My mom finished her second round of 5/24 or whatever it’s called yesterday and she still feels very sick. She is on the highest dose of the chemo. I was wondering how long she will stay feeling sick
Hi, I posted on here a few times basic overview, my mom was diagnosed at the end of May with glioblastoma she’s 54, she had surgery May 26 and we’ve gone to many different hospitals for opinions. We started standard care, chemo and radiation and and the last day was July 30. Just about 10 days after on August 10 my mom was having a hard time walking randomly and so we went to the ER and had an MRI done and it had looked bad.
There was tons of new spots and lots of different areas of the brain and it was very scary. We had gone to more opinions and our doctor recommended another MRI with perfusion the MRI was done last Tuesday when we got the results back for the main MRI it was great. It had basically said all the spots had gone away mostly and it was just lots of radiation swelling, and when we met with the doctor, he again was very surprised and said this is great interest to carry on with chemo. No need for another surgery. But he had not received the perfusion results yet later in the day we had received a MyChart result, and it was the MRI with perfusion.
that one was completely opposite. It had basically said it looked very bad. There was lots of blood flow to certain spots meaning highly likely it is tumor. I am very confused of how different these two results are from basically the same MRI. I also feel terrible because we all got our hopes up and then it kind of got crushed again. Has this happened to anyone and does anyone know what this could mean?
Planning on doing Litt therapy + immunotherapy.
At the Mayo Clinic they said this is our best bet. I’m curious if anyone else has done this and who’s the best in the country at it
My mom was diagnosed with glioblastoma on may 27th, the day she had her surgery. She recovered very fast, starts radiation and chemo at the end of June and finished July 30th. We originally had our scan planned for August 24th, but on the 16th she had trouble walking, we called the oncologist and they said to come in and get scans. We went in and got a mri and there was progression. Lots of new spots. The Nero surgeon at our local hospital said they wouldn’t do surgery. We went to a bigger hospital and they said they might be able to, but they don’t know if it’s all tumor or radiation swelling. They said we will do a mri with perfusion and see if it’s tumor. They said if it’s tumor they might be able to do LITT or normal surgery, but if it’s swelling then it’s out of the picture. They want to start her on chemo again but that did nothing the first time so idk why. I feel so shocked in scared we have a recurrence not even 3 months basically after. We are looking into immunotherapy and things like that but I just feel like there’s no hope
**Duke**
•Dr. Peter Fecci
**Mayo Clinic**
•Dr. Ian F. Parney
**Cleveland**
Dr. Matthew Grabowski
**Md Anderson**
•Dr. Frederick Lang
Dr. Ganesh Rao
**Henry ford**
•Dr. Ian Lee
Yesterday my mom went to the ER for imaging since she had a hard time walking. She was diagnosed back in the end if may, and finished chemo and radiation July 30th. Yet we are here again. They did the scan and found new tumor but it’s too deep to do surgery. I was thinking at least we would get more than 2 months together. Idk what to do and if this is the end
Did anyone else need a second surgery so soon after first? We are getting one even tho we finished radiation 2 weeks ago. Also does anyone have any long term survival stories even if there first mri post SOC was very bad
My mom was diagnosed with glioblastoma and it’s been beyond hard for her even to the point of suicidal thoughts. She’s already on some medication for mental health but it’s not enough.
I’m on a urgent search for a neuro oncology psychiatrist Preferably based in Michigan
Hi, my mom was diagnosed at the end of May. She finished radiation about a week and a half ago maybe two weeks ago, but the past couple days have been pretty hard physically. after her surgery and throughout radiation she was perfectly fine with no physical challenges recently, she’s been very lightheaded, stumbling, she had an incident where her she couldn’t pick up her phone, and headaches which she never had before this. I’m only 18 but I’m her primary helper. I just keep telling her that it’s the healing symptoms from the radiation. I’m not even sure if that’s true but she’s in such a bad place mentally I feel like I need to just say something to make her feel better but now I’m worried. I’m just curious if these symptoms are the tumor grown back aggressively or healing from the radiation and chemo
Ever since we got my mom’s diagnosis about 2 months ago I have always been anxious and just thinking her life’s over which means mine is to. My life is just getting started and I wanted to experience things with her like if I got married, or had a kid, now she might not even see me start college or my brother start high school. Ever since I got on this page I’ve had mainly positivity whenever I post. I read peoples stories and I feel like so many people on here have lived past the life expectancy. I read people on here being on there 15th year! But I get so caught up on the good stories I forget that 95% of people don’t get lucky. Now I feel like im setting myself up for failure for feeling like we will get a lot of time.
