Support

sonyarenee

Hello. I was diagnosed in August with brain cancer. Had a resection and then a reoccurrence a few weeks later. I did 6 weeks of chemo and radiation for 5 days a week. It was successful and no tumor can be seen. I'm been under close monitor but always end up in ICU hospital due t headaches and brain swelling. I recently got started on chemo alone, no radiation but for a year. I have to do it for first week of every month for 5 days. I don't really understand why and ask millions of questions. Not really getting any straight answers and insanely scared. I just don't know what to expect, where I stand or what. My moral support is basically me. It's scary and lonely but I'm a fighter. Just don't know what way to go. Any input would be greatly appreciated.

eDivebuddy

Talk to your oncologist about boswellia. I've been using it for almost 4 years to control cerebral edema. I do 4000mg a day and it's kept me off steroids the entire time.

cmpattberg

I don't have a direct answer for you. But I have found that there are several cancer support/group sites online. I just barely joined this one. I had been on a lung cancer group that was really helpful. I'd suggest you Google for more alternative groups - perhaps one more specific to brain cancer and see if one of them is more active/interactive.

Sorry I could not be more help. Good luck.

cmpattberg

Brain Tumor Support Grp - https://www.braintumornetwork.org/get-support/?gad_source=1&gad_campaignid=14077592578&gbraid=0AAAAABWZOwIjxTecBUDx29zYGEhxjr1r1&gclid=CjwKCAjwravBBhBjEiwAIr30VJu0u1seIHd1EBOyrLozGagps7oiqK4VCJBgcQchGA0RGwDPLQn00RoCa8sQAvD_BwE

There are more Google results. There will be more groups to check out. Good luck.

vorzan

https://csn.cancer.org/discussion/329352/support

Sonya, thank you for sharing all of this. I can only imagine how exhausting and overwhelming it's been—especially doing it mostly on your own. The not-knowing, the medical fog, the repeating fear—that's a heavy load to carry. And still, you're showing up, asking questions, and moving forward. That is strength, even if it doesn't feel like it.

It's completely okay to be scared. You're not weak for feeling that. No one expects you to have all the answers—and it’s frustrating when the people who should don’t give you clear ones. But you're doing what matters most: staying engaged, staying curious, staying alive. That is the fight.

You don’t need to see the whole path right now—just keep taking the next step, with care and courage. You’re not as alone as you think. People here hear you. I hear you. And if it ever helps to just have someone to walk with in the dark, even quietly, I’ll be here.

flowerchild143

Hi, what type of brain cancer did you have? I had a Clival Chordoma, and had a transphenoidal resection done followed by Gamma Knife Radiation to my brain. That was in 2004. It is a very scary time I know. I was a single mother of two at the time without parents, & my youngest was 7yrs old. Believe me I know your fears. I'm sorry you are going through this. We are a family. I hope you know you are not alone. I would also recommend therapy. It helped me get through that horrible period. Are you happy with the treatment you receive at the hospital? I live in Boston so we do have great healthcare. Good luck & God Bless you. I'll be praying for you.🙏

Aleguz

Hi,

I am so sorry to her about your diagnosis.

My husband was diagnosed with an oligo grade 3in Dec 2024, he had a craniotomy and now we are just monitoring the residual tumor.

Have you changed your diet? I have found doctors do not necessarily talked about this enough. We have started a therapeutic ketogenic diet and it has done wonders for my husband.

I recomend the below books:

• Dr. Nasha Winters - The metabolic approach to cancer (also in audio book)
• Miriam Kalamian - Keto for cancer

Wishing you the best :)