a facial, mani, pedi, massage. Plan a party for nana moma and grandchild.

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I am a 58 year old women who was diagnosed with glioblastoma in 2015. I was originally was given 18 months to live. I went to the Mayo Clinic in Rochester, Minnesota, and had a wonderful surgeon who got me into a trial study. I am now 8 years out. My point is that the doctors usually give you the common prognosis and you should give treatment a try. I’m living proof that miracles do happen.

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Iowa late, may i ask what trial treatment you received? I have a recent diagnosis of gbt & will start radiation & chemo soon, but haven't discussed clinical trials/experimental treatments yet. I'm happy for you on your long-term survival 💕

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My wife has the same type of brain cancer. It is very fast-growing and highly resistant to common treatments.
Ellen has surgery the last week of February and about 90% of the cancer growth was removed. The rest was interwoven with brain cells.
Two weeks later she started 7 weeks of daily radiation treatment and chemo pill treatments.
On May 10th she has an MRI, after swelling reduction from the radiation treatment, and we will see how effective the treatments have been.
On May 24 we have an evaluation appointment at the Mayo Clinic Brain Cancer Center to discuss new treatments and openings in clinical group trials on experimental drugs.
If you wish I can share points of contact at the Mayo Clinic Brain Cancer Center.
Right now it is a fight against a foe with no known weaknesses.

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I was diagnosed with GBM in January 2023 with successful resection, 6 weeks radiation and chemo, will resume chemo and begin Optune treatment May 1. My integrative oncologist at Mayo Rochester recommended 3 books that I found extremely helpful and hopeful: Radical Remission: Surviving Cancer Against All Odds and Radical Hope by by Kelly Turner, and Ketotarian by Dr. Will Cole. Dr. D’Andre highly recommends this diet and it some it specifically mentions positive benefits for GBM.

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@nauden

I was diagnosed with GBM in January 2023 with successful resection, 6 weeks radiation and chemo, will resume chemo and begin Optune treatment May 1. My integrative oncologist at Mayo Rochester recommended 3 books that I found extremely helpful and hopeful: Radical Remission: Surviving Cancer Against All Odds and Radical Hope by by Kelly Turner, and Ketotarian by Dr. Will Cole. Dr. D’Andre highly recommends this diet and it some it specifically mentions positive benefits for GBM.

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Thank you for the book recommendations. I'd be curious to see what other clinical trials and treatments they recommend. I just now started chemo & radiation (insurance hold up) but I'll read the books in the meantime. I started the keto diet about 3 weeks ago too. Sending you healing vibes.

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@boilerbob

My wife has the same type of brain cancer. It is very fast-growing and highly resistant to common treatments.
Ellen has surgery the last week of February and about 90% of the cancer growth was removed. The rest was interwoven with brain cells.
Two weeks later she started 7 weeks of daily radiation treatment and chemo pill treatments.
On May 10th she has an MRI, after swelling reduction from the radiation treatment, and we will see how effective the treatments have been.
On May 24 we have an evaluation appointment at the Mayo Clinic Brain Cancer Center to discuss new treatments and openings in clinical group trials on experimental drugs.
If you wish I can share points of contact at the Mayo Clinic Brain Cancer Center.
Right now it is a fight against a foe with no known weaknesses.

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Sending both of you strength and your wife healing. I'd love to know what treatments her doctors recommend or what clinical trials. I reached out to the mayo clinic but, unfortunately, my insurance doesn't cover treatment there. You're right about the foe. I'm sorry your wife is walking this path too.

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@hopeandcourage22

Iowa late, may i ask what trial treatment you received? I have a recent diagnosis of gbt & will start radiation & chemo soon, but haven't discussed clinical trials/experimental treatments yet. I'm happy for you on your long-term survival 💕

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It was a trial where they made vaccines from the tumor, then gave me those vaccines over a period of months. They made as many vaccines as possible from whatever tumor material I had. I got 9 vaccines. Unfortunately, the trial was discontinued in the middle of my vaccines. I got all of my shots, but the FDA said the treatment overall was ineffective. Thank you for your good wishes.

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I'm glad you were able to get your vaccines. I hope they're helping you.

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