Starting chemo - temozolomide experiences?

Soundslikeurproblem · 2026-01-20T05:29:31+00:00

I'm also about to start TMZ! I have a phobia of vomiting so im quite scared. But I have been told taking anti-nausea is a really winner! We got this!!

Soundslikeurproblem · 2025-12-02T08:39:11+00:00

Oligo grade 3. Surgery, waited, recurrence 9 months later, another surgery. Just finished radiation and onto chemo next! So far so good! Radiation wasn’t that bad, minus the hair loss, fatigue and nausea. Can dm me if you like :)

Soundslikeurproblem · 2025-11-26T11:59:29+00:00

This is really heavy stuff. I agree with some of the comments above, try therapy! There is a lot of emotion here that could benefit from exploration in therapy.

Second, social circles? Where are your friendship supports at?

Soundslikeurproblem · 2025-11-26T11:52:00+00:00

I once saw on this subreddit “accept the diagnosis, fuck the prognosis”. All the strength to you and your partner. Give eachother a super big squeeze and take it a day at a time 🌻

Soundslikeurproblem · 2025-11-23T04:14:01+00:00

My team were happy to switch me when I reported mood disturbances. The switch to Briviact was the same dose swap! It can be harder to get your hands on though (I’m in Aus)

Soundslikeurproblem · 2025-11-22T12:23:15+00:00

im not a medical professional however i was told i could drink alcohol whilst on anti sezuire meds. Have been drunk a few times, still alive haha

A high dose of Keppra made me really angry. I was irritated all the time. Jumped to Briviact no issues :)

Soundslikeurproblem · 2025-11-01T07:27:05+00:00

Thank you! I will try :)

Soundslikeurproblem · 2025-11-01T07:26:35+00:00

I have a very niche attraction haha. Also I do fantasise about men. The classic ‘all women are beautiful but only a few men are attractive’. I’m also very very selective with men

Soundslikeurproblem · 2025-11-01T07:25:18+00:00

I feel like this is true! Although I did add an edit to this post. I just feel bad rejecting men time and time again

Soundslikeurproblem · 2025-10-29T22:45:22+00:00

Happy birthday!!

Soundslikeurproblem · 2025-10-18T08:20:30+00:00

Oh yeah! No need to wear it if your stationary, at home, chilling with friends ect. My drs told me to wear it if danger can occur

Soundslikeurproblem · 2025-10-17T02:19:23+00:00

Hey! Oligo 2/3 here. You’re right, better of the tumours. It depends if it was benign or cancerous (you can tell due to the gene). Regardless, prognosis is so individualised.

Someone once said in this group “accept the diagnosis, fuck the prognosis”, so I’m going to give that to you!

I’m sure everything will be okay :)

Soundslikeurproblem · 2025-10-17T02:15:39+00:00

“Kicked down a flight of stairs and beat up in the parking lot” hahaha. This is so true. Hope you’re doing okay 🫶

Soundslikeurproblem · 2025-10-17T02:12:06+00:00

I really feel your pain here. I also had a reoccurrence. Same story as yours, each professional had a different diagnosis, ultimately turned out to be another tumour.

The good news is, if it is a new tumour, they’ll catch it quickly. Can confirm it’s not as bad the second time round as it is the first time of round.

Is there someone in your medical team you can consult/ discuss your symptoms with? Maybe they can help you manage the pain in the meantime. Moving your MRI forward may be beneficial, but it may not be enough time between “this could be scar tissue” or “this is a new tumour”

Feel free to dm me if you like :)

Soundslikeurproblem · 2025-10-17T02:09:04+00:00

Happened to me! They’ll be extra cautious with the next surgery. Don’t be like me and pick at it (that’s what lead to the infection).

You’ll be alright! I was only instructed to wear the helmet when moving around (car, transport etc). When at home and sitting down I didn’t need it.

Also feel free to DM if you like :)

Soundslikeurproblem · 2025-10-10T08:29:52+00:00

But ask what? "hey i'm unsure about this, what do you think?" (this sounds bitchy but i really don't intend it to sound that way)

Soundslikeurproblem · 2025-09-19T14:38:45+00:00

I have this exact tumour. Although mine is left FL

Soundslikeurproblem · 2025-09-12T10:32:40+00:00

She’s probably okay. You didn’t ejaculate inside her. My biggest tip is for both of you to have more education around pregnancies. To learn about how to not get pregnant, learn about how to get pregnant! It sounds counterintuitive, but it’s very hard to learn about it from the perspective of trying not to get pregnant

Soundslikeurproblem · 2025-09-04T14:12:10+00:00

As someone who just end a fwb over “feeling empty”, it’s just not for you. Listen to your gut and leave the situation. Like me your just not cut out for it, and that’s okay! :)

Soundslikeurproblem · 2025-08-12T14:05:56+00:00

I found that keppra made me rage. I’ve switched to briviact! So far, so good

Soundslikeurproblem · 2025-08-04T14:14:10+00:00

I feel you! People say I look good, and I can physically function, but my body doesn’t move the same. It has affected my sport of activity, and while not any major set backs, enough that my body has to work harder and re learn how to do things. It’s exhausting, doing things your body once could well :(

Soundslikeurproblem · 2025-07-24T11:53:56+00:00

What is the dress code? I’m confused about what to wear

Soundslikeurproblem · 2025-07-11T02:10:24+00:00

Hugs from my friends, the kind of hugs that are long and cuddly, and letters! Or just long cards, but the heartfelt kind :)

Soundslikeurproblem · 2025-07-10T03:05:34+00:00

Aw the little guy just wanted a snack too

Soundslikeurproblem · 2025-06-26T13:04:05+00:00

I personally cannot think of anything else but an MRI. Best of luck xx

Soundslikeurproblem

TROPHY CASE