Brain Cancer

How do I cope with a recent brain cancer diagnosis?

Hello everyone, my name is Elsie, I'm new to this group, and I'm glad to be here. I was diagnosed with brain cancer recently, and it's been a challenging journey. I'm here to learn from others, share experiences, and find support from people who truly understand what this is like. I look forward to getting to know you all, and I wish everyone strength and the very best."

Why am I hearing about treatments my doctor says won't help?

I have glioblastoma grade 4 brain cancer. Emy surgery was St. Patrick’s Day 2025. Lucky day because they were able to remove the entire tumor. I’ve done eight weeks of radiation and one year of chemo pills. I tried the Neptune And I was not a candidate as I have excessive sweating on my head and the wrays would not stay put on my head and the sweat with the electronic I was getting slightly shocked on my head. Anyway, my oncologist said there’s absolutely nothing more that I can do. This includes medical studies and drugs like ivermectin. I am 16 months into my survival. I am struggling because studies and my oncologist all say the average with treatment is 15 months. It scares me because I have so much. I still want to do. There is so much stuff that I’m reading or that people are sending me regarding studies, different kinds of tea’s or immuno therapy. But my doctor says none of those will help my cancer. I struggle believing that there is absolutely nothing left I could do for treatment. I trust my oncology team. They have taken a very good care of me. But why do I keep hearing so much other treatments that glioblastoma patients have had yet my doctor says nothing is available for me.

Has anyone else dealt with melanoma that spread to the brain?

Everyone seems to have a medically named form of brain cancer. I went with my husband to his oncologist appointment today and asked specifically what kind of cancer his is. He has Melanoma Brain cancer. That is the reason he has the non-operable lesions all through his brain. Has anyone else had this? If so, I have some questions to ask. Thanks so much!

How do I support my son through astrocytoma treatment?

Hello! My 35 year old son was recently diagnosed with Astrocytoma wild type. He had surgery on 5/27 surgeon removed 70%. He is starting radiation and chemo today. I am just looking for help in navigating this very difficult path with him. I am just falling apart. He has 3 children, 12, 10 and 18 months.

How do you manage severe headaches and balance issues with brain cancer?

Good Evening! My husband with the brain cancer is having severely painful headaches. He used to just have them in the morning, now they last all day. He can barely walk. In fact he has fallen 8 times in three days. His MRI came back that neither the radiation or immunotherapy has improved anything. He still has over 30 cancerous lesions. Has anyone else with brain cancer dealt with these symptoms?

Has anyone been denied clinical trials due to insurance coverage?

I will be starting my 4 th month of Temodar of the 6 month cycle at the end of week. I was diagnosed with Glioblastoma IDH wild type and MGMT unmethylated. My tumor was removed on November 20, 2025. Unfortunately I have Medi-Cal which is Community Health Care as my Heath Insurance and they won’t cover clinical trials unless I have a recurrence. Has anyone been in this situation where they can’t get a clinical trial due to their insurance. I want to report that so far my MRI’s are looking good.

Why do I get bad headaches in the morning?

i had lot of problems with mine I had a bad headache in morning time

How do you cope with multiple brain tumors from different cancers?

I had surgery last year to remove three malignant tumors from my brain. I found out that two out of the three tumors originated in my brain while the third one was metastasized from my parathyroid cancer.

Has anyone dealt with inoperable brain cancer with multiple melanoma lesions?

My husband was diagnosed 2/20 with brain cancer it is inoperable. He has over 30 cancerous melanoma lesions. He has been told he has only 3 to 6 months. Has anyone dealt with a cancer like this?

Are there treatment alternatives to lifelong pills for pediatric grade 2 astrocytoma?

My 14y old daughter has grade 2 astrocytoma idh-mutant. (Dx at 13y) The average age of this dx is 40. She doesn't want to take a pill (vorasidenib) the rest is her life & I don't feel it's a good fit for multiple reasons. Is TMZ & PCV chemo really the only other options? ... She isn't eligible at St. Jude's CH. I love the local hospital we're going to. It's renowned for its pediatrics, however, I don't have faith in her oncologist. If I request a different one, won't they just say the same things?