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Has anyone else with IDH-mutant diffuse astrocytoma, grade 2?
Brain Tumor | Last Active: Oct 2 10:14am | Replies (42)Comment receiving replies
My wife had a 4cm Astrocytoma Grade 2 IDH mutant on the right temporal lobe removed 3 years ago in 2020. It looked like it was totally removed.
She had another seizure last week and a CT scan at the hospital. They want do do another MRI to double check.
The area in question is adjacent to the removal site and looks more like a flowing milky area or edema. The oncologist reviewed her every 3 month MRI 3 weeks ago and said there were no issues and it looked clean. But last week she had a seizure and they did a CT scan and the oncologist thought there was enough reason to do another MRI right away.
I guess cancer could show up again in 3 weeks after a clean scan but it seems a bit unlikely after 3 years of clean scans.
Either the anti seizure medication is loosing its effectiveness or more cancer has returned in the last 3 weeks to cause another seizure.
Does anyone have any advice for a scared husband?
I am very afraid of what comes next and wanted to talk to someone that has been through this.
Replies to "My wife had a 4cm Astrocytoma Grade 2 IDH mutant on the right temporal lobe removed..."
This is a follow up from my last post. It took 7 weeks to get a new MRI and the scan was good. No growth. They were concerned that because she had a seizure, that could be a sign of cancer growth. Her neurologist said that anti seizure meds can stop seizures only 70% of the time and two medications together can stop them 80% of the time but you can't get 100% with medication. She mostly has auras once every couple of weeks and the auras and the one seizure are usually at night. Good news all together.
Her oncologist was very up front this time for some reason. She said it is not if the cancer will come back but when. But... it will be caught early and there are many things that can be done to shrink or remove the regrowth. She has a very short scan schedule set up for her. Every 2 to 3 months. I suppose 3 years is an average time for recurrence after surgery but I don't know.
I know if you had 1000 people with the same tumor characteristics you will have 1000 different outcomes. This type of cancer is very individual and it depends on where it is and how old you are and how much was removed on the first surgery.
There are new treatments since 2020 that are very promising and the survival rate is going up all the time.
There are many encouraging things happening these days. Over all I am learning not to worry but to trust God has a plan for all of this that is way more than I will ever understand.
My wife has a much better attitude than I do and I need to learn from her.
I've been in remission from the same exact tumor since March of 2019 all has been going good have a scan ever 6 months now and I'm just on 5 mg aloquist twice daily and lomitrigene low dose because it's seizures which I haven't had one since March of 2019 and is pretty much a safety factor for me because I don't want to have a seizure and hurt or kill someone because I run heavy equipment that medication also helps with bipolar/mood and anxiety which has been great im glad it's all working awesome! But before when I was on keppra it was terrible I would get in bad moods and it was making me almost too unrelaxed but I had to stay on it for soo long seizure free before they would let me go off it.
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Hello @wwooden and welcome to Mayo Clinic Connect. I am so sorry for what your wife is going through, and you as her caregiver.
How is your wife doing amidst this latest news?