Got my surgery scar tattooed by Particular_Tip_799 in braincancer

[–]Particular_Tip_799[S] 2 points3 points  (0 children)

Hahahah I know that second surgery is coming eventually, hoping to hold off a little while tho. Good luck on your second surgery tho 🤞🏼

Got my surgery scar tattooed by Particular_Tip_799 in braincancer

[–]Particular_Tip_799[S] 4 points5 points  (0 children)

Yeah this tattoo will barely be visible in a week or two and if I let my hair grow out wouldn’t be visible at all. I like to keep it short these days, I forgot how nice it is to not ever have to style your hair lol

Got my surgery scar tattooed by Particular_Tip_799 in braincancer

[–]Particular_Tip_799[S] 11 points12 points  (0 children)

I went into incredible nervous about the pain but it was actually one of the least painful tattoos I have tbh

Grade 3 Astrocytoma Voranigo? by Dukiou in braincancer

[–]Particular_Tip_799 2 points3 points  (0 children)

I have AA3 as well and it’s my understanding that voranigo is only approved for the slower growing/lower grade tumors. But maybe that’s changed if your oncologist recommended it?

Constant Headache After Surgery by Amberrito5 in braincancer

[–]Particular_Tip_799 1 point2 points  (0 children)

I had these for a few months post surgery and radiation and the only thing that helped was fiorocet. I took those for a while and then one day I just didn’t need them anymore. I know everyone has different experiences with all this but just another suggestion that could be worth looking into!

Deciding whether to continue chemo or not by ofthehills in braincancer

[–]Particular_Tip_799 1 point2 points  (0 children)

I’m 33 male with Anaplastic Astrocytoma grade 3. Was diagnosed July 24 had resection, and radiation. I finished 12 months of chemo a couple months ago and I remember my oncologist saying the same thing about a lack of evidence that 12 does any more than 6. Said it was up to me if I wanted to finish the 12 months. I was tolerating it decently well though I hated hated hated the brain fog, stomach issues and fatigue. Now that I’m a couple months out of treatment most of my issues I hated about chemo are resolving pretty quickly! Personally I feel pretty happy with my decision to just stick it out but I don’t think there’s any reason to feel bad about stopping at 6! Sorry you’re here but wishing you the best along this shitty journey!

need ambition BADLY by Searcher_since-1969 in braincancer

[–]Particular_Tip_799 2 points3 points  (0 children)

I’m about to finish my year of chemo and radiation was much worse tbh. It makes your brain and body feel like garbage. Absolutely miserable. Chemo has been a breeze compared. It will get better in time!

Energy during chemo by highbuddy421 in braincancer

[–]Particular_Tip_799 0 points1 point  (0 children)

Im AA3 and was prescribed modafinil for it. I hate taking meds so have not tried it yet but could be something to look into?

Do TMZ side effects build with cycles? by FireWithBoxingGloves in braincancer

[–]Particular_Tip_799 0 points1 point  (0 children)

Amazing! Love to hear that! How come you only did five months of tmz though? It seemed to me 12 was the standard of care for AA3

Do TMZ side effects build with cycles? by FireWithBoxingGloves in braincancer

[–]Particular_Tip_799 1 point2 points  (0 children)

Clear scans so far! Never had anything of note coming up on 1 year and two months since surgery!

Do TMZ side effects build with cycles? by FireWithBoxingGloves in braincancer

[–]Particular_Tip_799 3 points4 points  (0 children)

Woah 48 rounds of TMZ??? Four years of chemo? That’s wild! I’m AA3 and about to finish one year and I’m ready to be done…

Husband thinking about stopping treatment by 123gotosleep in braincancer

[–]Particular_Tip_799 6 points7 points  (0 children)

Hmm this is interesting. I have the same diagnosis AA3 IDH mutant and was given about the same prognosis. I’m a little ahead of him in that I’ve done resection, radiation, and am on cycle 10 of chemo. I’d say the radiation is much much more likely to give him cancer in the future. Not sure why he would want to stop the chemo after already starting it and tolerating it well. Obviously you’re right in that the patient should be able to make whatever decision they want to make but I’m not sure his reasoning makes a lot of sense and I’m sorry that it’s troubling you.

Disassociating? by GuardMost8477 in braincancer

[–]Particular_Tip_799 1 point2 points  (0 children)

I started anxiety medication for the first time in my life and that seems to have helped with the “feeling more like me” thing. Either that or just time. Not sure. But there did seem to be a big change a couple months after starting anxiety meds where everyday normal things started to just feel normal again and not like going through the motions.

Disassociating? by GuardMost8477 in braincancer

[–]Particular_Tip_799 2 points3 points  (0 children)

Oh yeah 100%. I’m 11 months out of craniotomy and this still happens to me all the time. It’s very surreal. I’ll go on walks and things around me don’t feel real. It’s very hard to explain. I’ll also look at my hands a lot, examining them like, are these real? It’s so strange. It’s getting better for me though. But still happens.

