Some suggestions that have helped me tolerate chemo really well: If you’re taking TMZ, take it at night before bed. Take zofran, set a timer for 30 min, get ready for bed then take your TMZ. Go right to sleep. Eat an early dinner, nothing afterwards, go to sleep on an almost empty stomach. I vomited the first night with a dosage of 140mg, now I take 360mg for 5 days, then 23 days off… for a year. No more nausea. I met someone in a brain cancer support group who was told she could take her TMZ anytime of day, just always at the same time. I was surprised, several of us suggested she try the ni ..read more

Hi all, I’ve spent the last several months quietly reading most of the posts on here and not really joining in. I’ve never used reddit. but lately I’ve really started to spiral and feel lonely at night thinking about all of this, so maybe it will help. My boyfriend (37m) and I (29f) started dating in april of last year. He had his first ever seizure in November, diagnosed with an astrocytoma IDH mutant type grade 4, had his resection done just a few weeks later. They said about 75% removed, remainder was too vascularized and deep to remove. He underwent 6 weeks of radiation and chemo, got new ..read more

I would like to make it clear that apparently, I did some out-of-character behaviour that I don't remember from the last few months before finding out about the tumor. Apparently, I was suicidal and blamed him. submitted by /u/Grand_Slip_2849 [visit reddit] [comments ..read more

When you are first diagnosed, most people tell you not to google because you’ll only find bad news. I googled the hell out of my glioma and wrote it all down in a blog post. https://www.raggedclown.com/2023/12/29/gliomas-a-users-guide/ You might want to skip this if you don't want to read bad news. But, if you are the kind of person who’d rather know what you are facing so you can make plans, have a read. You might find it useful. Lots of bad news in there but lots of good news too. If there is bad news in my future, I want to know it. I understand that other people would rather not know too ..read more

Day 12 adventure after radiation and chemo submitted by /u/Ok-End9234 [visit reddit] [comments ..read more

I know radiation it’s expected to be in the spot that radiation is being directed to. With the chemo pill will I lose most my hair like with the infusions? Just wondering if I’d like to just chop it all off and at least donate my hair beforehand to a good cause . Also weight fluctuation; how many ppl lost weight and how many ppl gained weight while on the chemo pill? submitted by /u/Pale_Confidence8451 [visit reddit] [comments ..read more

Hey gang as if the brain cancer isnt enough has anyone had other health issues arise? I have to have an ultrasound on my liver next month,the oncologist said my liver numbers are out of whack likely from the TMZ. Wonder if anyone else has had any other health issues from the treatment. Thanks and keep up the good fight you bunch of freaking legends! submitted by /u/thundercaveshow [visit reddit] [comments ..read more

My 3 year old has an astroblastoma on the brain stem, we were diagnosed in October last year and it's been a huge journey for us. Finally came home a few weeks ago but back to new symptoms suggesting that things are getting worse again. I am so lost, some days I'm so burnt out and struggle and then tonight I was just watching her fall asleep and she's so little and innocent and I can't even say if she will make her 4th birthday and then I feel guilty for not treasuring the time I have We were told there is only a handful of people in the world with her cancer and it's so lonely going through ..read more

I'm so sad right now. I'm trying not to get ahead of things and stay positive. submitted by /u/We-Like-The-Stock [visit reddit] [comments ..read more

I was recently diagnosed with a glioma in my cerebellum. It's pretty small but I will still need it removed. My visit with the doctor at NYU was brief - though I don't think they could provide me too much information without a biopsy. I'm still in shock. Anyone in NYC that wants to connect? Whether for support, to discuss doctors/facilities, what to expect... ? submitted by /u/PoopsicleSchtick [visit reddit] [comments ..read more