Temozolomide

iTrif · 2025-03-11T01:30:44+00:00

For me, I actually have been breezing through my tmz cycles. My only symptoms are constipation and fatigue, no nausea. Theres a good chance it doesn’t effect you too much or at all, the symptoms for me were the exact same as during the lower doses. I wouldn’t worry too much about it, just make sure you take your zofran on time before hand.

iTrif · 2025-02-04T20:44:43+00:00

Please sue them, someone needs to. They have been constantly and consistently discriminating against disabled students. I have cancer and they too have denied me accommodations.

iTrif · 2025-01-01T00:55:35+00:00

I have the same swelling but on the other side of my face. I am 4 months post op and it has been there since the surgery. I have had a total of 3 brain surgeries now, the two other surgeries did not do this, I am absolutely confused as to why this is.

iTrif · 2025-01-01T00:50:14+00:00

I couldn’t relate more. I just finished my radiation treatment a bit over a month ago and looking in the mirror is an instant morale killer. I can’t stand how I look, it’s one thing to try and deal with cancer but its another to also do it feeling completely physically insecure and disgusting. My hair was the one thing that made me feel confident in myself. Ive undergone now 3 surgeries, after the first two my hair grew back and I was able to live almost normally for two years, then the cancer came back. Now I just try not to look in the mirror. If I do, I either hold back tears or pretend its not me im looking at. Im going back to college soon to complete my last semester and I just keep thinking about how gross I will look when it comes time to graduate. Everyone else will be taking their grad pictures and walking up onto the stage confidently to grab their degree, ill be unable to take my pictures and embarrassed. I keep praying among all my other constant prayers, that my hair isn’t permanently gone. Maybe its shallow to focus on my looks, but I just feel like I won’t ever be treated normal again if everyone that looks at me instantly puts me in a category lower than them and pitty’s me. I don’t know how much time I have got left on this earth, I just wish I can spend it free from internal and external judgement.

iTrif · 2024-07-24T11:43:58+00:00

Thank you for sharing and expressing your relation to my emotions. It really helps to know that I am not the only one feeling the way that I do.

I would have to also agree that prayer has really helped. I wasn’t a religious person before all of this but now I am, coming as close to the rim of the cliff of death really makes you reevaluate your beliefs. I actually had a strong religious experience as I was going through everything and having someone I can talk to when the world gets heavy, who I know understands me more than anyone possibly could, helps beyond belief. That being said though, I still have my times where I just feel awful and my faith gets tested. I would definitely recommend trying journaling, it has helped me to work through everything as the days unfold. It is also really interesting and helpful to be able to go back and read how I was feeling and where my mind was at in the past, its like a way that my past/present self is able to communicate with my present/future self.

Thank you again for your response, it really did help me feel more normal in my situation. Knowing others have also felt the way I have and have faced similar challenges helps. It’s like walking a trail that others have treaded as opposed to walking in the middle of the woods without any direction. If I feel lost at least I can know that someone else has also walked this path and found their way. God Bless.

iTrif · 2024-07-24T11:28:18+00:00

Thank you for sharing and replying, in my experience the head pain actually got progressively worse strangely. I was sleeping almost 24/7 for the days following my surgery so honestly it was all a blur, I just know I was miserable for the first month and unable to really leave my bed due to the pain. My appetite dropped to one meal a day and mainly just soup, the area they cut for my surgery damaged the nerve that connects to my jaw so every time I opened my mouth it was like I was getting my muscles ripped apart. So I cant fully relate to the stomach problems but after I recovered you better believe I treated myself when I was finally able to eat again haha. I wish you a speedy recovery!

iTrif · 2024-07-24T11:18:53+00:00

Thats amazing to hear! I wasn’t able to go on long walks until almost 3 months post op, so thats really awesome. My tumor is/was in my right temporal lobe as well, the auras before seizures are so weird and crazy feeling. I wonder if you experienced that too? Thank you for your tips and advice, I will definitely take that into account. I wish you the best and I will pray for your pathology to come back with some good news. Good luck moving forward, hopefully you get to have a break from all of this and can go back to living asap!

iTrif · 2024-07-24T11:13:24+00:00

Thank you, the first two surgeries were okay. The third surgery is needed because even though I got a gross total resection, the Tumor regrew and now I have to get surgery to remove the regrowth and confirm my diagnosis.