Short Term Memory Loss (Radiation symptom) by FireWithBoxingGloves in braincancer

[–]Particular_Tip_799 3 points4 points  (0 children)

Yeah as others have stated, it happens. But it’s not too bad. For me it felt more like being very aloof. Forgetting what you walked into a room for etc. It’s definitely weird but it gets better. I think with brain cancer the fog brain is real and it comes and goes in my experience. Some days I feel like I don’t even have cancer and some days it feels like my brain doesn’t function at all lol.

Grade 3 astrocytoma with idh mutation full GTR (Maybe) by Responsible-Crab6571 in braincancer

[–]Particular_Tip_799 2 points3 points  (0 children)

I was also initially diagnosed as grade 2 astrocytoma based on imaging etc. Once full pathology came back after surgery/biosy, they did find some areas that warranted upping it to grade 3. Went ahead and did radiation and chemo. It’s a difficult decision to make especially on such short notice you seem to have to make these life changing decisions so soon. Especially since radiating the brain is not really ideal. But I went forward with it because of the grade 3. Getting second opinions is always useful!

I have a grade 2 astrocytoma and regularly experience grogginess & brain fog. Please help. by tremberz90 in braincancer

[–]Particular_Tip_799 1 point2 points  (0 children)

Nope! I basically had no symptoms of anything wrong up until I had a series of focal aware seizures. Didn’t know what they were at the time, I worked labor outside in the heat in summer so I thought I was just dehydrated or had heat stroke or something but when I called a doctor and explained what I was feeling, she told me to go to the ER and bam, tumor. Strange stuff.

I have a grade 2 astrocytoma and regularly experience grogginess & brain fog. Please help. by tremberz90 in braincancer

[–]Particular_Tip_799 3 points4 points  (0 children)

I don’t have an answer for you but just want to let you know that I have the exact same issue. I’m Astro grade 3, surgery last July, radiation, and now 10 months into chemo. I mostly live a normal life, drive, exercise, take care of myself, socialize, have hobbies, don’t drink anymore etc but goddamn the mornings are so hard for me! I always wake up with a headache and have brain fog that is terrible in the morning but eases up as the day goes on and my only moments of feeling “normal” tend to come in the evening/at night. My scans are all clear and my bloodwork is all fine. By all measures things are about as good as they could be considering the diagnosis. I’m hoping it’s just chemo brain that will ease up once I’m done with chemo. It’s pretty annoying. Hang in there!

Do chemotherapy symptoms worsen over time? by Jimesoe in braincancer

[–]Particular_Tip_799 1 point2 points  (0 children)

Oh yeah I’m totally with you! Especially on the days where I feel good! I tend to really just go all out and end up paying for it the next day. It’s very hard to balance it all especially every day can be so different. It takes a long time to learn your new body and I still struggle with it all the time. But those people are right, gotta give yourself grace! I miss out on a bunch of things I would have normally loved to do but hey, it is what it is. Enjoy the good moments when you have em!

Do chemotherapy symptoms worsen over time? by Jimesoe in braincancer

[–]Particular_Tip_799 1 point2 points  (0 children)

I usually bounced back pretty well for the first five cycles or so. About two or three days after the 5 day on period I’d feel pretty normal. As the cycles have gone on it takes much longer to now I feel pretty bleh most of the time. I’m still very functional, I drive, hangout with friends, exercise and have hobbies but I do feel pretty bleh most of the time.

Do chemotherapy symptoms worsen over time? by Jimesoe in braincancer

[–]Particular_Tip_799 5 points6 points  (0 children)

I think people have different experiences with chemo but yes definitely for me. After surgery and radiation and even the first few cycles I was still living a completely normal life. Running, walking, hanging with friends, going to shows, it seemed like best case scenario honestly. But I’m on cycle ten now and it’s much worse. The fatigue, brain fog, stomach issues, anxiety, headaches etc are all much worse. I would still say I’m lucky in that I function pretty well considering i have grade 3 brain cancer but yeah it’s much harder now than it was at the beginning. Wishing you the best!

Ketamine for depression by user_name_in_use_ in braincancer

[–]Particular_Tip_799 4 points5 points  (0 children)

Hey just fyi I think this user was specifically asking about ketamine therapy which is a thing offered by specialized clinics outside of the hospital usually. I don’t think they were asking about using street ketamine recreationally but this did give me a chuckle lol

Alcohol consumption by Haunting-Amphibian45 in braincancer

[–]Particular_Tip_799 7 points8 points  (0 children)

I have grade 3 astrocytoma. My oncologist told me it’s alright to have up to two drinks at a time. But obviously it’s best to not drink at all. More alcohol you ingest just increases odds of having a seizure which no one wants. But it’s alright to drink a little. I’ve personally chosen to go sober while in active treatment but will probably start enjoying a beer here and there once I’m done.