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.
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.
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.
@wwooden, I appreciate your recent update. It sounds like your oncologist works well with you and your wife. There are many stages to acceptance. Your wife sounds like a good teacher. 🙂
I've been recently diagnosed with Astrocytoma Grade 2 IDH mutant.
It can't be removed. Starting radiation 8n July then chemotherapy for a year to stop it from growing. Takes up the entire left side of my head.
Been having a lot of trouble walking lately and always tired. And bumping into everything on my right side and dropping things.
I've been recently diagnosed with Astrocytoma Grade 2 IDH mutant.
It can't be removed. Starting radiation 8n July then chemotherapy for a year to stop it from growing. Takes up the entire left side of my head.
Been having a lot of trouble walking lately and always tired. And bumping into everything on my right side and dropping things.
I have had the same problem. It’s seven years since September and I have a walker and a heme at home and a wheelchair too. I hate it some days but realize that there is always a new cure with medications and new treatments. You are not alone in your journey. Hope that helps 😀
I have had the same problem. It’s seven years since September and I have a walker and a heme at home and a wheelchair too. I hate it some days but realize that there is always a new cure with medications and new treatments. You are not alone in your journey. Hope that helps 😀
Hello! I am two weeks out from a surgery to remove a brain tumor that was the size of a golf ball. 80 percent of my tumor was removed and I haven’t had any neurological or physical issues. I had 2 seizures which lead to my diagnosis. After looking at the biopsy I have a grade 2 astrocytoma that has the IDH1 mutation. Is there anyone that is on the new medicine that is specifically for tumors with the IDH1 positive mutation?
Hello! I am two weeks out from a surgery to remove a brain tumor that was the size of a golf ball. 80 percent of my tumor was removed and I haven’t had any neurological or physical issues. I had 2 seizures which lead to my diagnosis. After looking at the biopsy I have a grade 2 astrocytoma that has the IDH1 mutation. Is there anyone that is on the new medicine that is specifically for tumors with the IDH1 positive mutation?
There are members talking about Tibsovo, albeit for bile duct cancer, in this discussion:
- Anyone taking tibsovo for bile duct cancer? https://connect.mayoclinic.org/discussion/anyone-taking-tibsovo-for-bile-duct-cancer/
Tibsovo (ivosidenib tablets) is an IDH1 inhibitor and I understand it is showing to be effective for some brain tumors. I'm glad you have access to it. I'll be interested to hear how you're doing as you start treatment.
Connect
Connect
Like
Helpful
Hug
Thank you for asking. She is doing better than I am. She is so strong in faith and has a great attitude.
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.
-
Like -
Helpful -
Hug
8 Reactions@wwooden, I appreciate your recent update. It sounds like your oncologist works well with you and your wife. There are many stages to acceptance. Your wife sounds like a good teacher. 🙂
-
Like -
Helpful -
Hug
2 ReactionsI've been recently diagnosed with Astrocytoma Grade 2 IDH mutant.
It can't be removed. Starting radiation 8n July then chemotherapy for a year to stop it from growing. Takes up the entire left side of my head.
Been having a lot of trouble walking lately and always tired. And bumping into everything on my right side and dropping things.
-
Like -
Helpful -
Hug
3 ReactionsI have had the same problem. It’s seven years since September and I have a walker and a heme at home and a wheelchair too. I hate it some days but realize that there is always a new cure with medications and new treatments. You are not alone in your journey. Hope that helps 😀
-
Like -
Helpful -
Hug
1 ReactionThanks for the reply!
Curious to see how it all plays out and how things will change. Hoping to be able to work for a long enough time.
Hello! I am two weeks out from a surgery to remove a brain tumor that was the size of a golf ball. 80 percent of my tumor was removed and I haven’t had any neurological or physical issues. I had 2 seizures which lead to my diagnosis. After looking at the biopsy I have a grade 2 astrocytoma that has the IDH1 mutation. Is there anyone that is on the new medicine that is specifically for tumors with the IDH1 positive mutation?
-
Like -
Helpful -
Hug
1 ReactionHi@alhayes1976, I'm tagging fellow members @aworriedmom @shell68 @taysuz @aa3 @joesimmons who also have experience with an astrocytoma and IDH1 mutation.
Al, what treatment beyond surgery is being suggested for you?
-
Like -
Helpful -
Hug
1 ReactionI am going to be put on a prescription called Tibsovo. It has shown results to shrink tumors like mine.
There are members talking about Tibsovo, albeit for bile duct cancer, in this discussion:
- Anyone taking tibsovo for bile duct cancer?
https://connect.mayoclinic.org/discussion/anyone-taking-tibsovo-for-bile-duct-cancer/
Tibsovo (ivosidenib tablets) is an IDH1 inhibitor and I understand it is showing to be effective for some brain tumors. I'm glad you have access to it. I'll be interested to hear how you're doing as you start treatment.