I’m not sure if a post like this is allowed on here, if not I’ll delete. But I know for the rest of time my mom has till the day she dies, could be a month couple be years I’ll be anxious of her dying. I’ll be scared and never feeling happy. But the day she does pass, from then on I’ll feel empty and not whole. I’m only 18 so I have my whole life and all I can see in the future is pain. There’s no upside to this. And I can’t see how it can get better
I read someone say that I’m pretty scared since she’s unmethalyted
We want to try other stuff also
When we hear of glioblastoma, usually the first things we learn is the survival percentages, for example only 5% live last 5 years and only 30% past 14 months. Do these statistics factor in things like, if some of the people choose not to get treatment, if they choose not the do trials, if there age, if they have good medical care, etc.
I remember I read someone’s post that they whernt able to get their mom any care because of where they were at in India. So are these people are don’t have access to good medical care or standard care counted?
I’m sure there is a chunk of people when they hear it’s terminal, they decide not to do treatment and enjoy the rest if there time, are those people also counted in these statistics?
One thing I always tell my mom when she is having a hard time is that the statistics is so broad, it groups together people aged from as young as 10 to as old at 90. It doesn’t factor in other people have health issues others don’t.
I told her she’s young for this since she’s 54, she has no other health issues, we are doing everything we can for treatment. If we had a group of people all aged 54 who was diagnosed and had all these traits I’m sure the average lifespan would be longer
I’m not even sure if that’s true or not, but it helps
I’m just curious if anyone knows
Hope everyone is doing good
Hi, I was wondering if anyone in here knows of a counselor or therapist who specializes in grief and dealing with being newly diagnosed with a terminal illness. It can be medical or religious, I’m just trying to get help
I posted earlier about opinions on avastin and here on Reddit I got only good opinions and reply’s. But when I posted on the Facebook group it only got bad opinions and people saying it caused more problems or even death. I’m kind of confused on this
My moms looking into it for when she starts optune and just curious
I want some positiveness in my life but whenever I see posts about long term survivors a lot of them seem to be misdiagnosed.
I’m trying my best to stay positive but I see a lot of posts or comments on here just saying that it’s a death sentence no matter what and that there’s no hope. I know it’s terminal but I want time with my mom.
My family has gone to many different doctors, Md Anderson, Henry ford, uofm, duke. Every one of them said having a methylated or unmethylated doesn’t make much of a difference. From there research it isn’t a big difference of success comparing the two. I’ve seen people on here saying wait till you find out if it’s methylated or not to worry. I don’t like this spread of misinformation and making people with unmethylated even more scared.
The surgery happed so fast, we did it at a local hospital the same day they found out it’s a tumor. Now a couple weeks after the surgery we are getting second opinions and the bigger hospitals are saying if we got it done there we most likely would have gotten more out. Now she is regretting and full of dread. Is it true if it isn’t a full reduction that it’s more likely to go bad.
Hi guys so my mom (54) was diagnosed in the end of may and had her surgery. She ends radiation on the 30th of this month. Life hasn’t been that bad because we are getting treatment and that calms the mind. But recently we all, mainly her, have been more stressed and less hopeful in trusting gods plan. We are lost for our next steps. we have talked to many different hospitals and different treatment plans but in the end it’s up to us. We also have to decide if we want to do optune because we would need to covered by insurance. We just don’t want to choose the wrong path. She is unmethyated so I’m not sure if that makes a difference. We are just very nervous.