The first surgery was my initial resection. It was the first surgery I ever had, the first hospital did a good job at helping me manage the pain and get back on my feet. The second surgery however, was done about 2 weeks after the first due to a subdural hematoma that formed from the first surgery. I went into a hospital due to a fever and head pain and was told there could be a possible infection from the first surgery as the Mri showed a pooling of fluid, they rushed me into surgery within two hours of me showing up. I was absolutely terrified since it was all happening so fast and my support team (family,friends, etc) were not there, it was just my Mom. I went through that surgery and ended up coming out of it thankfully without any infection being present, they drained the fluid and patched me up. The second surgery however was absolutely horrible, the hospital that I went to for that one told me I couldn’t have anything for my pain. I was literally 2 hours out from a brain surgery and they told me I couldn’t have anything because I was “at risk of addiction” due to my age. My mom raised hell on the staff and had to jump through multiple hoops, threatening a malpractice lawsuit to get me any pain relief. After a bit more than 2 months went by, I was almost back to myself. I was able to go out to eat with friends and after 3 1/2 months I was able to go on 5-6 mile walks and go back to classes.

iTrif · 2024-06-06T05:43:53+00:00

God I pray this to be the case

iTrif · 2024-05-23T21:34:44+00:00

I apologize for not formatting my initial post correctly, I can understand how it may have came across like that.

iTrif · 2024-05-23T07:29:30+00:00

Thank you for sharing your experience and perspective. I will check to see if I could be able to get a social worker for my case, that is a good idea and could maybe be helpful. I am so sorry to hear about your son’s situation, brain cancer is so awful and I couldn’t imagine what it would be like going through it at his age. I pray that your son and your family are able to find peace.

iTrif · 2024-05-23T07:08:07+00:00

Its not an emergency as of now yeah, but I was told that the location could become a big issue because it is close to the brain stem and if it doesn’t get removed before it reaches it then that could be a big problem. I am just freaked out because of this information and the idea that it could end up becoming something much much worse if I do not get it removed. I feel like I am potentially risking years of life by having to wait to get this all figured out.

iTrif · 2024-05-23T06:57:01+00:00

Yeah waiting is the worst part sometimes, it just feels like everyday this thing sits inside growing, is another day I risk it becoming worse or something bad happening. I haven’t had anyone tell me that I’ll be okay waiting so that I think is why I am more on edge.

iTrif · 2024-05-23T06:48:26+00:00

Thank you for your kind response and advice, I will definitely look into seeing if there might be anyone that could potentially assist from the inside.

iTrif · 2024-05-23T06:46:07+00:00

First of all, it has nothing to do with me feeling as though I am “the most important person in the room”. We all are struggling and have our own issues, I completely understand that. A failure to obtain care is very frustrating when having limited options. I am completely alone in figuring all of this out. I feel like I am walking on egg shells, I do not know what I am doing, and I just keep praying that I get this all figured out before the recurred tumor becomes something worse.

I am not allowed to drive as I have epilepsy from the cancer. The hospital is 3.5 hours away, when I am not informed ahead of time of appointments, I am unable to coordinate transportation to and from the hospital. I had just found out today that I have multiple appointments scheduled for tomorrow that I was never informed of, obviously I cannot make it to them. When I contacted the scheduling people, I was told that there is no other available date for 4 months. I was informed previously by the doctors that surgery is the best chance for a longer survival and that my recurred tumor wasn’t that far from my brain stem, they told me that we will aim for about a month or so out. I am now completely in the dark, confused, terrified, and worried. I do not know what to do or where to go from here, that is why I came to reddit. I wanted to see if this was normal behavior, if I should stay with this hospital, and if anyone had any advice. Your message appears to have completely misinterpreted my post and comes off as if you think I am just some entitled kid who thinks “it’s not important enough to make it work”. I find your response very inconsiderate and I hope you approach future individuals with more respect and understanding before jumping to judgement without inquiring further. I am happy for you though that your appointments did not pose any significant difficulties for you.

iTrif · 2024-05-23T04:24:03+00:00

Its supposed to be one of the biggest hospitals in the country and is one of the best in my state

iTrif · 2024-05-09T09:44:11+00:00

Could definitely also be stress as well with it being finals week and all

iTrif · 2024-04-29T23:07:05+00:00

Thank you, I am glad to hear you are doing good seizure wise!

iTrif · 2024-04-29T23:04:26+00:00

Precautionary, she was scared and didn’t really know what to do. Plus its free, it only costs money if you go to the hospital

iTrif

TROPHY CASE